Kirby, Emma; Kenny, Katherine; Broom, Alex; MacArtney, John; Good, Phillip
Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support. This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Systematic pre-bereavement planning and careful communication about the services offered by
Aoun, Samar M; Ewing, Gail; Grande, Gunn; Toye, Chris; Bear, Natasha
The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Nielsen, Mette Kjærgaard
Objective Family caregivers of terminally ill patients are in a vulnerable position, and previous studies show that bereaved caregivers are at risk of psychological distress. Pre-loss grief symptoms seem to predict post-loss psychological distress, while preparedness for a looming loss tends...... to decrease distress. The aim of this nation-wide study was to investigate the association of both anticipatory grief symptoms and preparedness with psychological distress in bereaved family caregivers. Methods A list of all adult patients in Denmark receiving drug reimbursement for terminal illness...... was retrieved from the Danish Health and Medicines Authority on a weekly basis during 2012. All newly registered patients were requested by letter to pass on an enclosed baseline questionnaire to their closest relative. Responding caregivers bereaved within six months received a follow-up questionnaire six...
Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.
Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…
Piil, Karin; Nordentoft, Sara; Larsen, Anders
)) experience and manage their life situation after the death of the patient. METHODS: A systematic literature search was carried out in December 2016 and revised in September 2017. The following six databases were searched: PubMed, Cumulative Index of Nursing and Allied Health Literature, Excerpta Medica...... and their role as caregiver. Moreover, they experienced depressive symptoms and fatigue, resulting in a reduced work capability and social network. CONCLUSIONS: We conclude that bereaved informal caregivers experience psychosocial consequences and emotional reactions after bereavement, resulting in feelings...
Thomsen, Kia Toft; Guldin, Mai-Britt; Nielsen, Mette Kjærgaard
the feasibility of an intervention based on key elements of the "Bereavement support standards for specialist palliative care services" in a Danish specialised palliative home care team. We followed the UK Medical Research Council's guidelines for the process evaluation of complex interventions. The intervention...... was established according to the intervention blueprint for 62% of caregivers receiving targeted support. After managing initial challenges, palliative care staff reported that the intervention was useful and acceptable. CONCLUSION: The intervention proved feasible and useful. Still, we identified barriers...
Harrop, Emily; Morgan, Fiona; Byrne, Anthony; Nelson, Annmarie
Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.
Neilson, SJ; Gibson, F; Greenfield, SM
Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the\\ud role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents.\\ud Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents\\ud following the death. A grounded theory data analysis was undertaken; identifying...
Kenner, C; Press, J; Ryan, D
Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations.
Neilson, Sue J; Gibson, Faith; Greenfield, Sheila M
This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members.
Matsushima, T; Akabayashi, A; Nishitateno, K
In order to explore the implementation of bereavement care in hospice/palliative care settings in Japan, a self-administered questionnaire was sent to all 54 government-approved hospice/palliative care units (PCUs) in May of 1999 (recovery rate 93%). Results showed that bereavement follow-up is performed in 37 institutes (74%) and memorial cards and services are most frequently provided. Memorial cards are provided mainly by nurses, and memorial services involve many health care professionals as well as volunteers. Religious workers tended to be involved in memorial services and social group meetings. Individually oriented interventions such as telephone contacts, personal visits and personal counselling were reportedly used less often. The need for individual-oriented programmes was recognized, and many institutes were considering the expansion of their programmes to include them. However, the difficulties of implementing such care at hospice/PCUs were also raised. Two socio-cultural factors possibly affecting bereavement care in Japan, namely, the roles of family and religious (Buddhist) ceremonies were discussed. It was pointed out that the spirit of bereavement care may be embodied in existing religious ceremonies. We conclude that it is necessary to develop bereavement care programmes based on common, basic hospice care tenets while making full use of existing local resources and taking into account regional values.
Potvin, Noah; Bradt, Joke; Ghetti, Claire
Over the past decade, caregiver pre-bereavement has received increased scholarly and clinical attention across multiple healthcare fields. Pre-bereavement represents a nascent area for music therapy to develop best practices in and an opportunity to establish clinical relevancy in the interdisciplinary team. This study was an exploratory inquiry into the role of music therapy with pre-bereaved informal hospice caregivers. This study intended to articulate (a) what pre-bereavement needs are present for informal hospice caregivers, (b) which of those needs were addressed in music, and (c) the process by which music therapy addressed those needs. A constructivist grounded theory methodology using situational analysis was used. We interviewed 14 currently bereaved informal hospice caregivers who had participated in music therapy with the care recipient. Analysis resulted in a theoretical model of resource-oriented music therapy promoting caregiver resilience. The resource, caregivers' stable caring relationships with care recipients through their pre-illness identities (i.e., spouse, parent, or child), is amplified through music therapy. Engagement with this resource mediates the risk of increased care burden and results in resilience fostering purposefulness and value in caregiving. Resource-oriented music therapy provides a unique clinical avenue for supporting caregivers through pre-bereavement, and was acknowledged by caregivers as a unique and integral hospice service. Within this model, caregivers are better positioned to develop meaning from the experience of providing care through the death of a loved one.
... as a mental, physical, social or emotional reaction. Mental reactions can include anger, guilt, anxiety, sadness and despair. Physical reactions can include sleeping problems, changes in appetite, physical problems or illness. How long bereavement lasts can depend on how ...
Piil, Karin; Jarden, Mary
PURPOSE: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have...... care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations....
Limardi, Stefano; Stievano, Alessandro; Rocco, Gennaro; Vellone, Ercole; Alvaro, Rosaria
To describe a research protocol designed to formulate a conceptual framework of informal caregiver resilience in palliative care. Resilience is the ability to adapt or to improve one's own conditions following experiences of adversity. The end-of-life care provided by informal caregivers is a form of adversity because it entails objective difficulties, emotional involvement and deep levels of introspection that have been stimulated by the death event. Resilience has not yet been addressed in association with end-of-life care. This is a multicentre cross-sectional study. We will administer a questionnaire to a sample of informal end-of-life caregivers to collect data about the main psychological, behavioural and healthcare factors that impact resilience. Data analysis will include descriptive and correlational statistical techniques, multiple linear regressions and structural equation modelling. Data will be collected in multiple palliative care centres and statistical analysis will be carried out using software: SPSS version 19.0 and MPlus version 7.3. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship in Italy (Research Grant number 2.13.10) that was awarded in March 2013. The study seeks to identify the predictive, mediating and moderating roles of select variables: caregivers' self-efficacy, burdens of caregiving, depression and resilience. The results of this analysis will impact the theoretical study of resilience in palliative care and will have practical implications for interventions aimed at supporting caregivers through healthcare teams. © 2015 John Wiley & Sons Ltd.
Jho, Hyun Jung; Chang, Yoon Jung; Song, Hye Young; Choi, Jin Young; Kim, Yeol; Park, Eun Jung; Paek, Soo Jin; Choi, Hee Jae
We aimed to explore the perceived timeliness of referral to hospice palliative care unit (HPCU) among bereaved family members in Korea and factors associated therewith. Cross-sectional questionnaire survey was performed for bereaved family members of patients who utilized 40 designated HPCUs across Korea. The questionnaire assessed whether admission to the HPCU was "too late" or "appropriate" and the Good Death Inventory (GDI). A total of 383 questionnaires were analyzed. Of participants, 25.8 % replied that admission to HPCU was too late. Patients with hepatobiliary cancer, poor performance status, abnormal consciousness level, and unawareness of terminal status were significantly related with the too late perception. Family members with younger age and being a child of the patient were more frequently noted in the too late group. Ten out of 18 GDI scores were significantly lower in the too late group. Multiple logistic regression analysis revealed patients' unawareness of terminal status, shorter stay in the HPCU, younger age of bereaved family, and lower scores for two GDI items (staying in a favored place, living without concerning death or disease) were significantly associated with the too late group. To promote timely HPCU utilization and better quality of end of life care, patients need to be informed of the terminal status and their preference should be respected.
Schoenfelder, Erin N.; Sandler, Irwin N.; Millsap, Roger E.; Wolchik, Sharlene A.; Berkel, Cady; Ayers, Timothy S.
The study developed a multi-dimensional measure to assess participant responsiveness to a preventive intervention, and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 ca...
Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde
care setting to explore barriers and facilitators for delivery of good palliative home care. Methods: Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark. Results: Three main categories of experience were identified: 1) The health professionals' management, where...
O'Callaghan, Clare C.; McDermott, Fiona; Hudson, Peter; Zalcberg, John R.
This study examines music's relevance, including preloss music therapy, for 8 informal caregivers of people who died from cancer. The design was informed by constructivist grounded theory and included semistructured interviews. Bereaved caregivers were supported or occasionally challenged as their musical lives enabled a connection with the…
The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): views about legalization of death with dignity and euthanasia among the bereaved whose family member died at palliative care units.
Okishiro, Nao; Miyashita, Mitsunori; Tsuneto, Satoru; Sato, Kazuki; Shima, Yasuo
There has been a debate in appropriateness of legalization of death with dignity and euthanasia in Japan. To clarify views about these issues, we conducted a large nationwide study of the bereaved whose family member died at palliative care units. The percentages of 429 bereaved family members (response rate 65%) who affirmed legal authorization were 52 for death with dignity and 45 for euthanasia and who affirmed assignment at the discretion of the physician involved were 37 for death with dignity and 38 for euthanasia. In conclusion, views about legalization of death with dignity and euthanasia among the bereaved are inconsistent. No consensus is reached as to legislation of these issues.
Henriksson, Anette; Årestedt, Kristofer
Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.
F.E. Witkamp (Frederika); L. van Zuylen (Lia); C.C.D. van der Rijt (Carin); A. van der Heide (Agnes)
textabstractBackground: To improve the quality of end-of-life care, hospitals increasingly appoint palliative care nurse champions. Aim: We investigated the effect of nurse champions on the quality of life during the last 3 days of life and the quality of dying as experienced by bereaved relatives.
Background A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve interviews with staff and
van der Heide Agnes
Full Text Available Abstract Background A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study, which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a focus groups with health care staff and bereaved informal care-givers; and b a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve
Pidgeon, Tanya M; Johnson, Claire E; Lester, Leanne; Currow, David; Yates, Patsy; Allingham, Samuel F; Bird, Sonia; Eagar, Kathy
ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the
Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)
Wright, Scott T; Kerr, Christopher W; Doroszczuk, Nicole M; Kuszczak, Sarah M; Hang, Pei C; Luczkiewicz, Debra L
Many recently bereaved persons experience vivid and deeply meaningful dreams featuring the presence of the deceased that may reflect and impact the process of mourning. The present study surveyed 278 bereaved persons regarding their own perspective of the relationship between dreams and the mourning process. Fifty eight percent of respondents reported dreams of their deceased loved ones, with varying levels of frequency. Most participants reported that their dreams were either pleasant or both pleasant and disturbing, and few reported purely disturbing dreams. Prevalent dream themes included pleasant past memories or experiences, the deceased free of illness, memories of the deceased's illness or time of death, the deceased in the afterlife appearing comfortable and at peace, and the deceased communicating a message. These themes overlap significantly with previous models of bereavement dream content. Sixty percent of participants felt that their dreams impacted their bereavement process. Specific effects of the dreams on bereavement processes included increased acceptance of the loved one's death, comfort, spirituality, sadness, and quality of life, among others. These results support the theory that dreams of the deceased are highly prevalent among and often deeply meaningful for the bereaved. While many counselors are uncomfortable working with dreams in psychotherapy, the present study demonstrates their therapeutic relevance to the bereaved population and emphasizes the importance for grief counselors to increase their awareness, knowledge, and skills with regards to working with dreams.
Jaffray, Linda; Bridgman, Heather; Stephens, Miranda
guidelines and a Narrative synthesis. Data sources: The Cochrane Library, CINAHL, MEDLINE, PsycINFO and EMBASE databases, searched from inception to February 2014 and references of included studies. Results: A total of 13 articles, reporting 10 studies (n = 432 participants) were included. All studies were......Background: There is a need to identify proactive, evidence-based interventions to support informal palliative caregivers. Mindfulness-based interventions, evidenced in the literature as providing physical and mental health benefits for diverse populations, may have application in the setting...... of palliative caregiving. Aim: To describe, evaluate and synthesise the peer-reviewed literature on the effects of mindfulness-based interventions for informal palliative caregivers. Design: A Systematic Literature Review according to the Preferred Reporting Items for Systematic Review and Meta Analyses...
Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Kang, Hee-Ju; Shin, Il-Seon; Shim, Hyun-Jeong; Cho, Sang-Hee; Chung, Ik-Joo; Yoon, Jin-Sang
This study investigated the determinants of a hopeful attitude among family caregivers involved with palliative care. We investigated a broad range of factors for the patient-family dyad in a palliative care setting using a cross-sectional design. The patients' sociodemographic, clinical and psychological factors were evaluated, as well as caregiver-related sociodemographic and psychological factors, including depressive symptoms, burden, coping style and religiosity. Caregivers were divided into two groups based on a hopeful or nonhopeful attitude and assessed using the abbreviated version of the seven-item Beck Hopelessness Scale (BHS-7). Of 304 analyzed dyads, 210 (69.1%) caregivers showed a hopeful attitude, with a BHS-7 score of 0. The adjusted logistic regression analyses showed that caregivers' hopeful attitude was determined by only their psychological status: less depressive symptoms [odds ratio (OR), 0.86; 95% confidence interval (CI), 0.83-0.90], active coping strategy (OR, 1.12; 95% CI, 1.07-1.18) and lower burden (OR, 0.93; 95% CI, 0.88-0.99). In a subpopulation analysis (n=200), higher religiosity was a significantly associated factor. Healthcare providers need to pay attention to the psychological vulnerability of caregivers to encourage a hopeful attitude. Additional studies of longitudinal design for hopeful attitude throughout the trajectory of palliative care are necessary. Copyright © 2014 Elsevier Inc. All rights reserved.
D'Angelo, Daniela; Mastroianni, Chiara; Artico, Marco; Biagioli, Valentina; Latina, Roberto; Guarda, Michela; Piredda, Michela; De Marinis, Maria Grazia
Patients suffering from advanced disease face different care transitions. The transition from acute to palliative care is challenging and may lead to the discontinuity of care. Family caregivers become important sources of information, as patients begin to experience difficulties in coping with emotional transition events. The Care Transition Measure was developed to evaluate care transitions as experienced by the elderly. It has never been used in palliative care. The aim of this study was to test the validity and reliability of a modified version of the Palliative Care Transition Measure, specifically the Palliative Care Transition Measure for Caregivers (PCTM-C). The study included two main phases. Phase I focused on the construction of a modified version of the Palliative Care Transition Measure through two focus groups and by computing the content validity index. Phase II focused on testing the psychometric properties of the PCTM-C on 272 family caregivers through confirmatory factor analysis. Result The content validity index for each of the items was higher than 0.80, whereas that for the scale was 0.95. The model tested with confirmatory factor analysis fitted the data well and confirmed that the transition measures referred to communication, integrated care and a trusting-relationship, and therefore the core dimensions of continuity according to existing conceptual models. The internal consistency was high (Cronbach's alpha = 0.94). Significance of results The PCTM-C proved to be a suitable measure of the quality of such transitions. It may be used in clinical practice as a continuity quality indicator and has the potential to guide interventions to enhance family caregivers' experience of care continuity.
Fernández-Isla, L E; Conde-Valvis-Fraga, S; Fernández-Ruíz, J S
To determine the satisfaction of main caregivers of deceased patients followed-up by palliative care teams. Web research on electronic data bases: PubMed and MEDES, using "Palliative Care" and "Patient Satisfaction" as main descriptors, and "Family", "Professional-Family Relations", "Quality of Health Care" and "Quality Assurance, Health Care" as secondary descriptors. Studies written in Spanish and English were included. Profile of principal caregiver: a woman between her mid-forties and her mid-fifties, usually related with the patient as a daughter, and of primary educational level. The items that the main caregivers valued the most were: a kind manner, feeling free to ask questions about problems during the process, tactful explanations, receiving information, pain management, time for answering questions, interest for emotional problems, and information about treatment. The worse valued items were: symptoms control, lack of psychological support after death, preparation for a death of a relative, keeping in touch after death, help to resolve outstanding issues, and help during grief. In general, a great majority of palliative care teams achieved excellent results. In spite of the good results obtained in satisfaction surveys from caregivers with regard to palliative care teams, it is essential to improve the quality of scientific-technical training (both from the medical and the psychological point of view), as well as to improve communicational skills among palliative care staff. Copyright © 2016 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.
Ensuring patients are comfortable in bed is key to effective palliative care, but when moving and positioning patients in bed, health professionals face an occupational risk of injury. The turning and positioning (TAP) system is a new method of moving patients in bed, that evidence has shown to reduce the risk of injury to caregivers. Providing the correct bed surface is another aspect of bed care essential to the comfort of the palliative patient, and to aid wound prevention and treatment. It is important to take a patient-centred approach when considering the most appropriate bed surface patients. This article provides an overview and discussion of these two aspects of bed care for palliative patients.
Gardiner, Clare; Allen, Ruth; Moeke-Maxwell, Tess; Robinson, Jackie; Gott, Merryn
The financial impact of family caregiving in a palliative care context has been identified as an issue which requires further research. However, little is known about how research should be conducted in this area. The aim of this study was to explore the opinions of family caregivers in New Zealand regarding the need to conduct research relating to the financial costs of family caregiving and to explore their perspectives on acceptable and feasible methods of data collection. A qualitative study design was adopted. Semistructured interviews were conducted with 30 family caregivers who were either currently caring for a person with palliative care needs or had done so in the past year. All participants felt that research relating to the costs of family caregiving within a palliative care context was important. There was little consensus regarding the most appropriate methods of data collection and administration. Online methods were preferred by many participants, although face-to-face methods were particularly favoured by Ma¯ori participants. Both questionnaires and cost diaries were felt to have strengths and weaknesses. Prospective longitudinal designs are likely to be most appropriate for future research, in order to capture variations in costs over time. The lack of consensus for a single preferred method makes it difficult to formulate specific recommendations regarding methods of data collection; providing participants with options for methods of completion may therefore be appropriate. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Full Text Available Background Death of a child with cancer is one of the most painful events that results in traumatic reactions of bereavement. Care should be taken into account during the bereavement period. The present study aimed to develop bereavement care in Iran and comparing it with Jordan, England, Australia and Canada, which have achieved the desired situation in the above area. Materials and Methods In this comparative study, the necessary data was made to databases of reputable and sovereign centers of the countries and palliative care programs. After accessing the pioneering patterns of world-wide palliative care, Iran's palliative care program, which came from children's service centers and access to the databases of those centers, was also examined. Results In the developed countries of Canada, England and Australia, a wide range of bereavement care is provided in care facilities. for example following the death of a child, in Canada family members are covered by all the bereavement care, in Australia formal caregivers increase their relationship with parents and are available to listen to feelings and in England all family members are supported. Jordan provides significant services in this regard such as visits at the bereavement ceremony, however, it is provided limitedly only in one center in Iran. Conclusion In the developed countries, pediatric palliative care is well developed. But in some developing countries, including Iran, there are only a few of these services for dying children and their families. As a result, the traumatic results emerge in social and family life activities.
Edghill, Angela; Donohoe, Miriam
The 2015 palliative care budget is €72 million (Euros) but up to €1.3 billion spent on end of life care annually - much of this larger figure unplanned and uncoordinated. Geographic and other inequities evident in palliative care provision. Build support for the development and implementation of a National Strategy on Palliative Care, End of Life and Bereavement. Multi-layered approach to raising awareness and building consensus: Targeting the correct audience who can make change happen Presenting robust evidence including costs justifying reform and investment Demonstrating that issues affect a significant number of people Sharing experience and knowledge Knowing their policy priorities Staying resilient - advancing and introducing new angles to argument Engaging directly as advocates within the political system at all political levels - developing relationships with politicians Identifying advocates in the public service to promote policy change Using a variety of new and existing projects and programmes Encouraging patients and families to be self-advocates - using a novel project for discussing and recording future care preferences Supporting healthcare professionals to become effective advocates for patients Creating alliances to lobby for policy development Using media opportunities to sell the message The recognition of the importance of a strategic approach to palliative and end of life care acknowledged in Parliamentary Committee Report affords an opportunity to develop further policy and practice. This a long - term exercise, dependent on supporting the implementation plan, building momentum and promoting a public dialogue on sensitive issues around dying, death and bereavement. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
von Heymann-Horan, Annika Berglind; Puggaard, Louise Berg; Nissen, Kathrine Grovn
Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We...... present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. The Domus model of SPC for patients with incurable cancer...... and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate...
Penman, Joy; Ellis, Bronwyn
This paper aims to clarify our understanding of fear and explore the strategies employed by people with life-limiting conditions and their caregivers in addressing the emotion of fear as they journey through the dying process. The role of fear is discussed: different kinds of fear, the tangible and intangible measures by which people manage their fear, and the ways of transcending fear. The findings of a larger research project funded by the Australian Department of Health and Ageing are drawn upon. In-depth interviews were conducted with clients and caregivers relating to the psychosocial and emotional issues in palliative care. Secondary analysis was utilized to examine the perceptions of fear in this cohort. While there were many other findings, the results highlighted in this paper relate to the notion of fear among interview participants. Interview data showed that people with life-limiting conditions and their caregivers had different types of fear and employed a variety of strategies to deal with fear. Four themes emerged embodying these strategies: calling on their own resilience and inner resources, maintaining human relationships, gaining the ability to "keep one step ahead" in the dying process, and engaging in spirituality and religion. The implications of the findings for healthcare professionals are highlighted. The recognition of emotions is embedded in palliative care; healthcare professionals should view the management of emotions as an integral part of professional practice. Addressing fear is essential because unresolved fear can impinge on one's ability to cope. Our paper brings together different perspectives on fear and how vulnerable individuals attempt to cope with it while at the same time providing a view of the challenges confronting healthcare professionals who are engaged with them and committed to optimizing health outcomes for palliative care clients and their caregivers.
Kreyer, Christiane; Pleschberger, Sabine
Family caregivers play a key role in palliative home care for persons with advanced cancer. Although research has shown numerous burdens and strains of family caregiving, there is a lack of family-oriented support strategies in palliative home care. Little is known about family caregivers' self-management in this context so far. Qualitative research provides insight into families' perspectives of the transition to and management of palliative care at home and can be used as a starting point. The aim of the study was to increase knowledge of family caregivers' self-management in palliative home care by synthesizing evidence from qualitative research. Based on a systematic review of literature a meta-synthesis was conducted following the approach of Noblit and Hare (1988). A total of 13 qualitative studies from six countries, published from 2002 onward, formed the basis for an interpretative synthesis. Caring for a person with advanced cancer at the end of life at home is characterized by an instable transition process in which families are 'struggling for normal'. Six different family self-management strategies to deal with this were identified: acknowledging the transition, restructuring everyday life, maintaining balance in family relationships, taking responsibility for care, using social support, and acquiring caring-skills. Self-management strategies may provide a key for supporting family caregivers in palliative home care by focusing on resources and problem solving skills of families.
The aims of this article are to explore the experience of depression among palliative care clients and caregivers, describe the strategies they use in coping with depression, and clarify the role of spirituality in preventing and/or overcoming depression. This article discusses an aspect of the findings of a larger doctoral study that explored the nature of spirituality and spiritual engagement from the viewpoint of individuals with life-limiting conditions and their caregivers. van Manen's phenomenology was used in the study. The data generated from the doctoral study were subjected to secondary analysis to uncover the experience of depression. The methodology underpinning the secondary analysis was phenomenology also by van Manen. Fourteen clients and caregivers from across regional and rural South Australia informed the study. Data collection involved in-depth nonstructured home-based interviews that were audiotaped and transcribed verbatim. The findings highlighted relate to participants succumbing to depression, but having spiritual beliefs and practices helped them cope. One of the most insightful understanding was the role spirituality played in protecting individuals from depression, encapsulated in the theme "finding paradise within." Spirituality, understood from a religious or secular perspective, must be embedded in palliative care as it assisted in preventing and overcoming depression.
Guldin, Mai-Britt; Murphy, Irene; Keegan, Orla
The Bereavement Care Taskforce of the EAPC has conducted a survey on bereavement care service provision in Europe. Mai-Britt Guldin, Irene Murphy, Orla Keegan, Barbara Monroe, Maria Antonia Lacasta Reverte and Inger Benkel report on the results. One of the key findings is that not all palliative...
Verberne, Lisa M; Kars, Marijke C; Schouten-van Meeteren, Antoinette Y N; Bosman, Diederik K; Colenbrander, Derk A; Grootenhuis, Martha A; van Delden, Johannes J M
In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life. Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands. • Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance. • Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life. • Professionals need insight into the parents' aims and tasks from the parental perspective to strengthen parents' resilience.
Full Text Available Acquired immunodeficiency syndrome (AIDS continues to be a serious public health issue, and it is often the caregivers who carry the brunt of the epidemic. Caregivers of people with AIDS face distinctive demands that could make them more prone to occupational stress, with serious consequences for their psychosocial well-being. The impact of caring for people living with HIV infection on the psychosocial well-being of palliative caregivers was investigated using in-depth interviews and questionnaires in 28 participants. The results indicated no burnout, but occupational stress was prevalent. Factors impacting negatively on well-being were stressors inherent in AIDS care, such as suffering and dying of the persons being cared for, work-related stressors such as heavy workload, lack of support and ineffective coping mechanisms. Positive aspects of caring such as job satisfaction, holistic palliative care, effective coping mechanisms and psychosocial support were identified. Recommendations to curb the negative effects of caregiving are provided.
Sarmento, Vera P; Gysels, Marjolein; Higginson, Irene J; Gomes, Barbara
To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users. We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services. 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home. Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
. Family caregiving has become an important issue of palliative care. The purposes of this study were: 1 to identify salient issues of caregiving for family members of palliative care patients and 2 to propose a classification based on different profiles of caregivers. The research was exploratory-descriptive, based on a flexible design, specifically case studies. Caregivers (n=50 were selected randomly among relatives of home. Palliative care patients attended in the Lanari Institute (University of Buenos Aires, Argentina during 2007-2008. Qualitative data were gathered through unstructured, open ended interviews in the home setting. Quantitative data were collected with a self-completion questionnaire and were analyzed with SPSS (12.01. Three dimensions were evaluated: a attitudes of the caregiver towards the treatments, b perceptions of the caregivers of the needs and wishes of the patient and c evaluation of their own role as caregiver. Four types of informal caregivers were identified: 1 satisfactory carers, based on a well-organized system of relatives and friends involved in the caring situation, 2 potentially vulnerable carers, those involved in situations apparently controlled, but with factors which could trigger a spiral of deterioration, 3 overwhelmed carers, who explicitly express difficulties in being able to achieve the daily goals for the patients´ comfort and 4 isolated carers, composed by lonely wives wishing "not to bother" others.
Giesbrecht, Melissa; Wolse, Faye; Crooks, Valorie A; Stajduhar, Kelli
In Canada, friends and family members are becoming increasingly responsible for providing palliative care in the home. This is resulting in some caregivers experiencing high levels of stress and burden that may ultimately surpass their ability to cope. Recent palliative care research has demonstrated the potential for caregiver resilience within such contexts. This research, however, is primarily focused on exploring individual-level factors that contribute to resilience, minimizing the inherent complexity of this concept, and how it is simultaneously influenced by one's social context. Therefore, our study aims to identify socio-environmental factors that contribute to palliative family caregiver resilience in the Canadian homecare context. Drawing on ethnographic fieldnotes and semistructured interviews with family caregivers, care recipients, and homecare nurses, this secondary analysis employs an intersectionality lens and qualitative case study approach to identify socio-environmental factors that facilitate family caregivers' capacity for resilience. Following a case study methodology, two cases are purposely selected for analysis. Findings demonstrate that family caregiver resilience is influenced not only by individual-level factors but also by the social environment, which sets the lived context from which caregiving roles are experienced. Thematic findings of the two case studies revealed six socio-environmental factors that play a role in shaping resilience: access to social networks, education/knowledge/awareness, employment status, housing status, geographic location, and life-course stage. Findings contribute to existing research on caregiver resilience by empirically demonstrating the role of socio-environmental factors in caregiving experiences. Furthermore, utilizing an intersectional approach, these findings build on existing notions that resilience is a multidimensional and complex process influenced by numerous related variables that intersect
Cloyes, Kristin G; Hull, William; Davis, Andra
To identify the unique needs of lesbian, gay, bisexual, and transgender (LGBT) cancer patients and caregivers, and review recommendations supporting more effective and inclusive palliative and end-of-life care. Published research and clinical guidelines. Transitions in care raise particular challenges for LGBT patients, including provider communication, perceptions of safety and acceptance, and assessing and respecting patients' definitions of family and spirituality. LGBT patients and their caregivers need competent nurses to support them, especially during transitions. Implementing LGBT-inclusive education, training, and practice will improve outcomes for LGBT cancer patients and their caregivers - and potentially all patients. Copyright © 2017 Elsevier Inc. All rights reserved.
Fatigue in Advanced Cancer Patients: Congruence Between Patients and Their Informal Caregivers About Patients' Fatigue Severity During Cancer Treatment With Palliative Intent and Predictors of Agreement
Poort, Hanneke; Peters, Marlies E. W. J.; Gielissen, Marieke F. M.; Verhagen, Constans A. H. H. V. M.; Bleijenberg, Gijs; van der Graaf, Winette T. A.; Wearden, Alison J.; Knoop, Hans
Informal caregivers (ICs) are increasingly involved in the monitoring of symptoms during advanced cancer patients' treatment with palliative intent. A common but subjective symptom during this extended treatment phase is fatigue. This exploratory longitudinal study aimed to determine agreement
Fatigue in Advanced Cancer Patients: Congruence Between Patients and Their Informal Caregivers About Patients' Fatigue Severity During Cancer Treatment With Palliative Intent and Predictors of Agreement
Poort, H.; Peters, M.E.W.J.; Gielissen, M.F.M.; Verhagen, C.A.H.H.V.M.; Bleijenberg, G.; Graaf, W.T.A. van der; Wearden, A.J.; Knoop, H.
CONTEXT: Informal caregivers (ICs) are increasingly involved in the monitoring of symptoms during advanced cancer patients' treatment with palliative intent. A common but subjective symptom during this extended treatment phase is fatigue. OBJECTIVES: This exploratory longitudinal study aimed to
Hudson, Peter; Aranda, Sanchia
Background A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. Purpose To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Methods Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Results Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. Conclusions The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. PMID:24644195
Gomes, Barbara; Calanzani, Natalia; Curiale, Vito; McCrone, Paul; Higginson, Irene J
Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive
Full Text Available BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs, controlled clinical trials (CCTs, controlled before and after studies (CBAs and interrupted time series (ITSs evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs for the primary outcome (death at home. MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality, including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure
Conclusion: Life and work experience improve the accuracy of medical staff in providing hospice palliative care. A culture-based, case-oriented continuing education program and a timely revision of the Hospice Palliative Care Article are recommended to increase the consistency between the principle and the practice of hospice palliative care.
Hudson, Peter; Aranda, Sanchia
A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers' preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Gardiner, Clare; Brereton, Louise; Frey, Rosemary; Wilkinson-Meyers, Laura; Gott, Merryn
The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost
Weaver, Meaghann S; Wichman, Brittany; Bace, Sue; Schroeder, Denice; Vail, Catherine; Wichman, Chris; Macfadyen, Andrew
The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage ( P home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.
Kristanti, M.S.; Setiyarini, S.; Effendy, C.
BACKGROUND: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family
Allen, Ruth; Moeke-Maxwell, Tess; Gardiner, Clare; Robinson, Jackie
Background: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. Aim: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. Design: In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Setting: Auckland, New Zealand. Findings: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Conclusion: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. PMID:25680378
Gott, Merryn; Allen, Ruth; Moeke-Maxwell, Tess; Gardiner, Clare; Robinson, Jackie
There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Auckland, New Zealand. Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. © The Author(s) 2015.
Mackinnon, Christopher J
Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives. Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship. The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex. The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.
Brinkkemper, Tijn; Rietjens, Judith A C; Deliens, Luc; Ribbe, Miel W; Swart, Siebe J; Loer, Stephan A; Zuurmond, Wouter W A; Perez, Roberto S G M
Comparing characteristics of a favorable sedation course during palliative sedation to a less favorable course based on the reports Dutch physicians and nurses. Cases identified as having a favorable sedation course less often concerned a male patient (P = .019 nurses' cases), reached the intended sedation depth significantly quicker (P sedation (P = .015 physicians' cases), and had a shorter total duration of sedation compared (P sedation course. A favorable course during palliative sedation seems more probable when health care professionals report on a (relatively) shorter time to reach the required depth of sedation and when a deeper level of sedation can be obtained. © The Author(s) 2013.
Brinkkemper, T.; Rietjens, J.A.C.; Deliens, L.; Ribbe, M.W.; Swart, S.J.; Loer, S.A.; Zuurmond, W.W.A.; Perez, R.S.G.M.
Objective:Comparing characteristics of a favorable sedation course during palliative sedation to a less favorable course based on the reports Dutch physicians and nurses.Results:Cases identified as having a favorable sedation course less often concerned a male patient (P = .019 nurses' cases),
... care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. They provide holistic care to the patient and family or caregiver ...
Mehta, Anita; Cohen, S Robin; Carnevale, Franco A; Ezer, Hélène; Ducharme, Francine
The purpose of this grounded theory study was to understand the processes used by family caregivers to manage the pain of cancer patients at home. A total of 24 family caregivers participated. They were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews and field notes. Data analysis was based on Strauss and Corbin's (1998) requirements for open, axial, and selective coding. The result was an explanatory model titled "the puzzle of pain management," which includes four main processes: "drawing on past experiences"; "strategizing a game plan"; "striving to respond to pain"; and "gauging the best fit," a decision-making process that joins the puzzle pieces. Understanding how family caregivers assemble their puzzle pieces can help health care professionals make decisions related to the care plans they create for pain control and help them to recognize the importance of providing information as part of resolving the puzzle of pain management.
Ullrich, Anneke; Ascherfeld, Lilian; Marx, Gabriella; Bokemeyer, Carsten; Bergelt, Corinna; Oechsle, Karin
This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for "bodily pain", FCs' quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80-83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs' satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.
Magdalena (Dalena van Rooyen
Full Text Available This research focused on the lived experiences of caregivers working with AIDS patients, particularly patients who die from this disease whilst resident in a formal institution. A qualitative, exploratory, descriptive, and contextual research design with a phenomenological approach to inquiry was utilised. Thirteen unstructured interviews, which were audio-taped, were conducted with caregivers working full-time in a formal institution caring for patients who are dying from AIDS. The transcribed interviews were analysed using Tesch’s method of descriptive analysis (in Creswell 1994:115. One central theme emerged, namely that in their daily duty (at their place of work, caregivers experienced various challenges as a result of having to deal with the death of their patients suffering from AIDS, and five sub-themes were formulated from further analysis. The five subthemes were: • Caregivers experienced emotional challenges in caring for patients dying of AIDS; • Caregivers experienced a difference in death and dying of adults as apposed to children; • Caregivers experienced the rationalisation of death and dying differently; • Caregivers experienced that faith in God give them strength to cope with death and dying; • Caregivers experienced caring for patients as fulfilling and meaningful to them despite the sadness of death and dying. The participants face the death of their patients daily, from a disease that causes untold suffering to the patients, family members and to the caregivers themselves, who wish they could prevent the anguish, the pain and the inability of the medical profession to do more than they are at present towards curing this disease. They described their emotional experiences, which included the various challenges that they face as a result of having to deal with the death and dying of their patients suffering from AIDS. The information shared by these participants formed the foundation of the broad guidelines that
S M Kang′ethe
Full Text Available The aim of this research paper is to explore the dangers of involving children as family caregivers of palliative care and home-based-care to advanced HIV/AIDS patients, while its objective is to discuss the dangers or perfidiousness that minors especially the girl children face as they handle care giving of advanced HIV/AIDS patients. The article has relied on eclectic data sources. The research has foundminors disadvantaged by the following: being engulfed by fear and denied rights through care giving; being emotionally and physiologically overwhelmed; being oppressed and suppressed by caring duties; being at risk of contracting HIV/AIDS; and having their education compromised by care giving. The paper recommends: (1 strengthening and emphasizing on children′s rights; (2 maintaining gender balance in care giving; (3 implementation and domestication of the United Nations conventions on the rights of children; (4 community awareness on equal gender co participation in care giving; (5 and fostering realization that relying on child care giving is a negative score in fulfilling global Millennium Development Goals.
OBJECTIVE: To describe the unique aspects of childhood grief. To provide a framework for family physicians to use in assisting children to grieve. QUALITY OF EVIDENCE: A MEDLINE search from 1966 to 1999 using the key words children, childhood, grief, mourning, and bereavement revealed mainly expert opinion articles, some non-randomized observational studies, and retrospective case-control studies. MAIN MESSAGE: Although children are influenced by similar factors and need to work through the s...
Kristanti, Martina Sinta; Setiyarini, Sri; Effendy, Christantie
Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031). Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of
Philip, Rekha Rachel; Philip, Sairu; Tripathy, Jaya Prasad; Manima, Abdulla; Venables, Emilie
The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013-2015. A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013-2015. While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013-15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months' post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged care-giver at home, 85% of these care-givers being female. The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a
Aslakson, Rebecca A; Dy, Sydney M; Wilson, Renee F; Waldfogel, Julie; Zhang, Allen; Isenberg, Sarina R; Blair, Alex; Sixon, Joshua; Lorenz, Karl A; Robinson, Karen A
Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools. Copyright © 2017 American Academy of Hospice and Palliative Medicine. All rights reserved.
Dhiliwal, Sunil R; Muckaden, Maryann
Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters. Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes. Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.
Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith
Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication
Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve
People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
Paiva, Bianca Sakamoto Ribeiro; Carvalho, André Lopes; Lucchetti, Giancarlo; Barroso, Eliane Marçon; Paiva, Carlos Eduardo
Within the cancer palliative care setting, where both patients and family caregivers (FCs) undergo a transition from the end of curative treatment to palliative therapy, spirituality and religiousness (S/R) may be a strategy to help the patients and FCs better cope with the disease, in addition to exerting a positive impact on symptoms, particularly emotional symptoms. The present study aimed to understand how S/R influence FCs of cancer patients undergoing palliative care. This study was an exploratory and descriptive qualitative study. The qualitative approach to the data was based on Bardin's content analysis technique. The consolidated criteria for reporting qualitative research (COREQ-32) was used in the description of the results. Thirty FCs of individuals with advanced cancer undergoing palliative care were included. Analysis of the FCs' narratives indicated that the FCs considered that religiousness and faith in God or a Supreme Being provide them with the strength to cope with the suffering associated with the care of relatives with advanced cancer. Many FCs emphasized that talking about God was somehow comforting and made them feel at peace with themselves. Four categories were identified in the FCs' narratives: (1) increase in faith and closeness to God becomes stronger, (2) rethink life issues, (3) negative interference in the extrinsic religiosity, and (4) quest for religiousness to gain strength or support. A conceptual framework was developed. The results of the present study indicated that S/R are a coping strategy frequently used by FCs of individuals with advanced cancer. The perceptions of the FCs interviewed in the present study corresponded to the four distinct categories related to spirituality and religiousness.
Dawber, R; Armour, K; Carter, C; Ferry, P; Meystre, C
Provision of information to patients and families is a priority of palliative care. Lack of information on symptoms, treatment and disease progress adversely affects patients' and caregivers' abilities to self manage and participate in decision making and care. Qualitative reports of end of life care suggest caregivers seek more information than patients. Ignorance of this need may hamper health promotion strategies and limitation of patient and caregiver morbidity during end of life and bereavement processes. To compare satisfaction of dying patients with information given; to proxy satisfaction estimates on the patient's behalf. Prospective study comparing assessment of satisfaction with information received by nurse, informal caregiver and dying patient (>64 years) in hospital. Assessments made within 24 h, using patient and caregiver versions of the palliative outcome scale (POS). weighted kappa for agreement between proxy and patient. Informal caregivers overestimate dissatisfaction with level of information given compared to patients. Weighted kappa patient versus ICG 0.187 (slight agreement), n = 50. The disparity between patient and proxy information satisfaction reflects the complexity of participatory strategies to limit morbidity at the end of life. Proxy over- estimation of patient dissatisfaction with information received may reflect the caregivers own dissatisfaction. As death approaches, caregivers require more information than patients, their burden increases and they become the interpreter of patient symptoms. Ignorance may lead to overestimation of symptoms, early breakdown of social care, and unplanned admission, risking death other than in the patients preferred place. Meeting caregiver information needs may reduce caregiver burden and improve proxy assessments, reducing patient and caregiver morbidity. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Rowland, Christine; Hanratty, Barbara; Pilling, Mark; van den Berg, Bernard; Grande, Gunn
Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or
Hagan, Melissa J.; Tein, Jenn-Yun; Sandler, Irwin N.; Wolchik, Sharlene A.; Ayers, Tim S.; Luecken, Linda J.
This study tested the effect of the Family Bereavement Program (FBP), a preventive intervention for bereaved families, on effective parenting (e.g., caregiver warmth, consistent discipline) 6 years after program completion. Families (n = 101; 69% female caregivers; 77% Caucasian, 11% Hispanic) with children between ages 8 and 16 who had…
Wallerstedt, Birgitta; Andershed, Birgitta; Benzein, Eva
To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service. Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation. Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received. Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.
Flavia Renata Fratezi
Full Text Available Este estudo teve como objetivos: identificar e analisar o significado do processo de morrer para cuidadores familiares de pacientes idosos em cuidados paliativos. Tratou-se de pesquisa qualitativa com utilização de entrevista. Os dados foram analisados por conteúdo. A presença de doenças crônicas que levam o idoso a necessitar de cuidados paliativos impõe sobre o cuidador familiar sentimentos complexos e ambivalentes. A proximidade e inevitabilidade da morte do idoso colaboram para intensificar esses sentimentos, mas possibilitam ao cuidador resignificar como vivencia essa experiência. Diante desta complexidade, torna-se evidente que a equipe paliativista precisa colaborar junto ao cuidador familiar, no sentido de tentar amenizar essa situação.This study sought to identify and analyze the significance of the process of dying for family caregivers of elderly patients in palliative care. It involved qualitative research with the use of interviews. The data were scrutinized by content analysis. The presence of chronic diseases that lead the elderly patient to require palliative care imposes a series of complex and ambivalent feelings on the family caregiver. The proximity and inevitability of death of the elderly patient exacerbate these feelings, but also lead the caregiver to reconsider how to handle this experience. Given this complexity, it becomes clear that the palliative tem need to work with family caregivers, to try to alleviate this situation.
Igarashi, Ayumi; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Sato, Kazuki; Yamamoto-Mitani, Noriko; Eguchi, Kenji
The sense of security scale was developed to indicate care quality within the community. Bereaved families have perspective to evaluate the quality of the care system. The aim was to examine associations between end-of-life care and sense of security regarding regional cancer care among bereaved families. A cross-sectional population-based survey was conducted with families of cancer patients who died in regional areas of Japan. A total of 1046 family caregivers of patients responded to surveys (effective response rate of 65%). In multiple regression analyses, the families' higher age (P patients' end of life (P = 0.016), lower caregiving burden (P patient death, including being free from physical distress (P security. Quality of death and lower burden on family caregivers were associated with families' sense of security. This suggests strategies for improving care quality for each patient to improve the sense of security. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Muhamad Zulfatul A’la
adalah melihat pengaruh bereavement life review untuk penyakit kronis yang lain, seperti diabetes melitus atau kanker. Selain itu, indikator psikologis pasien dan keluarga sebagai output intervensi perlu dikaji lebih mendalam. Kata kunci: Bereavement life review, keluarga pasien stroke, keperawatan spiritual, kesejahateraan paliatif. Influence of Bereavement Life Review on Spiritual Well-Being of Stroke Family Caregiver Abstract Spirituality is a protective factor of grieving process in patient and family with chronic illness. Bereavement life review is one of the interventions which is enhancing the spiritual well-being in cancer diseases. Cancer and Stroke are chronic diseases. The purpose of this study was to determine the effect of bereavement life review of the spiritual well-being of stroke family. Quasi-experimental with pretest posttest control group used in study. Sample in this study are stroke family who caring the stroke patient in hospital which is 28 respondents. The intervention group was given bereavement life review with two sessions which given by expert in psychiatric nursing. Spiritual well-being was measured by SWBS (spiritual well-being scale. Data analysis were using a dependent t-test, Mann Whitney and Wilcoxon. Homogenity of respondent characteristics showed that it have not correlation between control and intervention group (p > 0,05. The study showed the difference in the mean posttest scores of spiritual well-being of the control group with the intervention group (98.71 ± 3.65 and 106.5 ± 1.83, p = 0.000. There were differences in the mean scores pretest to posttest spiritual well-being in the intervention group (99.07 ± 2.95 and 106.5 ± 1.83, p = 0.001. Bereavement life review is a process of enhancing spirituality through recontextualization, forgiveness, and reflection proccess that strengthening coping process. Bereavement life review has positive effect on the spiritual well-being of the stroke family which can be considered as an
Fatigue in Advanced Cancer Patients: Congruence Between Patients and Their Informal Caregivers About Patients' Fatigue Severity During Cancer Treatment With Palliative Intent and Predictors of Agreement.
Poort, Hanneke; Peters, Marlies E W J; Gielissen, Marieke F M; Verhagen, Constans A H H V M; Bleijenberg, Gijs; van der Graaf, Winette T A; Wearden, Alison J; Knoop, Hans
Informal caregivers (ICs) are increasingly involved in the monitoring of symptoms during advanced cancer patients' treatment with palliative intent. A common but subjective symptom during this extended treatment phase is fatigue. This exploratory longitudinal study aimed to determine agreement between patients and ICs about patients' fatigue severity. In addition, predictors of agreement over time were studied. A sample of 107 patients with advanced cancer (life expectancy ≥ six months) and their ICs completed the subscale fatigue severity of the Checklist Individual Strength based on the patient's status at baseline and six months later. This eight-item subscale has a validated cutoff to determine the presence of clinically relevant levels of fatigue. ICs' own fatigue severity, strain, self-esteem, and relationship satisfaction were examined as predictors of agreement. A total of 107 dyads completed measures at baseline and 69 dyads six months later. At baseline, ICs' significantly overestimated patients' fatigue severity (P congruence about the presence or absence of severe fatigue. On a group level, congruence did not significantly change over time. On a dyad level, there was a tendency to either remain congruent or reach congruence. Next to baseline congruence, ICs' fatigue severity and strain predicted ICs' fatigue ratings (R(2) = 0.22). Most ICs accurately predict presence or absence of clinically relevant levels of patients' fatigue. ICs' own fatigue severity and strain should be taken into account as they influence agreement. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Dawber, Rebecca; Armour, Kathy; Ferry, Peter; Mukherjee, Bhaskar; Carter, Christopher; Meystre, Chantal
A prospective study of symptom assessments made by a healthcare professional (HCP; named nurse) and an informal caregiver (ICG) compared with that of the patient with a terminal diagnosis. To look at the validity of HCP and ICG as proxies, which symptoms they can reliably assess, and to determine who is the better proxy between HCP and ICG. A total of 50 triads of patient (>65 years) in the terminal phase, ICG and named nurse on medical wards of an acute general hospital. Assessments were made using the patient and caregiver versions of the palliative outcome scale (POS), all taken within a 24 h period. Agreement between patient-rated, ICG-rated and HCP-rated POS and POS for symptoms (POS-S) was measured using weighted-κ statistics. Demographic and clinical data on each group of participants were collected. ICG assessments have higher agreement with those of the patient than HCP. Better agreement in both groups was found for physical symptoms, and best agreement was for pain. The worst agreements were for psychological symptoms, such as anxiety and depression, and for satisfaction with information given. Psychological symptoms are overestimated by both ICG and HCP. ICGs are more reliable proxies than HCPs. A trend for overestimation of symptoms was found in both groups which may lead to undervaluation of the quality of life by proxy and overtreatment of symptoms. This highlights the need to always use the patient report when possible, and to be aware of the potential flaws in proxy assessment. Reasons for overestimation by proxies deserve further research. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Mathews, Gillian; Johnston, Bridget
The aim of the review was to explore patient and family caregiver perspectives on key issues for ensuring quality of end-of-life care for people with chronic obstructive pulmonary disease (COPD). The growing evidence on the value of specialist palliative care services demonstrates significant improvements in treatments and provisions; however, much of the literature is generic in nature or centred on people with a cancer diagnosis. In this review, we examine the literature to ascertain the views and needs of patients and carers affected by advanced COPD, a highly debilitating condition that can have a profoundly negative impact on the quality of end-of-life experience. A total of 19 papers were included in the review. The main themes in the literature were Holistic Care, Illness Trajectory and Technology. Areas of unmet need emphasized across physical, psychosocial and spiritual domains were identified, particularly in relation to appropriate and timely conversations. Positive developments in the care and treatment of advanced COPD include the use of the STIOLTO Respimat inhaler, a brief educative and psychosocial intervention based on cognitive-behavioural therapy, and high-intensity exercise training. There is some evidence regarding the use of technology in end-stage COPD.
Ozaki, Akihiko; Tsubokura, Masaharu; Leppold, Claire; Sawano, Toyoaki; Tsukada, Manabu; Nemoto, Tsuyoshi; Kosugi, Kazuhiro; Nishikawa, Yoshitaka; Kato, Shigeaki; Ohira, Hiromichi
The primary setting of palliative care has shifted from inpatient care to patients' residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. The patient was diagnosed with stage IV breast cancer. The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients' end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027
Hagan, Melissa J.; Tein, Jenn-Yun; Sandler, Irwin N.; Wolchik, Sharlene A.; Ayers, Tim S.; Luecken, Linda J.
This study tested the effect of the Family Bereavement Program (FBP), a preventive intervention for bereaved families, on effective parenting (e.g. caregiver warmth, consistent discipline) six years after program completion. Families (n=101; 69% female caregivers; 77% Caucasian, 11% Hispanic) with children between ages 8–16 who had experienced the death of one parent were randomized to the FBP (n=54) or a literature control condition (n=47). Multiple regression analyses conducted within a mul...
Full Text Available A ′need-supply′ and ′requirement-distribution mismatch′ along with a continuingneed explosion are the biggest hurdles faced by palliative medicine today. It is the need of the hour to provide an unbiased, equitable and evidence-based palliative care to those in need irrespective of the diagnosis, prognosis, social and economic status or geographical location. Palliative care as a fundamental human right, ensuring provision throughout the illness spectrum, global as well as region-specific capacity building, uniform availability of essential drugs at an affordable price, a multidisciplinary team approachand caregiver-support are some of the achievable goals for the future. This supplanted with a strong political commitment, professional dedication and ′public-private partnerships′ are necessaryto tackle the existing hurdles and the exponentially increasing future need. For effectively going ahead it is of utmost importance to integrate palliative medicine into medical education, healthcare system and societal framework.
Claessen, S.J.J.; Francke, A.L.; Sixma, H.J.; Veer, A.J.E. de; Deliens, L.
Context: A Consumer Quality Index (CQ-index) is a questionnaire assessing the actual care experiences and how important the recipient finds certain care aspects, as well as the priorities for improving quality. A CQ-index Palliative Care (CQ-index PC) for bereaved relatives was developed to measure
Ishida, Mayumi; Onishi, Hideki; Morita, Tatsuya; Uchitomi, Yosuke; Shimizu, Megumi; Tsuneto, Satoru; Shima, Yasuo; Miyashita, Mitsunori
The importance of communication between the cancer bereaved and others has been emphasized, but little is known about the more problematic aspects of this communication such as "unhelpful communication." The aim of this study was to establish which types of communication are perceived by the bereaved to be unhelpful. We conducted a cross-sectional, anonymous, nationwide survey at 103 certified hospice facilities/palliative care units in Japan. A total of 630 (63%) bereaved responded. Over 60% of the bereaved experiencing such communication considered it to be unhelpful, with the most unhelpful communication being "They emphasized the positive aspects of death." Thirteen items related to communication were separated into two factors ("advice for recovery" and "comments on cancer") by factor analysis. "Comments on cancer" were more unhelpful to them and were more often provided by those around them. With regard to "advice for recovery," losing a spouse was a stronger predictor with a higher odds ratio for communication distress than losing a parent (odds ratio, 5.34; 95% CI, 1.63-17.57). A number of the bereaved have experienced unhelpful communication regarding advice on dealing with bereavement and cancer. To prevent putting an unnecessary burden on the bereaved with such unhelpful communication, it is essential to understand problematic aspects. Even when people have no intention of hurting the bereaved, some communication may do so. Communication with the bereaved is also a core clinical skill required by health professionals, and further efforts are required to support the grieving process. Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.
Kearney, Joan A; Byrne, Mary W
The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care. A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern. The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions. The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research
Full Text Available Abstract Background Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1 many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2 patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3 no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. Methods/designs This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study
Hamdan, Sami; Melhem, Nadine M.; Porta, Giovanna; Payne, Monica Walker; Brent, David A.
Objective: To compare the phenomenology and course of bereavement-related depression to depression that occurred later in the course of bereavement and to depression in non-bereaved youth. Method: This sample is drawn from a cohort of parentally bereaved youth and non-bereaved controls followed for approximately 5 years. Three groups of depressed…
Bolton, James M; Au, Wendy; Leslie, William D
OUTCOME MEASURES Mental and physical disorders, social factors, and treatment use. RESULTS Suicide bereavement was associated with an increased rate of depression (ARR, 2.14; 95% CI, 1.88-2.43), anxiety disorders (ARR, 1.41; 95% CI, 1.24-1.60), and marital breakup (ARR, 1.18; 95% CI, 1.13-1.23) in the 2...... years after the suicide of an offspring, as compared with the 2 years prior to the death. Suicide-bereaved and MVC-bereaved parents had very few differences on predeath to postdeath outcomes. Depression rate increases were greater for MVC-bereaved parents (19.9%) compared with suicide-bereaved parents...... (15.9%; P = .005), whereas suicide-bereaved parents had higher rate increases of hospitalization for mental illness (P = .049). Suicide-bereaved parents were more likely than their MVC-bereaved counterparts to have depression (ARR, 1.30; 95% CI, 1.06-1.61), physical disorders (ARR, 1.32; 95% CI, 1...
This thesis is about improving aspects of palliative care for children, and covers three different areas of quality of care. First of all, palliative care should be anticipating. To be able to deliver this anticipating care, caregivers should know what to expect. The first two chapters of the thesis
Bailey, Eleanor; Krysinska, Karolina; O'Dea, Bridianne; Robinson, Jo
Bereavement by suicide is associated with a number of consequences including poor mental health outcomes and increased suicide risk. Despite this, the bereaved by suicide may be reluctant to seek help from friends, family, and professionals. Internet forums and social networking sites are a popular avenue of support for the bereaved, but to date there is a lack of research into their use and efficacy. To survey users of suicide bereavement Internet forums and Facebook groups regarding their help-seeking behaviors, use of forums, and perceived benefits and limitations of such use. This study employed a cross-sectional design in which users of suicide bereavement Internet forums and Facebook groups completed an anonymous online survey. Participants were 222 users of suicide bereavement Internet forums. Most participants (93.2%) had sought face-to-face help from sources other than Internet forums, but were more likely to seek help in the near future from informal rather than formal sources. Forums were perceived as highly beneficial and there were few limitations. The generalizability of these results to other internet forums may be limited. Additionally, we were not able to examine differences between forums in terms of quality or user-reported efficacy. Finally, the data reflects the subjective views of forum users, which may differ from the views of moderators or experts. Internet forums, including Facebook groups, appear to be a useful adjunct to face-to-face help-seeking for supporting those who have been bereaved by suicide.
Li, Jie; Stroebe, Magaret; Chan, Cecilia L W; Chow, Amy Y M
The rationale, development, and validation of the Bereavement Guilt Scale (BGS) are described in this article. The BGS was based on a theoretically developed, multidimensional conceptualization of guilt. Part 1 describes the generation of the item pool, derived from in-depth interviews, and review of the scientific literature. Part 2 details statistical analyses for further item selection (Sample 1, N = 273). Part 3 covers the psychometric properties of the emergent-BGS (Sample 2, N = 600, and Sample 3, N = 479). Confirmatory factor analysis indicated that a five-factor model fit the data best. Correlations of BGS scores with depression, anxiety, self-esteem, self-forgiveness, and mode of death were consistent with theoretical predictions, supporting the construct validity of the measure. The internal consistency and test-retest reliability were also supported. Thus, initial testing or examination suggests that the BGS is a valid tool to assess multiple components of bereavement guilt. Further psychometric testing across cultures is recommended.
Gray, Jennifer A.; Truesdale, Jesslyn
The Delphi technique was used to obtain expert panel consensus to prioritize content areas and delivery methods for developing staff grief and bereavement curriculum training in the intellectual and developmental disabilities (IDD) field. The Delphi technique was conducted with a panel of 18 experts from formal and informal disability caregiving,…
Koenig Kellas, Jody; Castle, Katherine M.; Johnson, Alexis; Cohen, Marlene Z.
(1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualita...
Caregiver; Psychological Impact of Cancer and Its Treatment; Recurrent Non-small Cell Lung Cancer; Stage IIA Non-small Cell Lung Cancer; Stage IIB Non-small Cell Lung Cancer; Stage IIIA Non-small Cell Lung Cancer; Stage IIIB Non-small Cell Lung Cancer; Stage IV Non-small Cell Lung Cancer
Germain, Alison; Mayland, Catriona R; Jack, Barbara A
Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.
... Work Working Through Grief About Us The Bereaved Employee: Returning to Work By Helen Fitzgerald, CT After ... One employer called a grief therapist to help employees after a co-worker reported the death of ...
Packman, Wendy; Horsley, Heidi; Davies, Betty; Kramer, Robin
Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally accepted that despite the permanence of physical separation, the bereaved remains involved and connected to the deceased and can be emotionally sustained through continuing bonds. The majority of literature has focused on adults and on the nature of continuing bonds following the death of a spouse. In this article, the authors demonstrate how the continuing bonds concept applies to the sibling relationship. We describe the unique continued relationship formed by bereaved children and adolescents following a sibling loss, highlight the factors that influence the siblings continuing bonds expressions, and offer clinical interventions. In our view, mental health professionals can play an important role in helping parents encourage activities that may facilitate the creation and maintenance of continuing bonds in their children.
Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang
To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.
Radziewicz, R M
Palliative care nurses can face unique stressors and compassion fatigue working in their field. Working with the dying and their families, communicating with other health care professionals, and handling ethical issues are often sources of stress in palliative care. The biochemistry and theory of stress are discussed. Various strategies to cope with caregiver stress are explained.
Laurie A. Burke
Full Text Available Many mourners turn to their spiritual beliefs and traditions when confronted by the death of a loved one. However, prior studies have either focused primarily on the benefits of faith following loss or studied spiritual struggle outside the context of bereavement. Moreover, scales to measure bereavement-related crises of faith and interventions specifically designed for spiritually inclined, distressed grievers are virtually non-existent. Our program of research, which to date has consisted of working with Christian grievers and is outlined below, elucidates complicated spiritual grief (CSG—a spiritual crisis following the loss of a loved one. For example, our longitudinal examination of 46 African American homicide survivors established the relation between positive religious coping, CSG, and complicated grief (CG, to clarify whether religious coping more strongly predicted bereavement distress or vice versa, with a follow-up study that determined the relation between religious coping and posttraumatic stress disorder (PTSD and depression. We replicated and expanded these findings with a diverse sample of 150 grievers to explore the complex relation between CSG, CG, and meaning making in a comparison study of mourners who had experienced traumatic-versus natural death losses. In a companion study, we qualitatively analyzed 84 grievers’ narratives and interviewed a 5-member focus group to capture and learn from their firsthand experiences of spiritual distress. To close the gap in terms of CSG assessment, we also developed and validated the Inventory of Complicated Spiritual Grief (ICSG. Currently, our ongoing CSG investigation extends in several directions: first, to a sample of family members anticipating the loss of their hospice-eligible loved one in palliative care; and, second, to the development and testing of a writing-intensive intervention for newly bereaved, spiritually inclined grievers.
Wood, Lindsey; Byram, Victoria; Gosling, A. Sophie; Stokes, Julie
It has been argued that the grieving process after suicide bereavement has unique properties (e.g., J. R. Jordan, 2001). A qualitative study was conducted to explore one aspect of the grieving process--continuing bonds--after suicide bereavement in childhood. Data were collected through semi-structured interviews with 10 suicide-bereaved children…
Rosenblatt, Paul C.
The concept of recovery following bereavement can be both useful and misleading. As a metaphor, the concept of recovery highlights some aspects of bereavement and obscures others. Bereaved people interviewed in 3 different studies typically did not bring up the term recovery so it did not seem to be a term that described their experience. Across…
Forrest, M; Thomas, G V
Bereaved and non-bereaved children made drawings of a person, themselves, their family, and a topic of their choice; the drawings were then analysed to investigate whether the experience of bereavement was expressed in drawing in any reliable way. Bereaved children were no more likely than non-bereaved children to include indicators of emotional disturbance in their human figure drawings. Bereaved children, however, were reliably more likely than non-bereaved children to include themselves in a drawing of their family.
Blacquiere, Dylan; Bhimji, Khadija; Meggison, Hilary; Sinclair, John; Sharma, Michael
The determinants of satisfaction for families of acute stroke patients receiving palliative care have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke. Families of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached. Four weeks after the patient's death, families were administered the After-Death Bereaved Family Member Interview to determine satisfaction with the care provided. Fifteen families participated. Families were most satisfied with participation in decision making and least satisfied with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding, hydration, and communication. Overall satisfaction was high (9.04 out of 10). Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.
Cohen-Louck, Keren; Saka, Yael
Many studies have examined the trauma bereaved parents experience. The current study focuses on the role that the Holocaust's memory plays in the bereavement experience of parents who have lost a child in a terrorist attack in Israel. Forty bereaved parents were interviewed, using semistructured in-depth interviews. Bereaved parents related to the Holocaust memory as a meaningful experience in their private bereavement. The parents expressed dialectic feelings concerning their loss, personal victimization on the one hand and personal strength, and growth on the other hand. It seems that memory reconstruction of the Holocaust can be used as a coping resource.
... for Patients and Families What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to ...
Swetz, Keith M; Kamal, Arif H
Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.
For many outdoor education providers, bereaved children and young people at first appear to be a new target audience. A new target audience naturally raises questions of programme planning and can give the provider a pressurised need to succeed: "Do I as the organiser have to develop a whole new programme?", "May I be required to provide some form…
Christiansen, Dorte M.; Elklit, Ask; Olff, Miranda
stress disorder (PTSD) symptoms and potential correlates in 634 mothers and fathers up to 18 years (M=3.4 years) after the death of their infant. Members of a private national support organization for parents bereaved by infant death were contacted and asked to participate in the study. Participants...
Fonseca, Luciana Mascarenhas; de Oliveira, Melaine Cristina; de Figueiredo Ferreira Guilhoto, Laura Maria; Cavalheiro, Esper Abrao; Bottino, Cássio Mc
Cognitive decline and Alzheimer's disease often affect older adults with Down syndrome (DS) much earlier than those in the general population. There is also growing evidence of the effects of negative life events on the mental health and behavior of individuals with intellectual disability. However, to our knowledge, this is the first study investigating objective cognitive decline following bereavement in aging individuals with DS. The objective of this study was to determine whether cognitive decline correlates with bereavement following the recent loss of a caregiver or with behavioral changes in a sample of adult individuals with DS who do not meet the criteria for dementia or depression, using the longitudinal assessment of the Cambridge Cognitive Examination (CAMCOG), together with the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE). We evaluated 18 subjects at baseline and over a follow-up period of 14-22 months, attempting to determine whether cognitive decline correlates with bereavement following the recent loss of the main caregiver or with behavioral changes (as assessed with the Neuropsychiatric Inventory). The mean rate of change in CAMCOG was -1.83 (standard deviation 4.51). Behavioral changes had a significant direct influence on cognitive decline. When bereavement was accompanied by behavioral changes, the probability of cognitive decline was 87% (odds ratio 3.82). The occurrence of behavioral changes attributed to bereavement following the loss of the primary caregiver significantly increases the probability of cognitive decline in individuals with DS. Longitudinal comparison of the CAMCOG and use of the IQCODE appear to enrich the analysis of cognitive decline in individuals with DS. Further studies involving larger samples are needed in order to corroborate and expand upon our findings, which can have implications for the clinical management of older adults with DS.
Necessidades de cuidados de enfermagem do cuidador da pessoa sob cuidados paliativos Necesidades de cuidados de enfermería del cuidador de la persona bajo cuidados paliativos Nursing care needs of the caregiver of persons under palliative care
João Vicente César Fonseca
necesidades que requieren la intervención personal de enfermería, mediante el establecimiento de una relación de confianzaThe purpose was to identify needs for nursing care of caregiver of the person in the terminal stage and nursing interventions, using a systematic review of the literature. A research in EBSCO and ProQuest and sought Full Text scientific articles, published between 1998 and 2008, using the following keywords: "Palliative care", "Family", "Nursing" and "Needs" was made. The method PI[C]OD was used to select 14 items of total 77. The care needs the person in the terminal stage are: communication, relationship of trust and security, recognition and operationalization of desires; preparation for mourning; needs for information, training, involvement in care, emotional needs, spiritual needs and resting needs. It was concluded that the family has different needs that require personal intervention of the nurse, through the establishment of a trust relationship
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...
Palliative care does not attempt to prolong survival but to the achieve the highest quality of life both for the patient and their family covering their physical, psychological, social and spiritual needs. Radiotherapy (RT), one of the most important therapeutic modalities, has a great significance in palliative medicine for cancer since it attempts to reduce as much as possible the acute reaction associated with the treatment for the patient. (Author)
Late life bereavement has been associated with psychological problems, mainly depression. A few studies indicated that Posttraumatic Stress Disorder (PTSD) was an important issue to investigate in late life bereavement reactions. This study aimed to assess the prevalence of PTSD in recently...... bereaved elderly people compared to married controls and to investigate whether the loss of a spouse in old age, in contrast with earlier assumptions, could lead to PTSD. Two hundred and ninety six Danish elderly bereaved people (mean age 73 years, 113 males) were chosen from national registers and were...... subsequently assessed two months post-bereavement. They were compared with a control group of 276 married elderly people. The prevalence of PTSD and depression were measured through a self-report questionnaire. Results showed that 16% of the bereaved and 4% of the control group had a PTSD diagnosis (ES=.35...
Moss, Miriam S.; Moss, Sidney
Little research focuses on the ways that bereaved family members react to and make meaning of their experience of the death of an elderly father and husband. In a qualitative, ethnographic study of 34 bereaved families we examined how family members respond to two inter-related social contexts: 1. Social-cultural values and attitudes such as attitudes toward grieving for old persons, and 2. The inter-personal dyadic relationship between interviewer and interviewee. An underlying theme of uncertainty pervades the study participants’ views of what is normal and expected in their own process of bereavement. Implications for future bereavement research are suggested. PMID:22939542
The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public.
Akiyama, Miki; Hirai, Kei; Takebayashi, Toru; Morita, Tatsuya; Miyashita, Mitsunori; Takeuchi, Ayano; Yamagishi, Akemi; Kinoshita, Hiroya; Shirahige, Yutaka; Eguchi, Kenji
Prejudices against palliative care are a potential barrier to quality end-of-life care. There have been few large-scale community-wide interventions to distribute appropriate information about palliative care, and no studies have investigated their impact on cancer patients, their families, and the general public. Thus, we conducted a 3-year community intervention and evaluated the effects of distributing such information at the community level, and explored associations among levels of exposure, perceptions, knowledge, and the sense of security achieved. Over a period of 3 years, we provided flyers, booklets, posters, and public lectures about palliative care in four regions of Japan, and carried out pre- and post-intervention surveys with repeated cross-sectional samplings of cancer patients (pre 859, post 857), bereaved family members (1110, 1137), and the general public (3984, 1435). The levels of exposure to the provided information were measured by a multiple-choice questionnaire after intervention. Multiple logistic regression analyses were used to estimate multivariable-adjusted odds ratios (ORs) for perceptions of palliative care, knowledge about opioids, and sense of security among the exposure groups. Overall perceptions of palliative care, opioids, and receiving care at home improved significantly among the general public and families, but not among the patients at the community level. However, multiple regression revealed that patients of extensive exposure category had significantly more positive perceptions of palliative care to those of non-exposure category (p = 0.02). The sense of security regarding cancer care of all patients, family members, and the general public improved. Among others, the respondents who reported extensive exposure in the general public and family members scored significantly higher sense of security. Our findings indicate that providing palliative care information via small media and lectures in the community is
... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard and can lead to feelings ...
Martel, Sara; Ives-Baine, Lori
To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. An Interpretive Phenomenological Analysis with data collected through a focus group (n = 6) and one semi-structured interview (n = 1) with neonatal nurses from a Level 3/4 NICU in a Canadian pediatric hospital. Participants' comfort with EOL photography developed over time through exposure to bereavement scenarios and positive experiences with families. Participants' experienced a feeling of pressure to balance the photography with clinical responsibilities and find the right time to introduce photography while being sensitive to family experiences. Participants experienced EOL photography as something tangible to give families and were satisfied knowing the images might play an important role in the family's healing after the NICU. All participants had come to value EOL photography as a positive and meaningful part of their work with bereaved families. Identified challenges related to balancing the practice with the unpredictable flow and demands of critical care and to developing an appreciation for and comfort with the photography as part of their healing and the families' healing. Findings contribute insight into care-provider experience that can inform best practices, training, and staff support for palliative and bereavement work in neonatal and pediatric settings. The findings suggest a need to support nurses emotionally and clinically in carrying out this photography as part of their care for families. Copyright © 2018 Elsevier Inc. All rights reserved.
Sabrina Lessard; Bernard-Simon Leclerc; Suzanne Mongeau
The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a) ...
Konkolÿ Thege Barna
Full Text Available Abstract Background In our research we examined the frequency of somatic symptoms among bereaved (N = 185 and non-bereaved men and women in a national representative sample (N = 4041 and investigated the possible mediating factors between bereavement status and somatic symptoms. Methods Somatic symptoms were measured by the Patient Health Questionnaire (PHQ-15, anxiety with a four-point anxiety rating scale, and depression with a nine-item shortened version of the Beck Depression Inventory. Results Among the bereaved, somatic symptoms proved to be significantly more frequent in both genders when compared to the non-bereaved, as did anxiety and depression. On the multivariate level, the results show that both anxiety and depression proved to be a mediator between somatic symptoms and bereavement. The effect sizes indicated that for both genders, anxiety was a stronger predictor of somatic symptoms than depression. Conclusions The results of our research indicate that somatic symptoms accompanying bereavement are not direct consequences of this state but they can be traced back to the associated anxiety and depression. These results draw attention to the need to recognize anxiety and depression looming in the background of somatic complaints in bereavement and to the importance of the dissemination of related information.
Anjum S Khan Joad
Conclusions: informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.
Azaiza, Faisal; Ron, Pnina; Shoham, Meyrav; Tinsky-Roimi, Tal
This study examines differences in death and dying anxiety between bereaved and nonbereaved elderly Israeli parents, as well as correlates of these factors among bereaved parents. A total of 97 parents (49 bereaved, 48 nonbereaved) completed measures of death and dying anxiety and religiosity. Bereaved parents reported significantly higher dying…
Full Text Available Abstract Background Despite abundant bereavement care options, consensus is lacking regarding optimal care for bereaved persons. Methods We conducted a systematic review, searching MEDLINE, PsychINFO, CINAHL, EBMR, and other databases using the terms (bereaved or bereavement and (grief combined with (intervention or support or counselling or therapy and (controlled or trial or design. We also searched citations in published reports for additional pertinent studies. Eligible studies had to evaluate whether the treatment of bereaved individuals reduced bereavement-related symptoms. Data from the studies was abstracted independently by two reviewers. Results 74 eligible studies evaluated diverse treatments designed to ameliorate a variety of outcomes associated with bereavement. Among studies utilizing a structured therapeutic relationship, eight featured pharmacotherapy (4 included an untreated control group, 39 featured support groups or counselling (23 included a control group, and 25 studies featured cognitive-behavioural, psychodynamic, psychoanalytical, or interpersonal therapies (17 included a control group. Seven studies employed systems-oriented interventions (all had control groups. Other than efficacy for pharmacological treatment of bereavement-related depression, we could identify no consistent pattern of treatment benefit among the other forms of interventions. Conclusions Due to a paucity of reports on controlled clinical trails, no rigorous evidence-based recommendation regarding the treatment of bereaved persons is currently possible except for the pharmacologic treatment of depression. We postulate the following five factors as impeding scientific progress regarding bereavement care interventions: 1 excessive theoretical heterogeneity, 2 stultifying between-study variation, 3 inadequate reporting of intervention procedures, 4 few published replication studies, and 5 methodological flaws of study design.
Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila
Abstract Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. PMID:24475743
Christensen, Dorthe Refslund; Hård af Segerstad, Ylva; Kasperowski, Dick
This article presents results from case studies of online grief communities for bereaved parents in Denmark and Sweden (Christensen & Sandvik 2013, 2015a; Hård af Segerstad & Kasperowski, 2015), analyzing how development of practices and norms for grieving and mourning online are related...... to the conditions for participation in the online forums, and to dominant ideas of grief in society as such. Rooted in contemporary research on grief and mourning, we discuss practices of tabooization, de-tabooization or even re-tabooization in the different online forums and how norms and traditions are performed...
Full Text Available Luciana Mascarenhas Fonseca,1 Melaine Cristina de Oliveira,2 Laura Maria de Figueiredo Ferreira Guilhoto,3,4 Esper Abrao Cavalheiro,3,4 Cássio MC Bottino1 1Old Age Research Group, Department of Psychiatry, 2Institute of Mathematics and Statistics, University of São Paulo, 3Association of Parents and Friends of People with Intellectual Disability of São Paulo, 4Federal University of São Paulo, São Paulo, Brazil Background: Cognitive decline and Alzheimer’s disease often affect older adults with Down syndrome (DS much earlier than those in the general population. There is also growing evidence of the effects of negative life events on the mental health and behavior of individuals with intellectual disability. However, to our knowledge, this is the first study investigating objective cognitive decline following bereavement in aging individuals with DS.Objective: The objective of this study was to determine whether cognitive decline correlates with bereavement following the recent loss of a caregiver or with behavioral changes in a sample of adult individuals with DS who do not meet the criteria for dementia or depression, using the longitudinal assessment of the Cambridge Cognitive Examination (CAMCOG, together with the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE.Methods: We evaluated 18 subjects at baseline and over a follow-up period of 14–22 months, attempting to determine whether cognitive decline correlates with bereavement following the recent loss of the main caregiver or with behavioral changes (as assessed with the Neuropsychiatric Inventory.Results: The mean rate of change in CAMCOG was -1.83 (standard deviation 4.51. Behavioral changes had a significant direct influence on cognitive decline. When bereavement was accompanied by behavioral changes, the probability of cognitive decline was 87% (odds ratio 3.82. Conclusion: The occurrence of behavioral changes attributed to bereavement following the loss of
Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca
Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test
This study explored how Danish students experienced returning to school following parental bereavement. Eighteen focus group interviews were conducted with 39 participants aged 9 to 17. All participants had experienced the loss of a primary caregiver. Data collection was divided into two phases. In Phase I, 22 participants from four grief groups were interviewed 4 times over the course of a year. During Phase II, confirmatory focus groups were undertaken with the 17 participants. This article explores the findings related to ideas and suggestions made by the students about how the Danish school response could be improved to better meet their needs. The presentation of data is divided into seven themes, which are: Desired school response; Desired support from teachers; Desired boundaries between students and teachers; Desired collaboration; Desired support from peers; Desired rules and structure, and; Desires related to gifts and rituals. Study findings indicate that most students want to be included and have a say when the school plans how to respond to their loss. Students further highlight a need for teacher support when having to reconnect with the class; a need for set rules in relation to leaving the class when feeling sad, and; a need for schools to see the loss as a life-changing event, and grief as something that does not simply disappear after a few months. The article concludes by discussing the ways in which the recommendations provided by the participants can be incorporated into a modern revision of Danish school bereavement response plans.
Purebl, György; Pilling, János; Konkolÿ, Thege Barna; Bódizs, Róbert; Kopp, Mária
It is widely believed that oppressive dreams are frequent in bereavement--despite the lack of scientific investigations of the subject. The aims of our study were the analysis of dream quality as well as the correlates of oppressive dreams in bereavement. Participants with (N = 473) and without bereavement were compared upon the database of a national representative study (Hungarostudy Epidemiological Panel Survey 2006, N = 4329). Dream contents were assessed with the Dream Quality Questionnaire (DQQ). Depressive symptoms (BDI-S) and the presence anxiety were also investigated. Oppressive dreams occurred significantly higher frequency in the first year of bereavement (men: F = 17.525, p dreams were significantly associated with anxiety (F = 37.089, p dreams are significantly more frequent in the first year of bereavement, and may act as indicators of bereavement-linked mental health consequences like depression and anxiety. These are often masked by the symptoms of grief and therefore remain untreated. Our preliminary results could be a starting point for the development of further research aiming to clarify the relationship amongst dream contents, anxiety, and depression in bereavement.
Bétrémieux, P; Mannoni, C
The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Wartime deaths are traumatic and leave many grieving families in their wake. Yet, the unique, nuanced bereavement needs and experiences of those who remain are largely unknown. This Canadian, qualitative study examined the bereavement experiences of family of origin, bereaved during the mission to Afghanistan. The findings provide rich data on the predominant ways in which family members found and made meaning following the death and the ways in which military culture influenced the meanings made.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many
Music therapy is increasingly becoming an intervention used in palliative care settings around the globe. While the specialty of palliative care music therapy is relatively young having emerged in the late 1980s, there is a strong and growing body of evidence demonstrating its efficacy in assisting a variety of issues common at end-of-life. There are multiple music therapy techniques that are implemented with clients in palliative care and they can be categorized in four broad areas: receptive, creative, recreative and combined. These techniques will be presented with respect to their development by clinicians as supported by the descriptive and research literature. Information is also provided on the use of music therapy in facilitating the grieving and bereavement process. Copyright © 2015 Elsevier Ltd. All rights reserved.
Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl
Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care. . The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care. . This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations. . Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
Maricel Peña Villamar
Full Text Available Background: death is a fact that impacts the lives of all human beings, so that it can neither be ignored nor distanced from its subsequent bereavement period, even if being wished. The grief reaction is one of the problems that most frequently demand the assistance of health staff, especially psychologists in all health care areas.Objective: to devise a system of activities that contributes to increase the psychologists’ knowledge about bereavement and its management.Methods: a multiple cases study was carried out with the application of two research instruments (questionnaire and interview to those psychologists who work in primary and secondary health care in Las Tunas municipality to diagnose their needs related to the management of bereavement. Qualitative methodology was used, based on the method of participatory action research, and workshops were designed as forms of educational intervention.Results: it was proved that psychologists have insufficient theoretical and methodological training in relation to care for the bereaved. Consequently, psychotherapeutic workshops were designed, offering the general methodology and procedures to be followed by the professional who assists the bereaved.Conclusions: psychotherapeutic workshops constitute a referential theoretical and practical model very useful for the preparation of psychologists to deal with bereavement.
Nisha Rani Jamwal
Full Text Available Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care.
Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina
HOSPICE Casa Sperantei has been pioneering palliative care development in Romania since 1992. The have developed specialist palliative care services in home-based settings, inpatient units, day care centers, and as hospital support teams. They have provided national and international education programs for professionals in the palliative care field, as well as promoting palliative care integration in the health care system. Legislative improvements were adopted, including funding mechanisms for the reimbursement of palliative care services through the health insurance funds, review of opioid policy, and quality standards of care. By the end of 2015, Romania had 115 specialist palliative care services (78 palliative care inpatient units, 24 home-based palliative care services, five outpatient palliative care clinics, four day care centers, and four hospital support teams). A palliative care subspecialty for doctors was recognized as early as 2000, and a multidisciplinary master's degree program has been available at Transilvania University since 2010, when the first palliative care academic position was established. Nursing education includes mandatory palliative care modules in nursing schools. For coordinated development of palliative care at the national level, a national strategy was proposed defining three levels of palliative care provision, local, district, and national. The implementation of the palliative care strategy is partially funded through a World Bank loan. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Okamoto, Takuya; Ando, Michiyo; Morita, Tatsuya; Hirai, Kei; Kawamura, Ryo; Mitsunori, Miyashita; Sato, Kazuki; Shima, Yasuo
The aim of this study was to explore the most suitable religious care for Japanese terminally ill patients with cancer based on the opinions of bereaved family members. A multicenter questionnaire survey on palliative care service was sent to 592 bereaved family members of patients with cancer who were admitted to palliative care units in Japan, and 430 responded by mail. In the section of the questionnaire about religious care, 382 responses were used for quantitative analysis, and 71 responses about religious care for qualitative analysis. In the current study, the 71 responses were grouped into families with and without a religion and were analyzed qualitatively. Families with a religion (N = 28) chose answers such as ''Instrumental care'' such as music or a religious event, ''Freedom of choice of kinds for religious care,'' ''Staff involvement of religious care,'' ''Meeting with a pastoral care workers,'' and ''Burden of offering a different kind of personal religion.'' In contrast, families without a religion (N = 44) chose answers such as ''Instrumental care,'' ''Freedom of choice whether patients receive religious care or not,'' ''Spiritual care,'' ''Not being able to accept religious care,'' and ''Burden of thinking about a religion and nuisance.'' These findings suggest that Japanese bereaved families with a religion generally regard religious care positively and prefer care through their own religion, whereas some families without a religion require religious care but some do not prefer it.
Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong
Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.
Full Text Available Can other persons, personally or professionally, help bereaved individuals deal with the loss of a loved one? An increasing number of empirical studies, as well as qualitative and quantitative reviews, have addressed this question. Here, the main findings are summarised and implications for researchers and practitioners considered. First, provision of help from the informal social network and volunteers/professionals in the post-loss period is examined. Second, and uniquely in this research area, examination is extended to the efficacy of intervention for family members prior to their bereavement (i.e., in the context of palliative/end-of-life care. To what extent do the pre-loss patterns mirror those for post-bereavement intervention efficacy? A main conclusion is that intervention is not effective for bereaved persons in general, either when this is provided before or after the actual loss. It is important to identify and target high-risk persons. Further scientific and clinical implications of the patterns of results are discussed.
Pitman, Alexandra; Osborn, David; King, Michael
to psychiatric care for parents bereaved by the suicide of an offspring, increased risk of suicide in mothers bereaved by an adult child's suicide, and increased risk of depression in offspring bereaved by the suicide of a parent. Some evidence was shown for increased rejection and shame in people bereaved......Between 48 million and 500 million people are thought to experience suicide bereavement every year. Over the past decade, increased policy attention has been directed towards suicide bereavement, but with little evidence to describe the effect of exposure or to provide appropriate responses. We...... used a systematic approach to carry out a narrative review of studies of the effect of suicide bereavement on mortality, mental health, and social functioning, and compared them with effects from other bereavements. We found 57 studies that satisfied strict inclusion criteria. Results from...
Kissane, David W; Zaider, Talia I; Li, Yuelin; Hichenberg, Shira; Schuler, Tammy; Lederberg, Marguerite; Lavelle, Lisa; Loeb, Rebecca; Del Gaudio, Francesca
Systematic family-centered cancer care is needed. We conducted a randomized controlled trial of family therapy, delivered to families identified by screening to be at risk from dysfunctional relationships when one of their relatives has advanced cancer. Eligible patients with advanced cancer and their family members screened above the cut-off on the Family Relationships Index. After screening 1,488 patients or relatives at Memorial Sloan Kettering Cancer Center or three related community hospice programs, 620 patients (42%) were recruited, which represented 170 families. Families were stratified by three levels of family dysfunction (low communicating, low involvement, and high conflict) and randomly assigned to one of three arms: standard care or 6 or 10 sessions of a manualized family intervention. Primary outcomes were the Complicated Grief Inventory-Abbreviated (CGI) and Beck Depression Inventory-II (BDI-II). Generalized estimating equations allowed for clustered data in an intention-to-treat analysis. On the CGI, a significant treatment effect (Wald χ(2) = 6.88; df = 2; P = .032) and treatment by family-type interaction was found (Wald χ(2) = 20.64; df = 4; P families. Low-communicating families improved by 6 months of bereavement. In the standard care arm, 15.5% of the bereaved developed a prolonged grief disorder at 13 months of bereavement compared with 3.3% of those who received 10 sessions of intervention (Wald χ(2) = 8.31; df = 2; P =.048). No significant treatment effects were found on the BDI-II. Family-focused therapy delivered to high-risk families during palliative care and continued into bereavement reduced the severity of complicated grief and the development of prolonged grief disorder. © 2016 by American Society of Clinical Oncology.
Rosenberg, Abby R; Postier, Andrea; Osenga, Kaci; Kreicbergs, Ulrika; Neville, Bridget; Dussel, Veronica; Wolfe, Joanne
The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes. Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support). Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals. How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Midorikawa, Yasuhiko; Iiduka, Masashi
The problems we have identified to overcome for a betterment of home palliative care were as follows:(1) Staffs' low level of knowledge and a lack of interest in home care, (2) Lack of cooperation between hospital and clinic, (3) Hard to keep the medical and caregiver staffs employed in the home care settings and a technical training is behind, (4) Insufficient cooperative networks for elderly care and welfare in the region, and (5) Misunderstanding of home palliative care by patient, family and people in the region. It is important to solve these problems one by one for a betterment of home palliative care. In this paper, we reported these problems through actual activities of our hospital and Iwaki city, and we propose to deal with them.
Effects of a problem-solving intervention (COPE) on quality of life for patients with advanced cancer on clinical trials and their caregivers: simultaneous care educational intervention (SCEI): linking palliation and clinical trials.
Meyers, Frederick J; Carducci, Michael; Loscalzo, Matthew J; Linder, John; Greasby, Tamara; Beckett, Laurel A
Patients on investigational clinical trials and their caregivers experience poor quality of life (QOL), which declines as the disease progresses. To examine the effect of a standardized cognitive-behavioral problem-solving educational intervention on the QOL of patients enrolled on investigational clinical trials and their caregivers. Prospective, multi-institution, randomized trial. QOL was measured repeatedly over 6 months. Patients were simultaneously enrolled onto phase 1, 2, or 3 Institutional Review Board (IRB)-approved cancer clinical trials. Intervention arm dyads participated in three conjoint educational sessions during the first month, learning the COPE problem solving model. Nonintervention arm dyads received usual care. Global QOL was measured by the City of Hope Quality of Life Instruments for Patients or Caregivers; problem solving skills were measured by the Social Problem Solving Inventory-Revised. The results are reported using the CONSORT statement. The analytic data set included 476 dyads including 1596 patient data points and 1576 care giver data points. Patient QOL showed no significant difference in the rate of change between the intervention and usual care arms (p = 0.70). Caregiver QOL scores in the intervention arm declined, but at less than half the rate in the control arm (p = 0.02). The COPE intervention enabled the average caregiver to come much closer to stable QOL over the 6-month follow-up. Future studies should enroll subjects much earlier in the cancer illness trajectory, a common patient/caregiver theme. The maximum effect was seen in caregivers who completed the 6-month follow-up, suggesting that the impact may increase over time.
Toller, Paige W.; Braithwaite, Dawn O.
The researchers adopted relational dialectics theory (Baxter & Montgomery, 1996) to examine the discourse of 37 bereaved parents. Research questions guiding the study were what dialectical contradictions do bereaved parents experience when communicating with their marital partner after their child's death and how do bereaved parents and their…
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.
Major strides have been made in expanding the content of professional education in palliative care to include a focus on attitudes which nurture compassionate care as well as on knowledge and skills. However, accessing the emotional spheres--for instance the fear and helplessness of caregivers--remains a challenge. The inclusion of music therapy techniques as a teaching modality, with an emphasis on emotional experience and nonverbal expression, is suggested to address the latter and to enhance affective growth and learning.
Shah, Sunil M; Carey, Iain M; Harris, Tess; Dewilde, Stephen; Victor, Christina R; Cook, Derek G
Bereavement is a period of increased risk of cardiovascular death. There is limited understanding of the potential contribution of quality of cardiovascular disease management to this increased risk. In a UK primary-care database, 12 722 older individuals with preexisting cardiovascular disease (coronary heart disease, hypertension, diabetes mellitus, stroke) and a partner bereavement were matched with a non-bereaved control group (n=33 911). We examined key routine annual process measures of care in the year before and after bereavement and cardiovascular medication prescribing (lipid-lowering, antiplatelet, renin-angiotensin system drugs). Odds ratios for change after bereavement compared with the change in non-bereaved matched controls are presented. In the bereaved, uptake of all annual measures was lower in the year before bereavement, with improvement in the year after, whereas in the controls, uptake was relatively stable. The odds ratio for change was 1.30 (95% confidence interval, 1.15-1.46) for cholesterol measurement and 1.40 (95% confidence interval, 1.22-1.61) for blood pressure measurement. For all medication, there was a transient fall in prescribing in the peri-bereavement period lasting until about 3 months after bereavement. The odds ratio for at least 80% prescription coverage in the 30 days after bereavement was 0.80 (95% confidence interval, 0.73-0.88) for lipid-lowering medication and 0.82 (95% confidence interval, 0.74-0.91) for antiplatelet medication compared with the change in non-bereaved individuals. Lower uptake of key cardiovascular care measures in the year before bereavement and reduced medication coverage after bereavement may contribute to increased cardiovascular risk. Clinicians need to ensure that quality of cardiovascular care is maintained in the pre- and post-bereavement periods.
Clements, Paul T; Vigil, Gloria J; Manno, Martin S; Henry, Gloria C; Wilks, Jonathan; Das Sarthak; Kellywood, Rosie; Foster, Wil
The cultural makeup of the United States continues to change rapidly, and as minority groups continue to grow, these groups' beliefs and customs must be taken into account when examining death, grief, and bereavement. This article discusses the beliefs, customs, and rituals of Latino, African American, Navajo, Jewish, and Hindu groups to raise awareness of the differences health care professionals may encounter among their grieving clients. Discussion of this small sample of minority groups in the United States is not intended to cover all of the degrees of acculturation within each group. Cultural groups are not homogeneous, and individual variation must always be considered in situations of death, grief, and bereavement. However, because the customs, rituals, and beliefs of the groups to which they belong affect individuals' experiences of death, grief, and bereavement, health care professionals need to be open to learning about them to better understand and help.
Whittall, Dawn; Lee, Susan; O'Connor, Margaret
To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment
This study examines immigrants' experiences of bereavement and coping with the deaths of family members in a transnational context. Data were collected through in-depth personal interviews with middle-aged and older immigrants from different countries of origin, who have been living in the United States for a majority of their adult lives. Thematic analysis of participants' narratives showed that immigrants' geographic distance from family complicated caregiving circumstances and rituals surrounding burial, and impacted the grieving process. At the same time, this distance also served as an emotional barrier and provided protection from prolonged grief. Immigrants' U.S.-based family and work responsibilities served as buffers from prolonged grief. Over time, immigrants became Americanized in their attitudes toward coping with death and favored a fast return to productive activities. Finally, immigrants' experience of migratory loss and anticipatory grief early in immigration, along with their personal growth and resilience developed over time, impacted their bereavement experiences later in life. Considering the limitations and the exploratory nature of the present study, further research is needed to investigate the specifics of coping with loss and bereavement among immigrants. © 2017 Family Process Institute.
Rodgers, Laura S
In spite of the increase in research on spousal bereavement, researchers have not specifically addressed the impact that ethnicity may have on the bereavement experience. The results of this descriptive phenomenological study increase the understanding of spousal bereavement among older African American widows. Storytelling was at the heart of every participant's description of her bereavement experience. Six themes were identified: awareness of death, care giving, getting through, moving on, changing feelings, and financial security. For nurses to effectively intervene in the lives of bereaved older African American widows, they must consider each widow's culture, heritage, and lived experiences, which can be ascertained through eliciting and listening to the widow's life stories.
Ingstrup, Katja Glejsted; Olsen, Jørn; Wu, Chunsen
BACKGROUND: Cryptorchidism (undescended testis) is a common anomaly with largely unexplained etiology. Animal studies have suggested maternal emotional stress as a potential risk factor, but this has not been studied in humans. We aimed to investigate whether maternal bereavement due to the death...... interval = 0.92-1.14]). Results were similar when the diagnosis was verified with surgery. We adjusted for maternal and paternal age, birth year, and family history of cryptorchidism. CONCLUSION: We observed no association between maternal bereavement before and during pregnancy and the occurrence...
Walker, Andrea C
Due to the severity of the risks involved in violation of ethical principles with research of American Indian populations, more attention in literature is needed on the topic. This article reviews discussions of ethical and methodological issues, uses Muscogee Creeks' responses from the author's prior study (Walker, 2008; Walker & Balk, 2007) as an example and application, and specifically focuses on the research of death and bereavement. The article provides ethical reflection and recommendations for designing death and bereavement research as an outsider to the culture, as well as for building trust with participants in American Indian populations.
Water immersion in neonatal bereavement photography is a new technique intended to enhance the quality of the photographs provided to families following their loss. Water immersion appears to be most helpful following a second trimester fetal demise. This technique can be used by nurses, professional photographers and others in addition to more traditional neonatal bereavement photography. It does not require special skills or equipment and can be implemented in virtually any perinatal setting. The enhanced quality of photographs produced with this method can potentially provide a source of comfort to grieving families. © 2014 AWHONN.
Full Text Available Background. In the last decades a palliative care has been well established in the majority of West European countries. However, majority of these countries are not able to follow needs for palliative care because of demographic changes (older population, changes of morbidity pattern (increase of chronic progressive diseases and social changes (disability of families to care for their relatives at their homes. Research is showing evidence on palliative care effectiveness at end of life and in bereavement. There is still a great need for healthcare professionals’ change in their attitudes, knowledge and skills. In many National strategic plans (United Kingdom, Ireland, Sweden, Australia, New Zealand and Canada palliative care becomes a priority in the national public health. New organizational planning supports establishement of palliative care departments in hospitals and other healthcare settings and consultant teams at all levels of healthcare system. Hospices, caritative and independent organizations, will remain as a source of good clinical practice and philosophy of care at the end of life also in the future.
... patient needs the caregiver to do, but also what the caregiver is willing and able to do. Caregiver strain ... be caused by the cancer or the treatments. What the caregiver is expected to do Caregivers report that they ...
Bede, Peter; Oliver, David; Stodart, James; van den Berg, Leonard; Simmons, Zachary; O Brannagáin, Doiminic; Borasio, Gian Domenico; Hardiman, Orla
Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life. To conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS. Despite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care into ALS management varies considerably across health care systems. Late referral to palliative services in ALS is not uncommon and may impact negatively on the quality of life of ALS patients and their caregivers. However, common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliative care intervention. There is considerable evidence that palliative care intervention improves quality of life in patients and carers. International consensus guidelines would assist in the development of a framework for active palliative care engagement in ALS and other neurodegenerative diseases.
Draper, Peter; Holloway, Margaret; Adamson, Susan
To investigate the beliefs of recently bereaved people about death and to explore the implications of these beliefs for bereavement care. Little is known about recently bereaved people's beliefs about death, although there is evidence that these beliefs may have an impact on health. The funeral provides an opportunity for bereaved people to reflect on their beliefs about death. A qualitative approach. This paper describes one aspect of an interdisciplinary study of the spirituality of contemporary funerals. We obtained access to 46 funerals through funeral directors and other contacts, and interviewed principal mourners to explore their beliefs. Interviews were recorded, transcribed verbatim and analysed thematically. Three themes emerged that reflected the beliefs and experiences of bereaved people. The first theme describes people's understanding of death in terms of five positions: religious, dualist, eco-spiritualist, materialist and death-as-transition. The second theme addresses a range of views about the possibility of life after death: resurrection, reuniting and reincarnation. The third theme describes ways in which people felt that their relationship with the deceased person continues after death: continuity as sense of presence and continuity as memory, legacy and love. Some people were reluctant to express a firm view about death. People express a spectrum of beliefs about death. Their beliefs are infrequently linked to formal religious or spiritual perspectives but seem to have an important role in coping with bereavement. This is a unique study illustrating the complexity of bereaved people's beliefs about death. The study provides a research-based framework within which to understand contemporary beliefs about death, and contributes to our understanding of how health professionals can support recently bereaved people. © 2013 John Wiley & Sons Ltd.
Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia
The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.
Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M
Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears.
Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K
The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
... is not under control Need help understanding your situation and coordinating care PALLIATIVE CARE Often a team of specialists provides palliative care. The team usually includes: Palliative care doctors and nurses Social workers and chaplains Pharmacists and nutritionists Counselors and others ...
Background: It remains an incontrovertible fact that the phenomenon of HIV/AIDS has not only posed major health and development challenges, but is also a stressor experienced at local, regional and global levels. This article explores the stressrelated challenges facing volunteer palliative caregivers in the Kanye ...
Mousing, Camilla Askov; Timm, Helle; Lomborg, Kirsten
. Non-awareness and organisational barriers led to difficulties in identifying PC needs and reluctance to initiate conversations about PC. CONCLUSION: The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may...... vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care and lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care...... be needed to reduce the barriers to palliative care. This article is protected by copyright. All rights reserved....
Kassam, Alisha; Skiadaresis, Julia; Habib, Sharifa; Alexander, Sarah; Wolfe, Joanne
The National Consensus Project (NCP) published a set of standards for quality palliative care delivery. A key step before applying these guidelines to pediatric oncology is to evaluate how much families and clinicians value these standards. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine accessibility of these elements. We administered questionnaires to 75 bereaved parents (response rate, 54%) and 48 pediatric oncology clinicians (response rate, 91%) at a large teaching hospital. Outcome measures included importance ratings and accessibility of core elements of palliative care delivery. Fifteen of 20 core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). Compared with clinicians, parents gave higher ratings to receiving cancer-directed therapy during the last month of life (P involvement of a spiritual mentor (P = .03). Of the valued elements, only three were accessible more than 60% of the time according to clinicians and parents. Valued elements least likely to be accessible included a direct admission policy to hospital, sibling support, and parent preparation for medical aspects surrounding death. Parents and clinicians highly value a majority of palliative care elements described in the NCP framework. Children with advanced cancer may not be receiving key elements of palliative care despite parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them are critical.
Nakajima, Naomi; Kodama, Kenichi
The purposes of this study are to clarify the characteristics of college students' bereavement and separation and the relationship between coping strategies and grief reactions in bereavement and separation. 212 college students completed questionnaires. The results indicated that the majority of the respondents have experienced some bereavement or separation, in particular, separation from the lover. Multiple regression analyses showed that coping strategies such as "avoidance", "abandonment...
Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette
In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.
Weissman, David E; Morrison, R Sean; Meier, Diane E
Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.
Lisa M. Linge-Dahl
Full Text Available Background: The central goal of palliative care is to optimize the quality of life of patients suffering from life-limiting illnesses, which includes psychosocial and spiritual wellbeing. Research has demonstrated positive correlations between humor and laughter with life satisfaction and other aspects of wellbeing, and physiological symptoms can be improved by humorous stimuli.Objectives: The aim of this review is to evaluate humor interventions and assessments that have been applied in palliative care and to derive implications for future research.Methods: A systematic review of four databases identified 13 included studies. Criteria for inclusion were peer-reviewed English-language studies on humor interventions or assessments in a palliative care context.Results: Two studies on humor interventions and 11 studies on humor assessment were included in the systematic review. Most of these studies were about the patients' perspective on humor in palliative care. Findings showed that humor had a positive effect on patients, their relatives, and professional caregivers. Humor was widely perceived as appropriate and seen as beneficial to care in all studies.Conclusions: Even though humor interventions seem to be potentially useful in palliative care, descriptions evaluating their use are scarce. Overall, research on humor assessment and interventions in palliative care has remained limited in terms of quantity and quality. More research activities are needed to build a solid empirical foundation for implementing humor and laughter as part of regular palliative care activities.
LGBT CAREGIVER CONCERNS IMPORTANT CONSIDERATIONS FOR LGBT CAREGIVERS LGBT CAREGIVER CONSIDERATIONS As a caregiver for someone with Alzheimer’s disease, you will face various challenges. Some are common among all ...
Walker, Andrea C; Balk, David E
A qualitative, collective case study explores bereavement rituals in the Muscogee Creek tribe. Data from interviews with 27 participants, all adult members of the tribe, revealed consensus on participation in certain bereavement rituals. Common rituals included: (a) conducting a wake service the night before burial; (b) never leaving the body alone before burial; (c) enclosing personal items and food in the casket; (d) digging graves by hand; (e) each individual throwing a handful of dirt into the grave before covering, called giving a "farewell handshake"; (f) covering the grave completely by hand; (g) building a house over the grave; (h) waiting 4 days before burial; (i) using medicine/purification; and (j) adhering to socialized mourning period. Cultural values of family, community, religion, importance of the number 4, Indian medicine, and the meaning of death contributed to the development of these rituals.
... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...
Davies, Elizabeth A
Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research. A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care. I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients' accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community. Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Ishida, Mayumi; Onishi, Hideki; Wada, Mei; Wada, Tomomi; Wada, Makoto; Uchitomi, Yosuke; Nomura, Shinobu
The death of a person is a stressful event. Such stress affects the physical and psychological well-being of the bereaved. As an associated mental disorder, major depressive disorder (MDD) is common. Some dream of the deceased, and these dreams are called bereavement dreams. Some MDD patients also experience dreams. These two types of dreams are sometimes difficult to differentiate. The dream of the bereaved might be only a bereavement-related dream, yet it might be a symptom of MDD. Herein, we report one patient who had distressing dreams after the death of her mother. A 63-year-old woman was referred for psychiatric consultation because of generalized fatigue and insomnia. Questioning her about recent events, she said that her mother had died of colonic carcinoma 5 months previously. Two months after the death, she suddenly started dreaming of her mother, getting angry with her almost every night. Generalized fatigue, insomnia, and distressing dreams appeared simultaneously. The dream caused much distress, making her afraid to fall asleep. Her psychiatric features fulfilled the DSM-IV-TR criteria for MDD, single episode. The death of her mother was considered to be one of the causes of MDD. She was administered 25 mg/day of sertraline hydrochloride. After that, her symptoms gradually disappeared, and the frequency of distressing dreams was reduced. Five months later, physical and psychiatric symptoms of MDD were completely resolved. Subsequently, she has not suffered from any distressing dreams of her mother. This case indicates that dreams experienced after the death of a loved one should not be regarded simply as bereavement dreams. Some of the dreams may be symptoms of MDD. If the dreams are the symptoms of MDD, antidepressant treatment as well as psychotherapy may be useful. Therefore, we should avoid regarding symptoms of MDD as reactions to bereavement.
As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.
Mondia, Stephen; Hichenberg, Shira; Kerr, Erica; Eisenberg, Megan; Kissane, David W
Clinicians meet people from different ethnic backgrounds, yet need to respond in culturally sensitive ways. This article focuses on Asian American families. Within a randomized controlled trial of family therapy commenced during palliative care and continued into bereavement, 3 families of Asian American background were examined qualitatively from a cultural perspective by listening to recordings of 26 therapy sessions and reviewing detailed supervision notes compiled by each therapist. A synopsis of each family's therapy narrative is presented. Prominent themes include family closeness, respect for hierarchy within the family, gender-determined roles, intergenerational tensions, preoccupation with shame and limited emotional expressiveness. Family therapists working with culturally diverse families need to pay thoughtful attention to ethnic issues as they strive to support them during palliative care and bereavement.
Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C
With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. © 2013 John Wiley & Sons Ltd.
Neergaard, Mette Asbjørn; Olesen, Frede; Vedsted, Peter
Background: Most terminal cancer patients and their relatives wish that the patient should be allowed to die at home. Palliative home care often involves general practitioners (GPs) and community nurses who become frontline workers in the patients' homes. GP home visits have been shown...... to 599 GPs of deceased cancer patients to obtain data on the GPs' involvement. Register data were collected on diagnosis, place of death and number of GP home visits. Questionnaires were sent to the closest relatives asking them to evaluate the palliative pathway. 153 cases were included and associations...... significant importance. Conclusion: Our study indicates that home death is positively associated with a higher likelihood of a positive evaluation of the palliative course among the bereaved relatives. There is a need for studies examining in more detail which primary care efforts are associated with a "good...
Priya Darshini Kulkarni
Full Text Available The reason that probably prompted Dame Cicely Saunders to launch the palliative care movement was the need to move away from the impersonal, technocratic approach to death that had become the norm in hospitals after the Second World War. Palliative care focuses on relieving the suffering of patients and families. Not limited to just management of pain, it includes comprehensive management of any symptom, which affects the quality of life. Care is optimized through early initiation and comprehensive implementation throughout the disease trajectory. Effective palliative care at the outset can help accelerate a positive clinical outcome. At the end of life, it can enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It helps to reduce the suffering and fear associated with dying and prepares the family for bereavement.
Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M
Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.
Utz, Rebecca L.; Caserta, Michael; Lund, Dale
Purpose: Widowhood is among the most distressing of all life events, resulting in both mental and physical health declines. This paper explores the dynamic relationship between physical health and psychological well-being among recently bereaved spouses. Design and Methods: Using a sample of 328 bereaved persons who participated in the "Living…
Virk, Jasveer; Li, Jiong; Lauritsen, Jens
The aim of this study was to assess the risk of injuries among children exposed to a stressful life exposure (defined as bereavement) before conception or during fetal life.......The aim of this study was to assess the risk of injuries among children exposed to a stressful life exposure (defined as bereavement) before conception or during fetal life....
Arriaza, Pablo; Martin, Shadi S; Csikai, Ellen L
Hispanics are the fastest growing minority group in the United States, numbering over 42 million and comprising 15% of the total population (U.S. Census Bureau, 2008 ). Hispanics are a heterogeneous group that experience disparities in accessing health care, including at the end of life. Specific gaps can be identified in the care of bereaved Hispanic individuals and families. This exploratory study examined bereavement services available and perceived needs for Hispanics in Florida. Hospice bereavement coordinators indicated that limited services were available specifically for Spanish-speakers and that language and cultural barriers were challenges when communicating, offering, and delivering bereavement services to Hispanics. Implications for social workers include the need to increase access to and evaluate the effectiveness of bereavement services for Hispanics.
Larsen, Anne Bolt
af systematiske søgninger fra 2002-2012 i Pubmed, Cochrane, Cinahl og PsykInfo med søgeordene acupuncture and palliation, acupuncture and cancer, acupuncture and placebo, acupuncture and neurophysiology, acupuncture and palliation and nursing. RCT-forskning viser ikke overbevisende effekt af...
Palliative care concentrates on supporting and helping people with an incurable disease and aims to improve patient’s quality of life by reducing or eliminating pain and other physical symptoms. Palliative care is a new phenomenon in Romania . PhD student Luminita Dumitrescu describes the
Nikbakht-Van de Sande, C V M Vahedi; van der Rijt, C C D; Visser, A Ph; ten Voorde, M A; Pruyn, J F A
stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a region, improved engagement and collaboration between participating organizations, enhanced insight in the health care provisions, joined initiatives for the development of new care products, and organization of patient-tailored care. Important success factors for the networks were deemed: fruitful mutual contacts, regular funding and the collective development of care products. By logistic regression analyses, the collective development of new care products and the organization of case discussions between caregivers from different health care services turned out to be the most important predictors for success of the palliative care networks. Projects that stimulate the communication between professionals appear to improve the mutual collaboration between individual participants and between the participating organizations, which consequently enhances the quality of palliative care.
Reid, Thomas T; Demme, Richard A; Quill, Timothy E
Despite state-of-the-art palliative care, some patients will require proportionate palliative sedation as a last-resort option to relieve intolerable suffering at the end of life. In this practice, progressively increasing amounts of sedation are provided until the target suffering is sufficiently relieved. Uncertainty and debate arise when this practice approaches palliative sedation to unconsciousness (PSU), especially when unconsciousness is specifically intended or when the target symptoms are more existential than physical. We constructed a case series designed to highlight some of the common approaches and challenges associated with PSU and the more aggressive end of the spectrum of proportionate palliative sedation as retrospectively identified by palliative care consultants over the past 5 years from a busy inpatient palliative care service at a tertiary medical center in Rochester (NY, USA). Ten cases were identified as challenging by the palliative care attendings, of which four were selected for presentation for illustrative purposes because they touched on central issues including loss of capacity, the role of existential suffering, the complexity of clinical intention, the role of an institutional policy and use of anesthetics as sedative agents. Two other cases were selected focusing on responses to two special situations: a request for PSU that was rejected; and anticipatory planning for total sedation in the future. Although relatively rare, PSU and more aggressive end-of-the-spectrum proportionate palliative sedation represent responses to some of the most challenging cases faced by palliative care clinicians. These complex cases clearly require open communication and collaboration among caregivers, patients and family. Knowing how to identify these circumstances, and how to approach these interventions of last resort are critical skills for practitioners who take care of patients at the end of life.
Full Text Available Background: Confronting the loss of a loved one leads us to the core questions of human existence. Bereaved parents have to deal with the rupture of a widely shared concept of what is perceived to be the natural course of life and are forced into meaning reconstruction. Objective: This study aims to expand upon existing work concerning specific themes of meaning reconstruction in a sample of bereaved parents. More specifically, the relationship between meaning reconstruction, complicated grief, and posttraumatic growth was analyzed, with special attention focused on traumatic and unexpected losses. Method: In a mixed methods approach, themes of meaning reconstruction (sense-making and benefit-finding were assessed in in-depth interviews with a total of 30 bereaved parents. Posttraumatic growth and complicated grief were assessed using standardized questionnaires, and qualitative and quantitative results were then merged using data transformation methods. Results: In total 42 themes of meaning reconstruction were abstracted from oral material. It was shown that sense-making themes ranged from causal explanations to complex philosophical beliefs about life and death. Benefit-finding themes contained thoughts about personal improvement as well as descriptions about social actions. Significant correlations were found between the extent of sense-making and posttraumatic growth scores (rs=0.54, rs=0.49; p<0.01, especially when the death was traumatic or unexpected (rs=0.67, rs=0.63; p<0.01. However, analysis revealed no significant correlation with complicated grief. Overall results corroborate meaning reconstruction themes and the importance of meaning reconstruction for posttraumatic growth.
McCaffrey, N.; Janabi, H. Al; Currow, D.; Hoefman, R.; Ratcliffe, J.
Introduction: Despite informal caregivers' integral role in supporting people affected by disease or disability, economic evaluations often ignore the costs and benefits experienced by this group, especially in the palliative setting. The purpose of this systematic review is to identify
Køster, Allan; Winther-Lindqvist, Ditte
Our poster outlines the basic analytical and methodological strategy of a pending 3-year investigation into the existential dimensions of grief. The project is divided into two main foci: 1) a retrospective investigation into how bereavement of a parent in childhood/adolescence shapes the various....... Methodologically our design stands out by including a strong focus on the embodied and prereflective dimension of personal existences and connecting this with narrative accounts. The theoretical basis for this approach has been presented in recent publications by the authors (Køster & Winther-Lindqvist 2017...... and Køster 2016, 2017) and will be explicated in the poster session....
Full Text Available The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a losses as different kinds of “deaths,” (b palliative care as a place to negotiate with death, and (c last times as confirmation of the end. These images highlight the meaning attributed to the body and the position of the dying person in our Western society. Representations of palliative care reveal a kind of paradox, a place of respect and of “gentle death,” and a place where death is almost too omnipresent. They also show the strong beliefs surrounding the use of painkillers at the end of life. Finally, these images refer to end-of-life personal rituals viewed as support for the passage into a new state of being. This study provides a better understanding of the common sense of death for family caregivers in a palliative care context and of the meanings of this emotional subject.
Lowton, Karen; Higginson, Irene J
The ways in which teachers in British schools manage bereaved children are underreported. This article reports the impact of students' bereavement and their subsequent management in primary and secondary school classrooms in Southeast London. Thirteen school staff working in inner-city schools took part in in-depth interviews that focused on the impact of bereaved children on the school and how teachers responded to these children.All respondents had previously had contact with a local child bereavement service that aims to provide support, advice, and consultancy to children, their parents, and teachers. Interviews were audiotaped, transcribed verbatim, and analyzed using ATLAS-ti. Three main themes were identified from analysis of interview data. Firstly, British society, culture, local communities, and the family were significant influences in these teachers' involvement with bereaved students. Secondly, school staff managed bereaved students through contact with other adults and using practical classroom measures such as "time out" cards and contact books. Lastly, teachers felt they had to be strong, even when they were distressed. Surprise was expressed at the mature reaction of secondary school students to deaths of others. The article recommends that future research needs to concentrate on finding the most effective way of supporting routinely bereaved children, their families, and teachers.
Li, Jiong; Olsen, Jørn; Vestergaard, Mogens
indicator, and subsequent risk of overweight in school-aged children. Methods: We followed 46,401 singletons born in Denmark who underwent annual health examinations at 7-13 years of age in school of Copenhagen. A total of 492 children experienced bereavement by death of a parent during the first 6 years...... of life. We compared BMI levels, changes in BMI, and the prevalence of overweight at 7-13 years of age between bereaved and non-bereaved children. Results: Between bereaved children and non-bereaved children, there were no differences in average BMI levels at any age or changes in BMI at 7-13 years of age....... Bereavement during the first 6 years of life was not associated with an increased risk of overweight at 7-13 years of age. Conclusion: This study did not support that stress induced by bereavement during the first 6 years of life has significant influence on overweight in later childhood. Copyright © 2012 S...
Macedo, A; Sherr, L; Tomlinson, M; Skeen, S; Roberts, K J
Parental loss is a major stressful event found to increase risk of mental health problems in childhood. Yet, some children show resilient adaptation in the face of adversity across time. This study explores predictors of mental health resilience among parentally bereaved children in South Africa and Malawi, and their cumulative effect. The study also explores whether predictors of resilience differed between orphaned and non-orphaned children. Consecutive attenders of community based organisations (children;4-13 years, and their caregivers) were interviewed at baseline and 15-18 month follow up (n=833). Interviews comprised of inventories on demographic information, family data, child mental health, bereavement experience and community characteristics. Mental health screens were used to operationalise resilience as the absence of symptoms of depression, suicidality, trauma, emotional and behavioural problems. Almost 60% of children experienced parental loss. One quarter of orphaned children showed no mental health problems at either wave and were classified as resilient. There were equal proportions of children classified as resilient within the orphaned (25%) vs. non-orphaned group (22%). Being a quick learner, aiding ill family members, positive caregiving, household employment, higher community support, and lower exposure to domestic violence, physical punishment, or stigma at baseline predicted sustained resilience. There were cumulative influences of resilience predictors among orphaned children. Predictors of resilience did not vary by child age, gender, country of residence or between orphaned and non-orphaned children. This study enhances understanding of resilience in younger children and identifies a number of potential environmental and psychosocial factors for bolstering resilience in orphaned children.
Grønvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims: The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population: The study population is all...... patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion: DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness....
Virginia MUÑIZ FERNÁNDEZ
Full Text Available The main goal of this work is focused on detecting the support needs of people with intellectual disabilities during the bereavement process in order to guide about professional interventions and practices aimed to provide more adequate individualized support to their real needs. The sample consists of 93 adults with ID, with ages ranging from 21 to 72 years old (M = 49.9; SD = 11.79, who have suffered the loss of a significant person. The professionals who worked with them and knew them well completed two questionnaires: Staff Attitude Questionnaire (SAQ and Bereavement Needs Assessment (BNAT. Beside descriptive analyses, results were analyzed according to several variables (i.e., gender, age, level of intellectual disability, and level of dependency. Level of intellectual disability and level of dependency were the ones that resulted significant. In order to provide the best answer to their needs, good practices are suggested such as facilitating the understanding of loss, helping them express feelings and emotions, dealing with each case individually, and encouraging to continue education about death.
Wojtaszczyk, Ann; Glajchen, Myra; Portenoy, Russell K; Berdella, Maria; Walker, Patricia; Barrett, Malcolm; Chen, Jack; Plachta, Amy; Balzano, Julie; Fresenius, Ashley; Wilder, Kenya; Langfelder-Schwind, Elinor; Dhingra, Lara
Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.
This study explored the impact of caregiving for older adults on mobility and travel : patterns. Specifically, the focus was on how caregivers managed trips on behalf of : another who receives care. Caregiving is becoming increasingly common as the :...
... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...
... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...
... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...
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Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van
AIMS: This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles. METHODS: Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers'
Golden, Adam G; Antoni, Charles; Gammonley, Denise
We describe the development and implementation of a home-based palliative care consult service for Veterans with advanced illness. A retrospective chart review was performed on 73 Veterans who received a home-based palliative care consult. Nearly one-third were 80 years of age or older, and nearly one-third had a palliative diagnosis of cancer. The most common interventions of the consult team included discussion of advance directives, completion of a "do not resuscitate" form, reduction/stoppage of at least 1 medication, explanation of diagnosis, referral to home-based primary care program, referral to hospice, and assessment/support for caregiver stress. The home-based consult service was therefore able to address clinical and psychosocial issues that can demonstrate a direct benefit to Veterans, families, and referring clinicians. © The Author(s) 2015.
Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro
Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort. Copyright © 2016 Elsevier Inc. All rights reserved.
Hills, Judith; Paice, Judith A; Cameron, Jacqueline R; Shott, Susan
One's spirituality or religious beliefs and practices may have a profound impact on how the individual copes with the suffering that so often accompanies advanced disease. Several previous studies suggest that negative religious coping can significantly affect health outcomes. The primary aim of this study was to explore the relationship between spirituality, religious coping, and symptoms of distress among a group of inpatients referred to the palliative care consult service. Pilot study. The study was conducted in a large academic medical center with a comprehensive Palliative Care and Home Hospice Program. (1) National Comprehensive Cancer Network Distress Management Assessment Tool; (2) Pargament Brief Religious Coping Scale (Brief RCOPE); (3) Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp); (4) Puchalski's FICA; and (5) Profile of Mood States-Short Form (POMS-SF). The 31 subjects surveyed experienced moderate distress (5.8 +/- 2.7), major physical and psychosocial symptom burden, along with reduced function and significant caregiving needs. The majority (87.2%) perceived themselves to be at least somewhat spiritual, with 77.4% admitting to being at least somewhat religious. Negative religious coping (i.e., statements regarding punishment or abandonment by God) was positively associated with distress, confusion, depression, and negatively associated with physical and emotional well-being, as well as quality of life. Palliative care clinicians should be alert to symptoms of spiritual distress and intervene accordingly. Future research is needed to identify optimal techniques to address negative religious coping.
Li, Jie; Stroebe, Margaret; Chan, Cecilia L W; Chow, Amy Y M
Thirty-four quantitative and 9 qualitative studies are reviewed to indicate current understanding of the nature and impact of guilt in bereavement. This overview suggests that guilt is especially prevalent among some vulnerable subgroups, and it is associated with maladaptive health outcomes. Being male, longer bereavement time, and good end-of life experience seem to be associated with less guilt feelings. However, definition ambiguity, measurement difficulties, and cultural insensitivity are evident in studies. Therefore, a multidimensional conceptualization of guilt and a structural model to guide future investigation of this phenomenon in the bereavement context is proposed.
Clarke, Jean; Quin, Suzanne
In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.
Pesut, B; Hooper, B P; Robinson, C A; Bottorff, J L; Sawatzky, R; Dalhuisen, M
Healthcare models for the delivery of palliative care to rural populations encounter common challenges: service gaps, the cost of the service in relation to the population, sustainability, and difficulty in demonstrating improvements in outcomes. Although it is widely agreed that a community capacity-building approach to rural palliative care is essential, how that approach can be achieved, evaluated and sustained remains in question. The purpose of this community-based research project is to test the feasibility and identify potential outcomes of implementing a rural palliative supportive service (RPaSS) for older adults living with life-limiting chronic illness and their family caregiver in the community. This paper reports on the feasibility aspects of the study. RPaSS is being conducted in two co-located rural communities with populations of approximately 10 000 and no specialized palliative services. Participants living with life-limiting chronic illness and their family caregivers are visited bi-weekly in the home by a nurse coordinator who facilitates symptom management, teaching, referrals, psychosocial and spiritual support, advance care planning, community support for practical tasks, and telephone-based support for individuals who must commute outside of the rural community for care. Mixed-method collection strategies are used to collect data on visit patterns; healthcare utilization; family caregiver needs; and participant needs, functional performance and quality of life. A community-based advisory committee worked with the investigative team over a 1-year period to plan RPaSS, negotiating the best fit between research methods and the needs of the community. Recruitment took longer than anticipated with service capacity being reached at 8 months. Estimated service capacity of one nurse coordinator, based on bi-weekly visits, is 25 participants and their family caregivers. A total of 393 in-person visits and 53 telephone visits were conducted between
Jenewein, J; Moergeli, H; Fauchère, J-C; Bucher, H U; Kraemer, B; Wittmann, L; Schnyder, U; Büchi, S
To assess the impact of extremely preterm birth (24-26 weeks of gestation) on the mental health of parents two to six years after delivery, and to examine potential differences in post-traumatic growth between parents whose newborn infant died and those whose child survived. A total of 54 parents who had lost their newborn and 38 parents whose preterm child survived were assessed by questionnaires with regard to depression and anxiety (HADS) and post-traumatic growth (PTGI). Neither group of parents had clinically relevant levels of depression and anxiety. Mothers showed higher levels of anxiety than fathers. Bereaved parents with no other, living child reported higher levels of depression than bereaved parents with one or more children. Mothers reported higher post-traumatic growth compared to fathers. In particular, bereaved mothers experienced the value and quality of their close social relationships more positively compared to the non-bereaved parents. In the long term, bereaved and non-bereaved parents cope reasonably well with an extremely preterm birth of a child. Post-traumatic growth appears to be positively related to bereavement, particularly in mothers.
Kizawa, Yoshiyuki; Tsuneto, Satoru; Tamba, Kaichiro; Takamiya, Yusuke; Morita, Tatsuya; Bito, Seiji; Otaki, Junji
There is currently no consensus syllabus of palliative medicine for undergraduate medical education in Japan, although the Cancer Control Act proposed in 2007 covers the dissemination of palliative care. To develop a nationwide consensus syllabus of palliative medicine for undergraduate medical education in Japan using a modified Delphi method. We adopted the following three-step method: (1) a workshop to produce the draft syllabus; (2) a survey-based provisional syllabus; (3) Delphi rounds and a panel meeting (modified Delphi method) to produce the working syllabus. Educators in charge of palliative medicine from 63% of the medical schools in Japan collaborated to develop a survey-based provisional syllabus before the Delphi rounds. A panel of 32 people was then formed for the modified Delphi rounds comprising 28 educators and experts in palliative medicine, one cancer survivor, one bereaved family member, and two medical students. The final consensus syllabus consists of 115 learning objectives across seven sections as follows: basic principles; disease process and comprehensive assessment; symptom management; psychosocial care; cultural, religious, and spiritual issues; ethical issues; and legal frameworks. Learning objectives were categorized as essential or desirable (essential: 66; desirable: 49). A consensus syllabus of palliative medicine for undergraduate medical education was developed using a clear and innovative methodology. The final consensus syllabus will be made available for further dissemination of palliative care education throughout the country.
Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo
Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. Copyright © 2015 International Center for Artificial Organs and Transplantation and Wiley Periodicals, Inc.
of health workers to prescribe and/or administer morphine despite the availability of essential ... doses are complex, largely weight related, and side-effect profiles can differ from those of ... psychological, and social distress. • Effective palliative ...
... A Guide to Advance Directives, the Health Care Power of Attorney, and Other Key Documents . Cambridge, MA: Harvard Health Publications. 2013. Oxenham D. Palliative care and pain. In: Walker BR, Colledge NR, Ralston SH, Penman ...
Aoyama, Maho; Morita, Tatsuya; Kizawa, Yoshiyuki; Tsuneto, Satoru; Shima, Yasuo; Miyashita, Mitsunori
This article describes the whole picture of Japan HOspice and Palliative Care Evaluation Study 3 (J-HOPE3 Study) including study design and demographic data. The aims of the J-HOPE3 study were to (1) evaluate the process, structure, and outcome of palliative care in the following care settings: acute hospitals, inpatient hospice/palliative care units (PCUs), and home hospice services; (2) examine bereaved family members' self-reported psychosocial conditions, such as grief and depression, as bereavement outcomes; (3) provide data to ensure and improve the quality of care provided by participating institutions through feedback concerning results for each institution; and (4) perform additional studies to explore specific clinical research questions. We conducted a cross-sectional, anonymous, self-report questionnaire survey involving patients' bereaved family members in 20 acute hospitals, 133 PCUs, and 22 home hospice services between May and July 2014. Two types of questionnaires were used: main and specific studies questionnaires. The questionnaire was sent to totally 13 584, and 10 157 returned the questionnaire. The analysis included 9126 family members' questionnaires from acute hospitals, PCUs, and home hospice services. Respondents' average age was 61.6 years, 55% were women, and 40% had been married to the deceased. With respect to the characteristics of participating institutions, most institutions did not have religious affiliations, and most PCUs and home hospice services provided bereavement care. These results of the analysis of common and additional questionnaires could play an important role in clinical settings, quality improvement, research, and public accountability.
Daggett, Luann M
Spousal bereavement is one of the most profoundly disturbing events encountered in the human life span. Research has shown that conjugal bereavement has significant physical and psychological consequences for the surviving spouse. In American culture, men and women experience bereavement in different ways. The author used in-depth interviews in the tradition of phenomenology to collect data from 8 men aged 41 to 54 years who had experienced the death of their spouse within the previous 8 months to 6 years. The research revealed the lived experience of spousal bereavement to be a journey from the realization of irreconcilable loss through themes of responding to the loss and living through the loss toward reclamation and reconstruction of a life.
Becker, Gerhild; Xander, Carola J; Blum, Hubert E; Lutterbach, Johannes; Momm, Felix; Gysels, Marjolein; Higginson, Irene J
Responses to bereavement may be influenced by characteristics such as age or gender, but also by factors like culture and religion. A systematic review was undertaken to assess whether spiritual or religious beliefs alter the process of grief and/or bereavement. Fifteen computerized databases were searched. Thirty-two studies met the inclusion criteria. Evidence was graded according to the standard grading system of the Clinical Outcomes Group and by the SIGNAL score. In total, 5715 persons were examined: 69% women, 87% white, 83% protestant. Ninety-four percent of studies show some positive effects of religious/spiritual beliefs on bereavement, but there was a great heterogeneity regarding included populations and outcome measurements. Available data do not allow for a definite answer on whether religious/spiritual beliefs effectively influence bereavement as most studies suffer from weaknesses in design and methodological flaws. Further research is needed. Recommendations for further research are given.
Full Text Available BACKGROUND: Little is known about the long-term impact of the killing of a parent in childhood or adolescence during war on distress and disability in young adulthood. This study assessed current prevalence rates of mental disorders and levels of dysfunction among young adults who had lost their father due to war-related violence in childhood or adolescence. METHODS: 179 bereaved young adults and 175 non-bereaved young adults were interviewed a decade after experiencing the war in Kosovo. Prevalence rates of Major Depressive Episode (MDE, anxiety, and substance use disorders, and current suicide risk were assessed using the Mini-International Neuropsychiatric Interview. The syndrome of Prolonged Grief Disorder (PGD was assessed with the Prolonged Grief Disorder Interview (PG-13. Somatic symptoms were measured with the Patient Health Questionnaire. General health distress was assessed with the General Health Questionnaire. FINDINGS: Bereaved participants were significantly more likely to suffer from either MDE or any anxiety disorder than non-bereaved participants (58.7% vs. 40%. Among bereaved participants, 39.7% met criteria for Post-Traumatic Stress Disorder, 34.6% for PGD, and 22.3% for MDE. Bereaved participants with PGD were more likely to suffer from MDE, any anxiety disorder, or current suicide risk than bereaved participants without PGD. Furthermore, these participants reported significantly greater physical distress than bereaved participants without PGD. CONCLUSION: War-related loss during middle childhood and adolescence presents significant risk for adverse mental health and dysfunction in young adulthood in addition to exposure to other war-related traumatic events. Furthermore, the syndrome of PGD can help to identify those with the greatest degree of distress and dysfunction.
The report presents findings and recommendations from the largest survey of bereaved relatives undertaken by two adult acute hospitals in Ireland in conjunction with their academic partners TCD and UCD. The findings provide significant insight into the quality of care delivered at end of life from the perspective of bereaved relatives. This report will be of interest to all healthcare staff involved in improving end-of-life care in acute hospitals and other healthcare settings.
Davaasuren, Odontuya; Ferris, Frank D
Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.
Every people wants to best care and to die painless in their end-stage of life. This is a human right. Therefore, end-of-life care is considered an indicator of health quality all over the world. The ultimate goal of palliative care is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. After the patient\\s death, palliative care focuses primarily on bereavement of the family. T.C. Ministry of Health to find a solution of this important issue as a first step, the preparations for the establishment of palliative care centers and units, training of health personnel started. S.B. Ulus State Hospital as a team we have set out to open a comprehensive palliative care center. Our goal is to contribute on take place of palliative care organization in health system and to the spread across the country. [J Contemp Med 2012; 2(2.000: 122-126
Calderwood, Kimberly A
Theorists currently believe that bereaved people undergo some transformation of self rather than returning to their original state. To advance our understanding of this process, this article presents an adaptation of Prochaska and DiClemente's transtheoretical model of change as it could be applied to the journey that bereaved individuals experience. This theory is unique because it addresses attitudes, intentions, and behavioral processes at each stage; it allows for a focus on a broader range of emotions than just anger and depression; it allows for the recognition of two periods of regression during the bereavement process; and it adds a maintenance stage, which other theories lack. This theory can benefit bereaved individuals directly and through the increased awareness among counselors, family, friends, employers, and society at large. This theory may also be used as a tool for bereavement programs to consider whether they are meeting clients' needs throughout the transformation change bereavement process rather than only focusing on the initial stages characterized by intense emotion.
Prior, A; Fenger-Grøn, M; Davydow, D S
BACKGROUND: Mental stress is associated with higher mortality, but it remains controversial whether the association is causal or a consequence of a higher physical disease burden in those with a high mental stress load. Understanding causality is important when developing targeted interventions. We...... with bereavement rose with increasing number of physical diseases (1.33 v. 7.00 excess death per 1000 person-months for individuals with 0 v. ⩾3 physical conditions during the first month) and was exacerbated by the presence of mental illness. The excess mortality among bereaved individuals was primarily due...... aimed to estimate the effect of mental stress on mortality by performing a 'natural' experiment using spousal bereavement as a disease-independent mental stressor. METHODS: We followed a population-based matched cohort, including all individuals in Denmark bereaved in 1997-2014, for 17 years...
Choi, JiYeon; Tate, Judith A; Hoffman, Leslie A; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P; Given, Barbara A; Sherwood, Paula R
Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers' physical health can assist in identifying critical time points and potential targets for intervention. To describe self-reported fatigue in caregivers of ICU survivors from patients' ICU admission to ≤ 2 weeks, two- and four-months post-ICU discharge. Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form 36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Forty-seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43%-53% of caregivers across the time points, and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients' symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation.
Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian
As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.
Full Text Available Abstract Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815
work of all involved in palliative care and understanding this will ... palliative care. The quality of life for patients and the manner of ... In palliative care, the creation of a safe space for families to talk is important. Communication ... family finds balance only with, and in your ... those relationships that are signifi- cant for the ...
Bickel, Kathleen E; McNiff, Kristen; Buss, Mary K; Kamal, Arif; Lupu, Dale; Abernethy, Amy P; Broder, Michael S; Shapiro, Charles L; Acheson, Anupama Kurup; Malin, Jennifer; Evans, Tracey; Krzyzanowska, Monika K
Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts. Copyright © 2016 by American Society of Clinical Oncology.
Philip, Jennifer; Crawford, Gregory; Brand, Caroline; Gold, Michelle; Miller, Belinda; Hudson, Peter; Smallwood, Natasha; Lau, Rosalind; Sundararajan, Vijaya
Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia. A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as "usual" care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death. Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with
Knops, Rutger R G; Kremer, Leontien C M; Verhagen, A A Eduard
BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high
Knops, Rutger R. G.; Kremer, Leontien C. M.; Verhagen, A. A. Eduard; Beek, L.; Fock, J. M.; Hartvelt-Faber, G.; Mensink, M. O.; Michiels, E. C. M.; Schouten-van Meeteren, A. Y. N.; Uitdehaag, M. J.; Venmans, L. M. A. J.; Verhagen, A. A. E.; de Weerd, W.
Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality
Philip, Jennifer; Gold, Michelle; Brand, Caroline; Miller, Belinda; Douglass, Jo; Sundararajan, Vijaya
Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient. This study seeks to understand the experiences and needs of family carers of people with severe COPD. Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically. The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services. The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.
Davis, Esther L; Deane, Frank P; Barclay, Gregory D; Bourne, Joan; Connolly, Vivienne
The provision of psychological support to caregivers is an important part of the role of the clinical staff working in palliative care. Staff knowledge and attitudes may determine their openness to referring caregivers to a psychological intervention. We recently developed a self-help intervention for grief and psychological distress among caregivers and were interested in exploring the extent to which staff knowledge and attitudes might affect future implementation. The aims of our study were to: (1) examine the acceptability of self-help psychological intervention for caregivers among palliative care clinical staff; (2) examine potential attitudinal barriers toward prolonged grief disorder (PGD) as a diagnosis and interventions for grief; and (3) bolster staff confidence in skills and knowledge in identifying and managing caregiver psychological distress. An anonymous survey was distributed among clinical staff at two inpatient units and two community health services that assessed the acceptability of self-help interventions for caregivers, attitudes about PGD diagnosis and grief intervention, and staff confidence in skills and knowledge in assessing caregiver psychological distress. Overall, clinical staff were positively oriented toward self-help for caregivers and intervention for grief. They were also basically confident in their skills and knowledge. While it was positive PGD attitudes that were associated with acceptability of self-help for caregivers, it was both positive and negative PGD attitudes that were associated more specifically with a willingness to refer caregivers to such an intervention. Our findings are useful in highlighting the issues to be considered in the implementation of a self-help intervention within the healthcare service. Clinical staff seemed positively oriented toward engaging with a psychological intervention for caregivers and likely to act as key allies in implementation.
Morris, Adam T; Gabert-Quillen, Crystal; Friebert, Sarah; Carst, Nancy; Delahanty, Douglas L
Families are referred to pediatric palliative care (PPC) programs when a child is diagnosed with a medical condition associated with less than a full life expectancy. When a child dies, PPC programs typically offer a range of bereavement interventions to these families, often focusing on parents. Currently, it is unclear which factors increase the likelihood that bereaved siblings will experience negative outcomes, limiting the development of empirically supported interventions that can be delivered in PPC programs. The present study explored the relationship between parents' and surviving sibling's mental health symptoms (i.e., post-traumatic stress disorder [PTSD], prolonged grief disorder (PGD), and depression symptoms) after a child's death. Additionally, the extent to which parent functioning indirectly impacted sibling functioning through parenting behaviors (i.e., positive parenting and parent involvement) was also examined, with a specific focus on differences based on parent gender. Sixty bereaved parents and siblings (aged 8-18) who enrolled in a PPC program from 2008 to 2013 completed measures of PTSD, PGD, and depression related to the loss of a child/sibling. Siblings also completed a measure of general parenting behaviors. Maternal, but not paternal, symptoms of PTSD and PGD were directly associated with sibling outcomes. Paternal symptoms were associated with sibling symptoms indirectly, through parenting behaviors (i.e., via decreasing positive parenting). These results underscore the importance of examining both maternal and paternal influences after the death of a child, demonstrate differential impact of maternal vs. paternal symptoms on siblings, and stress the importance of addressing postloss symptoms from a family systems perspective. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Amanda Richter; Julian Müller
This article looks at the bereavement of children left orphaned by the HIV and Aids pandemic that is crippling the continent of Africa. Their bereavement is examined by means of the narrative approach and by integrating this approach with the traditional African art of storytelling. By listening to the stories of three Zulu children, the article gives them the opportunity to express their own unique stories of bereavement: stories that would otherwise have been silenced by the wave of bereave...
Samar M Aoun
Full Text Available Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT, as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC, caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group. At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41. Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family
Full Text Available Abstract Background Earlier results concerning alcohol consumption of bereaved persons are contradictory. The aim of the present study was to analyze the relationship between bereavement and alcohol consumption accounting for time and gender differences on a nationally representative sample from Hungary ("Hungarostudy Epidemiological Panel Survey", N = 4457 Methods Drinking characteristics of mourning persons (alcohol consumption, dependence symptoms, and harmful consequences of alcohol use in the first three years of grief were examined among persons between 18-75 years using the Alcohol Use Disorders Identification Test (AUDIT. Results Men bereaved for one year scored higher on two dimensions of AUDIT (dependence symptoms and harmful alcohol use, while men bereaved for two years scored higher on all three dimensions of AUDIT compared to the non-bereaved. The rate of men clinically at-risk concerning alcohol consumption among the non-bereaved is 12.9%, and among men bereaved for one year is 18.4% (a non-significant difference, while 29.8% (p Conclusion Among bereaved men, the risk of alcohol related problems tends to be higher, which can be shown both among men bereaved for one year as well as men bereaved for two years. Considering the higher morbidity and mortality rates of bereaved men, alcohol consumption might play a mediator role. These facts draw attention to the importance of prevention, early recognition, and effective therapy of hazardous drinking in bereaved men.
Braiden, Hannah Jane; McCann, Monica; Barry, Helen; Lindsay, Carrie
Families bereaved by suicide can experience an extremely intense and complicated grieving process. This can be associated with a range of difficulties and can put bereaved family members at risk of a range of problems. In recognition of this, Barnardo's Child Bereavement Service piloted a two-day residential programme (integrating separate…
Chan, Cecilia L. W.; Chow, Amy Y. M.; Ho, Samuel M. Y.; Tsui, Yenny K. Y.; Tin, Agnes F.; Koo, Brenda W. K.; Koo, Elaine W. K.
This study explores the bereavement process of Chinese persons in Hong Kong, with the focus on how they make meaning of the death as well as how they maintain a bond with the deceased. A review of video- and audiotapes of 52 bereaved persons in bereavement counseling pointed to how these concepts are reflected in key themes that appeared…
Smith, Peggy C.; And Others
Examined belief in afterlife and bereavement recovery following death by suicide, homicide, accident, or natural causes. Bereaved persons (n=121) completed scales measuring belief in afterlife, impact of event, perceived recovery, spiritual well-being, emotional pain, and social support. Feeling of recovery following bereavement appeared enhanced…
Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette
Chapter 11 by Kirsten Halskov Madsen, Anette Meldgaard and Jette Henriksen deals with the development of palliative care programmes aimed at the basic level of palliative care practice. The need to develop educational opportunities at particularly this level – described as ‘the basic inter......-professional level of palliative care’ – has been increasing for many years where palliative care has conventionally and primarily been associated with specialist training. As the authors show – based on a mapping out of existing educational initiatives in a region of Denmark, a reading of the curriculum...... and a description of the organization of palliative care – there is a need for such inter-professional palliative care that raises the level of competences at the basic level and the sharing of knowledge as well as securing the continuous qualifying of healthcare staff working with palliative care....
Full Text Available The sudden death of a friend or relative, particularly by suicide, is a risk factor for suicide. People who experience sudden bereavement report feeling highly stigmatised by the loss, potentially influencing access to support. We assessed whether perceived stigma following sudden bereavement is associated with suicidal thoughts and suicide attempt. We analysed cross-sectional survey data on 3387 young adults bereaved by the sudden death of a close contact. We tested the association of high versus low perceived stigma (on the stigma sub-scale of the Grief Experience Questionnaire with post-bereavement suicidal ideation and suicide attempt, using random effects logistic regression, adjusting for socio-demographic factors, pre-bereavement psychopathology, and mode of sudden bereavement (natural causes/unnatural causes/suicide. Subjects with high perceived stigma scores were significantly more likely to report post-bereavement suicidal thoughts (adjusted odds ratio (AOR = 2.74; 95% confidence interval (CI = 1.93–3.89 and suicide attempt (AOR = 2.73; 95% CI = 2.33–3.18 than those with low stigma scores. People who feel highly stigmatised by a sudden bereavement are at increased risk of suicidal thoughts and suicide attempt, even taking into account prior suicidal behaviour. General practitioners, bereavement counsellors, and others who support people bereaved suddenly, should consider inquiring about perceived stigma, mental wellbeing, and suicidal thoughts, and directing them to appropriate sources of support.
udgave af den amerikanske diagnose-manual (DSM-V) er sorg ikke blevet anerkendt som diagnostisk kategori. I stedet diagnosticeres sorgen som depression, men dette giver nogle kliniske problemstillinger i forhold til intervention. Denne artikel ser nærmere på kompliceret sorg som en tabsrelateret lidelse...
Rodríguez-Álvaro, Martín; García-Hernández, Alfonso Miguel; Brito-Brito, Pedro Ruymán; Aguirre-Jaime, Armando; Fernández-Gutiérrez, Domingo Ángel
Nursing care in bereavement is complex. Primary health care is the ideal setting to support the bereaved, but we do not know much about the care plans designed by primary health care nurses in the treatment of grief. To identify the outcomes criteria and interventions planned by nurses for mourners with and without complications in the Canary Islands. Retrospective longitudinal study, using the electronic health records of the Canary Islands health service of people with a diagnosis of grieving, risk of complicated grieving and complicated grieving, in the period 2009-2014. NOC outcomes criteria were recorded in 67% of the mourners, and up to 24 different outcomes were identified. The main outcomes measures were Grief resolution; Psychosocial adjustment, Life change; Coping; Family coping; Family social climate and Caregiver emotional health. The remaining outcomes were present in less than 1% of the mourners. Although the outcomes criteria proposed by nurses in the mourners with and without complications were quite homogeneous, differences in interventions were found. In 67% of the cases, NIC interventions were reported. Ninety-nine different interventions were identified in the mourners; the most frequent were Emotional support; Grief work facilitation; Active listening; Coping enhancement and counselling. The remaining identified interventions were present in less than 5% of patients. The main interventions in the mourners with complications were Grief work facilitation; Coping enhancement; Active listening; Counselling and Family integrity promotion. Nurses state that there are more interventions and outcomes in mourners with complications. Given the few methodologically reliable studies that prove their effectiveness, continued research in this area is recommended. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.
Nuzum, Daniel; Meaney, Sarah; O'Donoghue, Keelin
To explore the lived experiences and personal impact of stillbirth on bereaved parents. Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies born following fetal death at a tertiary university maternity hospital in Ireland with a birth rate of c8,500 per annum and a stillbirth rate of 4.6/1000. Stillbirth had a profound and enduring impact on bereaved parents. Four superordinate themes relating to the human impact of stillbirth emerged from the data: maintaining hope, importance of the personhood of the baby, protective care and relationships (personal and professional). Bereaved parents recalled in vivid detail their experiences of care following diagnosis of stillbirth and their subsequent care. The time between diagnosis of a life-limiting anomaly or stillbirth and delivery is highlighted as important for parents as they find meaning in their loss. The impact of stillbirth on bereaved parents is immense and how parents are cared for is recalled in precise detail as they revisit their experience. Building on existing literature, these data bring to light the depth of personal experience and impact of stillbirth for parents and provides medical professionals with valuable insights to inform their care of bereaved parents and the importance of clear and sensitive communication.
Michelson, Kelly Nicole; Blehart, Kathleen; Hochberg, Todd; James, Kristin; Frader, Joel
Reports of in-hospital bereavement photography focus largely on stillborns and neonates. Empiric data regarding the implementation of bereavement photography in pediatrics beyond the neonatal period and the impact of such programs on healthcare professionals (HCPs) is lacking. We describe the implementation of a pediatric intensive care unit (PICU) bereavement photography program and use questionnaire data from HCPs to describe HCPs’ reflections on the program and to identify program barriers. From July, 2007 through April, 2010 families of 59 (36%) of the 164 patients who died in the PICU participated in our bereavement photography program. Forty questionnaires from 29 HCPs caring for 39 participating patients/families indicated that families seemed grateful for the service (n=34, 85%) and that the program helped HCPs feel better about their role (n=30, 70%). Many HCPs disagreed that the program consumed too much of his/her time (n=34, 85%) and that the photographer made his/her job difficult (n=37, 92.5%). Qualitative analysis of responses to open ended questions revealed four categories: the program’s general value; positive aspects of the program; negative aspects of the program; and suggestions for improvements. Implementing bereavement photography in the PICU is feasible though some barriers exist. HCPs may benefit from such programs. PMID:24520925
Park, Sang Min; Kim, Young Jin; Kim, Samyong; Choi, Jong Soo; Lim, Ho-Yeong; Choi, Youn Seon; Hong, Young Seon; Kim, Si-Young; Heo, Dae Seog; Kang, Ki Moon; Jeong, Hyun Sik; Lee, Chang Geol; Moon, Do Ho; Choi, Jin-Young; Kong, In Sik; Yun, Young Ho
Family caregivers play an important role in caring for cancer patients, but the impact of caregivers' unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood. We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL). Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P < 0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR) = 7.55; 95% confidential interval (CI) 3.80-15.00), psychosocial support (aOR = 6.24; 95% CI 2.95-13.05), symptom management (aOR = 3.21; 95% CI 2.26-4.54), community support (aOR = 3.82; 95% CI 2.38-6.11), or religious support (aOR = 4.55; 95% CI 1.84-11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR = 1.21; 95% CI 1.00-1.47), psychosocial support (aOR = 1.99; 95% CI 1.37-2.88), and religious support (aOR = 1.73; 95% CI 1.08-2.78) than those of patients receiving palliative hospice care. Caregivers' unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.
Khan, Robyna Irshad
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
Full Text Available Critical junctures in patients′ lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.
Goenka, Mahesh Kr; Goenka, Usha
Hilar cholangiocarcinomas are common tumors of the bile duct that are often unresectable at presentation. Palliation, therefore, remains the goal in the majority of these patients. Palliative treatment is particularly indicated in the presence of cholangitis and pruritus but is often also offered for high-grade jaundice and abdominal pain. Endoscopic drainage by placing stents at endoscopic retrograde cholangio-pancreatography (ERCP) is usually the preferred modality of palliation. However, for advanced disease, percutaneous stenting has been shown to be superior to endoscopic stenting. Endosonography-guided biliary drainage is emerging as an alternative technique, particularly when ERCP is not possible or fails. Metal stents are usually preferred over plastic stents, both for ERCP and for percutaneous biliary drainage. There is no consensus as to whether it is necessary to place multiple stents within advanced hilar blocks or whether unilateral stenting would suffice. However, recent data have suggested that, contrary to previous belief, it is useful to drain more than 50% of the liver volume for favorable long-term results. In the presence of cholangitis, it is beneficial to drain all of the obstructed biliary segments. Surgical bypass plays a limited role in palliation and is offered primarily as a segment III bypass if, during a laparotomy for resection, the tumor is found to be unresectable. Photodynamic therapy and, more recently, radiofrequency ablation have been used as adjuvant therapies to improve the results of biliary stenting. The exact technique to be used for palliation is guided by the extent of the biliary involvement (Bismuth class) and the availability of local expertise. PMID:25232449
® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...
Pitman, Alexandra; Khrisna Putri, Adelia; De Souza, Tanisha; Stevenson, Fiona; King, Michael; Osborn, David; Morant, Nicola
People bereaved by suicide are at an increased risk of suicide and of dropping out of education or work. Explanations for these associations are unclear, and more research is needed to understand how improving support in educational or work settings for people bereaved by suicide might contribute to reducing suicide risk. Our objective was to explore the impact of suicide on occupational functioning. We conducted a cross-sectional online study of bereaved adults aged 18-40, recruited from staff and students of British higher educational institutions in 2010. We used thematic analysis to analyse free text responses to two questions probing the impact of suicide bereavement on work and education. Our analysis of responses from 460 adults bereaved by suicide identified three main themes: (i) specific aspects of grief that impacted on work performance, cognitive and emotional domains, and social confidence; (ii) structural challenges in work or educational settings including a lack of institutional support, the impact of taking time off, and changes to caring roles; and (iii) new perspectives on the role of work, including determination to achieve. Institutional support should be tailored to take account of the difficulties and experiences described.
Jamwal, Nisha Rani; Kumar, Senthil Paramasivam
This review article is aimed to explore the use of the social media website YouTube (www.youtube.com) as an evidence resource in palliative care, for patients and caregivers, students and professionals, and providers and policy-makers in developing countries’ settings. The reviewed evidence reiterated the role of this social media website in palliative care practice, education and research in the area of cancer. Efficacy studies on impact of such media on palliative care delivery in developing countries are still lacking. PMID:26962290
Angela Maria Amaral Soares Abou Ali
Full Text Available In recent years elderly population is increasing substantially, about 650,000 per year, as well as the concept of unifamílies, ie, families consisting of a single person. In this paper, is proposed a reflection about health of elderly in Brazil, and the conditions of a chronic disease and its acute state - terminal. In the actual society, capitalist and capitalized, the individual is valued by his production, losing his value when acquires a disabling illnesses. There is a growing need for work, and each time there is less time and resources to manage the permanence of an elderly patient at home, or pay for a caregiver. This situation leads families to resort to hospitalization, which in turn makes the hospitals overcrowded with patients in this state, affecting both emergency care as the treatment of chronic patients. This fact occurs due to lack of hospital infrastructure, as well by the lack of units of the healthy system capable of providing palliative care. The questioning about the elderly who need palliative care, and reflection about the type of care dispended for this kind of patient, should be the focal point of professional's reflections, capable to lead him to a new way of thinking and, consequently, to inspire him to act in a new way.
Jones, Barbara L; Contro, Nancy; Koch, Kendra D
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.
Denckla, Christy A; Bornstein, Robert F; Mancini, Anthony D; Bonanno, George A
The Relationship Profile Test is a widely used measure of dependency, detachment, and healthy dependency that has been examined in both clinical and nonclinical settings, though researchers have yet to validate this measure among conjugally bereaved adults. The present study examines the construct validity of a three-facet model of dependency-detachment by comparing relationships among self-report, semistructured interview-rated, and knowledgeable informant-rated functioning among conjugally bereaved adults. Participants (N = 112) included bereaved adults (M = 51.1 years; SD = 9.7) who had experienced the loss of a spouse 1.5 to 3 years prior to taking part in this study. Findings indicate adequate psychometric properties and theoretically expected associations with various measures of wellness and health including satisfaction with life, coping flexibility, somatic complaints, and ego resiliency. Results draw attention to adaptive correlates of dependency, suggesting potentially beneficial mental health interventions. © The Author(s) 2014.
Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo
The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities
Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana
The purpose of this review is to provide an update on palliative sedation in palliative and end-of-life care. Palliative sedation is the medical procedure used to deal with refractory symptoms in advanced cancer patients when all other specific approaches have failed. Palliative sedation, in the strictest sense of the term, is a proportionate (proportionate palliative sedation, PPS) and intrinsically variable procedure used on an individual basis to relieve refractory symptoms in terminally ill patients, without the intention of hastening death. Completely separate from any other end-of-life decision and not intended to hasten death, palliative sedation has been shown not to have a detrimental impact on survival. To maintain palliative sedation as a legitimate clinical procedure from any ethical or clinical point of view, it must be limited to the restricted area for which it was conceived, that is, relief from refractory suffering as deemed necessary by a patient and by an experienced palliative care team. In this way, there is no risk of associating palliative sedation with other end-of-life decisions. Close collaboration is needed between oncologists and palliative care physicians for this clinical procedure.
Rolls, L; Payne, S
The purpose of the study was to identify the location, range and type of childhood bereavement service provision in the UK. A questionnaire was mailed to 127 services who were either solely dedicated to childhood bereavement or who offered a service within the range of work of a host organization and for which there was a supporting organizational structure. Responses were received from 108 services (a response rate of 85%). The findings identified that 85% of childhood bereavement services are located in the voluntary sector; 14% are dedicated childhood bereavement services, while 86% are offered as part of a host organization. Forty-four per cent of host organizations are hospices. The majority of services (73%) relied on both paid and unpaid staff, with 11% relying entirely on paid staff and 14% of services relying entirely on unpaid staff. The interventions offered ranged from individual family work (86%), individual child work (62%), groupwork with families (53%) and groupwork with children (45%). In addition, services offered prebereavement support (64%), a 'drop-in' service (17%), information and advice (95%), training (32%) and the provision of resources (88%). As well as offering a service to children and their families, 74% of childhood bereavement services provided a service to 'secondary users', such as schools (66%), the emergency services (28%) and other professionals (63%). In terms of funding, 12% of services relied solely on external sources of funding, including donations, legacies, revenue from the host organization or grants, while 12% of services relied solely on internal sources of funding, including fundraising and training. The majority of services (73%), however, gained income from a range of sources. The study identifies the diversity of provision that has implications for the evaluation of childhood bereavement services.
De Clercq, Eva; Rost, Michael; Pacurari, Nadia; Elger, Bernice S; Wangmo, Tenzin
Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines. To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies. Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams. Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.
Full Text Available Palliative care refers to offering physical, psychosocial and spiritual care to patients who are suffering from life threatening diseases. It also includes providing psychological support for family members and other close relations during the period of illness (anticipatory grief and in the period of bereavement and mourning after the patient's death. The choice of therapy during the process of bereavement and mourning is Family Focused Grief Therapy (FFGT. FFGT is a brief, focused and time-limited psychotherapeutic model of intervention belonging to family psychotherapy which is specified for the families that face a life threatening disease of a family member. FFGT, with some modifications, can be applied in work with the families who are facing a terminal illness of younger family members - a child or an adolescent. FFGT typically comprises of 7 to 9 sessions lasting for 90 minutes, which are arranged flexibly across 9 to 18 months, depending on the needs of each family individually. It is important to emphasize that the frequency and number of sessions in each phase depend on the specific features and needs of each particular family. The intervention aim of FFGT is to prevent the complications of bereavement by enhancing the functioning of the family, through exploration of its cohesion, communications (of thoughts and feelings, and handling of conflict. The story of illness and the related grief is shared in the process. The creator of this model is Dr David Kissane, a psychiatrist and a family psychotherapist from Melbourne, Australia, who also worked at the Memorial Sloan Kettering Cancer Centre in New York. The main aims of this article are, on the one hand, to introduce this very useful model of the family therapy to the professional community in Serbia and, on the other, to introduce a conceptual and practical frame of palliative care.
Shin, Dong Wook; Choi, JiEun; Miyashita, Mitsunori; Choi, Jin Young; Kang, Jina; Baik, Young Ji; Mo, Ha Na; Choi, Jong Soon; Son, Young Sun; Lee, Hae Sook
No systematic or comprehensive attempts have yet been made to assess quality of death as an indicator of palliative care outcomes in Korea, and no validated instruments exist for the assessment of a good death in Koreans. This study examined the validity and reliability of the Korean version of the Good Death Inventory (GDI), which was developed in Japan to evaluate the quality of death from the perspective of bereaved family members. Forward and backward translations and a pilot test were conducted. In a multicenter cross-sectional survey, a questionnaire packet, including the GDI, overall quality of life during the last week, and overall satisfaction with care, was mailed to bereaved family members (n=501) of patients who had died from cancer two to six months before the study. Descriptive analyses were performed, including response rate, mean, median, skewness, and kurtosis for each item. The reliability of the GDI was tested by Cronbach's alpha. The dimensional structure was assessed using confirmatory factor analyses. Concurrent validity was tested by correlation with the overall quality of life and overall satisfaction with care. Participants were able to complete the GDI, and the compliance rates were satisfactory. Cronbach's alpha coefficient for internal consistency was 0.93 overall and ranged from 0.69 to 0.94 for subdomains. The hypothesized 18-factor model of a good death appeared to fit the data (goodness of fit index [GFI]=0.964; adjusted GFI index=0.960; normal fit index=0.952). The overall scores on the GDI correlated with patients' quality of life (0.56; P<0.001) and overall satisfaction with care (0.44; P<0.001). The Korean version of the GDI is a reliable and valid measure of the comprehensive outcomes of palliative care from the perspective of bereaved Korean family members. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
... pain and headaches Stress and depression As a caregiver, what can I do to take care of my ... caregiving. Accept that there is a limit to what you can do as a caregiver. Recognize when you feel overwhelmed or are physically ...
Rumpold, T; Schur, S; Amering, M; Ebert-Vogel, A; Kirchheiner, K; Masel, E; Watzke, H; Schrank, B
Home care of advanced cancer patients often has adverse effects on physical and mental health of family caregivers. Little is known about the long-term effects of continuous caregiving on mental health as compared with the effects of bereavement. The objectives of this study were to describe the course of psychiatric morbidity in family caregivers over time, to identify the impact of the patients' death on caregivers, and to explore possible predictor variables for psychiatric morbidity. This multi-institutional, prospective study included 80 family caregivers of 80 advanced cancer patients for baseline and 9 months follow-up assessment. Possible psychiatric disorders (ie, depression, anxiety, posttraumatic stress disorder, and alcohol abuse/dependence) as well as potentially predictive factors (ie, sociodemographic factors, burden, hope, and coping mechanisms) were assessed. Follow-up assessment was conducted on average 9.2 months (±2.9) after baseline assessment. Prevalence rates of anxiety and posttraumatic stress disorder decreased significantly over time, whereas depression and alcoholism remained stable. Bereavement was experienced by 53% of caregivers in the follow-up period. The patients' death had no influence on psychiatric morbidity at follow-up. Predictors for the development of a psychiatric disorder varied according to condition, with hope and emotion-oriented coping identified as important influences, especially for anxiety and depression. Family caregivers with certain psychiatric disorders might need targeted psychosocial support to ensure their mental well-being and prevent long-term disability. Supporting hope and functional coping strategies early after the patient's diagnosis might limit development and extent of psychiatric morbidity. Copyright © 2016 John Wiley & Sons, Ltd.
The purpose of this article is to inform the reader that a commonality in grief and bereavement exists even though it is highly individualized. Health care providers and consumers of health care should realize and understand the potential for bias and miscommunication when there is delivery of care from non-similar cultures. Grief and bereavement are two of many issues existing in the health care delivery system which can result in substandard delivery of care as a result of cultural insensitivity and cultural incompetence.
Thompson, Neil; Allan, June; Carverhill, Philip A; Cox, Gerry R; Davies, Betty; Doka, Kenneth; Granek, Leeat; Harris, Darcy; Ho, Andy; Klass, Dennis; Small, Neil; Wittkowski, Joachim
Dying, death, and bereavement do not occur in a social vacuum. How individuals and groups experience these phenomena will be largely influenced by the social context in which they occur. To develop an adequate understanding of dying, death, and bereavement we therefore need to incorporate a sociological perspective into our analysis. This article examines why a sociological perspective is necessary and explores various ways in which sociology can be of practical value in both intellectual and professional contexts. A case study comparing psychological and sociological perspectives is offered by way of illustration.
Pitman, Alexandra; Rantell, Khadija; Marston, Louise; King, Michael; Osborn, David
The sudden death of a friend or relative, particularly by suicide, is a risk factor for suicide. People who experience sudden bereavement report feeling highly stigmatised by the loss, potentially influencing access to support. We assessed whether perceived stigma following sudden bereavement is associated with suicidal thoughts and suicide attempt. We analysed cross-sectional survey data on 3387 young adults bereaved by the sudden death of a close contact. We tested the association of high v...
Yamamoto, Sena; Arao, Harue; Masutani, Eiko; Aoki, Miwa; Kishino, Megumi; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori
Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P decision making without knowing the patient's wishes and values (P making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Tseng, Fu-Min; Petrie, Dennis; Wang, Shaolin; Macduff, Colin; Stephen, Audrey I
This paper estimates the impact of spousal bereavement on hospital inpatient use for the surviving bereaved by following the experience of 94,272 married Scottish individuals from 1991 until 2009 using a difference-in-difference model. We also consider the sample selection issues related to differences in survival between the bereaved and non-bereaved using a simple Cox Proportional-Hazard model. Before conducting these estimations, propensity score approaches are used to re-weight the non-bereaved to generate a more random-like comparison sample for the bereaved. We find that those bereaved who survive are both more likely to be admitted and to stay longer in hospital than a comparable non-bereaved cohort. Bereavement is estimated to induce on average an extra 0.24 (95% CI [0.15, 0.33]) hospital inpatient days per year. Similar to previous studies, we estimate the bereaved have a 19.2% (95% CI [12.5%, 26.3%]) higher mortality rate than the comparable non-bereaved cohort. Copyright © 2017 John Wiley & Sons, Ltd.
Wolf, Michael T
Palliative sedation is a technique of providing a sedative for end-of-life care to patients with intractable pain. The literature discusses the techniques and use of palliative sedation. Numerous articles have been written regarding the issues surrounding its use, but no literature has discussed the prescription or administration of palliative sedation by a nurse anesthetist. By understanding the concept and ethics involved in its use and providing nursing care that is theory based, the author argues that the involvement of nursing anesthesia is appropriate and within the scope of practice. Few other healthcare disciplines can provide the patient care and empirical knowledge that is imperative in the care of the dying patient. This article discusses the concept and ethics of palliative sedation and presents a case of providing palliative sedation to a terminally ill patient by an experienced nurse anesthetist. Palliative sedation should be understood, embraced, and utilized as an area of expertise suited for nursing anesthesia.
Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ... Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,364 views 3:29 Perinatal Palliative Care - ...
Raymond, Anita; Lee, Susan F; Bloomer, Melissa J
To investigate nurses' roles and responsibilities in providing bereavement care during the care of dying patients within acute care hospitals. Bereavement within acute care hospitals is often sudden, unexpected and managed by nurses who may have limited access to experts. Nurses' roles and experience in the provision of bereavement care can have a significant influence on the subsequent bereavement process for families. Identifying the roles and responsibilities, nurses have in bereavement care will enhance bereavement supports within acute care environments. Mixed-methods systematic review. The review was conducted using the databases Cumulative Index Nursing and Allied Health Literature Plus, Embase, Ovid MEDLINE, PsychINFO, CareSearch and Google Scholar. Included studies published between 2006-2015, identified nurse participants, and the studies were conducted in acute care hospitals. Seven studies met the inclusion criteria, and the research results were extracted and subjected to thematic synthesis. Nurses' role in bereavement care included patient-centred care, family-centred care, advocacy and professional development. Concerns about bereavement roles included competing clinical workload demands, limitations of physical environments in acute care hospitals and the need for further education in bereavement care. Further research is needed to enable more detailed clarification of the roles nurse undertake in bereavement care in acute care hospitals. There is also a need to evaluate the effectiveness of these nursing roles and how these provisions impact on the bereavement process of patients and families. The care provided by acute care nurses to patients and families during end-of-life care is crucial to bereavement. The bereavement roles nurses undertake are not well understood with limited evidence of how these roles are measured. Further education in bereavement care is needed for acute care nurses. © 2016 John Wiley & Sons Ltd.
Full Text Available The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.
Palliative sedation has become a standard practice to treat refractory symptoms at end-of-life. Dyspnea and delirium are the two most commonly treated symptoms. The medications used in palliative sedation are usually benzodiazepines, barbiturates, antipsychotics, and/or anesthetics. Some ethical considerations remain, especially surrounding the use of palliative sedation in psychological distress and existential suffering. Copyright © 2016 Elsevier Inc. All rights reserved.
Patients with advanced cancer often suffer from multiple intractable physical symptoms. Though majority of the symptoms can be controlled, in some of the patients these symptoms remain refractory and uncontrolled till the end. Palliative sedation (PS) is one of the ways to relieve intractable suffering of the dying cancer patients. The main concern while using PS is its life-shortening effect. This case report describes the feasibility of administering PS in Indian home settings. PMID:22837615
Full Text Available Patients with advanced cancer often suffer from multiple intractable physical symptoms. Though majority of the symptoms can be controlled, in some of the patients these symptoms remain refractory and uncontrolled till the end. Palliative sedation (PS is one of the ways to relieve intractable suffering of the dying cancer patients. The main concern while using PS is its life-shortening effect. This case report describes the feasibility of administering PS in Indian home settings.
Fukui, Sakiko; Fujita, Junko; Tsujimura, Mayuko; Sumikawa, Yuka; Hayashi, Yayoi
To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings. A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%). Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings. This study demonstrated the importance of both the hospital and community nurses' role in increasing the patients' chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients' clinical status, and caregivers' ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control. Crown Copyright © 2011. Published by Elsevier Ltd. All rights reserved.
Washington, Karla T; Albright, David L; Parker Oliver, Debra; Gage, L Ashley; Lewis, Alexandria; Mooney, Megan J
We sought to determine the frequency with which hospice and palliative social workers encounter patients, family caregivers, and other clients at risk of suicide, and to discover the extent to which hospice and palliative social workers feel prepared to address issues related to suicide in their professional practice. We conducted a cross-sectional survey of hospice and palliative social workers, recruiting a convenience sample of volunteer respondents through advertisements at professional conferences and listservs, and via social media accounts associated with national organizations, state hospice and palliative care associations, and individual healthcare professionals. Most respondents reported having worked with patients, family caregivers, or other clients who had exhibited warning signs of suicide during the previous year. Fewer respondents indicated that they had worked with patients and family members who had attempted or died by suicide. While the majority of respondents believed they possessed sufficient knowledge and skills to intervene effectively with individuals at risk of suicide, they indicated that additional education on this topic would be valuable for their professional practice. These study results suggest that suicide-related competencies are important in the practice of hospice and palliative social work. Future education and training efforts should include skill development in addition to knowledge building.
Nilmanat, Kittikorn; Street, Annette
Facing an incurable prognosis Thai families search for a cure for AIDS using all possible means available to them. This paper reports a longitudinal narrative case study of eight family caregivers caring for a relative with AIDS in rural Southern Thailand. The paper demonstrates how the caregivers living with a person with AIDS made sense of illness episodes, and how they chose and evaluated particular treatments and care. Caregivers moved between modern medicine, traditional/folk medicine, supernatural healing rites, religious performances, and home remedies in their search for a cure. The findings indicate that a more holistic and palliative approach is needed toward AIDS care.
Elklit, Ask; Reinholt, N.; Nielsen, Louise Hjort
The aim of this study was to assess post-traumatic stress disorder (PTSD) and predictors of PTSD in individuals who experienced the loss of a close relative to cancer. A total of 251 bereaved relatives ages 14 to 76 (M = 41.3, SD = 16.8) were recruited at a counseling service for cancer patients...
Radosh, Alice; Simkin, Linda
Despite increasing awareness of the importance of sexuality for older adults, research and popular literature rarely acknowledge what we term "sexual bereavement" - mourning the loss of sexual intimacy when predeceased. The reluctance to acknowledge sexual bereavement may create "disenfranchised grief" leaving the bereaved unsupported in coping with this aspect of mourning. This preliminary study focuses on women in the United States and sought to determine whether they anticipate missing sex if predeceased, whether they would want to talk about this loss, and identified factors associated with communicating about sexual bereavement. Findings from our survey of 104 women, 55 years and older, most of whom were heterosexual, revealed that a large majority (72%) anticipates missing sex with their partner and 67% would want to initiate a discussion about this. An even higher percentage would want friends to initiate the topic. Yet, 57% of participants report it would not occur to them to initiate a discussion with a widowed friend about the friend's loss. Disenfranchised grief can have negative emotional and physical consequences. This paper suggests a role for friends and professionals in addressing this neglected issue. Copyright © 2016 Elsevier Inc. All rights reserved.
Marshall, Ronald; Sutherland, Patsy
The objectives of this article are to discuss the various types of behaviors associated with grief and bereavement, and to examine the relationships, consequences, and outcomes of bereavement practices among the various religious and ethnic groups in the English-speaking Caribbean Islands of Jamaica, Trinidad, Grenada, and Barbados. The rituals associated with death and grief differs across cultures and is greatly influenced by religious beliefs and traditions. How these rituals are played out depend on the culture of origin and level of acculturation of the various groups into mainstream society. In the Caribbean region, expressions of grief represent religious and cultural traditions that may have a significant impact on social relations, particularly in multi-ethnic and multicultural societies. In the English-speaking Caribbean Islands of Jamaica, Trinidad, Grenada, and Barbados, mourning follows the patterns of traditional religious practices which have remained consistent over time. While families and friends may offer social support before and after burial or cremation, the social aspects of bereavement may also have implications for inter-group relations. Insights into bereavement practices and what it holds for ethnic and religious groups in contemporary Caribbean are presented.
Fox, Jesse; Jones, K. Dayle
The mood disorder work group has proposed to eliminate the bereavement exclusion criterion from the diagnosis of major depression in the 5th edition of the American Psychiatric Association's (2012) "Diagnostic and Statistical Manual of Mental Disorders." The proposal would break tradition with the long-held distinction between…
Li, Jie; Stroebe, Margaret; Chan, Cecilia L.W.; Chow, Amy Y.M.
The rationale, development, and validation of the Bereavement Guilt Scale (BGS) are described in this article. The BGS was based on a theoretically developed, multidimensional conceptualization of guilt. Part 1 describes the generation of the item pool, derived from in-depth interviews, and review
Walker, Andrea C.; Gewecke, Rachelle; Cupit, Illene N.; Fox, Jeffrey T.
This phenomenological study, based on ecological systems theory, examined the college student bereavement experience in a Christian university. Undergraduate students (N = 127) from a small Christian university provided answers to open-ended questions about their experiences regarding college following a death loss. Results indicate that students…
McFerran, Katrina; Roberts, Melina; O'Grady, Lucy
Qualitative investigations have indicated that music therapy groups may be beneficial for bereaved teenagers. The existing relationship between young people and music serves as a platform for connectedness and emotional expression that is utilised within a therapeutic, support group format. This investigation confirms this suggestion through…
Music therapy is a promising intervention with bereaved youth. In comparison to other programs, it appears particularly effective for promoting the resolution of grief-related feelings; providing opportunities to express and release feelings through musical participation. Descriptions from music therapy participants are supported by research…
van Denderen, Mariëtte; de Keijser, Jos; Kleen, Marco; Boelen, Paul A.
In the literature on bereavement, claims are made that homicidal loss is associated with posttraumatic stress reactions, depression, and other severe mental health problems. It is surprising that only a few studies have investigated the nature and prevalence of emotional symptoms following homicidal
Floerchinger, Debra S.
One of the developmental challenges that a college student may have to face is the death of a significant other, friend, spouse, relative, child, or parent. This article reviews the literature on the potential effects of bereavement on a college student with respect to Erik Erikson's stage six of psychosocial development (intimacy versus…
Stroebe, M.S.; Stroebe, W.; Schut, H.A.W.; Boerner, Kathrin
Bereavement research is reaching the hundred-year landmark of the publication of Freud’s classic 1917 ‘Mourning and Melancholia’, an essay of great significance for subsequent theoretical developments, particularly — in the current context — with regard to the centrality placed on ‘grief work’ in
Li, Jie; Stroebe, Margaret; Chan, Cecilia L. W.; Chow, Amy Y. M.
Thirty-four quantitative and 9 qualitative studies are reviewed to indicate current understanding of the nature and impact of guilt in bereavement. This overview suggests that guilt is especially prevalent among some vulnerable subgroups, and it is associated with maladaptive health outcomes. Being
Death Studies, 1993
Notes that International Work Group on Death, Dying, and Bereavement recognizes wide variation of attitudes, beliefs, and behaviors pertaining to childhood death, dying, and bereavement. Statement identifies set of assumptions which can serve as guidelines, across cultures, in care of children with terminal illness and their families. (Author/NB)
van Breemen, Camara
To be truly comprehensive, palliative care for children must address more than pain control and symptom management. Holistic care also encompasses attention to the child's relationships, hopes, fears and wishes. Parents and caregivers of dying children are generally the primary decision-makers in the child's care and can find the transition from active, to palliative care, particularly difficult. Nurses who understand the parents' perspective can better support them. Children reveal their hopes and fears through play. By being attuned to symbols and themes in play, nurses can better interpret the dying child's journey. Nurses can facilitate communication and connection between parents and child and thereby promote healing during the dying process.
Class, Quetzal A.; Abel, Kathryn M.; Khashan, Ali S.; Rickert, Martin E.; Dalman, Christina; Larsson, Henrik; Hultman, Christina M.; Långström, Niklas; Lichtenstein, Paul; D’Onofrio, Brian M.
Background Preconception, prenatal, and postnatal maternal stress are associated with increased offspring psychopathology, but findings are inconsistent and need replication. We estimated associations between maternal bereavement stress and offspring autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), bipolar disorder, schizophrenia, suicide attempt, and completed suicide. Methods Using Swedish registers, we conducted the largest population-based study to date examining associations between stress exposure in 738,144 offspring born 1992–2000 for childhood outcomes and 2,155,221 offspring born 1973–1997 for adult outcomes with follow-up through 2009. Maternal stress was defined as death of a first degree relative during 6 months before conception, across pregnancy, or the first two postnatal years. Cox proportional survival analyses were used to obtain hazard ratios (HR) in unadjusted and adjusted analyses. Results Marginal increased risk of bipolar disorder and schizophrenia following preconception bereavement stress was not significant. Third trimester prenatal stress increased risk of ASD (adjusted HR=1.58, 95% CI: 1.15–2.17) and ADHD (adjusted HR=1.31, 95% CI: 1.04–1.66). First postnatal year stress increased risk for offspring suicide attempt (adjusted HR=1.13, 95% CI: 1.02–1.25) and completed suicide (adjusted HR=1.51, 95% CI: 1.08–2.11). Bereavement stress during the second postnatal year increased risk of ASD (adjusted HR=1.30, 95% CI: 1.09–1.55). Conclusions Further research is needed on associations between preconception stress and psychopathological outcomes. Prenatal bereavement stress increases risk of offspring ASD and ADHD. Postnatal bereavement stress moderately increases risk of offspring suicide attempt, completed suicide, and ASD. Smaller previous studies may have overestimated associations between early stress and psychopathological outcomes. PMID:23591021
Balk, D E
The prevalence of bereavement among traditional-aged college students should impel universities to assist bereaved students on their campuses. Dealing with bereavement can not only challenge a college student's completing the developmental tasks that our society sets for the later adolescent years, but also imperil the student's remaining in school and graduating. It is in the best interests of the university to develop and implement a variety of effective interventions to assist bereaved students. The author argues that universities are communities devoted to scholarly endeavors and should explicitly incorporate the dimension of compassion and caring. An abbreviated case study is used to illustrate the situations in which one grieving student found herself when she returned to school following the death of her father. A call is made for greater university engagement by forming a university-based bereavement center to coordinate and conduct coherent inquiry that fulfills the scholarly functions of discovery, application, and instruction. Four specific actions for a bereavement center are to train nonbereaved students to provide peer support, to provide structured interventions for college students at risk of bereavement complications, to raise consciousness about bereavement on the university campus, and to conduct research into various bereavement populations and bereavement topics.
Full Text Available The death of a close person is one of the hardest situations which individuals face several times in their lifetimes. The death of a child is especially stressful. The partnership can be either mutually supportive or stressful; this is significantly related to coping with the loss. The purpose of the research was to study the mutual support of partners while grieving their child's loss. We conducted in-depth guided interviews with fourteen bereaved parents. We used a grounded theory to determine three main topics: the expectations of the bereaved from their partner; the characteristics of the mutual partners' support; and the relationship between partners in the process of bereavement. On the basis of these data the following categories prevailed: collective bereavement, individual bereavement with occasional collective bereavement, and isolated bereavement. Regardless of gender, the individuals with the first two patterns typically experience mutual understanding and the feeling of support in the process of bereavement. Those with the pattern of isolated bereavement have characteristically dysfunctional partnerships, which make mutual support difficult even when desired. Research showed a new finding in Slovenia: bereaved parents in functional partnerships often grieve individually and occasionally collectively, which they identify as adequate mutual support.
Ulrich, Lisa-R; Gruber, Dania; Hach, Michaela; Boesner, Stefan; Haasenritter, Joerg; Kuss, Katrin; Seipp, Hannah; Gerlach, Ferdinand M; Erler, Antje
In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). This study will provide important information on what matters
Wijnhoven, Marleen N; Terpstra, Wim E; van Rossem, Ronald; Haazer, Carolien; Gunnink-Boonstra, Nicolette; Sonke, Gabe S; Buiting, Hilde M
To examine bereaved relatives' experiences from time of diagnosis of incurable cancer until death with specific emphasis on their role in the (end-of-life) decision-making concerning chemotherapy. Qualitative interview study. Hospital-based. In-depth interviews with 15 close relatives of patients who died from non-small cell lung cancer or pancreatic cancer, using a thematic content analysis. All relatives reported that patients' main reason to request chemotherapy was the possibility to prolong life. Relatives reported that patients receiving chemotherapy had more difficulty to accept the incurable nature of their disease than patients who did not. They mostly followed the patients' treatment wish and only infrequently suggested ceasing chemotherapy (because of side effects) despite sometimes believing that this would be a better option. Relatives continuously tried to support the patient in either approaching the death or in attaining hope to continue life satisfactorily. Most relatives considered the chemotherapy period meaningful, since it sparked patients' hope and was what patients wanted. Cessation of chemotherapy caused a relief but coincided with physical deterioration and an increased caregivers' role; many relatives recalled this latter period as more burdensome. Relatives tend to follow patients' wish to continue or cease chemotherapy, without expressing their own feelings, although they were more inclined to opt cessation. They experience a greater caregiver role after cessation and their feelings of responsibility associated with the disease can be exhausting. More attention is needed to reduce relatives' distress at the end of life, also to fully profit from this crucial form of (informal) healthcare. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Hudson, Janella; Reblin, Maija; Clayton, Margaret F; Ellington, Lee
Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits.ResultNineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance.Significance of resultsOur findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.
Full Text Available Intense and enduring psychological distress has been well-documented in numerous studies on bereaved parents including anxious, depressive, and traumatic stress symptoms. A state of poverty is also known to increase the risk of psychological distress in the general population, yet this variable has not yet been sufficiently evaluated in outcomes specifically for bereaved parents. This study is the first to investigate poverty, education, and parental bereavement while examining the relative risk of other variables as informed by the literature. The findings reveal that poverty was the strongest predictor of psychological distress when compared to others factors which have traditionally been considered significant in parental bereavement. Bereaved parents living in poverty may be less likely to seek support and have fewer available resources. Practice and policy implications are discussed. Keywords: Poverty, Deprivation, Bereavement, Trauma, Grief, Anxiety, Depression
This study aimed to investigate the PTSD-frequency in elderly bereaved people across the first 18 months of bereavement. Additionally, risk factors for the prediction of bereavement outcome in relation to four domains of the bereavement process were investigated. Data was collected via self...... one significant loss (N=276, Mean=70 years). The PTSD-frequency within the sample was high (16%) compared to the control group (4%) and remained stable across time. Individually analyzed each domain was a predictor of PTSD 18 months post loss. Most predictors remained stable across time......, remains so over the first 18 months post bereavement, and underline the importance of further investigation of PTSD in the elderly bereaved....
Kataoka-Yahiro, Merle R; McFarlane, Sandra; Koijane, Jeannette; Li, Dongmei
Between 2013 and 2030, older adults 65 years and older of racial/ethnic populations in the U.S. is projected to increase by 123% in comparison to the Whites (Non-Hispanics). To meet this demand, training of ethnically diverse health staff in long-term care facilities in palliative and hospice care is imperative. The purpose of this study was to evaluate a palliative and hospice care training of staff in two nursing homes in Hawaii - (a) to evaluate knowledge and confidence over three time periods, and (b) to compare staff and family caregiver satisfaction at end of program. The educational frameworks were based on cultural and communication theories. Fifty-two ethnically diverse staff, a majority being Asian (89%), participated in a 10-week module training and one 4 hour communication skills workshop. Staff evaluation included knowledge and confidence surveys, pre- and post-test knowledge tests, and FAMCARE-2 satisfaction instrument. There were nine Asian (89%) and Pacific Islander (11%) family caregivers who completed the FAMCARE-2 satisfaction instrument. The overall staff knowledge and confidence results were promising. The staff rated overall satisfaction of palliative care services lower than the family caregivers. Implications for future research, practice, and education with palliative and hospice care training of ethnically diverse nursing home staff is to include patient and family caregiver satisfaction of palliative and hospice care services, evaluation of effectiveness of cross-cultural communication theories in palliative and hospice care staff training, and support from administration for mentorship and development of these services in long term care facilities.
Stone, Joseph B.
Bereavement beliefs and practices in the modern, American culture have been well documented. However, virtually no research has been conducted on traditional and contemporary death, dying, grief, and bereavement beliefs and practices among native tribes, such as the Lakota. The present study was conducted with the Lakota, and fulfilled two goals. iii First, the contemporary and traditional death, dying, grief, and bereavement beliefs and practices of the Lakota were documented and summariz...
Corr, Charles A; Coolican, Margaret B
This article surveys recent literature on bereavement, grief, and mourning. It offers a review of the state of the art of current understandings of those topics to assist professionals who work in the field of organ and tissue donation and transplantation. The article's goal is to provide well-developed and up-to-date education and knowledge about bereavement, grief, and mourning to supplement the natural skills and experience of donation and transplant professionals in their work with bereaved persons.
MacKinnon, Christopher J; Smith, Nathan Grant; Henry, Melissa; Berish, Mel; Milman, Evgenia; Körner, Annett; Copeland, Laura S; Chochinov, Harvey M; Cohen, S Robin
A growing body of scholarship has evaluated the usefulness of meaning-based theories in the context of bereavement counseling. Although scholars have discussed the application of meaning-based theories for individual practice, there is a lack of inquiry regarding its implications when conducting bereavement support groups. The objective of this article is to bridge meaning-based theories with bereavement group practice, leading to a novel intervention and laying the foundation for future efficacy studies. Building on recommendations specified in the literature, this article outlines the theoretical paradigms and structure of a short-term meaning-based group counseling intervention for uncomplicated bereavement.
Coombs, Maureen; Mitchell, Marion; James, Stephen; Wetzig, Krista
End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. Inductive qualitative content analysis was conducted on free-text responses to a web-based survey exploring unit-based bereavement practice distributed to nurse managers in 229 intensive care units in New Zealand and Australia. A total of 153 (67%) surveys were returned with 68 respondents making free-text responses. Respondents were mainly Australian (n = 54, 85·3%), from the public sector (n = 51, 75%) and holding Nurse Unit Managers/Charge Nurse roles (n = 39, 52·9%). From the 124 free-text responses, a total of 187 individual codes were identified focussing on bereavement care practices (n = 145, 77·5%), educational provision to support staff (n = 15, 8%) and organisational challenges (n = 27, 14·4%). Bereavement care practices described use of memory boxes, cultural specificity, annual memorial services and use of community support services. Educational provision identified local in-service programmes, and national bereavement courses for specialist bereavement nurse coordinators. Organisational challenges focussed on lack of funding, especially for provision of bereavement follow-up. This is the first Australasian-wide survey, and one of the few international studies, describing bereavement practices within intensive care, an important aspect of nursing practice. However, with funding for new bereavement services and education for staff lacking, there are continued challenges in developing bereavement care. Given knowledge about the impact of these areas of care on bereaved family members, this requires review. Nurses remain committed to supporting bereaved families during and following death in intensive care. With limited resource to support bereavement care, intensive care nurses undertake a range of bereavement care practices at time of death
Bratt, Anna Sofia; Stenström, Ulf; Rennemark, Mikael
Few studies have compared the impact of different familial losses on life satisfaction (LS). Furthermore, there is a lack of research on the effect of having lost both a child and a spouse among older adults. A random sample of 1402 individuals, 817 women and 585 men, aged 60-96 years from the Blekinge part of the Swedish National Study of Aging and Care (SNAC-B) participated in this cross-sectional study. The first aim was to compare the effects of child or spouse or both child and spouse bereavement on LS and, the second aim, to investigate if there were gender differences within the bereaved groups. The results showed that having lost a child, spouse or both child and spouse had a negative association with LS, although this effect was small. Having experienced multiple losses did not predict more variance than a single child or spouse loss. Gender differences were found within all the bereaved groups with bereaved men having lower LS than bereaved women. Longer time since the loss was associated with higher LS. Bereaved older adults have somewhat lower LS than non-bereaved and bereaved men seem more affected than bereaved women. Future research needs to address older men´s experiences after the loss of a loved one.
Koper, I.; Heide, A.; Janssens, M.J.P.A.; Swart, S.; Perez, R.S.G.M.; Rietjens, J.A.C.
Purpose: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it
Supiano, Katherine P; Vaughn-Cole, Beth
This study explored the impact of prior personal experience with grief on self-reported personal and professional development of graduate students in nursing, social work, counseling, pastoral care, and genetic counseling involved as cofacilitators in bereavement support groups, and of medical students observing interdisciplinary inpatient palliative care. Personal experience with death of a family member or close friend was reported in 80% of the 35 participating students. Findings suggest that grief and the students' construction of the meaning of their loss can mediate the students' developing sense of self as a professional helper. Active engagement with suffering persons, the opportunity for self-disclosure and reflection, and teacher-facilitator provision of emotional guidance and modeling contributed positively to learning.
Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F
The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out. © Georg Thieme Verlag KG Stuttgart · New York.
Dhollander, Naomi; Deliens, Luc; Van Belle, Simon; De Vleminck, Aline; Pardon, Koen
To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing. To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams. Qualitative study - focus group interviews. Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists. Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks. Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.
Full Text Available "If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members.
“If you want to travel quickly, go alone. But if you want to travel far, you must go together”. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361
Yennurajalingam, Sriram; Noguera, Antonio; Parsons, Henrique Afonseca; Torres-Vigil, Isabel; Duarte, Eva Rosina; Palma, Alejandra; Bunge, Sofia; Palmer, J. Lynn; Delgado-Guay, Marvin Omar; Bruera, Eduardo
Background Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decisional control at the end of life among Hispanics. Aims To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Latin America (HLA) and Hispanic American (HUSA) caregivers. Design We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decisional control were evaluated using the Control Preference Scale. Caregivers’ and patients’ socio-demographic variables, patient performance status, and HUSA patient acculturation level was also collected. Participants A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results Caregiver preference of patients decisions control was passive, shared, and active by 10 (11%), 45 (52%) and 32 (37%) HUSA caregivers and 54 (19%), 178 (62%) and 55 (19%) HLA caregivers (p=0.0023). Caregiver acculturation level did not affect the preferences of the HUSA sample (p=0.60). Conclusions Most Hispanic family caregivers preferred the patient to make shared decisions. HLA caregivers preferred more frequently patients to assume a passive decisional role. Acculturation did not influence the preferences of HUSA caregivers. PMID:23670718
Schreiber, Jennifer K; Sands, Diana C; Jordan, John R
Children whose parent died by suicide are a vulnerable and underserved population. This phenomenon will be described, as well as implications for practice and research. "Double Whammy," a conceptualization of the overall experience of this marginalized group, emerged through two in-depth interviews from a phenomenological qualitative study with professionals who facilitate support groups for children bereaved by parental suicide. It was corroborated with current literature and practice experiences of the authors and their colleagues. Stigma was the largest contributor to the "Double Whammy," and the following themes emerged as well: feeling isolated, feeling abandoned, and feeling responsible. The self-volition of suicide challenges how bereaved children make meaning and internalize feelings about the deceased parent, one's self, and others. Developmentally appropriate education about suicide grief, depression, and normalizing the grief process is pivotal in helping children to effectively cope and manage their feelings.
Bonanno, G A; Keltner, D
The common assumption that emotional expression mediates the course of bereavement is tested. Competing hypotheses about the direction of mediation were formulated from the grief work and social-functional accounts of emotional expression. Facial expressions of emotion in conjugally bereaved adults were coded at 6 months post-loss as they described their relationship with the deceased; grief and perceived health were measured at 6, 14, and 25 months. Facial expressions of negative emotion, in particular anger, predicted increased grief at 14 months and poorer perceived health through 25 months. Facial expressions of positive emotion predicted decreased grief through 25 months and a positive but nonsignificant relation to perceived health. Predictive relations between negative and positive emotional expression persisted when initial levels of self-reported emotion, grief, and health were statistically controlled, demonstrating the mediating role of facial expressions of emotion in adjustment to conjugal loss. Theoretical and clinical implications are discussed.
Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda
Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.
Sherman, Deborah W; McGuire, Deborah B; Free, David; Cheon, Joo Young
significance of the future study and the need to develop interventions to support family caregivers in their roles. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Shinjo, Takuya; Morita, Tatsuya; Hirai, Kei; Miyashita, Mitsunori; Shimizu, Megumi; Tsuneto, Satoru; Shima, Yasuo
Many surveys have evaluated patient-related barriers to pain management. To explore associations between a preference for opioids and general attitudes toward drugs, the experience and information received as a bereaved family, and beliefs regarding a good death. A cross-sectional survey, performed in 2010, of bereaved families of patients with cancer in palliative care units across Japan. Questionnaires were sent to 997 families. A total of 66% of families responded. Of these, 224 responses were excluded because the family declined to participate in the study (n = 38), the patient was not receiving any opioid analgesics, and there were missing data (n = 164), or data were missing for the primary end points (n = 22). Thus, 432 responses were finally analyzed (43%). In total, 26%, 41%, and 31% of family members stated that they strongly want to receive, want to receive, or slightly want to receive opioids if needed in the future, respectively. Determinants associated with a preference for receiving opioid treatment were the following: a general appreciation of the drugs (P = 0.005), witnessing an improvement in the patient's quality of life as a result of pain relief (P = 0.003), information provided by medical professionals that the opioid could be discontinued if side effects developed (P = 0.042), and the belief that a good death was one that was free from pain and physical distress (P families whose relatives were treated with opioid analgesics reported a preference to receive opioid analgesics for the treatment of cancer pain, if necessary, in the future. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Parkes, Colin Murray; Attig, Thomas; Bendiksen, Robert; Cabrera, Fernando; Corr, Charles; Cox, Gerry; Faust, Susanna; Fulton, Robert; Jupp, Peter; Kallenberg, Kjell; Lamers, Elizabeth; Lamers, William; Long, Scott; McKissock, Diane; McKissock, Mal; Morgan, Mary Ann; Papadatou, Danai; Stevenson, Robert; Stoddard, Sandol; Weiss, Robert; Wrenn, Marcy
Specialists in death, dying, and bereavement and their consequences for individuals, families, and communities have experience and research findings that are relevant to an understanding of the reactions of individuals faced by deadly violence. At such times, powerful emotions and ingrained patterns of thought and behavior can given rise to disproportionate responses that may feed into cycles of violence. An extended table shows how professionals helping individuals and families faced with violent death share common aims with those aiming to help larger social units faced with armed attacks. It follows that these professionals should work together to improve death education, to prepare people for possible deadly violence and, where possible, to suggest alternatives, to create secure places and relationships in which communication becomes possible, bad news can be broken and understood, feelings examined, differences reconciled, and people can redirect anger into the prevention of escalation rather than its perpetuation. All of these activities hold out hope that cycles of deadly violence can be broken as well as mitigating the consequences when they are not. The undoubted success of the worldwide palliative care movement resulted from the recognition of serious deficiencies in existing services, the provision of an inclusive, holistic, program that extends across medical, social psychological, and spiritual realms of discourse, providing care for patients and their families, irrespective of wealth, race, religion, and political persuasion, by dedicated leaders and teams backed by education and information services and organized across geographical boundaries. It is argued here that the time is ripe for a similar commitment to bring to an end the scandal of armed conflict by a similarly multidisciplinary, multicultural effort to relieve the suffering that both causes and results from armed conflict. This must remain independent of race, religion, political
Gaab, Erin; Steinhorn, David M
Although pediatric palliative care policies and services have been developed, research in this area continues to lag. An integrated model of palliative care has been suggested by the American Academy of Pediatrics and includes complementary and alternative services aimed at improving the well-being of children and their families. The first-known pediatric palliative aquatics program (PPAP) in California uses several techniques to decrease pain and promote well-being through relaxation and interaction between patients, specialists, and family members. This study investigates the perceptions of family members of their children's experiences with a PPAP. Researchers from an outside institution conducted focus groups and interviews. Themes were extracted from the focus group transcripts using Braun and Clarke's method of inductive thematic analysis. Data were collected at the host site, local libraries, and participant homes. Participants were primary caregivers and siblings (n = 23) of children in a PPAP, an independent children's respite, transitional, and end-of-life care facility in California. The research described and drew implications from the diverse perceptions that family members expressed about the benefits of having a child in the PPAP, including sensory, physical, and social experiences. Although the PPAP aims to promote well-being through relaxation, several other benefits were expressed by family members of children going through the program, including pain relief. Published by Elsevier Inc.
Ho, Sio-Wa; Brotherson, Sean E
The purpose of this study was to explore the bereavement experiences of parents who had experienced the death of a child in Chinese families. In-depth interviews were conducted with 10 bereaved parents in Macau, China. Narrative accounts of Chinese parents' experience in the loss of a child were explored to understand how their connection to the deceased child and their worldview were influenced by cultural beliefs and values. Study themes related to parental connections with the deceased child included the use of object linking, memorializing acts, and avoidance of traditional funeral processes, with clear patterns of Chinese cultural influence. Additionally, themes related to impacts on parental worldview included use of the concept of fate as a rationale for child loss and influences on religious orientation. The influence of cultural beliefs and background on Chinese parents as they deal with the issue of a child's death was apparent. Further research is needed and will benefit our understanding of parental bereavement in Chinese families.
Costa, Xavier; Gómez-Batiste, Xavier; Pla, Margarida; Martínez-Muñoz, Marisa; Blay, Carles; Vila, Laura
To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. Primary, secondary and intermediate care. Osona (Barcelona). The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease. Copyright Â© 2016 Elsevier España, S.L.U. All rights reserved.
Rosenberg, Abby R; Baker, K Scott; Syrjala, Karen L; Back, Anthony L; Wolfe, Joanne
Promoting resilience is an aspect of psychosocial care that affects patient and whole-family well-being. There is little consensus about how to define or promote resilience during and after pediatric cancer. The aims of this study were (1) to review the resilience literature in pediatric cancer settings; (2) to qualitatively ascertain caregiver-reported perceptions of resilience; and (3) to develop an integrative model of fixed and mutable factors of resilience among family members of children with cancer, with the goal of enabling better study and promotion of resilience among pediatric cancer families. The study entailed qualitative analysis of small group interviews with eighteen bereaved parents and family members of children with cancer treated at Seattle Children's Hospital. Small-group interviews were conducted with members of each bereaved family. Participant statements were coded for thematic analysis. An integrative, comprehensive framework was then developed. Caregivers' personal appraisals of the cancer experience and their child's legacy shape their definitions of resilience. Described factors of resilience include baseline characteristics (i.e., inherent traits, prior expectations of cancer), processes that evolve over time (i.e., coping strategies, social support, provider interactions), and psychosocial outcomes (i.e., post-traumatic growth and lack of psychological distress). These elements were used to develop a testable model of resilience among family members of children with cancer. Resilience is a complex construct that may be modifiable. Once validated, the proposed framework will not only serve as a model for clinicians, but may also facilitate the development of interventions aimed at promoting resilience in family members of children with cancer.
Wrubel, J; Richards, T A; Folkman, S; Acree, M C
This study describes three tacit definitions of informal caregiving and explores the extent to which differences in these tacit definitions explain variation in caregivers' negative mood over time. There is a growing need to understand the sources of stress and gratification for informal caregivers. Tacit definitions of informal caregiving refer to caregivers' understanding of what caregiving entails. These definitions are tacit because they arise from caregivers' taken-for-granted understanding rather than formally articulated positions concerning caregiving. A random sample of 60 men, all of whom were caregiving partners of men with acquired immunodeficiency syndrome (AIDS), was drawn from a larger cohort of 253 participants in the University of California San Francisco (UCSF) Coping Project (1990-1997). The caregivers were assessed bimonthly for 2 years with procedures that included a semi-structured interview focusing on a recent stressful event involving caregiving, and quantitative measures of well-being. Interpretive phenomenological case studies of the narrative accounts of the 60 caregivers produced three tacit definitions of caregiving - engagement, conflict and distance. These three tacit definitions were distinguished by differences in learning about caregiving, involvement in health care decisions, caregiving activities and reported sources of stress. The three groups differed on measures of dyadic adjustment, depression, anger and anxiety. Better understanding of caregivers' tacit definitions can facilitate and enhance effective support and interventions for caregivers.
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FEATURES OF PALLIATIVE CARE. IN AIDS ... rent infection e.g. IV ampho- tericin B on an in-patient ... nurses for case management, to communicate ... evaluation — an ongoing process of assessment, to .... Rectal, subcutaneous, intravenous.
Full Text Available Palliative care providers across India lobbied to gain access to methadone for pain relief and this has finally been achieved. Palliative care activists will count on the numerous strengths for introducing methadone in India, including the various national and state government initiatives that have been introduced recognizing the importance of palliative care as a specialty in addition to improving opioid accessibility and training. Adding to the support are the Non-Governmental Organizations (NGOs, the medical fraternity and the international interactive and innovative programs such as the Project Extension for Community Health Outcome. As compelling as the need for methadone is, many challenges await. This article outlines the challenges of procuring methadone and also discusses the challenges specific to methadone. Balancing the availability and diversion in a setting of opioid phobia, implementing the amended laws to improve availability and accessibility in a country with diverse health-care practices are the major challenges in implementing methadone for relief of pain. The unique pharmacology of the drug requires meticulous patient selection, vigilant monitoring, and excellent communication and collaboration with a multidisciplinary team and caregivers. The psychological acceptance of the patient, the professional training of the team and the place where care is provided are also challenges which need to be overcome. These challenges could well be the catalyst for a more diligent and vigilant approach to opioid prescribing practices. Start low, go slow could well be the way forward with caregiver education to prescribe methadone safely in the Indian palliative care setting.
Viswanath, Vidya; Palat, Gayatri; Chary, Srini; Broderick, Ann
Palliative care providers across India lobbied to gain access to methadone for pain relief and this has finally been achieved. Palliative care activists will count on the numerous strengths for introducing methadone in India, including the various national and state government initiatives that have been introduced recognizing the importance of palliative care as a specialty in addition to improving opioid accessibility and training. Adding to the support are the Non-Governmental Organizations (NGOs), the medical fraternity and the international interactive and innovative programs such as the Project Extension for Community Health Outcome. As compelling as the need for methadone is, many challenges await. This article outlines the challenges of procuring methadone and also discusses the challenges specific to methadone. Balancing the availability and diversion in a setting of opioid phobia, implementing the amended laws to improve availability and accessibility in a country with diverse health-care practices are the major challenges in implementing methadone for relief of pain. The unique pharmacology of the drug requires meticulous patient selection, vigilant monitoring, and excellent communication and collaboration with a multidisciplinary team and caregivers. The psychological acceptance of the patient, the professional training of the team and the place where care is provided are also challenges which need to be overcome. These challenges could well be the catalyst for a more diligent and vigilant approach to opioid prescribing practices. Start low, go slow could well be the way forward with caregiver education to prescribe methadone safely in the Indian palliative care setting.
Christopher G. Tarolli
Full Text Available Background Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease.Methods In this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care.Results We provide a review of the current literature and discuss our own care practices.Discussion We conclude by discussing questions that remain unanswered and positing ideas for future work in the field.
Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali
By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder's educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: "academic education planning", "workforce education", "public awareness", and "patient and caregiver empowerment" that contained our subcategories as follows: "strengths", "weaknesses", "opportunities" and "threats" (SWOT). Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.
Bruinsma, Sophie M; Rietjens, Judith A C; Seymour, Jane E; Anquinet, Livia; van der Heide, Agnes
Guidelines about palliative sedation typically include recommendations to protect the well-being of relatives. The aim of this study was to systematically review evidence on the experiences of relatives with the practice of palliative sedation. PubMed, Embase, Web of Science, PsycINFO, and CINAHL were searched for empirical studies on relatives' experiences with palliative sedation. We investigated relatives' involvement in the decision-making and sedation processes, whether they received adequate information and support, and relatives' emotions. Of the 564 studies identified, 39 were included. The studies (30 quantitative, six qualitative, and three mixed methods) were conducted in 16 countries; three studies were based on relatives' reports, 26 on physicians' and nurses' proxy reports, seven on medical records, and three combined different sources. The 39 studies yielded a combined total of 8791 respondents or studied cases. Caregivers involved relatives in the decision making in 69%-100% of all cases (19 quantitative studies), and in 60%-100% of all cases, relatives were reported to have received adequate information (five quantitative studies). Only two quantitative studies reported on relatives' involvement in the provision of sedation. Despite the fact that the majority of relatives were reported to be comfortable with the use of palliative sedation (seven quantitative studies, four qualitative studies), several studies found that relatives were distressed by the use of sedation (five quantitative studies, five qualitative studies). No studies reported specifically about the support provided to the relatives. Relatives' experiences with palliative sedation are mainly studied from the perspective of proxies, mostly professional caregivers. The majority of relatives seems to be comfortable with the use of palliative sedation; however, they may experience substantial distress by the use of sedation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published
Full Text Available Abstract Background General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website 1. Method The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197 scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166. Results Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers. Conclusion Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to
Palliative care has its roots in hospice movement arising in the 1970s in Europe and later also in America. From its beginning it has had connection with patients in terminal phase of cancer disease who suffered from many serious symptoms. Nowadays palliative care is also being provided to patients in terminal phase of certain neurological disorders, AIDS, exceptionally for patients with heart, lung or kidney failure. It has become part of modern medicine and of good clinical practice. (author)
Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory
Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.
Sorrell, Jeanne M
Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient. Copyright 2014, SLACK Incorporated.
Boogaard, Jannie A; Werner, Perla; Zisberg, Anna; van der Steen, Jenny T
In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; 17: 2466-2471. © 2017 Japan Geriatrics Society.
Lee, Yeonjung; Tang, Fengyan
This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.
Full text: The International Agency for Research on Cancer predicts that cancer incidence in developing countries will increase dramatically in the first two decades of this millennium. Already some 80% of cancer patients in developing countries present with incurable disease. [n many cases pain is a severe problem and palliation is needed to improve quality of life as well as extending survival. This paper will consider the physical and clinical aspects of palliative radiotherapy (PRT), choice of radiation modality, alternative approaches to imaging and therapy and cost-benefit considerations. The potential benefits of a dedicated palliative centre include lower cost and therefore more centres, enabling more patients access to regional palliative care. Whilst there is an obvious need for palliative radiotherapy, simple curative treatments could also be managed. C060 radiotherapy has important advantages in developing countries, because of the higher initial cost of a linear accelerator, as well as the need for reliable power supply and the level of skill required by linac technicians and physicists. The beam characteristics of both C060 units and low energy linacs are compared and both are found to be acceptable for palliation. The concept of telemedicine is also discussed, using mobile phones and internet communication to allow rural clinics to receive support from specialists based in the cities, to send images for remote diagnosis and remote dose planning for radiotherapy. (author)
Widger, Kimberley; Friedrichsdorf, Stefan; Wolfe, Joanne; Liben, Stephen; Pole, Jason D; Bouffet, Eric; Greenberg, Mark; Husain, Amna; Siden, Harold; Whitlock, James A; Rapoport, Adam
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a 'Train-the-Trainer' model. In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of
Williams, Lisa; Trussardi, Gabriella; Black, Stella; Moeke-Maxwell, Tess; Frey, Rosemary; Robinson, Jackie; Gott, Merryn
Internationally, increasing attention is being paid to understanding patient experiences of health care. Within palliative care, the Views of Informal Carers - Evaluation of Services (VOICES) questionnaire is commonly used for this purpose. Among its objectives is to ask family members if their relatives were treated with dignity at the end of life. This is regarded as useful for understanding the quality of the health care received. To highlight the differences between family members' reports of dignity in the care provided to their relatives at the end of life, as reported in the VOICES questionnaire, and their narratives about the care their relatives received. A total of 21 cognitive interviews were conducted during a New Zealand pilot of the VOICES questionnaire. Discrepancies between ratings of dignity and the lived experience of care suggest that lay understandings of dignity may not be congruent with that of health care providers. Bereaved family members' self-reports of dignity in end-of-life care captured using survey methods alone are inadequate to understand the complex ways in which individuals conceptualise and experience dignity within a health care context. The authors advocate consideration of multiple, complementary approaches to gathering consumer experiences of end-of-life care, as well as research which enables service users to interrogate what dignity in care means in an end-of-life context.
Han, Hyesung; Noh, Jin-Won; Huh, Hyu Jung; Huh, Seung; Joo, Ji-Young; Hong, Jin Hyuk; Chae, Jeong-Ho
Few studies have assessed the overall effects of multi-centered, complicated mental health support on the grief process. This study investigated the broader influence of mental health support provided practically to the bereaved family on the severity of complicated grief. Ninety-three bereaved
Brown, Ana C.; Sandler, Irwin N.; Tein, Jenn-Yun; Liu, Xianchen; Haine, Rachel A.
This article considers the implications of suicide and violent deaths (including suicide, homicide, and accidents) for the development of interventions for parentally bereaved children. Analyses of data from the Family Bereavement Program find minimal differences in children's mental health problems, grief or risk and protective factors based on…
This study focuses upon the social experiences of bereaved young men, with particular emphasis on the social costs of bereavement-related personal disclosure. Their experiences of regulating their social behaviour were suggestive of the persistence of "traditional" notions of masculine identity (e.g. hegemonic masculinity). While this…
The concept of recovery is integral to the work of bereavement professionals, though there remains considerable debate as to the precise definition and applicability of the term. A number of factors have contributed to the controversy; competing bereavement models, for instance, have given rise to fundamental differences in the way that recovery…
Nieboer, A.P.; Lindenberg, S.M.; Ormel, J.
Considerable variation in the effects of the loss of the spouse have been reported, and there is lack of agreement regarding the effects of gender and bereavement on well-being. The objective of this article is to examine time-differences in the consequences of bereavement for men and women.
Newsom, Catherine; Schut, Henk; Stroebe, Margaret S.; Wilson, Stewart; Birrell, John; Moerbeek, Mirjam; Eisma, Maarten C.
This controlled, longitudinal investigation tested the effectiveness of a bereavement counselling model for adults on reducing complicated grief (CG) symptoms. Participants (N = 344; 79% female; mean age: 49.3 years) were adult residents of Scotland who were bereaved of a close relation or partner,
Eisma, Maarten C.; Schut, Henk A.W.; Stroebe, Margaret; van den Bout, Jan; Stroebe, Wolfgang; Boelen, Paul A.
Rumination is a risk factor in adjustment to bereavement. It is associated with and predicts psychopathology after loss. Yet, the function of rumination in bereavement remains unclear. In the past, researchers often assumed rumination to be a maladaptive confrontation process. However, based on
Ogata, Kohske; Ishikawa, Takaki; Michiue, Tomomi; Nishi, Yuko; Maeda, Hitoshi
The authors investigated posttraumatic stress disorder (PTSD) symptoms in Japanese bereaved family members using a questionnaire. Participants were bereaved as a result of suicide and homicide (n = 51 and 49, respectively), with natural death (n = 56) as a control; and their relationships to the deceased were parent-child (n = 79), conjugal (n =…
Schut, Henk; de Keijser, Adrianus; van den Bout, Jan; Dijkhuis, Jos
Bereavement is generally regarded as one of the most stressful events one can encounter. Yet, bereavement research and the study of post-traumatic stress seem to be mainly developing along separate lines. Strictly speaking, post-traumatic stress disorder can only occur after encountering events
Artico, Marco; Dante, Angelo; D'Angelo, Daniela; Lamarca, Luciano; Mastroianni, Chiara; Petitti, Tommasangelo; Piredda, Michela; De Marinis, Maria Grazia
Terminally ill patients are at high risk of pressure ulcers, which have a negative impact on quality of life. Data about pressure ulcers' prevalence, incidence and associated factors are largely insufficient. To document the point prevalence at admission and the cumulative incidence of pressure ulcers in terminally ill patients admitted to an Italian home palliative care unit, and to analyse the patients' and caregivers' characteristics associated with their occurrence. Retrospective chart review. Patients ( n = 574) with a life expectancy ⩽6 months admitted to a palliative home care service were included in this study. The prevalence and incidence rates were 13.1% and 13.0%, respectively. The logistic regression models showed body mass index ( p 70 and >1 caregiver at home as the dichotomous variables predictors of presenting with a pressure ulcer at time of admission and during home palliative care. The notable pressure ulcers' incidence and prevalence rates suggest the need to include this issue among the main outcomes to pursue during home palliative care. The accuracy of body mass index, Braden Scale and Karnofsky Performance Scale in predicting the pressure ulcers risk is confirmed. Therefore, they appear as essential tools, in combination with nurses' clinical judgment, for a structured approach to pressure ulcers prevention. Further research is needed to explore the home caregivers' characteristics and attitudes associated with the occurrence of pressure ulcers and the relations between their strategies for pressure ulcer prevention and gender-related patient's needs.
Full Text Available Context: Palliative radiotherapy aims at symptom alleviation and improvement of quality of life. It may be effective in conferring a reasonable quantum of local control, as well as possibly prolonging survival on the short term. However, there can be rare instances where long-term survival, or even cure, results from palliative radiotherapy, which mostly uses sub-therapeutic doses. Aim: To categorize and characterize the patients with long-term survival and/or cure after palliative radiotherapy. Materials and Methods: This study is a retrospective analysis of hospital records of patients treated with palliative radiotherapy from 2001 to 2006 at the Regional Cancer Centre, Shimla. Results: Of the analyzed 963 patients who received palliative radiotherapy, 2.4% (n = 23 survived at least 5 years, with a large majority of these surviving patients (73.9%, n = 17 being free of disease. Conclusions: In addition to providing valuable symptom relief, palliative radiotherapy utilizing sub-therapeutic doses may, in a small proportion of patients, bestow long-term survival, and possibly cure. Rationally, such a favorable, but rare outcome cannot be expected with supportive care alone.
Frey, Rosemary; Boyd, Michal; Foster, Sue; Robinson, Jackie; Gott, Merryn
Organisational culture has been shown to impact on resident outcomes in residential aged care (RAC). This is particularly important given the growing number of residents with high palliative care needs. The study described herein (conducted from January 2013 to March 2014) examined survey results from a convenience sample of 46 managers, alongside interviews with a purposively selected sample of 23 bereaved family members in order to explore the perceptions of organisational culture within New Zealand RAC facilities in one large urban District Health Board. Results of the Organisational Culture Assessment Instrument (OCAI) completed by managers indicated a preference for a 'Clan' and the structured 'Hierarchy' culture. Bereaved family interviews emphasised both positive and negative aspects of communication, leadership and teamwork, and relationship with residents. Study results from both managers' OCAI survey scores and next of kin interviews indicate that while the RAC facilities are culturally oriented towards providing quality care for residents, they may face barriers to adopting organisational processes supportive of this goal. © 2015 John Wiley & Sons Ltd.
R. C. Hamdy MD
Full Text Available Repetitive questioning is due to an impaired episodic memory and is a frequent, often presenting, problem in patients with Alzheimer’s disease (amnestic type. It is due to the patients’ difficulties learning new information, retaining it, and recalling it, and is often aggravated by a poor attention span and easy distractibility. A number of factors may trigger and maintain repetitive questioning. Caregivers should try to identify and address these triggers. In the case discussion presented, it is due to the patient’s concerns about her and her family’s safety triggered by watching a particularly violent movie aired on TV. What went wrong in the patient/caregiver interaction and how it could have been avoided or averted are explored. Also reviewed are the impact of repetitive questioning, the challenges it raises for caregivers, and some effective intervention strategies that may be useful to diffuse the angst that caregivers experience with repetitive questioning.
... FCA - A A + A You are here Home Depression and Caregiving Order this publication Printer-friendly version ... a more serious depression over time. Symptoms of Depression People experience depression in different ways. Some may ...
Full Text Available Abstract Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death. Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end
Lund, Dale A.; Utz, Rebecca; Caserta, Michael S.; de Vries, Brian
The positive psychology movement has created more interest in examining the potential value of experiencing positive emotions (e.g. humor, laughter and happiness) during the course of bereavement. This study of 292 recently widowed (5-24 weeks) men (39%) and women (61%) age 50 and over examined both the perceived importance of and actual experience of having positive emotions in their daily lives and how they might impact bereavement adjustments. We found that most of the bereaved spouses rated humor and happiness as being very important in their daily lives and that they were also experiencing these emotions at higher levels than expected. Experiencing humor, laughter and happiness was strongly associated with favorable bereavement adjustments (lower grief and depression) regardless of the extent to which the bereaved person valued having these positive emotions. PMID:19227000
McMillan, Susan C; Rodriguez, Carmen; Wang, Hsiao-Lan; Elliott, Amanda
The purpose of this study was to explore issues reported by caregivers of Head and Neck cancer (HNC) patients newly admitted to hospice homecare. 26 caregivers providing hospice homecare to patients with HNC were induded. Caregiver depressive symptoms, social support and perceived health data were analyzed. The caregivers reported few depressive symptoms, good perceived social support, and good perceived health; however, there was large variation in the group with some individuals having significant problems. Caregivers appeared to be doing well physically, emotionally and socially, but baseline data were used, so follow-up data are needed. Further research is warranted. Family caregivers also are affected by the experience of cancer and may have depressive symptoms needing assessment and management. Hospice patients with HNC have a variety of symptoms specific to their disease and treatment that need assessment and management by their family caregivers. Caregivers of HNC patients in hospice and palliative care need and deserve attention from hospice providers as they care for patients.
Full Text Available Abstract Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs, patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.
Taubert, Mark; Watts, Gareth; Boland, Jason; Radbruch, Lukas
The uses of social media have become ubiquitous in contemporary society at an astonishingly fast-paced rate. The internet and in particular platforms such as Facebook, Twitter and YouTube are now part of most people's vocabulary and are starting to replace many face-to-face interactions. The online world, in particular, is alive with discussions, comments and anecdotes about the topics of illness, disease, hospitals, death and dying. The topic of death and dying had in the not too distant past been seen as taboo, but willingness and need to talk openly about it appears to be on the increase. In parallel to this, many public awareness campaigns are highlighting society's need to be more prepared for dying and death. This will have a significant impact on the way terminally ill patients and their families approach the last years, months and weeks of their lives and how they might expect palliative health and social care professionals working with them through these difficult periods to interact with them. We pay particular attention to the areas of digital posterity creation and memorialisation within the wider holistic context of end-of-life care.
Kittelson, Sheri; Pierce, Read; Youngwerth, Jeanie
In response to poor healthcare quality outcomes and rising costs, healthcare reform triple aim has increased requirements for providers to demonstrate value to payers, partners, and the public. Electronically automating measurement of the meaningful impact of palliative care (PC) programs on clinical, operational, and financial systems over time is imperative to the success of the field and the goal of development of this automated PC scorecard. The scorecard was organized into a format of quality measures identified by the Measuring What Matters (MWM) project that are defined as important to the team, automatically extracted from the electronic health record, valid, and can be impacted over time. The scorecard was initially created using University of Florida Health (UF) data, a new PC program, and successfully applied and implemented at University of Colorado Anschutz Medical Campus (CU), a second institution with a mature PC program. Clinical metrics are organized in the scorecard based on MWM and described in terms of the metric definition, rationale for selection, measure type (structure, process, or outcome), and whether this represents a direct or proxy measure. The process of constructing the scorecard helped identify areas within both systems for potential improvement in team structure, clinical processes, and outcomes. In addition, by automating data extraction, the scorecard decreases costs associated with manual data entry and extraction, freeing clinical staff to care for patients and increasing the value of PC delivered to patients.
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Full Text Available ... it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...
Conclusions: Prevalence of hyponatremia is significant in palliative care patients. A prospective study looking at the causes and clinical outcomes associated with hyponatremia in palliative care patients is needed.
Yu, Mo; Guerriere, Denise N; Coyte, Peter C
In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of
Dionne-Odom, J Nicholas; Hull, Jay G; Martin, Michelle Y; Lyons, Kathleen Doyle; Prescott, Anna T; Tosteson, Tor; Li, Zhongze; Akyar, Imatullah; Raju, Dheeraj; Bakitas, Marie A
We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival. © 2016 The Authors. Cancer Medicine published by
Knight, Carl; Albertsen, Andreas
Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcar...... to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive.......Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare....... We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable...
Full Text Available This article deals with the importance of a missional approach to the funeral and bereavement counselling process in congregational praxis in the midst of a context of secularisation. The creation of a missional perspective on the funeral and bereavement counselling could support the nature and praxis of a congregation in a secular society, especially if the congregation finds its relevance in the expression of the missio Dei. The basic theoretical research for missional ecclesiology, which is the systematic study directed toward greater knowledge of the fundamental aspects of missional ecclesiology (National Science Foundation 1953:38, is based on the premise that God is the source of all missions. The expression missio Dei means to join God in the mission he is already busy with in the world. As the one who sends, God the Father sends the Son, the Son sends the Holy Spirit, and the Holy Spirit sends the church. The church only participates in the mission God is already busy with. It is a mission that uses both words and deeds and brings hope in the midst of tragedy. It is the hope of the kingdom of God and the incarnation of Christ that can already be experienced and expressed in the present. It is also the hope of the transformation of everything to form a new heaven and earth. Hope and mission can therefore not be separated. The concretisation of the expression of the kingdom of Christ in the world is hope, and a strong emphasis is therefore placed on mission as action in hope. Hope must be present where tragedy reigns, and the funeral and bereavement counselling can be used as a vehicle for this hope. Hope can then become an instrument of healing. The church can thus participate in God’s mission in the midst of tragedy and make an impact on society by taking on a missional character of hope.
Kutney-Lee, Ann; Carpenter, Joan; Smith, Dawn; Thorpe, Joshua; Tudose, Alina; Ersek, Mary
Surveys of bereaved family members are increasingly being used to evaluate end-of-life (EOL) care and to measure organizational performance in EOL care quality. The Bereaved Family Survey (BFS) is used to monitor EOL care quality and benchmark performance in the Veterans Affairs (VA) health-care system. The objective of this study was to develop a case-mix adjustment model for the BFS and to examine changes in facility-level scores following adjustment, in order to provide fair comparisons across facilities. We conducted a cross-sectional secondary analysis of medical record and survey data from veterans and their family members across 146 VA medical centers. Following adjustment using model-based propensity weighting, the mean change in the BFS-Performance Measure score across facilities was -0.6 with a range of -2.6 to 0.6. Fifty-five (38%) facilities changed within ±0.5 percentage points of their unadjusted score. On average, facilities that benefited most from adjustment cared for patients with greater comorbidity burden and were located in urban areas in the Northwest and Midwestern regions of the country. Case-mix adjustment results in minor changes to facility-level BFS scores but allows for fairer comparisons of EOL care quality. Case-mix adjustment of the BFS positions this National Quality Forum-endorsed measure for use in public reporting and internal quality dashboards for VA leadership and may inform the development and refinement of case-mix adjustment models for other surveys of bereaved family members.
Swetenham, Kate; Tieman, Jennifer; Butow, Phyllis; Currow, David
Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a palliative care clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future care planning. The patients and their caregivers are seen together by the nurse practitioner initially for a physical assessment. They are then seen by a social worker to focus on advanced care planning and assessment of social and emotional factors. After the social work visit, the patient and caregiver are separated, and the patient sees the psychosocial nurse for coping and adjustment to illness and the carer sees the caregiver network facilitator to assess their informal supports to assist in the role of community-based caregiving. The pilot study looks at the nature of communication in the clinic where patient and carer are together and compares that to when they are separated. A total of 33 patients and their caregivers agreed for their coversations to be tape recorded between May and November of 2013. All tape recordings were transcribed verbatim. Ten patient transcripts (n=40) have been coded for quantitative analysis. The codes identify content and function of speech, cues for information and emotion and whether they are responded to by clinicians. Pilot results reveal that caregivers contribute little in the combined clinics and dominate the conversation in the private clinic. Patients, when seen alone, predominantly express emotion related cues, opposed to cues for information. The clinicians focus on their area of specialty, which results in little duplication in this clinic setting. An earlier evaluation of this clinic found that patients and their caregivers appreciate being separated in the clinic setting to have time and privacy to reveal fears and feelings related to end-of-life care. This current study quantifies the patient and caregiver experience and confirms those earlier findings.
Gielen, Joris; Van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert
Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses’ attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n=415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated pa...
Field, Nigel P; Gao, Beryl; Paderna, Lisa
An attachment theory based perspective on the continuing bond to the deceased (CB) is proposed. The value of attachment theory in specifying the normative course of CB expression and in identifying adaptive versus maladaptive variants of CB expression based on their deviation from this normative course is outlined. The role of individual differences in attachment security on effective versus ineffective use of CB in coping with bereavement also is addressed. Finally, the moderating influence of type of loss (e.g., death of a spouse vs. child), culture, and religion on type of CB expression within an overarching attachment framework is discussed.
Egerod, Ingrid; Kaldan, Gudrun; Coombs, Maureen
: Self-administered computerized cross-sectional nation-wide survey of Danish ICUs. RESULTS: Nurses at 46 of 48 (96%) ICUs in Denmark responded. Bereavement care at the time of patient death included viewing the patient in ICU (100%), and in the hospital mortuary (59%). Information about hospital...... of death, a letter of condolence, a phone call to the family, referral to a priest or clergyman, or referral to other counseling. Although many interventions were common, there were variations within the elements offered. Nurses and physicians were the most consistent health care staff involved...
McFerran, Katrina; Roberts, Melina; O'Grady, Lucy
Qualitative investigations have indicated that music therapy groups may be beneficial for bereaved teenagers. The existing relationship between young people and music serves as a platform for connectedness and emotional expression that is utilised within a therapeutic, support group format. This investigation confirms this suggestion through grounded theory analysis of focus group interviews. Changes in self-perception were not found as a result of participation, however practically significant results were found on adolescent coping. These cannot be generalized because of the small sample size. Grief specific tools are recommended for use in future investigations in order to capture the emotional impact of music therapy grief work with adolescents.
Arevalo, Jimmy J; Rietjens, Judith A; Swart, Siebe J; Perez, Roberto S G M; van der Heide, Agnes
Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of physicians. Nurses' experiences differ from that of physicians; they more often describe that continuous palliative sedation is used with the intention of hastening death and to have experienced serious emotional burden. Therefore, it is important to understand the experience of nurses in continuous palliative sedation. To describe nurses' experiences with the decision-making and performance of continuous palliative sedation in terminally ill patients. Cross-sectional study. In 2008, a structured questionnaire was sent to 576 nurses in six professional home care organizations, ten units for palliative care in nursing homes and in-patient hospices and seven hospitals in the western region of the Netherlands. Respondents provided information about the last patient receiving continuous palliative sedation whom they had cared for. Two-hundred seventy-seven questionnaires were returned and 199 (71.84%) reported a case of continuous palliative sedation. Nurses felt involved in the decision to use sedation in 84% of cases, albeit to a lesser extent in home care (68.75%, p=0.002). They agreed with the performance of continuous palliative sedation in 95.97% of cases and they proposed the use of continuous palliative sedation in 16.16%. Nurses were present at the start of sedation in 81.40% of cases and reported physicians to be present in 45.22%. In 72.77%, arrangements had been made among caregivers about the coordination of health care regarding the sedation. Nurses seem to play an important role in the use of continuous sedation. This role is mainly supportive toward physicians and patients during the decision-making process, but shifts to an active performance of sedation
Full Text Available Pancreatic cancer is devastating due to its poor prognosis. Patients require a multidisciplinary approach to guide available options, mostly palliative because of advanced disease at presentation. Palliation including relief of biliary obstruction, gastric outlet obstruction, and cancer-related pain has become the focus in patients whose cancer is determined to be unresectable. Endoscopic stenting for biliary obstruction is an option for drainage to avoid the complications including jaundice, pruritus, infection, liver dysfunction and eventually failure. Enteral stents can relieve gastric obstruction and allow patients to resume oral intake. Pain is difficult to treat in cancer patients and endoscopic procedures such as pancreatic stenting and celiac plexus neurolysis can provide relief. The objective of endoscopic palliation is to primarily address symptoms as well improve quality of life.
Furusawa, Mitsuhiro; Baba, Yuji; Murakami, Ryuji; Yokoyama, Toshimi; Nishimura, Ryuichi; Uozumi, Hideaki; Takada, Chitose; Takahashi, Mutsumasa
This study reviews the experience of palliative radiotherapy to patients with multiple myeloma to define the optimal dose for pain relief. The records of 31 patients (66 sites) with multiple myeloma irradiated for palliation at Kumamoto University hospital between 1985 and 1994 were reviewed. Total dose ranged from 8 to 50 Gy, with a mean of 32.2 Gy. Symptoms included pain (78.1%), neurological abnormalities (28.1%), and palpable masses (34.3%). Symptomatic remission was obtained in 45 of 46 evaluable sites (97.8%). Complete remission of symptoms were obtained in 28.3%, and partial remission in 69.6%. According to fraction size, there was no significant difference between 3-5 Gy and 1.8-2 Gy. The incidence of complete remission increased when a total dose of more than 20 Gy was given. When the quality of life is considered, hypofractionation was recommended for the palliative radiation therapy of multiple myeloma. (author)
Full Text Available Heart failure is an important health problem since its incidence and prevalence is increasing year by year. Since symptom burden and mortality are high in heart failure, supportive and palliative care should be provided. However, very few patients are referred to palliative care services. In comparison with cancer patients, it is difficult to identify end of life care for patients with heart failure, because these patients are hospitalized when the signs of acute decompensation appear, and their symptoms decrease and functional status improve before they are discharged. Therefore, palliative care, which is a holistic approach aiming to improve patients’ quality of life, to detect and treat the attacks of the disease before they become severe, and to deal with patients’ physical, psychological, social, and mental health altogether during their care, should be integrated into heart failure patients’ care. [TAF Prev Med Bull 2012; 11(2.000: 217-222
Full Text Available Palliative care professionals promote well-being and ease suffering at the end-of-life through holistic care that addresses physical, emotional, social and spiritual needs. The ways that individuals cope with serious illness and prepare for death are often done so within a religious context. Therefore, it is essential that palliative care practitioners are sensitive to and have an appreciation of different religious perspectives and rituals to meet the unique needs of their patients and families. This paper provides a brief overview of the five major world religions - Buddhism, Christianity, Hinduism, Islam and Judaism - with particular emphasis of the respective perspectives on suffering, death and afterlife. Despite wide variation in these traditions, an understanding of common rituals surrounding death, funerals and bereavement can improve care for patients, families and communities facing the end-of-life.
The integral search for improved living conditions for those patients with gastric cancer who have not received curative surgical treatment continues to challenge the knowledge, dexterity and ethical foundations of medical teams. The justification for palliative treatment must be based on a thorough consideration of the available options and the particular situation in each case. This article reviews endoscopic therapy with auto expandable prosthetics for palliative treatment of gastric cancer, as well as the scientific evidence that supports its use and the factors that determine its indication.
Li, Jie; Chen, Sheying
Bereavement can be an extremely stressful experience while the protective effect of social support is expected to facilitate the adjustment after loss. The ingredients or elements of social support as illustrated by a new model of Social Support in Bereavement (SSB), however, requires empirical evidence. Who might be the most effective providers of social support in bereavement has also been understudied, particularly within specific cultural contexts. The present study uses both qualitative and quantitative analyses to explore these two important issues among bereaved Chinese families and individuals. The results show that three major types of social support described by the SSB model were frequently acknowledged by the participants in this study. Aside from relevant books, family and friends were the primary sources of social support who in turn received support from their workplaces. Helping professionals turned out to be the least significant source of social support in the Chinese cultural context. Differences by gender, age, and bereavement time were also found. The findings render empirical evidence to the conceptual model of Social Support in Bereavement and also offer culturally relevant guidance for providing effective support to the bereaved.
Hollins Martin, Caroline J; Forrest, Eleanor; Wylie, Linda; Martin, Colin R
The NMSF (2009) survey reported that bereavement midwife care was inadequate in a number of UK NHS Trusts. Using a small grant from the Scottish government, 3 experienced midwifery lecturers designed an interactive workbook called "Shaping bereavement care for midwives in clinical practice" for the purpose of improving delivery of bereavement education to student midwives. An instrument called the Understanding Bereavement Evaluation Tool (UBET) was designed to measure effectiveness of the workbook at equipping students with essential knowledge. To assess validity and reliability of the UBET at measuring midwives' self-perceptions of knowledge surrounding delivery of bereavement care to childbearing women, partners and families who have experienced childbirth related bereavement. An evaluative audit using the UBET was undertaken to explore student midwives' (n=179) self perceived knowledge levels before and after the workbook intervention. Validity tests have shown that the UBET, (6-item version), could be considered a psychometrically robust instrument for assessing students' knowledge gain. PCA identified that the UBET comprised two sub-scales (theoretical knowledge base - Q 1, 2 & 3 and psychosocial elements of care delivery - Q 4, 5 & 6). Data has shown that the easy to administer and short 6-item UBET is a valid and reliable tool for educators to measure success at delivering education using the "Shaping bereavement care for midwives in clinical practice" work book. Copyright © 2012 Elsevier Ltd. All rights reserved.
Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai
The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.
Cai, Jiaoli; Guerriere, Denise N; Zhao, Hongzhong; Coyte, Peter C
The use of health services may vary across people with different socioeconomic statuses, and may be determined by many factors. The purposes of this study were (i) to examine the socioeconomic differences in the propensity and intensity of use for three main home-based health services, that is, home-based palliative care physician visits, nurse visits and personal support worker (PSW) hours; and (ii) to explore the determinants of the use of home-based palliative care services. A prospective cohort study was employed. A total of 181 caregivers were interviewed biweekly over the course of the palliative care trajectory, yielding a total of 994 interviews. The propensity and intensity of health service use were examined using logistic regression and negative binomial regression, respectively. The results demonstrated that both the propensity and intensity of home-based nurse and PSW visits fell with socioeconomic status. The use of home-based palliative care services was not concentrated in high socioeconomic status groups. The common predictors of health service use in the three service categories were patient age, the Palliative Performance Scale (PPS) score and place of death. These findings may assist health service planners in the appropriate allocation of resources and service packages to meet the complex needs of palliative care populations.
Saunderson, Eric M; Ridsdale, Leone
Objectives To investigate the perceptions of general practitioners when they are notified or hear of a death or bereavement in their practice; to explore doctors’ accounts of their relationships with their patients in the context of bereavement; and to explore the concerns of general practitioners in managing themselves and bereaved patients. Design Semistructured interviews followed by qualitative content analysis. Setting London borough of Redbridge. Participants 25 general practitioners. Results Almost all the doctors had felt guilty about issues relating to the death of patients. These feelings were based on their expectations of not making mistakes and diagnostic precision. They described a culture gap existing between hospital and general practice and a need to develop new models and methods to explain and manage the causes of illness presented to them. In the absence of useful teaching on bereavement, many devised strategies which relied more on their personal experiences. General practitioners used various methods to contact bereaved patients, especially if they had been involved in the terminal care or if the death was particularly shocking. The doctor was also bereaved by the death of well known patients and sometimes needed to grieve and express emotion. Conclusion General practitioners may need support and learning methods to manage their own and their patients’ bereavement. Key messagesMost general practitioners fear making mistakes because they have a model of diagnostic precision based on their initial professional medical socialisationDoctors differ in their approaches to bereavement managementThe techniques developed by doctors to manage the immediate phase of bereavement stem from personal experience rather than medical trainingGeneral practitioners may need to express their own grief at the loss of a patient and a relationshipGeneral practice needs to develop its own models to reduce the stress felt by practitioners PMID:10426743
Valentine, Christine; McKell, Jennifer; Ford, Allison
This article reports findings from the first two stages of a three-stage qualitative study which considered the role of services, including public, private and charitable organisations, in responding to the needs of adults bereaved following the drug and/or alcohol-related death of someone close. The study, the first of its kind to explore the landscape and role of services in substance use deaths, was conducted over two sites: south west England and Scotland. In stage 1 of the research, adopting both convenience and purposive sampling, data were collected via semi-structured interviews on experiences and support needs of bereaved individuals (n = 106). In stage 2, six focus groups were conducted with a purposive sample of practitioners (n = 40), including those working for the police, coroner's service, procurator fiscal depute (Scotland), health service, funeral service, press, clergy, Public Health England, Drugs Policy Unit, bereavement counselling/support and alcohol and drug treatment services, to investigate how services may better respond to this bereavement. Thematic analysis from both data-sets identified two overarching themes. The first, focusing on practitioner responses, captures how these bereaved people may meet with inadequate, unkind, and discriminatory responses from services. Having to navigate unfamiliar, fragmented, and time-consuming procedures compounds the bereaved's distress at an already difficult time, illustrated by a 'mapping' of relevant services. The second relates to challenges and opportunities for those responding. Service failures reflect practitioners' poor understanding of both substance use bereavement and the range of other practitioners and services involved. Those bereaved are a poorly understood, neglected and stigmatised group of service users. There is a need for services to respond without judgement or insensitive language, and provide information about, communicate and work closely with, other services despite
Burrell, Lisa Victoria; Mehlum, Lars; Qin, Ping
Parentally bereaved offspring have an increased suicide risk as a group, but the ability to identify specific individuals at risk on the basis of risk and protective factors is limited. The present study aimed to investigate to what degree different risk factors influence suicide risk in offspring bereaved by parental death from external causes. Based on Norwegian registers, individual-level data were retrieved for 375 parentally bereaved suicide cases and 7500 parentally bereaved gender- and age-matched living controls. Data were analysed with conditional logistic regression. Bereaved offspring with low social support, indicated by offspring's single status and repeated changes in marital status and residence, had a significantly increased suicide risk compared to bereaved offspring with high social support. Moreover, low socioeconomic status, having an immigration background, having lost both parents and loss due to suicide significantly increased suicide risk. Several variables relevant to bereavement outcome, such as coping mechanisms and the quality of the parent-offspring relationship are impossible to examine by utilizing population registers. Moreover, the availability of data did not enable the measurement of marital stability and residence stability across the entire lifespan for older individuals. Healthcare professionals should be aware of the additional risk posed by the identified risk factors and incorporate this knowledge into existing practice and risk assessment in order to identify individuals at risk and effectively target bereaved family and friends for prevention and intervention programs. Ideal follow-up for bereaved families should include a specific focus on mobilizing social support. Copyright © 2017 Elsevier B.V. All rights reserved.
Chae, Jeong-Ho; Huh, Hyu Jung; Choi, Won Joon
On Wednesday, April 16, 2014, 261 high school students on a field trip died in the sinking of the Sewol ferry. The bereaved family of the Sewol ferry accident experienced one of the most painful traumatic losses such as the sudden death of one's child through an accident. This article reviewed and discussed embitterment related to traumatic loss through the example of the Sewol ferry accident. Embitterment-related issues and problems in coping with the accident that is caused by societal factors were described. In addition, embitterment-related findings of several previous studies based on bereaved families' mental health cohort study were reviewed. Traumatic loss of the human-made ferry accident was accompanied with feelings of being cheated, injustice, incompetence, wrongdoing by a perpetrator, and the destruction of one's belief and value system, causing severe embitterment. Embitterment was related to other mental health problems including depression, anxiety, and complicated grief. Social support and positive individual resource including optimism and wisdom can be helpful for recovery from posttraumatic embitterment. The goal of grief is to remember the decedent, understand the changes created by the loss, and determine how to reinvest in life. Embitterment may disturb the process of grief. Without the management of the embitterment, true grief may not be possible. The breakdown of value systems and severe embitterment should get more attention in future research. (PsycINFO Database Record (c) 2018 APA, all rights reserved).
O'Connor, Mary-Frances; Arizmendi, Brian J
Across many research domains, evidence for complicated grief as a distinct psychopathology continues to grow. Previous research from neuropsychology has shown an increased attentional bias to emotionally relevant stimuli in those suffering from complicated grief. This study furthers our understanding of the characteristics that distinguish complicated grief. We expand on previous research by (a) testing older adults, (b) excluding those with comorbid major depressive disorder, (c) using participant-chosen grief-related stimuli, and (d) using a married, nonbereaved control group. We recruited 76 older adults in 3 groups: spousally bereaved with complicated grief, spousally bereaved with noncomplicated grief, and nonbereaved controls. Performance on the Wisconsin Card Sorting Task, Digit Span Backwards, and the emotional counting Stroop was examined. Results indicate longer reaction time across 3 blocks of grief-related words in the complicated grief group but no difference across 3 blocks of the neutral words. The 3 groups performed comparably on the other neurocognitive tasks, indicating no cognitive differences in working memory or set shifting between groups. Furthermore, these effects of complicated grief generalize to older adults and appear independent of major depression. Complicated grief has cognitive interference as a neuropsychological component highlighting it as distinct from noncomplicated grief.
Ingleton, Christine; Chatwin, John; Seymour, Jane; Payne, Sheila
To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders (n = 17), in-depth interviews with bereaved carers (n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. © 2011 Blackwell Publishing Ltd.
McRitchie, Robyn; McKenzie, Karen; Quayle, Ethel; Harlin, Margaret; Neumann, Katja
This qualitative study explored the lived experiences of bereavement of 13 adults with an intellectual disability and found that their experiences could be situated within the concept of disenfranchised grief. The latter mediated participants' meaning making of the grieving process illustrated in the themes of intra- and interpersonal bereavement experiences, core beliefs about life and death, level of inclusion, and maintaining a continuing relationship with the deceased. The results suggest that participants experience bereavement and grief in a manner similar to that of the general population and suggest the need for open communication, facilitation of informed choice, and a culture of inclusion.
Rossetto, Kelly R
The current study involves the analysis of six bereaved parents' stories and argues that the development of philanthropic foundations helped these parents make meaning of their children's deaths and find purpose in the midst of their grief. Furthermore, philanthropy, as a way of making meaning and finding purpose, is a mutually beneficial process because it helps both the bereaved founders and the communities the organizations reach. Connections between these narratives and the bereavement literature help us better understand the individual/family grief process and meaning making, as well as how internal grief states intersect with communities.
Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced
To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.
Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith
Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.
Singhal, D.; van Gulik, T. M.; Gouma, D. J.
Around 80% of the patients with hilar cholangiocarcinoma are candidates for palliative management due to extensive co-morbidity for major surgery, metastases or advanced loco-regional disease. The primary aim of treatment is to provide biliary drainage with long-term relief from pruritis,
On 27th June 2007, Malawi's first dedicated palliative care centre, Ndi Moyo, was officially opened by the Honourable. Marjorie Ngaunje, the then Minister of Health. Over 260 patients have registered since August 2006 when they first started to receive treatment for relief of severe and chronic pain which is frequently related ...
care. The confident and safe use of opioids in palliative care is an essential skill required by all. d o c t o r s . ... patient for ongoing clinical review. Start the elderly and frail .... (24 hour subcutaneous infusion ... (nursing or medical), pain special-.
de Visser, Marianne; Oliver, David J.
Purpose of review Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating
Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G
Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.
Full Text Available Cancer is the third highest cause of death in Kenya, preceded by infectious and cardiovascular diseases, and in most cases, diagnosed in later stages. Nurses are the primary caregivers, assessing and managing these patients in the clinic, in inpatient settings, and in rural and remote communities. While cancer rates remain high, the burden to the patient, the caregiver, and society as a whole continues to rise. Kenya's poverty complicates cancer even further. Many Kenyans are unaware of cancer's signs and symptoms, and limited diagnostic and treatment centers are available. Despite these barriers, there is still hope and help for those in Kenya, who suffer from cancer. The World Health Organization has stated that palliative care is a basic human right and nurses providing this care in Kenya are making efforts to support cancer patients' ongoing needs, in order to promote compassionate palliative care and prevent suffering. The purpose of this paper is to address the palliative care needs of patients with cancer in Kenya by providing education to nurses and influencing health-care policy and education at micro and macro levels. A case study weaved throughout will highlight these issues.
This podcast discusses the role of caregivers in Indian County and the importance of protecting their health. It is primarily targeted to public health and aging services professionals. Created: 12/23/2009 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 12/23/2009.
Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Tsuneto, Satoru; Shima, Yasuo
End-of-life (EOL) cancer care in general hospitals and home care has not previously been evaluated in Japan. This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide designated cancer centers, inpatient palliative care units (PCUs), and home hospices in Japan. We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in March 2008 for 56 designated cancer centers and in June 2007 for 100 PCUs and 14 home hospices. Outcomes were overall care satisfaction, structure and process of care (Care Evaluation Scale), and achievement of a good death (Good Death Inventory). In designated cancer centers, PCUs, and home hospices, 2794 (response rate 59%), 5312 (response rate 69%), and 292 (response rate 67%) bereaved family members participated, respectively. Mean scores for overall care satisfaction were high for all places of death, at 4.3 ± 1.2 for designated cancer centers, 5.0 ± 1.2 for PCUs, and 5.0 ± 1.0 for home hospices. Designated cancer centers showed significantly lower ratings than PCUs and home hospices for structure and process of care and achievement of a good death (P = 0.0001 each). Home hospices were rated significantly higher than PCUs for achievement of a good death (P = 0.0001). The main findings of this study were: (1) overall, bereaved family members were satisfied with end-of-life care in all three places of death; (2) designated cancer centers were inferior to PCUs and home hospices and had more room for improvement; and 3) home hospices were rated higher than PCUs for achieving a good death, although home hospices remain uncommon in Japan. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Full Text Available Introduction: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. Methods: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014 to evaluate prescribing practices in children with advanced cancer. Results: A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%, and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases. Conclusions: Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription
Mar 5, 2013 ... intriguing comparative study with Native American views on health promotion, Lazarus (2004) sees the South ... smart phone or mobile device ..... that could easily be harmful to the health of the bereaved. Culturally, the ...
Seyyed Nahid Hosseininezhad
Full Text Available The present research aims to study the effectiveness of cognitive-behavioral therapy (CBT on bereaved students' hope. This is an applied research of quasi-experimental type and pretest and posttest design with control group. We selected 30 bereaved university students using stratified sampling method. We used Schneider Hope Questionnaire as the pretest-posttest in the research and analyzed using the statistical method of covariance analysis. The data analysis results indicate that cognitive-behavioral therapy increases bereaved students' hope and there is a significant difference between the two groups. The results of this study show that cognitive-behavioral group therapy influences hope and increases bereaved students' hope by helping them in their emotional discharge and acceptance of death.
Journot-Reverbel, Katia; Raynaud, Jean-Philippe; Bui, Eric; Revet, Alexis
Though many different interventions are proposed for suicide-bereaved children and adolescents, few data exist concerning their efficiency. This literature review focused on psychosocial interventions specifically targeting children and adolescents bereaved by suicide to try to provide some validate therapeutic guidelines propositions for clinicians. We only found two articles specifically targeting children or adolescents: both of them seemed to show some efficacy in reducing some psychosocial variables (anxiety, depression…) in suicide-bereaved children but results were limited by methodological problems. This review failed to provide evidence-based guidelines propositions for suicide-bereaved children and underline the crucial need for research in this field. Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.
Full Text Available This article looks at the bereavement of children left orphaned by the HIV and Aids pandemic that is crippling the continent of Africa. Their bereavement is examined by means of the narrative approach and by integrating this approach with the traditional African art of storytelling. By listening to the stories of three Zulu children, the article gives them the opportunity to express their own unique stories of bereavement: stories that would otherwise have been silenced by the wave of bereavement in the wake of countless deaths worldwide as a result of HIV and Aids infection. It looks at the losses these children have suffered, their greatest fears and how their Zulu culture and customs influence their emotional experience of losing their parents. The article shows how they can – by means of storytelling – reformulate the story of their lives and find the proverbial pot of gold at the end of the rainbow.
Ingstrup, Katja Glejsted; Wu, Chun Sen; Olsen, Jørn
BACKGROUND: Maternal emotional stress during pregnancy has previously been associated with congenital neural malformations, but most studies are based on data collected retrospectively. The objective of our study was to investigate associations between antenatal maternal bereavement due to death...
Steen, Sue E
Little research has been published from a global perspective regarding needs of nurses and midwives related to perinatal bereavement. To identify needs and concerns of US and Spanish nurses and midwives who have worked with perinatal death and to identify the bereavement interventions they use to help families with this experience. A cross-sectional study was conducted. Data were collected in 2011 from US (n=44) and Spanish (n=15) nurses and midwives via a questionnaire. Statistically significant differences between the nurses/midwives in each country were found regarding needs relating to knowledge, communication skills and managing personal feelings. Interventions of accompanying, listening, offering keepsakes, baptism discussion, and funeral planning were also found to be significantly different between the two groups. These findings demonstrate a continued need to increase the standard and consistency of perinatal bereavement care worldwide. Bereavement education in nursing curricula and practice settings in both cultures is essential to increase the standard of care.
Sandvik, Kjetil; Christensen, Dorthe Refslund; Hård af Segerstad, Ylva
their loss as well as their ability to establish and continue their role as parents. However, with new practices on children’s graves, the growing use of memory tattoos and especially the use of online media as platform for various communities for bereaved parents, this seem to be changing and strengthen...... both the interpersonal communication and social interactions about and with the deceased child. This study presents results from case studies of both open and closed online grief communities for bereaved parents in Denmark and Sweden (Refslund Christensen & Sandvik 2013, Hård af Segerstad & Kasperowski...... media, casting online communities for bereaved parents as grief-ghettos? Studying bereaved parents’ grief work in dynamic communities online enhances our understanding of contemporary and contributes to a nuancing of theoretical understanding of parental grief. References Christensen, D. R., & Sandvik...
Clute, Mary Ann
This grounded theory study gathered descriptions the bereavement experience for adults with intellectual disabilities (IDD) through the eyes and voices of a small sample of grief counselors. The counselors described bereaved adults with IDD as individuals who faced potentially heightened effects of the broken attachment bonds, increased risk of coping obstacles, long histories of unrecognized losses, and disenfranchised grief. The participants described bereaved adults with IDD (who sought treatment) as getting pushed to the sidelines to deal with their losses in isolation and confusion. It became evident that though there are many similarities between how all people cope with loss and how people with IDD cope with loss, differences exist. Subtle variations in the experience of loss and grief appear to be driven by culture and beliefs about disability and protection for those with IDD. The participants in this dissertation study contributed foundation data for a theoretical explanation of grief for adults with IDD grounded in data from bereavement counselors.
Background: The vast majority of research into the experiences of people with learning disabilities (LD) in regard to bereavement and grief involves the collection of data from second-hand sources, or via quantitative measures. This qualitative study aimed to explore the lived experiences of bereavement and grief in a group of adults with mild LD. Methods: Semi-structured interviews were carried out with 13 adults (aged 20-72 years) with mild LD who had experienced bereaveme...
McRitchie, Robyn; McKenzie, Karen; Quayle, Ethel; Harlin, Margaret; Neumann, Katja
This qualitative study explored the lived experiences of bereavement of 13 adults with an intellectual disability and found that their experiences could be situated within the concept of disenfranchised grief. The latter mediated participants' meaning making of the grieving process illustrated in the themes of intra- and interpersonal bereavement experiences, core beliefs about life and death, level of inclusion, and maintaining a continuing relationship with the deceased. The results suggest...
Schroth, Klara Charlotte
Death, dying and bereavement are universal human concerns and yet never fully compre-hensible or knowable. In order to find an approach to the topic, this paper examines and analyses literary representations of death, dying and bereavement in Anglophone literature for children. Scholars such as Kathryn James or Roberta Seelinger Trites have argued for a shift from objective and realistic representations in pre-1980 children’s novels towards an increasing use of narrative devices and fantastic...
Han, Hyesung; Noh, Jin-Won; Huh, Hyu jung; Huh, Seung; Joo, Ji-Young; Hong, Jin Hyuk; Chae, Jeong-Ho
Few studies have assessed the overall effects of multi-centered, complicated mental health support on the grief process. This study investigated the broader influence of mental health support provided practically to the bereaved family on the severity of complicated grief. Ninety-three bereaved family members of the Sewol ferry accident were recruited. Severity of complicated grief, post-traumatic stress disorder (PTSD) and depressive disorder was assessed through self-reporting questionnaire...
Van der Houwen, H.K.
In this dissertation some of the major facets associated with the psychological effects of bereavement were the subject of investigation: risk factors, mediating processes and intervention. Previous research on risk factors is limited because of a number of methodological shortcomings: a focus on only one or a few factors (which increases the chances of reporting spurious results) and reliance on use of a single measure of bereavement outcome. We avoided these pitfalls by simultaneously exami...
Santos, Sara; Campos, Rui; Tavares, Sofia
The present study assessed the impact of suicide and distress on suicidal ideation in a sample of 93 Portuguese family members bereaved by suicide. A control community sample of 102 adults also participated. After controlling for educational level, those bereaved by the suicide of a family member were found to have higher levels of suicidal ideation. Forty-two percent of family members had Suicide Ideation Questionnaire scores at or above the cutoff point. General distress, dep...
Lawrence G Calhoun
Full Text Available Recent theory and research have drawn attention to the need to better understand the positive changes, termed posttraumatic growth, that often occur in bereaved individuals; even as negative emotions related to grief persist. We describe five dimensions of posttraumatic growth and present a model for understanding how the loss of a close other can eventually lead to a recognition of important positive personal changes. Loss, especially unexpected loss, disrupts an individual's beliefs about the world and initiates a process of rebuilding an understanding. During this process, many people come to realise their own strengths, appreciate the impact of their relationships, and have new spiritual insights. A strategy for facilitating growth during clinical work also is described.
José Manuel Hernández Garre
Full Text Available The aim of the study was to investigate the main representations, experiences and coping strategies developed by health professionals involved in perinatal bereavement care. A qualitative and phenomenological approach was used conducting a series of semi-structured interviews to professionals of different categories of obstetric areas of three public hospitals in the region of Murcia. The stories talk about of professionals trained for the life they have to face death, talk about of a lack of institutional training to the professionals react drawing on the experience, empathy or self-taught. They talk about painful situations that are experienced by clinicians with hints of tragedy, speak of care directed to the psychological management of mourning, talks about the transition from coping models duels based on avoidance and emotional detachment to others centered on the verbalization of experience and contact with the stillborn.
Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert
We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.
John Y Rhee
Funding: Arnhold Institute of Global Health at the Icahn School of Medicine at Mount Sinai, the African Palliative Care Association, the International Association for Hospice and Palliative Care, and the Institute for Culture and Society at the University of Navarra.
Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert
Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619
By law in 2013, palliative medicine will be integrated into the undergraduate curriculum as part of a mandatory training program and examinations at German medical schools. For this reason a national curriculum in palliative medicine has to be developed.
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.
Shaffer, Kelly M; Jacobs, Jamie M; Nipp, Ryan D; Carr, Alaina; Jackson, Vicki A; Park, Elyse R; Pirl, William F; El-Jawahri, Areej; Gallagher, Emily R; Greer, Joseph A; Temel, Jennifer S
Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Caregivers' mental health was worse than the U.S. national population (M = 44.31, p caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = -8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = -0.17, p = .01) caregivers with low educational attainment (B = 4.36, p family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.
Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel
A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation
Chan, Moon Fai; Lou, Feng-lan; Arthur, David Gordon
Caring for parents whose infant has died is extremely demanding, difficult, and stressful. In some situations, nurses may experience personal failure, feel helpless, and need to distance themselves from bereaved parents because they are unable to deal with the enormity of the parental feelings of loss. The aim of the study was to describe and compare attitudes toward perinatal bereavement care across a sample of nurses working in five obstetrics and gynecology settings from three Asian cities, as well as the factors associated with these attitudes. A survey was conducted, and 573 nurses were recruited from 2006 to 2007. The data were collected using the perinatal bereavement attitudes scale, which involves an 11-item self-report questionnaire. Nurses' attitudes were mainly positive, but differed across cities, with the attitude of Jinan nurses being significantly more positive than nurses from the other two cities, and the attitude of Hong Kong nurses being significantly the lowest. Positive attitudes were associated with position, and nurses who were well informed of hospital policy and received training for bereavement care were statistically significantly more likely to have a positive attitude toward perinatal bereavement care. Although nurses' attitudes to prenatal bereavement care differ significantly across the three Asian cities, they are generally similar. The differences observed could be related to the wider social, cultural, and organizational circumstances of nursing practice.
Aldair J Oliveira
Full Text Available BACKGROUND: Previous findings suggest that the loss of a family member is associated with health and mortality. The purpose of this study was to investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association. OBJECTIVE: To investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association. METHODS: We used cross-sectional data with retrospective questions from the Swedish Level of Living Survey (LNU of 2000, including 5,142 individuals. The bereavement experiences examined in the study include the loss of a sibling, a parent or a spouse, and time since the death of a parent. BMI (kg/m2 was calculated using self-reported measurements of weight and height. The association between bereavement and BMI was evaluated through linear regressions. RESULTS: After controlling for possible confounders, most of the models detected an association between bereavement and BMI. The fully-adjusted model showed that loss of parents was associated with a 0.45 increase in BMI (SE = 0.20. The effect also seemed to be dependent on time since the loss and social class position. CONCLUSIONS: The present study is the first to examine associations between different types of familial losses and BMI. We find an association between the death of a family member and BMI, but it appears to be related to time since the death, type of bereavement experience and social class.
Full Text Available The death of a child by suicide is a severe trauma, placing parents at greater risk of psychological morbidity and physical health problems compared to other causes of death. However, few studies have examined the aftermath and bereavement experience for parents following the death of a child to suicide, limiting the ability to guide effective postvention services through empirical research. The current study, which was part of a larger longitudinal investigation of suicide bereavement in Queensland, Australia, examined the individual experiences of both mothers and fathers bereaved by suicide over time, specifically at the six month and 12 month time points after their loss. Bereaved parents who had provided written consent to be contacted for research purposes were identified through the Queensland Suicide Register, and took part in individual, semi-structured interviews. Generic qualitative analysis identified three key themes: searching for answers and sense-making, coping strategies and support, and finding meaning and purpose. Some participants showed indications of meaning-making and post-traumatic growth at 12 months after the suicide. According to the dual process model of bereavement, it is likely that participants were still oscillating between sense-making and meaning making, indicating that adapting to bereavement is a dynamic and fluctuating process.
Since the seminal publications of Shneidman (1969) and Cain (1972), suicide bereavement and postvention have attracted increasing research interest. To examine the topics of suicide bereavement and postvention in the core international suicidology journals, since their inception until mid-2013, in order to reveal the number of postvention articles throughout the years, their geographic distribution, and the topics of suicide bereavement and postvention that have been published. The online databases of four journals (Crisis, The Journal of Crisis Intervention and Suicide Prevention; Suicide and Life-Threatening Behavior [SLTB]; Archives of Suicide Research; and Suicidology Online) as well as the tables of content of all issues were searched. The number of articles and the countries of origin were quantified, and articles were categorized according to their content. The search identified 144 postvention articles, published during the past 40 years, almost exclusively in two journals (Crisis and SLTB). The majority of articles were (co-)authored by authors from Anglo-Saxon, Western countries. Articles were categorized in three groups: characteristics of suicide bereavement (n = 73), postvention programs (n = 66), and definition/theory and epidemiology of survivors (n = 5). Articles on suicide bereavement and postvention have been published mostly in two suicidology journals, albeit in modest numbers, and from a limited number of mostly Western countries. Our understanding of suicide bereavement and the provision of survivor support might benefit from the development of consensual definitions and from studies in other parts of the world.
Floriani, Ciro A
To conceptualize palliative care and its indications in Pediatrics; to describe the difficulties involved in the delivery of such care at home for technology-dependent children; and to analyze, from a bioethical perspective, the moral dilemmas of palliative care assistance. A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas. There are several obstacles to palliative care for technology-dependent children: structural difficulties at home; social isolation of both children and families; health professionals' sense of disbelief regarding this type of care; an excessive number of medical devices at home; uncertainty of a terminal prognosis; physical, emotional, social, material, and financial burden for parents and family; changes in family dynamics to adjust to these children; paternalistic relationship between professionals and family; changes in family roles, with shifts in the caregiver role. It is essential to outline an agenda based on the premise that the medical apparatus for technology-dependent children will change the landscape of the home, and such a change might become a problem to be faced by all those living together. Based on this assumption, actions performed in a setting other than a health care facility might exert an actual protective effect on children and family, offering support in their several needs and developing a model of care delivery that includes interventions in the different levels of burden on these vulnerated and unprotected individuals.
Silbermann, M.; Arnaout, M.; Daher, M.; Nestoros, S.; Pitsillides, B.; Charalambous, H.; Gultekin, M.; Fahmi, R.; Mostafa, K.A.H.; Khleif, A.D.; Manasrah, N.; Oberman, A.
Background In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease. Methods The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers. Results During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries. Conclusions The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family. PMID:22628412
Kennedy, Beatrice; Chen, Ruoqing; Valdimarsdóttir, Unnur; Montgomery, Scott; Fang, Fang; Fall, Katja
Although childhood traumatic experiences are recognized as important determinants for adolescent psychiatric health in general, our objective was to explore the specific influence of childhood bereavement on the stress resilience development trajectory. In this national register-based cohort study, we identified 407,639 men born in Sweden between 1973 and 1983, who underwent compulsory military enlistment examinations in late adolescence, including measures of psychological stress resilience. We defined exposure as loss of a first-degree family member in childhood, and estimated relative risk ratios (RRRs) for reduced (moderate or low), compared with high, stress resilience with 95% confidence intervals (CIs) using multinomial logistic regression. Loss of a parent or sibling in childhood conferred a 49% increased risk of subsequent low stress resilience (RRR, 1.49, 95% CI, 1.41-1.57) and an 8% increased risk of moderate stress resilience (RRR, 1.08, 95% CI, 1.03-1.13) in late adolescence. There was also a graded increase in risk with increasing age at loss; teenagers were at higher risk for low resilience (RRR, 1.64, 95% CI, 1.52-1.77) than children aged 7-12 (RRR, 1.47, 95% CI, 1.34-1.61) and ≤6 years (RRR, 1.16 95% CI, 1.02-1.32). The excess risk was observed for all causes of death, including suicide and unexpected deaths as well as deaths due to other illnesses. The associations remained after exclusion of parents with a history of hospitalization for psychiatric diagnoses. The long-term consequences of childhood bereavement may include lower stress resilience in late adolescence. Copyright © 2018 The Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.
Full Text Available Background: Based on Bowlby's attachment theory, Bartholomew proposed a four-category attachment typology by which individuals judged themselves and adult relationships. This explanatory model has since been used to help explain the risk of psychiatric comorbidity. Objective: The current study aimed to identify attachment typologies based on Bartholomew's attachment styles in a sample of bereaved parents on dimensions of closeness/dependency and anxiety. In addition, it sought to assess the relationship between the resultant attachment typology with a range of psychological trauma variables. Method: The current study was based on a sample of 445 bereaved parents who had experienced either peri- or post-natal death of an infant. Adult attachment was assessed using the Revised Adult Attachment Scale (RAAS while reaction to trauma was assessed using the Trauma Symptom Checklist (TSC. A latent profile analysis was conducted on scores from the RAAS closeness/dependency and anxiety subscales to ascertain if there were underlying homogeneous attachment classes. Emergent classes were used to determine if these were significantly different in terms of mean scores on TSC scales. Results: A four-class solution was considered the optimal based on fit statistics and interpretability of the results. Classes were labelled “Fearful,” “Preoccupied,” “Dismissing,” and “Secure.” Females were almost eight times more likely than males to be members of the fearful attachment class. This class evidenced the highest scores across all TSC scales while the secure class showed the lowest scores. Conclusions: The results are consistent with Bartholomew's four-category attachment styles with classes representing secure, fearful, preoccupied, and dismissing types. While the loss of an infant is a devastating experience for any parent, securely attached individuals showed the lowest levels of psychopathology compared to fearful, preoccupied, or dismissing
Shih, Shaw-Nin; Turale, Sue; Shih, Fu-Jin; Tsai, Jen-Chen
To describe difficulties encountered by older widows in Taiwan and the impact of intrinsic or extrinsic religiosity on their coping strategies during early widowhood. There is very limited information about how Taiwan's widows cope with their bereavement and no studies reporting the relationship between religious beliefs and healthy adjustment during this distressing period. Between-method qualitative and quantitative triangulation was used. Semi-structured interviews were conducted and transcribed data were analysed by critical thematic analysis. Twenty women in Taiwan, >65 years old, (mean = 72.95) were interviewed within three years of being widowed. There were two informant groups: those with intrinsic religious beliefs and those with extrinsic religious beliefs. They all reported intrapersonal and interpersonal problems. Several major coping strategies arose: 'practising positive or negative attitudes for adaptation'; 'using person-focused actions'; and 'taking the initiative or passively seeking help from others or helping others'. Informants with intrinsic religious beliefs reported fewer coping problems by holding positive attitudes and taking multiple actions for adaptation. The extrinsic religious group had more negative adaptation attitudes, such as withdrawal and low self-esteem and practised less faith religious activities in worshipping ancestors, experiencing fatalism and using divination. They reported more coping problems than the intrinsic religious group. Widows in Taiwan have different coping problems and strategies in postbereavement adjustment, affected by their different religious beliefs systems. More research is required to establish the generalisabilty of these findings. Widows in Taiwan need to be assessed for their religious belief systems and how this affects their ability to cope during bereavement. Clinicians should actively provide grief support and encourage new methods of social adaptation, especially with widows with extrinsic
Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank
Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.
Cristina Anca COLIBABA
Full Text Available This article outlines learners’ difficulty in acquiring and practicing palliative medical skills necessary in medical procedures due to limited technologically state-of-the art language learning support to facilitate optimum access for medical students to the European medicine sector and offers as a potential solution the Palliative Care MOOC project (2014-1-RO01-KA203-002940. The project is co-financed by the European Union under the Erasmus+ program and coordinated by the Gr.T.Popa University of Medicine and Pharmacy Iasi, Romania. The article describes the project idea and main objectives, highlighting its focus and activities on developing innovative guidelines on standardized fundamental medical procedures, as well as clinical language and communication skills. The project thus helps not only medical lecturers and language teachers who teach medical students, but also the medical students themselves and the lay people involved in causalities.
Full Text Available Diminishing treatment alternatives, losing hope for a possible recovery, insufficient control of pain and inability to provide the necessary technical support lead palliative care to bring multiple problems with itself. Along with technical and professional challenges, palliative care can put a humanitarian strain on the nurse. Caring for a dying patient is a worrisome experience which causes spiritual pain. An increase in nurses’ death anxiety may cause unwillingness to be together with a dying patient. In terms of the end of life, it is expected that the nurse stands by patient’s family to help them in sustaining their psychosocial wellness. In order to meet this expectation, nurses should get a qualitative training for end of life care along with good interpersonal communication skills and coping strategies.
Sunil R Dhiliwal
Full Text Available Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS, multimedia messaging service (MMS and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility.
Dhiliwal, Sunil R; Salins, Naveen
Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS), multimedia messaging service (MMS) and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility. PMID:25709195
In Germany the incidence of breast cancer is about 85 and of prostate cancer about 50 new patients per 100.000 inhabitants/year. In about 80% of prostate cancer patients and 75% of breast cancer patients bone metastases are observed in autopsy. Most of these patients develop severe pain syndrome from bone metastases reducing quality of life during life time. Therapy of these patients should aim at adding life to the years not years to their life. The knowledge of metastatic cell biology, of cell-cell interaction and of tumor-cell, tumor cell-skeleton interaction may modify the therapeutic procedure. Already in 1940/41, Pecher treated a patient suffering from painful prostate cancer bone metastases administering 296 MBq 89 Strontium chloride. About 10 years later, Friedell introduced 32 Phosphorus for treatment of bone metastases from breast cancer. Today in Europe 3 radionuclides are approved for pain palliation therapy as shown in Table.1. Indication: - pain palliation therapy of bone metastases from prostate cancer ( 89 Sr and 186 Re); - pain palliation of all osteoblastic metastases independent from primary tumors ( 153 Sm). Contraindications: - pregnant and lactating females - myelosuppression ( 3 granulocytes; 3 platelets); - impaired renal function (urea >12 mmol/l; creatinine > 150 mmol/l) - incontinence; - acute or chronic spinal cord compression and/or brain metastases causing neurological symptoms; - disseminated intravascular coagulopathy. The recommended activities per treatment are: 89 Sr 150 MBq, 186 Re 1.295 MBq, and 153 Sm 37 MBq/kg BW. Shortly (6-8 weeks) prior to radionuclide therapy for pain palliation no high dose chemotherapy or large field radiation therapy should be performed. Stopping unlabelled bisphosphonate therapy prior to pain palliation therapy is not necessary. This radionuclide therapy may be repeated several time, the interval between tracer administration depends on blood cell count rate. The recommended intervals are for 89 Sr
Ramakrishnaiah, Vishnu Prasad Nelamangala; Malage, Somanath; Sreenath, G.S.; Kotlapati, Sudhakar; Cyriac, Sunu
Esophageal carcinoma has a special place in gastrointestinal carcinomas because it contains two main types, namely, squamous cell carcinoma and adenocarcinoma. Carcinoma esophagus patients require some form of palliation because of locally advanced stage or distant metastasis, where it cannot be subjected to curable treatment with surgery and chemoradiation. Many modalities of palliation of dysphagia are available, but the procedure with least morbidity, mortality, and long-term palliation of...
Borgsteede, S.D.; Deliens, L.; Francke, A.L.; Stalman, W.A.B.; Willems, D.L.; Eijk, T.T.M. van; Wal, G. van der
Object of the study: Epidemiological research into palliative care faces the problem of defining an adequate research population. Subjects in studies are alternately defined as patients receiving 'palliative care' , 'palliative treatment' or 'end of life care'. So far, it is not known how
Full Text Available Palliative sedation is a unique concern for the patient as well as the family. It is a difficult serious ethical dilemma for the physicians to handle. The conflicting ethical principles of autonomy, beneficence and nonmaleficence in continuing versus discontinuing all supportive devices raise concerns among health professionals whether this is euthanasia (physician-assisted suicide or is just prolonging the patient's unnecessary suffering.
Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J
Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.
Busolo, David; Woodgate, Roberta
bring about a sense of identity that may encompass a common language and religion. Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.Culture refers to patterns of explanatory models, beliefs, values and customs. These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems. Culture may be fluid because of developments in people's lives. In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families. Palliative care is often associated with supportive and hospice care. Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory. Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers
Full Text Available Background. Palliative care in Slovene health care system isn’t developed. Comparison with other countries is not possible in many aspects. There is no complete or appropriately educated palliative care team in hospitals or in primary care. Palliative care departments in hospitals and nursing homes do not exist. Holistic palliative home care is offered only by Slovene association of hospice. The pressure on nursing homes and nursing service departments is getting stronger. Standards and norms for staff, for living conditions and medical equipment do not allow any more admittances of patients with the needs of high category of care in these institutions.Conclusions. Indirect indicators of level of palliative care (e.g. morphine consumption, palliative care departments, home care network, undergraduate education, specialisation and research put Slovenia at the bade of the Europe. Statistics predict aging of population and more patients are also living with consequences of progressive chronic diseases and cancer.In the new healthcare reform there is an opportunity for palliative care to get an equal place in healthcare system. With coordinated implementation of palliative care departments, consultant teams and mobile specialistic teams, palliative care could reach a better level of quality. At the same time, quality permanent education is essential.
Lund, Line; Ross, Lone; Petersen, Morten Aagaard
BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and t...
Peacock, Shelley; Duggleby, Wendy; Koop, Priscilla
Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.
Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali
ABSTRACT Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: ”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT). Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced. PMID:29607340
Full Text Available Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included:”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT. Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.
Luescher, J L; Dede, D E; Gitten, J C; Fennell, E; Maria, B L
Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention.
Artico, Marco; D'Angelo, Daniela; Piredda, Michela; Petitti, Tommasangelo; Lamarca, Luciano; De Marinis, Maria Grazia; Dante, Angelo; Lusignani, Maura; Matarese, Maria
Patients with advanced illnesses show the highest prevalence for pressure injuries. In the palliative care setting, the ultimate goal is injury healing, but equally important is wound maintenance, wound palliation (wound-related pain and symptom management), and primary and secondary wound prevention. To describe the course of healing for pressure injuries in a home palliative care setting according to different end-points, and to explore patient and caregiver characteristics and specific care activities associated with their achievement. Four-year retrospective chart review of 669 patients cared for in a home palliative care service, of those 124 patients (18.5%) had at least one pressure injury with a survival rate less than or equal to six months. The proportion of healed pressure injuries was 24.4%. Of the injuries not healed, 34.0% were in a maintenance phase, whereas 63.6% were in a process of deterioration. Body mass index (P = 0.0014), artificial nutrition (P = 0.002), and age pay attention to artificial nutrition, continuous deep sedation, and the caregiver's role and gender. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Gomes, Barbara; de Brito, Maja; Sarmento, Vera P; Yi, Deokhee; Soares, Duarte; Fernandes, Jacinta; Fonseca, Bruno; Gonçalves, Edna; Ferreira, Pedro L; Higginson, Irene J
Discrete choice experiment (DCE) is a quantitative method that helps determine which service attributes are most valued by people and consequently improve their well-being. The objective of this study was to test a new DCE on home palliative care (HPC). Cross-sectional survey using the DCE method with adult patients and their family caregivers, users of three HPC services in Portugal. Service attributes were based on a Cochrane review, a meta-ethnography, and the few existing DCEs on HPC: 1) team's availability, 2) support for family caregivers, 3) homecare support, 4) information and planning, and 5) waiting time. The experimental design consisted in three blocks of eight choice sets where participants chose between two service alternatives that combined different levels of each attribute. We piloted the DCE using cognitive interviewing. Interviews were analyzed for difficulties using Tourangeau's model of information processing. The DCE was conducted with 21 participants of 37 eligible (10 patients with median Palliative Performance Scale score = 45, 11 caregivers). Most participants found the DCE easy (median 2 from 1 to 5), although two patients did not finish the exercise. Key difficulties related to comprehension (e.g., waiting time sometimes understood as response time for visit instead of time from referral to care start) and judgment (e.g., indecision due to similar service alternatives). The DCE method is feasible and acceptable but not all patients are able to participate. In the main study phase, we will give more attention to the explanation of the waiting time attribute. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Ghirotto, Luca; Busani, Elena; Salvati, Michela; Di Marco, Valeria; Caldarelli, Valeria; Artioli, Giovanna
Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.
... For Parents / Taking Care of You: Support for Caregivers What's in this article? The Caregiver's Dilemma Tips for Caregivers More Tips Getting Help ... there are moments when the sheer magnitude of what you're up against is so ... not alone. The Caregiver's Dilemma When you're the caregiver of a ...
Schene, A. H.; van Wijngaarden, B.; Koeter, M. W.
This article focuses on (1) the dimensionality of the caregiving concept; (2) the relation between the identified caregiving dimensions and characteristics of the patient, the caregiver, and their relationship; and (3) the relation between caregiving dimensions and caregiver distress. Findings are
Wittenberg-Lyles, Elaine; Parker Oliver, Debra; Demiris, George; Swarz, Jeff; Rendo, Matthew
Cancer caregivers have information and support needs, especially about cancer pain management. With high Internet use reported among caregivers, YouTube may be an accessible option when looking for information on cancer pain management. The purpose of this study was to explore the availability and characteristics of instructional cancer pain management videos on YouTube and determine to what extent these videos addressed the role of informal caregivers in cancer pain management. A systematic review of videos on YouTube resulting from search terms "pain and cancer," "pain and hospice," and "pain and palliative care" was conducted in May 2013. If the video addressed pain management, was in English, and was instructional, it was coded for the scope and design of instructional content that included caregivers. The search terms yielded 1118 unique videos, and 43 videos met the inclusion criteria. Overall, 63% of videos were viewed 500 times or less, and half of the videos received "like" ratings by viewers. Video instruction was primarily talk without any onscreen action (65%), user-generated amateur video (79%), and had poor quality sources of information. Videos were mainly clinician centered (77%). Although most videos addressed the need for caregiver pain assessment (35%) and caregiver education (23%), few actually addressed specific caregiver pain management barriers. Most videos were primarily directed toward a clinical audience. Future research is necessary to determine if the platform is feasible and beneficial as a support tool for oncology caregivers. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
ten Have, Henk; Welie, Jos V M
The aim of this article was to review the ethical debate concerning palliative sedation. Although recent guidelines articulate the differences between palliative sedation and euthanasia, the ethical controversies remain. The dominant view is that euthanasia and palliative sedation are morally distinct practices. However, ambiguous moral experiences and considerable practice variation call this view into question. When heterogeneous sedative practices are all labeled as palliative sedation, there is the risk that palliative sedation is expanded to include practices that are actually intended to bring about the patients' death. This troublesome expansion is fostered by an expansive use of the concept of intention such that this decisive ethical concept is no longer restricted to signify the aim in guiding the action. In this article, it is argued that intention should be used in a restricted way. The significance of intention is related to other ethical parameters to demarcate the practice of palliative sedation: terminality, refractory symptoms, proportionality, and separation from other end-of-life decisions. These additional parameters, although not without ethical and practical problems, together formulate a framework to ethically distinguish a more narrowly defined practice of palliative sedation from practices that are tantamount to euthanasia. Finally, the article raises the question as to what impact palliative sedation might have on the practice of palliative care itself. The increasing interest in palliative sedation may reemphasize characteristics of health care that initially encouraged the emergence of palliative care in the first place: the focus on therapy rather than care, the physical dimension rather than the whole person, the individual rather than the community, and the primacy of intervention rather than receptiveness and presence. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
McLaughlin, Dorry; Barr, Owen; McIlfatrick, Sonja; McConkey, Roy
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals' perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training. A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed. Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: 'information and preparation', 'provision of care' and 'family-centred care'. This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Robertson, Meredith J P; Aldridge, Anne; Curley, Anna E
To establish what bereavement care services are available in neonatal units in the United Kingdom and to establish the availability to staff (doctors, nurses, and chaplains) of bereavement education, training, communication, and multicultural support. For families who lose a baby in the neonatal period, the support they receive from hospital staff can be pivotal in their ability to cope with their grief. Hospital staff are not always trained to provide this support. Limited evidence is available regarding hospital-based bereavement care in neonatology or its impact on outcome. Questionnaire survey of selected doctors, nurses, and chaplains in 200 neonatal units in the United Kingdom. We had responses from 100% of neonatal units surveyed. Of 600 individuals, 320 responded; 11% of doctors had never received any formal training in bereavement care, compared with 0.8% of nurses and 1.2% and chaplains. In addition, 31% of respondents thought the training they received was inadequate. Knowledge of grief theorists was poor. Up to 99% of units were helping parents create memories through photographs or handprints. Parents were uniformly given the chance to be with their baby at the time of death (99% overall). Siblings were encouraged to be present 71% of the time; 75% of respondents felt that information about the needs of different faith groups was available. Formal psychological support was offered to 45% of families after bereavement. Studies have shown that parents value clear communication, education about grieving, and demonstrated emotional support by staff. Our study has shown that there are deficiencies in staff training and education in this area. Educators must promote the inclusion of content on bereavement/end-of-life care. Additional education on cultural issues would be helpful. Managing the bereavement process well to minimize morbidity for families and healthcare providers is an important challenge for the future.
Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert
Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.
Vroman, Kerryellen; Morency, Jamme
In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and…
Venkatasalu, Munikumar Ramasamy; Clarke, Amanda; Atkinson, Joanne
To explore and critically examine stakeholders' views and perceptions concerning the nurse-led Palliative Care Discharge Service in an acute hospital setting and to inform sustainability, service development and future service configuration. The drive in policy and practice is to enable individuals to achieve their preferred place of care during their last days of life. However, most people in UK die in acute hospital settings against their wishes. To facilitate individuals' preferred place of care, a large acute hospital in northeast England implemented a pilot project to establish a nurse-led Macmillan Palliative Care Discharge Facilitator Service. A pluralistic evaluation design using qualitative methods was used to seek stakeholders' views and perceptions of this service. In total, 12 participants (five bereaved carers and seven health professionals) participated in the evaluation. Semi-structured interviews were conducted with bereaved carers who used this service for their relatives. A focus group and an individual interview were undertaken with health professionals who had used the service since its inception. Individual interviews were also conducted with the Discharge Facilitator and service manager. Analysis of all data was guided by Framework Analysis. Four key themes emerged relating to the role of the Discharge Facilitator Service: achieving preferred place of care; the Discharge Facilitator as the 'conduit' between hospital and community settings; delays in hospital discharge and stakeholders' perceptions of the way forward for the service. The Discharge Facilitator Service acted as a reliable resource and support for facilitating the fast-tracking of end-of-life patients to their preferred place of care. Future planning for hospital-based palliative care discharge facilitating services need to consider incorporating strategies that include: increased profile of the service, expansion of service provision and the Discharge Facilitator's earlier
Full Text Available Abstract Background The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated. Methods/Design The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS, pain (VAS, and burden for family caregivers (BSFC. The inclusion of physicians and patients in the study starts in March 2007. Discussion Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. Trial registration: The study was registered at ‘current controlled trials (CCT’, registration number: ISRCTN78021852.
Pensak, Nicole Amoyal; Joshi, Tanisha; Simoneau, Teresa; Kilbourn, Kristin; Carr, Alaina; Kutner, Jean; Laudenslager, Mark L
Caregivers of cancer patients experience significant burden and distress including depression and anxiety. We previously demonstrated the efficacy of an eight session, in-person, one-on-one stress management intervention to reduce distress in caregivers of patients receiving allogeneic hematopoietic stem cell transplants (allo-HSCT). The objective of this study was to adapt and enhance the in-person caregiver stress management intervention to a mobilized website (eg, tablet, smartphone, or computer-based) for self-delivery in order to enhance dissemination to caregiver populations most in need. We used an established approach for development of a mhealth intervention, completing the first two research and evaluation steps: Step One: Formative Research (eg, expert and stakeholder review from patients, caregivers, and palliative care experts) and Step Two: Pretesting (eg, Focus Groups and Individual Interviews with caregivers of patients with autologous HSCT (auto-HSCT). Step one included feedback elicited for a mock-up version of Pep-Pal session one from caregiver, patients and clinician stakeholders from a multidisciplinary palliative care team (N=9 caregivers and patient stakeholders and N=20 palliative care experts). Step two included two focus groups (N=6 caregivers) and individual interviews (N=9 caregivers) regarding Pep-Pal's look and feel, content, acceptability, and potential usability/feasibility. Focus groups and individual interviews were audio-recorded. In addition, individual interviews were transcribed, and applied thematic analysis was conducted in order to gain an in-depth understanding to inform the development and refinement of the mobilized caregiver stress management intervention, Pep-Pal (PsychoEducation and skills for Patient caregivers). Overall, results were favorable. Pep-Pal was deemed acceptable for caregivers of patients receiving an auto-HSCT. The refined Pep-Pal program consisted of 9 sessions (Introduction to Stress, Stress and the
Provinciali, Leandro; Carlini, Giulia; Tarquini, Daniela; Defanti, Carlo Alberto; Veronese, Simone; Pucci, Eugenio
The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.
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van den Heuvel, Wim J. A.; Olaroiu, Marinela
Palliative care is directed to maintenance of quality of life and to prevent and to relief suffering of those with a life-threatening disease. Palliative care does not only concern the patient, but also the quality of life of family members and it deals with physical symptoms as well as with
... to you, need help with: Coping with the stress of a serious illness Emotional support Spiritual or religious support Talking with your family about your illness and what is important to ... What Is Palliative Care Definition Pediatric Palliative Care Disease Types FAQ Handout for ...
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Mahmut Yaşar Çeliker
Full Text Available Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.
Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives. PMID:28804708
Conclusion: Caregiving appraisal is a multidimensional concept, which has positive and negative aspects. By taking into account all aspects of this concept, one can better understand and ultimately has a more comprehensive assessment of the status of caregivers, and implement effective interventions towards improving the health of this group.
Journal of Child and Adolescent Mental Health ... Data on socio-demographic factors, psychiatric morbidity among caregivers, and level of caregiver burden was collected using a researcher-designed socio-demographic questionnaire, Mini International Neuropsychiatric Interview, and Zarit burden interview, respectively.
Mularski, Richard A; Reinke, Lynn F; Carrieri-Kohlman, Virginia; Fischer, Mark D; Campbell, Margaret L; Rocker, Graeme; Schneidman, Ann; Jacobs, Susan S; Arnold, Robert; Benditt, Joshua O; Booth, Sara; Byock, Ira; Chan, Garrett K; Curtis, J Randall; Donesky, Doranne; Hansen-Flaschen, John; Heffner, John; Klein, Russell; Limberg, Trina M; Manning, Harold L; Morrison, R Sean; Ries, Andrew L; Schmidt, Gregory A; Selecky, Paul A; Truog, Robert D; Wang, Angela C C; White, Douglas B
In 2009, the American Thoracic Society (ATS) funded an assembly project, Palliative Management of Dyspnea Crisis, to focus on identification, management, and optimal resource utilization for effective palliation of acute episodes of dyspnea. We conducted a comprehensive search of the medical literature and evaluated available evidence from systematic evidence-based reviews (SEBRs) using a modified AMSTAR approach and then summarized the palliative management knowledge base for participants to use in discourse at a 2009 ATS workshop. We used an informal consensus process to develop a working definition of this novel entity and established an Ad Hoc Committee on Palliative Management of Dyspnea Crisis to further develop an official ATS document on the topic. The Ad Hoc Committee members defined dyspnea crisis as "sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers' ability to achieve symptom relief." Dyspnea crisis can occur suddenly and is characteristically without a reversible etiology. The workshop participants focused on dyspnea crisis management for patients in whom the goals of care are focused on palliation and for whom endotracheal intubation and mechanical ventilation are not consistent with articulated preferences. However, approaches to dyspnea crisis may also be appropriate for patients electing life-sustaining treatment. The Ad Hoc Committee developed a Workshop Report concerning assessment of dyspnea crisis; ethical and professional considerations; efficient utilization, communication, and care coordination; clinical management of dyspnea crisis; development of patient education and provider aid products; and enhancing implementation with audit and quality improvement.
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran [Great Ormond Street Hospital, Radiology Department, London (United Kingdom)
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)
Now, more than ever, palliative medicine has been gaining recognition for its essential role in cancer treatment. Since its beginning, it has emphasized the importance of collaboration among multidisciplinary professionals, valuing a comprehensive and holistic philosophy, addressing a wide range of hopes and suffering that patients and families experience. There are three models (approaches) for the medical teams: multidisciplinary, interdisciplinary, and transdisciplinary. Palliative care teams often choose the interdisciplinary team model, and the teams in the palliative care units may often choose the transdisciplinary team model. Recently, accumulating research has shown the clinical benefits of the interdisciplinary/transdisciplinary approach in palliative care settings. Clarifying appropriate functions and ideal features of physicians in the health care team, and enforcing the suitable team approach will contribute to improve the quality of whole medical practice beyond the framework of "palliative medicine".
Khan, I.M.; Aurangzeb, M.
To evaluate the role of palliative surgical treatment in patients with advanced pancreatic carcinoma. Study Design: Case series. Place and Duration of Study: Surgical Ward of Khyber Teaching Hospital, Peshawar, from January 2005 to January 2009. Methodology: The study included patients with pancreatic carcinoma admitted with advanced, unresectable carcinoma of the pancreas. Patients with resectable tumours and with previous history of gastric or biliary surgery were excluded. Palliative procedures were performed after assessment of the tumour and its confirmation as unresectable on ultrasound and CT scan + ERCP. Postoperatively all patients were referred to oncologist. Complications and mortality were noted. Results: There were 40 patients, including 24 males and 16 females with mean age 58.72 +- 6.42 years. The most common procedure performed was triple bypass in 21 (52.50%) patients followed by choledocho-, cholecysto-, hepaticoand gastro-jejunostomy in various combinations. Wound infection occurred in 7 patients and was more common in patients with co-morbidities. Biliary leakage occurred in 03 patients. Postoperative cholangitis occurred in 3 patients while 7 patients had minor leak from the drain site. Four patients developed UTI, while 5 patients had signs of delayed gastric emptying. Two patients had upper gastrointestinal bleeding. Three patients died due to septicemia and multiple organs failure. Rest of the patients were discharged in stable state. The mean hospital stay was 8.40 +- 3.48 days and median survival was 7.72 +- 2.39 months. Conclusion: Surgical palliation for the advanced carcinoma pancreas can improve the quality of life of patients and is associated with minimum morbidity and mortality. (author)
Koswig, S.; Buchali, A.; Boehmer, D.; Schlenger, L.; Budach, V.
Background: The effect of the palliative irradiation of bone metastases was explored in this retrospective analysis. The spectrum of primary tumor sites, the localization of the bone metastases and the fractionation schedules were analyzed with regard to palliation discriminating total, partial and complete pain response. Patients and Methods: One hundred seventy-six patients are included in this retrospective quantitative study from April 1992 to November 1993. Two hundred fifty-eight localizations of painful bone metastases were irradiated. The percentage of bone metastases of the total irradiated localizations in our department of radiotherapy in the Carite-Hospital, the primary tumor sites, the localizations and the different fractionation schedules were explored. The total, partial and complete pain response was analyzed in the most often used fractionation schedules and by primary tumor sites. Results: Eight per cent of all irradiated localizations in the observation period were bone metastases. There were irradiated bone metastases of 21 different tumor sites. Most of the primary tumor sites were breast cancer (49%), lung cancer (6%) and kidney cancer (6%). The most frequent site of metastases was the vertebral column (52%). The most often used fractionation schedules were: 4x5 Gy (32%), 10x3 Gy (18%), 6x5 Gy (9%), 7x3 Gy (7%), 10x2 Gy (5%) and 2x8 Gy. The total response rates in this fractionation schedules were 72%, 79%, 74%, 76%, 75% and 72%, the complete response rates were 35%, 32%, 30%, 35%, 33% and 33%. There were no significant differences between the most often irradiated primary tumor sites, the most frequent localizations and the palliation with regard to total, partial and complete pain response. (orig.) [de
In an age of rising impact of online communication in social network sites (SNS), emotional interaction is neither limited nor restricted by time or space. Bereavement extends to the anonymity of cyberspace. What role does virtual interaction play in SNS in dealing with the basic human emotion of grief caused by the loss of a beloved person? The analysis laid out in this article provides answers in light of an interdisciplinary perspective on online bereavement. Relevant lines of research are scrutinized. After laying out the theoretical spectrum for the study, hypotheses based on a prior in-depth qualitative content analysis of 179 postings in three different German online bereavement platforms are proposed and scrutinized in a quantitative content analysis (2127 postings from 318 users). Emotion regulation patterns in SNS and similarities as well as differences in online bereavement of children, adolescents and adults are revealed. Large-scale quantitative findings into central motives, patterns, and restorative effects of online shared bereavement in regulating distress, fostering personal empowerment, and engendering meaning are presented. The article closes with implications for further analysis in memorialization practices.
McCabe, Patrick J; Christopher, Paul P
Despite the removal of the bereavement exclusion from DSM-5, clinicians may feel uncertain on how to proceed when caring for a patient who presents with depressive symptoms following the death of someone close. The ability to better distinguish, on a symptom and functional level, between patients who experience depression in the context of bereavement and those with nonbereavement-related depression, could help guide clinical decision making. Individual and clustered depressive symptom and impairment measures were used for modeling bereavement status within a nationally representative longitudinal cohort. Deviance, linear shrinkage factor, and bias-corrected c-statistic were used for identifying a well-calibrated and discriminating final model. Of the 450 (1.2%) respondents with a single brief major depressive episode, 162 (38.4%) reported the episode as bereavement-related. The bereaved were less likely to endorse worthlessness (P depressive episodes following the death of a loved one from other brief episodes. These differences can help guide clinical care of patients who present with depressive symptoms shortly after a loved one's death. © 2015 Wiley Periodicals, Inc.
Katja Glejsted Ingstrup
Full Text Available Maternal emotional stress during pregnancy has previously been associated with congenital neural malformations, but most studies are based on data collected retrospectively. The objective of our study was to investigate associations between antenatal maternal bereavement due to death of a close relative and neural tube defects (NTDs in the offspring.We performed a register-based cohort study including all live-born children (N = 1,734,190 from 1978-2008. Exposure was bereavement due to loss of a close relative from one year before conception to the end of the first trimester of pregnancy. The outcome was NTDs in the offspring according to the International Classification of Disease. We used multivariate logistic regression to estimate prevalence odds ratios (ORs.A total of 2% children were born to mothers who lost a close relative prenatally. During 30 years of follow-up, 1,115 children were diagnosed with any NTDs: spina bifida (n = 889, anencephaly (n = 85 and encephalocele (n = 164. And 23 children were diagnosed with two types of NTDs. Overall, when comparing bereaved mothers to non-bereaved mothers, no significant increased prevalence of NTDs in the offspring was seen (OR = 0.84; 95% confidence interval: 0.52-1.33.Overall maternal bereavement in the antenatal period was not related to NTDs in liveborn offspring.
Buyukcan-Tetik, Asuman; Finkenauer, Catrin; Schut, Henk; Stroebe, Margaret; Stroebe, Wolfgang
The present research focused on bereaved parents' perceived grief similarity, and aimed to investigate the concurrent and longitudinal effects of the perceptions that the partner has less, equal, or more grief intensity than oneself on relationship satisfaction. Participants of our longitudinal study were 229 heterosexual bereaved Dutch couples who completed questionnaires 6, 13, and 20 months after the loss of their child. Average age of participants was 40.7 (SD = 9.5). Across 3 study waves, participants' perceived grief similarity and relationship satisfaction were assessed. To control for their effects, own grief level, child's gender, expectedness of loss, parent's age, parent's gender, and time were also included in the analyses. Consistent with the hypotheses, cross-sectional results revealed that bereaved parents who perceived dissimilar levels of grief (less or more grief) had lower relationship satisfaction than bereaved parents who perceived similar levels of grief. This effect remained significant controlling for the effects of possible confounding variables and actual similarity in grief between partners. We also found that perceived grief similarity at the first study wave was related to the highest level of relationship satisfaction at the second study wave. Moreover, results showed that perceived grief similarity was associated with a higher level in partner's relationship satisfaction. Results are discussed considering the comparison and similarity in grief across bereaved partners after child loss. (PsycINFO Database Record (c) 2017 APA, all rights reserved).