Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study.

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Nemati, Shahnaz; Rassouli, Maryam; Ilkhani, Mahnaz; Baghestani, Ahmad Reza

2018-03-01

The experience of caring for a family member with cancer is associated with several care-related problems and challenges for the caregiver. The comprehensive and in-depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. The present qualitative study was conducted through in-depth semi-structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. The codes extracted from interviews produced four main themes, including 'confusion', 'uncertainty', 'disintegration' and 'setback', which collectively caused suffering for family caregivers. Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans. © 2017 Nordic College of Caring Science.

A clinician-administered observation and corresponding caregiver interview capturing DSM-5 sensory reactivity symptoms in children with ASD.

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Siper, Paige M; Kolevzon, Alexander; Wang, A Ting; Buxbaum, Joseph D; Tavassoli, Teresa

2017-06-01

Sensory reactivity is a new criterion for autism spectrum disorder (ASD) in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). However, there is no consensus on how to reliably measure sensory reactivity, particularly in minimally verbal individuals. The current study is an initial validation of the Sensory Assessment for Neurodevelopmental Disorders (SAND), a novel clinician-administered observation and corresponding caregiver interview that captures sensory symptoms based on DSM-5 criteria for ASD. Eighty children between the ages of 2 and 12 participated in this study; 44 children with ASD and 36 typically developing (TD) children. Sensory reactivity symptoms were measured using the SAND and the already validated Short Sensory Profile (SSP). Initial psychometric properties of the SAND were examined including reliability, validity, sensitivity and specificity. Children with ASD showed significantly more sensory reactivity symptoms compared to TD children across sensory domains (visual, tactile, and auditory) and within sensory subtypes (hyperreactivity, hyporeactivity and seeking). The SAND showed strong internal consistency, inter-rater reliability and test-retest reliability, high sensitivity (95.5%) and specificity (91.7%), and strong convergent validity with the SSP. The SAND provides a novel method to characterize sensory reactivity symptoms based on DSM-5 criteria for ASD. This is the first known sensory assessment that combines a clinician-administered observation and caregiver interview to optimally capture sensory phenotypes characteristic of individuals with neurodevelopmental disorders. The SAND offers a beneficial new tool for both research and clinical purposes and has the potential to meaningfully enhance gold-standard assessment of ASD. Autism Res 2017, 10: 1133-1140. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives.

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Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

2016-05-01

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

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Carney, Sile; Corr, Bernie; Mays, Iain; Pender, Niall; Hardiman, Orla

2018-01-01

Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population.

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Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit

2018-03-01

We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p Family caregiver burden were also higher in depressive groups (p family caregiver role was negatively correlated (p caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.

Validating a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for dementia caregivers.

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Tang, Jennifer Yee-Man; Ho, Andy Hau-Yan; Luo, Hao; Wong, Gloria Hoi-Yan; Lau, Bobo Hi-Po; Lum, Terry Yat-Sang; Cheung, Karen Siu-Lan

2016-09-01

The present study aimed to develop and validate a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for Hong Kong Chinese dementia caregivers. The 12-item Zarit Burden Interview (ZBI) was translated into spoken Cantonese and back-translated by two bilingual research assistants and face validated by a panel of experts. Five hundred Chinese dementia caregivers showing signs of stress reported their burden using the translated ZBI and rated their depressive symptoms, overall health, and care recipients' physical functioning and behavioral problems. The factor structure of the translated scale was identified using principal component analysis and confirmatory factor analysis; internal consistency and item-total correlations were assessed; and concurrent validity was tested by correlating the ZBI with depressive symptoms, self-rated health, and care recipients' physical functioning and behavioral problems. The principal component analysis resulted in 11 items loading on a three-factor model comprised role strain, self-criticism, and negative emotion, which accounted for 59% of the variance. The confirmatory factor analysis supported the three-factor model (CZBI-Short) that explained 61% of the total variance. Cronbach's alpha (0.84) and item-total correlations (rho = 0.39-0.71) indicated CZBI-Short had good reliability. CZBI-Short showed correlations with depressive symptoms (r = 0.50), self-rated health (r = -0.26) and care recipients' physical functioning (r = 0.18-0.26) and disruptive behaviors (r = 0.36). The 12-item CZBI-Short is a concise, reliable, and valid instrument to assess burden in Chinese dementia caregivers in clinical and social care settings.

Men and masculinities in forensic psychiatric care: an interview study concerning male nurses' experiences of working with male caregivers and male patients.

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Kumpula, Esa; Ekstrand, Per

2009-09-01

Forensic psychiatric care is largely populated by men--as patients, caregivers, and nurses. Previous research has not focused on the meaning of gender in this context. The aim of this study is to analyse male nurses' experiences of working with male caregivers and attending to male patients in forensic psychiatric care. Data were collected through interviews with six male nurses. The results consist of five themes. Protection and defence are key aspects of care and male caregivers gain status and authority through their physical strength. This could hamper caring and provide male caregivers with a superior position in the department.

"I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

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Vroman, Kerryellen; Morency, Jamme

2011-01-01

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…

High perceived caregiver burden for relatives of patients following hip fracture surgery

DEFF Research Database (Denmark)

Ariza-Vega, Patrocinio; Ortiz-Piña, Mariana; Kristensen, Morten Tange

2018-01-01

treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing...... her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture......PURPOSE: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery. METHODS: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed...

Registered Nurses' Perceptions about the Situation of Family Caregivers to Patients with Heart Failure - A Focus Group Interview Study.

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Annelie K Gusdal

Full Text Available Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes.The aims of this study are to explore registered nurses' perceptions about the situation of family caregivers to patients with heart failure, and registered nurses' interventions, in order to improve family caregivers' situation.The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis.Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area "Family caregivers' situation" includes two categories: "To be unburdened" and "To comprehend the heart failure condition and its consequences". The content area "Interventions to improve family caregivers' situation" includes two categories: "Individualized support and information" and "Bridging contact".Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care" and or Family-centred care. Registered nurses consider it

Registered Nurses' Perceptions about the Situation of Family Caregivers to Patients with Heart Failure - A Focus Group Interview Study.

Science.gov (United States)

Gusdal, Annelie K; Josefsson, Karin; Thors Adolfsson, Eva; Martin, Lene

2016-01-01

Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes. The aims of this study are to explore registered nurses' perceptions about the situation of family caregivers to patients with heart failure, and registered nurses' interventions, in order to improve family caregivers' situation. The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis. Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area "Family caregivers' situation" includes two categories: "To be unburdened" and "To comprehend the heart failure condition and its consequences". The content area "Interventions to improve family caregivers' situation" includes two categories: "Individualized support and information" and "Bridging contact". Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care" and or Family-centred care. Registered nurses consider it necessary to have

Study of Burden Among Caregivers of Children with Cleft Lip and Palate

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Ana Paula Ribeiro Razera

Full Text Available Abstract: The psychological and physical health of caregivers of children with cleft lip and palate can be strongly influenced by the child’s condition and behavior, and care required by the treatment. This study’s objective was to identify overload levels among these caregivers. A total of 100 caregivers, whose children were in the perioperative period of cheiloplasty and/or palatoplasty, were interviewed using the Scale Burden Interview. The data were analyzed quantitatively. Moderate and moderate severe burden levels were identified in 43% of the sample. The mothers of children aged around 12 months presented significantly higher overload. The results indicate that children in this developmental stage present greater care demand because they seek autonomy in locomotion, explore objects in their surrounding environment, and continually request communicative and affective-social interaction with their reference to greater attachment (the caregiver, which may have contributed to higher burden.

(In-)formal caregivers' and general practitioners' views on hospitalizations of people with dementia - an exploratory qualitative interview study.

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Pohontsch, Nadine Janis; Scherer, Martin; Eisele, Marion

2017-08-04

Dementia is an irreversible chronic disease with wide-ranging effects on patients', caregivers' and families' lives. Hospitalizations are significant events for people with dementia. They tend to have poorer outcomes compared to those without dementia. Most of the previous studies focused on diagnoses leading to hospitalizations using claims data. Further factors (e.g. context factors) for hospitalizations are not reproduced in this data. Therefore, we investigated the factors leading to hospitalization with an explorative, qualitative study design. We interviewed informal caregivers (N = 12), general practitioners (GPs, N = 12) and formal caregivers (N = 5) of 12 persons with dementia using a semi-structured interview guideline. The persons with dementia were sampled using criteria regarding their living situation (home care vs. nursing home care) and gender. The transcripts were analyzed using the method of structuring content analysis. Almost none of the hospitalizations, discussed with the (in-)formal caregivers and GPs, seemed to have been preventable or seemed unjustifiable from the interviewees' points of view. We identified several dementia-specific factors promoting hospitalizations (e.g. the neglect of constricted mobility, the declining ability to communicate about symptoms/accidents and the shift of responsibility from person with dementia to informal or formal caregivers) and context-specific factors promoting hospitalizations (e.g. qualification of nursing home personal, the non-availability of the GP and hospitalizations for examinations/treatments also available in ambulatory settings). Hospitalizations were always the result of the interrelation of two factors: illnesses/accidents and context factors. The impact of both seems to be stronger in presence of dementia. Points for action in terms of reducing hospitalization rates were: better qualified nurses, a 24-h-GP-emergency service and better compensation for ambulatory monitoring

Caregiver reports of patient-initiated violence in psychosis.

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Onwumere, Juliana; Grice, Sarah; Garety, Philippa; Bebbington, Paul; Dunn, Graham; Freeman, Daniel; Fowler, David; Kuipers, Elizabeth

2014-07-01

Aggressive behaviour in psychosis is not uncommon. Community provision for people with psychosis has left informal caregivers to take on a greater role in their care. However, few studies have explored links between patient-initiated violence in mental health caregiving relationships and caregiver functioning. Our study investigated caregiver reports of aggressive acts committed by their relative with psychosis and their links to caregiver appraisals of the caregiving relationship and caregiver outcomes. Caregivers of patients with a recent relapse of psychosis, recruited to a psychological therapy trial, completed the audiotaped Camberwell Family Interview at baseline. This semi-structured interview includes questions on the quality of the relationship between caregiver and patient, and patient history of violence. Seventy-two transcripts of interviews were assessed for reports of patient-initiated violence. One-half of the caregiver sample (52.9%) reported an incident of patient-initiated violence during their interview; 62.2% of these involved violence toward themselves, and 24.3% toward property. Reports of patient violence were associated with caregiver ratings of hostility expressed toward patients, lower self-esteem, and emotion-focused coping. People caring on their own were more likely to report incidents of patient violence. Younger patients, males, and inpatients were more frequently identified as having a history of this kind of violence. Our findings suggested that caregiver reports of patient-initiated violence in psychosis are not uncommon. Mental health staff need to be aware of the risks of such violence for caregivers of people with psychosis, and consider appropriate procedures for minimizing it.

Optimal recall period for caregiver-reported illness in risk factor and intervention studies: a multicountry study.

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Arnold, Benjamin F; Galiani, Sebastian; Ram, Pavani K; Hubbard, Alan E; Briceño, Bertha; Gertler, Paul J; Colford, John M

2013-02-15

Many community-based studies of acute child illness rely on cases reported by caregivers. In prior investigations, researchers noted a reporting bias when longer illness recall periods were used. The use of recall periods longer than 2-3 days has been discouraged to minimize this reporting bias. In the present study, we sought to determine the optimal recall period for illness measurement when accounting for both bias and variance. Using data from 12,191 children less than 24 months of age collected in 2008-2009 from Himachal Pradesh in India, Madhya Pradesh in India, Indonesia, Peru, and Senegal, we calculated bias, variance, and mean squared error for estimates of the prevalence ratio between groups defined by anemia, stunting, and underweight status to identify optimal recall periods for caregiver-reported diarrhea, cough, and fever. There was little bias in the prevalence ratio when a 7-day recall period was used (<10% in 35 of 45 scenarios), and the mean squared error was usually minimized with recall periods of 6 or more days. Shortening the recall period from 7 days to 2 days required sample-size increases of 52%-92% for diarrhea, 47%-61% for cough, and 102%-206% for fever. In contrast to the current practice of using 2-day recall periods, this work suggests that studies should measure caregiver-reported illness with a 7-day recall period.

Exploring caregiver burden experienced by family caregivers of patients with End-Stage Renal Disease in Nigeria

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Yemisi Okikiade Oyegbile

Full Text Available Background: Family caregivers in many African countries bear the burden of caregiving alone, with the paucity of research, especially for caregivers of End-Stage Renal Disease patients, having concealed their needs. Aim: To explore the caregiver burden of family caregivers of End-Stage Renal Disease (ESRD patients in South-West Nigeria. Design: Following a complementary mixed method data collection strategy, the quantitative data was collected using the Zarit Burden Interview questionnaire to measure the burden of caregiving. Qualitative data was thereafter obtained through in-depth, individual interviews and was analysed using content analysis. Settings: The three research settings consisted of two state hospitals and one private hospital that provide renal care in South-West Nigeria. Result: The mean burden of caregiving for the sample was 50.18 thus indicating that family caregivers experienced moderate to severe burden, which is high compared to the other studies. The participants’ experiences of caregiving revealed the following categories: total dependence, acceptance of caregiving role, competing responsibilities, financial sacrifice and “not making mistakes”. Conclusion: Understanding the extent of caregiver burden, what constitutes burden to family caregivers in low/middle-income countries, and the difficulties associated with caregiving for care-recipients with ESRD, allows appropriate strategies and interventions to be developed. Keywords: End Stage Renal Disease, Family caregivers, Caregiver burden, Complementary mixed methods, Nigeria

An employee assistance program for caregiver support.

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Mains, Douglas A; Fairchild, Thomas J; René, Antonio A

2006-01-01

The Comprehensive Caregiver Choices Program provided support for employee caregivers of elderly people for employees at a hospital in Fort Worth, Texas. Key informant interviews and focus groups provided direction for program development and implementation. A full-time MSW and professionals with expertise in gerontology/geriatrics provided education and care coordination services to caregivers. Approximately 4% of the hospital's workforce participated in the program. Attendees evaluated educational sessions and follow-up interviews were conducted with program participants. Caregiver support programs must continue to seek innovative and creative marketing and service delivery methods to reach out and assist working caregivers in need of support.

Family caregiver communication in oncology: advancing a typology.

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Goldsmith, Joy; Wittenberg, Elaine; Platt, Christine Small; Iannarino, Nicholas T; Reno, Jenna

2016-04-01

The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type. Copyright © 2015 John Wiley & Sons, Ltd.

Family Caregivers' Reflections on Experiences of Assisted Suicide in Switzerland: A Qualitative Interview Study.

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Gamondi, C; Pott, Murielle; Preston, Nancy; Payne, Sheila

2018-04-01

Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines. To explore family caregivers' reflections on experiences of assisted suicide in Switzerland. A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis. Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers. Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore

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Cheryl Kai Ting Chua

2016-11-01

Full Text Available Informal caregivers (IC are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL, mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI, Caregiver Quality of Life Index—Cancer (CQOLC, Center for Epidemiologic Studies Depression Scale—Revised (CESD-R, and Work Productivity and Activity Impairment Questionnaire (WPAI were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%, and eight ICs had high burden (ZBI > 17. Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore.

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Chua, Cheryl Kai Ting; Wu, Jun Tian; Wong, Yin Yee; Qu, Limin; Tan, Yung Ying; Neo, Patricia Soek Hui; Pang, Grace Suyin

2016-11-15

Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index-Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews.

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Weisser, Fabia B; Bristowe, Katherine; Jackson, Diana

2015-09-01

Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring. To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers. Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring. Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and 'ticking along'. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive). Burden, resilience, needs and rewards are interrelated. Caregivers' ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive. Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans. © The Author(s) 2015.

Registered Nurses’ Perceptions about the Situation of Family Caregivers to Patients with Heart Failure - A Focus Group Interview Study

Science.gov (United States)

2016-01-01

Introduction Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes. Aims The aims of this study are to explore registered nurses’ perceptions about the situation of family caregivers to patients with heart failure, and registered nurses’ interventions, in order to improve family caregivers’ situation. Methods The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis. Results Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area “Family caregivers' situation” includes two categories: “To be unburdened” and “To comprehend the heart failure condition and its consequences”. The content area “Interventions to improve family caregivers' situation” includes two categories: “Individualized support and information” and “Bridging contact”. Conclusions Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care

The mediating effect of caregiver burden on the caregivers' quality of life.

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Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

2015-05-01

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

Potentially preventable hospitalizations in dementia: family caregiver experiences.

Science.gov (United States)

Sadak, Tatiana; Foster Zdon, Susan; Ishado, Emily; Zaslavsky, Oleg; Borson, Soo

2017-07-01

Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions. Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers' reactions to the hospitalization and recollections of the events leading up to it. Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises. This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

Science.gov (United States)

Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A

2016-06-01

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India.

Science.gov (United States)

Ajay, Shweta; Kasthuri, Arvind; Kiran, Pretesh; Malhotra, Rahul

In India, owing to cultural norms and a lack of formal long-term care facilities, responsibility for care of the older person falls primarily on the family. Based on the stress process model, we assessed the association of type and number of impairments of older persons (∼primary stressors) with caregiver burden among their family caregivers in rural South India. All impaired older persons (aged ≥60, with impairment in activities of daily living (ADL) or cognition or vision or hearing) residing in 8 villages in Bangalore district, Karnataka, India, and their primary informal caregivers were interviewed. Caregiver burden was measured using the Zarit Burden Interview (ZBI; higher score indicating greater perceived burden). Linear regression models, adjusting for background characteristics of older persons and caregivers, assessed the association of type of impairment (physical [Yes/No], cognitive [Yes/No], vision [Yes/No] and hearing [Yes/No]) and number (1 or 2 or 3 or 4) of older person impairments with caregiver burden. A total of 140 caregivers, caring for 149 older persons, were interviewed. The mean (standard deviation) ZBI score was 21.2 (12.9). Of the various older person impairments, ZBI score was associated only with physical impairment (β=6.6; 95% CI: 2.1-11.1). Relative to caregivers of older person with one impairment, those caring for an older person with all 4 impairments had significantly higher ZBI score (β=13.9; CI: 2.5-25.4). Caregivers of older persons with multiple impairments, especially physical impairment, are vulnerable. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving.

Science.gov (United States)

Wong, Daniel Fu Keung; Ng, Ting Kin; Zhuang, Xiao Yu

2018-05-21

This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong. Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition. As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress. As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

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Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

How Caregivers Make Meaning of Child Mental Health Problems: Toward Understanding Caregiver Strain and Help Seeking.

Science.gov (United States)

Mayberry, Lindsay S; Heflinger, Craig Anne

Family caregivers' conceptualizations of their child's emotional and behavioral problems (EBP) influence help-seeking for the child and caregiver strain. We analyzed 21 interviews with caregivers to explore their conceptualizations about the cause of their child's EBP, their experiences of strain, and their reported help-seeking behaviors. Caregivers had divergent conceptualizations of their child's EBP: 12 caregivers viewed the EBP as caused by a disorder and described the onset of symptoms as the central stressful event, whereas 9 caregivers described their child's problems as a response to an earlier stressor (e.g. trauma, abuse, divorce). Different patterns of caregiver strain and help-seeking were associated with caregiver conceptualization. All caregivers voiced a need for peer-to-peer support for caregivers and youth with EBP.

What Is the End of Life Period? Trajectories and Characterization Based on Primary Caregiver Reports.

Science.gov (United States)

Cohen-Mansfield, Jiska; Cohen, Rinat; Skornick-Bouchbinder, Michal; Brill, Shai

2018-04-17

As the population lives longer, end of life (EOL) is emerging as a distinct life phase, about which there is still limited understanding. Characterizing this important period is vital for clarifying issues regarding trajectory and decline at EOL and for health service planning on an institutional, communal, and societal level. In this article, we aim to characterize the EOL period, examining the duration and number of EOL stages, as well as functional, attitudinal, and emotional trajectories. In this cross-sectional study, 70 primary caregivers of deceased persons were interviewed. Standardized rates of functional, attitudinal, and emotional change across the EOL period were calculated. Frequencies were compared using the McNemar statistical test. EOL period was found to have a median length of 3.25 years, and an average of approximately three progressive stages. The duration of EOL stages tended to decrease as death approached. Unexpected events (eg new medical diagnosis/accident) served as the precipitating event for the EOL period for approximately half of the deceased persons, and changes in existing conditions (eg health status/cognitive state) were also reported to precipitate EOL for a similar proportion. Reports of functionality across stages found the steepest decline in the "physical" domain and the most moderate decline in the "social" domain. With each stage, positive indicators, such as "will to live," showed a progressive decline, whereas negative indicators, including "suffering" and "dependence level," progressively increased. Results help characterize EOL trajectories and should inform care planning and decision making at various levels. In addition, they suggest a methodology for better understanding EOL.

Measurement invariance across educational levels and gender in 12-item Zarit Burden Interview (ZBI) on caregivers of people with dementia.

Science.gov (United States)

Lin, Chung-Ying; Ku, Li-Jung Elizabeth; Pakpour, Amir H

2017-11-01

The Zarit Burden Interview (ZBI) is a commonly used self-report to assess caregiver burden. A 12-item short form of the ZBI has been developed; however, its measurement invariance has not been examined across some different demographics. It is unclear whether different genders and educational levels of a population interpret the ZBI items similarly. Therefore, this study aimed to examine the measurement invariance of the 12-item ZBI across gender and educational levels in a Taiwanese sample. Caregivers who had a family member with dementia (n = 270) completed the ZBI through telephone interviews. Three confirmatory factor analysis (CFA) models were conducted: Model 1 was the configural model, Model 2 constrained all factor loadings, Model 3 constrained all factor loadings and item intercepts. Multiple group CFAs and the differential item functioning (DIF) contrast under Rasch analyses were used to detect measurement invariance across males (n = 100) and females (n = 170) and across educational levels of junior high schools and below (n = 86) and senior high schools and above (n = 183). The fit index differences between models supported the measurement invariance across gender and across educational levels (∆ comparative fit index (CFI) = -0.010 and 0.003; ∆ root mean square error of approximation (RMSEA) = -0.006 to 0.004). No substantial DIF contrast was found across gender and educational levels (value = -0.36 to 0.29). The ZBI is appropriate for combined use and for comparisons in caregivers across gender and different educational levels in Taiwan.

Family Caregiver's Perception of Alzheimer's disease and caregiving in Chinese culture.

Science.gov (United States)

Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali

2015-01-01

This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving.

Caregiving of aged people, either professional job or acquiring merit in God's sight: an example of qualitative research.

Science.gov (United States)

Cankurtaran Őntaş, Ozlem; Tunç, Melike

2012-01-01

Nowadays because of lots of reasons, lifespan is increasing and caregiving of aged people becomes more and more important. Today it is understood how the professional care of aged people is significant, instead of being carried out by volunteers. Because of this, in this study we aimed to understand the problems, and thoughts of aging of caregivers who are working in nursing homes. This study was made using the so-called qualitative research, which is one of the research designs. Including general aim, interviews with 13 caregivers with structured questions, supported by spontaneous ones. Interviews were taped and transcribed verbatim. After that, they were grouped with the same themes. Thoughts are grouped with three main themes, which are about "aging", "working life", "caregiving of aged people". Aged people are described like people who are dependent, need interest, and represent the wisdom period. Also caregiving is described like both good job and punishment. Besides, the reason of working as a caregiver, is the economic needs. The suggestions of caregivers are increasing payment, giving psychological and emotional support, and also improving physical conditions. Economic satisfaction of caregivers, giving psychological support, caregivers with aged people and improving physical conditions are important to increase the quality of professional caregiving. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Physical disability contributes to caregiver stress in dementia caregivers.

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Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank

2005-03-01

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.

Positive and negative caregiver experiences in first-episode psychosis

DEFF Research Database (Denmark)

Jansen, Jens Einar; Lysaker, Paul H.; Harder, Susanne

2014-01-01

influenced their reports of both positive and negative caregiving experiences. Design A prospective consecutive cross-sectional study. Methods Forty caregivers of patients with first-episode psychosis were interviewed using semi-structured interview and questionnaires. Results Greater levels of distress...

Family caregivers' attributions about care-recipient behaviour: does caregiver relationship satisfaction mediate the attribution-distress relationship?

Science.gov (United States)

Hui, Siu-Kuen Azor; Elliott, Timothy R; Martin, Roy; Uswatte, Gitendra

2011-09-01

The relations of caregiver attributions about care-recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. This is a cross sectional study. Seventy-five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care-recipients' problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Caregivers' explanations about care-recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers. ©2010 The British Psychological Society.

The Zarit Caregiver Burden Interview Short Form (ZBI-12) in spouses of Veterans with Chronic Spinal Cord Injury, Validity and Reliability of the Persian Version.

Science.gov (United States)

Rajabi-Mashhadi, Mohammad T; Mashhadinejad, Hosein; Ebrahimzadeh, Mohammad H; Golhasani-Keshtan, Farideh; Ebrahimi, Hanieh; Zarei, Zahra

2015-01-01

To test the psychometric properties of the Persian version of Zarit Burden Interview (ZBI-12) in the Iranian population. After translating and cultural adaptation of the questionnaire into Persian, 100 caregiver spouses of Iran- Iraq war (1980-88) veterans with chronic spinal cord injury who live in the city of Mashhad, Iran, invited to participate in the study. The Persian version of ZBI-12 accompanied with the Persian SF-36 was completed by the caregivers to test validity of the Persian ZBI-12.A Pearson`s correlation coefficient was calculated for validity testing. In order to assess reliability of the Persian ZBI-12, we administered the ZBI-12 randomly in 48 caregiver spouses again 3 days later. Generally, the internal consistency of the questionnaire was found to be strong (Cronbach's alpha 0.77). Intercorrelation matrix between the different domains of ZBI-12 at test-retest was 0.78. The results revealed that majority of questions the Persian ZBI_12 have a significant correlation to each other. In terms of validity, our results showed that there is significant correlations between some domains of the Persian version the Short Form Health Survey -36 with the Persian Zarit Burden Interview such as Q1 with Role Physical (P=0.03),General Health (P=0.034),Social Functional (0.037), Mental Health (0.023) and Q3 with Physical Function (P=0.001),Viltality (0.002), Socil Function (0.001). Our findings suggest that the Zarit Burden Interview Persian version is both a valid and reliable instrument for measuring the burden of caregivers of individuals with chronic spinal cord injury.

Combining Employment and Caregiving: An Intricate Juggling Act.

Science.gov (United States)

Guberman, Nancy; Maheu, Pierre

1999-01-01

The process that allows family caregivers to combine employment and elder care was examined in interviews with 25 caregivers. The effects of elder care on employment are the result of the degree to which caregivers manage to maintain balance between different life spheres: personal and social life, family life, caregiving, and employment. (53…

Experiences and challenges of informal caregiving for Korean immigrants.

Science.gov (United States)

Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T; Lee, Jong Eun; Kim, Kim B

2008-09-01

This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers' unique caregiving experiences from their perspectives. A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 (1/2)-2 hours. Thematic analysis was conducted by two bilingual researchers. Three key themes were identified: the caregiver role - competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population.

The Zarit Caregiver Burden Interview Short Form (ZBI-12 in spouses of Veterans with Chronic Spinal Cord Injury, Validity and Reliability of the Persian Version

Directory of Open Access Journals (Sweden)

Mohammad T. Rajabi Mashhadi

2015-01-01

Full Text Available Background:  To test the psychometric properties of the Persian version of Zarit Burden Interview (ZBI-12 in the Iranian opulation.  Methods: After translating and cultural adaptation of the questionnaire into Persian, 100 caregiver spouses of Iran-Iraq war (1980-88 veterans with chronic spinal cord injury who live in the city of Mashhad, Iran, invited to participate in the study. The Persian version of ZBI-12 accompanied with the Persian SF-36 was completed by the caregivers to test validity of the Persian ZBI-12.A Pearson`s correlation coefficient was calculated for validity testing.In order to assess reliability of the Persian ZBI-12, we administered the ZBI-12 randomly in 48 caregiver spouses again 3 days later. Results:  Generally, the internal consistency of the questionnaire was found to be strong (Cronbach’s alpha 0.77. Intercorrelationmatrix between the different domains of ZBI-12 at test-retest was 0.78. The results revealed that majority of questions the Persian ZBI_12 have a significant correlation to each other. In terms of validity, our results showed that there is significant correlations between some domains of the Persian version the Short Form Health Survey -36 with the Persian Zarit Burden Interview such as Q1 with Role Physical (P=0.03,General Health (P=0.034,Social Functional (0.037, Mental Health (0.023 and Q3 with Physical Function (P=0.001,Viltality (0.002, Socil Function (0.001.  Conclusions:  Our findings suggest that the Zarit Burden Interview Persian version is both a valid and reliable instrument for measuring the burden of caregivers of individuals with chronic spinal cord injury.

Tacit definitions of informal caregiving.

Science.gov (United States)

Wrubel, J; Richards, T A; Folkman, S; Acree, M C

2001-01-01

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.

Caregiver roles in families affected by Huntington's disease

DEFF Research Database (Denmark)

Røthing, Merete; Malterud, Kirsti; Frich, Jan C

2013-01-01

AIM: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family. METHODOLOGY: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide...... for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family. CONCLUSIONS......: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how...

Examining Perceived Stigma of Children with Newly-Diagnosed Epilepsy and Their Caregivers Over a Two Year Period

OpenAIRE

Rood, Jennifer E.; Schultz, Janet R.; Rausch, Joseph R.; Modi, Avani C.

2014-01-01

The purpose of this study was to examine: 1) the course of perceived epilepsy-related stigma among children newly-diagnosed with epilepsy (n=39) and their caregivers (n=97) over a two year period, 2) the influence of seizure absence/presence on children and caregivers’ perception of epilepsy-related stigma, and 3) congruence of child and caregiver perception of child epilepsy-related stigma. Participants completed a measure of perceived epilepsy-related stigma at three time points, and seizur...

Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period.

Science.gov (United States)

Rood, Jennifer E; Schultz, Janet R; Rausch, Joseph R; Modi, Avani C

2014-10-01

The purpose of this study was to examine the following: 1) the course of perceived epilepsy-related stigma among children newly diagnosed with epilepsy (n=39) and their caregivers (n=97) over a two-year period, 2) the influence of seizure absence/presence on children and caregivers' perception of epilepsy-related stigma, and 3) the congruence of child and caregiver perception of child epilepsy-related stigma. Participants completed a measure of perceived epilepsy-related stigma at three time points, and seizure status was collected at the final time point. Results indicated that both caregivers (t(1,76)=-2.57, pstigma from diagnosis to two years postdiagnosis. No significant differences were found in caregiver and child reports of perceived stigma for children experiencing seizures compared with children who have been seizure-free for the past year. Results revealed poor caregiver-child agreement of perceived epilepsy-related stigma at all three time points. These data suggest that while children with epilepsy initially perceive epilepsy-related stigma at diagnosis, their perception of stigma decreases over time. Having a better understanding of the course of epilepsy-related stigma provides clinicians with information regarding critical times to support families with stigma reduction interventions. Copyright © 2014 Elsevier Inc. All rights reserved.

Prevalence and correlates of psychiatric morbidity among caregivers ...

African Journals Online (AJOL)

The caregivers were administered a sociodemographic questionnaire, GHQ-12, Zarit Burden interview, and the Columbia Impairment Scale. Results: Most caregivers observed in this study were females (80.5%) with mothers of the patients accounting for 78% of all the caregivers. A higher percentage of the patients were ...

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

Science.gov (United States)

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

2016-02-01

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.

Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

Science.gov (United States)

Mroz, Emily L; Poulin, Michael J; Grant, Pei C; Depner, Rachel M; Breier, Jennifer; Byrwa, David J; Wright, Scott T

2018-03-01

Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving.

Science.gov (United States)

Silver, Heidi J; Wellman, Nancy S; Galindo-Ciocon, Daisy; Johnson, Paulette

2004-01-01

We used stress process theory to identify family caregiving variables that are salient to the experience of managing older adults' home enteral nutrition. In this article, we describe the specific tasks family caregivers performed and their unique training needs in the context of caregiver preparedness, competence, effectiveness, and health care use. Hospital billing lists from two university-affiliated institutions in Miami, FL, were used to identify older adults who had enteral tubes placed over a 6-month period. Consent was obtained from those older adults discharged for the first time on home enteral nutrition and their family caregivers at the first scheduled outpatient visit. In-home interviews were conducted with a diverse sample of 30 family caregivers (14 white, 8 Hispanic, 7 African-American, 1 Asian) during their first 3 months (mean=1.83+/-0.69 months) of home enteral nutrition caregiving. Descriptive statistics were used to summarize data for all variables; chi(2) analysis was conducted to analyze differences in categorical variables. One-way analysis of variance was used to analyze mean differences among caregivers grouped by ethnicity for total number of hours and tasks performed. Post hoc comparisons were conducted using the Tukey HSD test. The Spearman rho correlations were calculated to assess bivariate associations between quantitative variables. Caregivers reported providing from 6 to 168 hours of care weekly (mean=61.87+/-49.67 hours), in which they performed an average of 19.73+/-8.09 caregiving tasks daily. Training needs identified were greatest for technical and nutrition-related tasks. Preparedness for caregiving scores were low (mean=1.72, maximum=4.0) and positively correlated with caregiver competence (P<.001) and self-rated caregiver effectiveness (P=.004). Preparedness negatively correlated with health care use (P=.03). Caregivers of older adults on home enteral nutrition need training for multiple nutrition-related and caregiving

Experiences and challenges of informal caregiving for Korean immigrants

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Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T.; Lee, Jong Eun; Kim, Kim B.

2010-01-01

Aim This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Background Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers’ unique caregiving experiences from their perspectives. Method A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 ½-2 hours. Thematic analysis was conducted by two bilingual researchers. Findings Three key themes were identified: the caregiver role – competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. Conclusion The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population. PMID:18727754

Development and reliability of a Motivational Interviewing Scenarios Tool for Eating Disorders (MIST-ED) using a skills-based intervention among caregivers.

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Sepulveda, Ana R; Wise, Caroline; Zabala, Maria; Todd, Gill; Treasure, Janet

2013-12-01

The aims of this study were to develop an eating disorder scenarios tool to assess the motivational interviewing (MI) skills of caregivers and evaluate the coding reliability of the instrument, and to test the sensitivity to change through a pre/post/follow-up design. The resulting Motivational Interview Scenarios Tool for Eating Disorders (MIST-ED) was administered to caregivers (n = 66) who were asked to provide oral and written responses before and after a skills-based intervention, and at a 3-month follow-up. Raters achieved excellent inter-rater reliability (intra-class correlations of 91.8% on MI adherent and 86.1% for MI non-adherent statements for written scenarios and 89.2%, and 85.3% for oral scenarios). Following the intervention, MI adherent statements increased (baseline = 9.4%, post = 61.5% and follow-up 47.2%) and non-MI adherent statements decreased (baseline = 90.6%, post = 38.5% and follow-up = 52.8%). This instrument can be used as a simple method to measure the acquisition of MI skills to improve coping and both response methods are adequate. The tool shows good sensitivity to improved skills. © 2013.

Caregiver perceptions about mental health services after child sexual abuse.

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Fong, Hiu-fai; Bennett, Colleen E; Mondestin, Valerie; Scribano, Philip V; Mollen, Cynthia; Wood, Joanne N

2016-01-01

The objective of this study was to describe caregiver perceptions about mental health services (MHS) after child sexual abuse (CSA) and to explore factors that affected whether their children linked to services. We conducted semi-structured, in-person interviews with 22 non-offending caregivers of suspected CSA victims<13 years old seen at a child advocacy center in Philadelphia. Purposive sampling was used to recruit caregivers who had (n=12) and had not (n=10) linked their children to MHS. Guided by the Health Belief Model framework, interviews assessed perceptions about: CSA severity, the child's susceptibility for adverse outcomes, the benefits of MHS, and the facilitators and barriers to MHS. Interviews were audio-recorded, transcribed, coded, and analyzed using modified grounded theory. Recruitment ended when thematic saturation was reached. Caregivers expressed strong reactions to CSA and multiple concerns about adverse child outcomes. Most caregivers reported that MHS were generally necessary for children after CSA. Caregivers who had not linked to MHS, however, believed MHS were not necessary for their children, most commonly because they were not exhibiting behavioral symptoms. Caregivers described multiple access barriers to MHS, but caregivers who had not linked reported that they could have overcome these barriers if they believed MHS were necessary for their children. Caregivers who had not linked to services also expressed concerns about MHS being re-traumatizing and stigmatizing. Interventions to increase MHS linkage should focus on improving communication with caregivers about the specific benefits of MHS for their children and proactively addressing caregiver concerns about MHS. Copyright © 2015 Elsevier Ltd. All rights reserved.

Association of Filial Responsibility, Ethnicity, and Acculturation Among Japanese American Family Caregivers of Older Adults.

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Miyawaki, Christina E

2017-03-01

Challenges of filial caregiving practices by 1st-generation immigrants due to differences in caregiving values between their home and host countries are well documented. This study explored the filial responsibility of later generation Japanese American caregivers of older adults. Acculturation and filial responsibility were measured using the Suinn-Lew Asian Self Identity Acculturation scale and Filial Values Index, respectively. A qualitative interview guide was developed using Gordon's assimilation theory, and 21 caregivers ( M age = 68 years, 86% female, seven in each generation) were interviewed. Despite the 3rd-generation caregivers' high acculturation level, their filial responsibility scores remained high. Qualitative interviews also revealed later generation caregivers' strong filial responsibility and continued caregiving involvement. Unexpectedly, caregivers' own future expectancy of care included placement in mainstream residential facilities rather than ethnic-specific settings. Findings point to the need to develop caregiver services that consider later generation caregivers' culture and level of assimilation.

Informal caregivers in hospitals: Opportunities and threats.

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Amiresmaili, Mohammadreza; Emrani, Zahra

2018-05-20

High hospital costs are a challenge that health system face. Additionally, studies identified manpower deficiency as a problem in health system. Hospital is a place where patients with different physical and mental conditions come to. Their families and friends' companionship can facilitate this situation for them. This study illustrates the roles of informal caregivers in hospital. This is a phenomenological qualitative study. Data were gathered through semistructured interviews. We interviewed 22 informal caregivers and 9 nurse staffs from different departments of hospital. They were selected through purposeful and snowball sampling approach. The framework method was used for data analysis. We found 3 main themes including (a) roles of informal caregivers, (b) opportunities of presence of the informal caregivers in the hospital, and (c) threats of presence of informal caregivers. This study shows some roles for informal caregivers including mental supports, consultation, decision-making, and care roles. Concerning the shortage of manpower in Iran's hospitals, nurses have less time to take care of each patient; therefore, using informal caregivers as an implicit strategy to overcome nursing shortage and to reduce hospital costs seems to be beneficial. We suggest that an appropriate plan is necessary to make use of them for filling this gap to some extent, as well as providing training sessions and facilities for companions acting as informal caregivers. Copyright © 2018 John Wiley & Sons, Ltd.

Examining Perceived Stigma of Children with Newly-Diagnosed Epilepsy and Their Caregivers Over a Two Year Period

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Rood, Jennifer E.; Schultz, Janet R.; Rausch, Joseph R.; Modi, Avani C.

2014-01-01

The purpose of this study was to examine: 1) the course of perceived epilepsy-related stigma among children newly-diagnosed with epilepsy (n=39) and their caregivers (n=97) over a two year period, 2) the influence of seizure absence/presence on children and caregivers’ perception of epilepsy-related stigma, and 3) congruence of child and caregiver perception of child epilepsy-related stigma. Participants completed a measure of perceived epilepsy-related stigma at three time points, and seizure status was collected at the final time point. Results indicated both caregivers (t1,76 = − 2.57 pstigma from diagnosis to two years post-diagnosis. No significant differences were found in caregiver and child report of perceived stigma for children experiencing seizures as compared to children who have been seizure-free for the past year. Results revealed poor caregiver-child agreement of perceived epilepsy-related stigma at all three time points. These data suggest that while children with epilepsy initially perceive epilepsy-related stigma at diagnosis, their perception of stigma decreases over time. Having a better understanding of the course of epilepsy-related stigma provides clinicians with information regarding critical times to support families with stigma reduction interventions. PMID:25173098

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

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Tough, Hannah; Brinkhof, Martin W; Siegrist, Johannes; Fekete, Christine

2017-10-01

To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). Cross-sectional, observational. Community setting. Caregiving partners of persons with spinal cord injury (N=118). Not applicable. Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=-1.10; 95% confidence interval [CI], -1.47 to -0.72; Psatisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Compassionate Love in Individuals With Alzheimer's Disease and Their Spousal Caregivers: Associations With Caregivers' Psychological Health.

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Monin, Joan K; Schulz, Richard; Feeney, Brooke C

2015-12-01

To examine whether compassionate love in both individuals with Alzheimer's disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. As hypothesized, both AD individuals' and caregivers' compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers' compassionate love mediated the association between AD individuals' compassionate love and caregivers' burden as well as the association between AD individuals' compassionate love and caregivers' positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers' compassionate love and less caregiver depressive symptoms. Results suggest that AD individuals' compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers' and AD individuals' feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners' compassionate love may benefit caregivers. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

An Exploration of Volition: Caregiver Perceptions of Persons with Dementia

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Christine Raber, PhD, OTR/L

2015-01-01

Full Text Available The purpose of this study was to understand what formal caregivers know about the volition of older adults with moderate dementia. A qualitative approach was used at one assisted living facility. Semi-structured interviews were conducted with formal caregivers to gain their perceptions of residents’ volition or motivation for occupation. Volition of resident participants was assessed using the Volitional Questionnaire (VQ. Caregiver interviews and resident VQ’s were analyzed using van Manen’s phenomenological approach to examine their congruence with regard to the volitional abilities of residents. Thematic analysis yielded two broad themes: (a Caregivers possess varying layers of insight regarding the volitional abilities of the older adults with dementia, and (b caregivers develop a script regarding the volitional abilities of the older adults with dementia. Caregivers possess knowledge about volitional abilities of older adults with dementia. Further research is needed to understand how these perceptions affect their care-giving behaviors.

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

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Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

2015-08-01

Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

Positive Aspects of Caregiving and Its Correlates among Caregivers of Bipolar Affective Disorder.

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Grover, S; Kate, N; Chakrabarti, S; Avasthi, A

2017-12-01

To evaluate the positive aspects of caregiving and its correlates (socio-demographic and clinical variables, caregiver burden, coping, quality of life, psychological morbidity) in the primary caregivers of patients with bipolar affective disorder (BPAD). A total of 60 primary caregivers of patients with a diagnosis of BPAD were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE) and the Hindi version of Involvement Evaluation Questionnaire, Family Burden Interview Schedule (FBIS), modified Hindi version of Coping Checklist, shorter Hindi version of the World Health Organization Quality of Life (WHOQOL-BREF), and Hindi translated version of 12-item General Health Questionnaire (GHQ-12). Caregivers of patients with BPAD had the highest mean score in the SPACE domain of Motivation for caregiving role (2.45), followed by Caregiver satisfaction (2.38) and Caregiving personal gains (2.20). The mean score was the lowest for the domain of Self-esteem and social aspect of caring (2.01). In terms of correlations, age of onset of BPAD had a negative correlation with various domains of SPACE. The mean number of total lifetime affective and depressive episodes correlated positively with Self-esteem and social aspect of caring. Caregiver satisfaction correlated negatively with FBIS domains of Disruption of routine family activities, Effect on mental health of others, and subjective burden. Coercion as a coping mechanism correlated positively with domains of Caregiving personal gains, Caregiver satisfaction, and the total score on SPACE. Three (Physical health, Psychological health, Environment) out of 5 domains of the WHOQOL-BREF correlated positively with the total SPACE score. No association was noted between GHQ-12 and SPACE scores. Positive caregiving experience in primary caregivers of patients with BPAD is associated with better quality of life of the caregivers.

Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China.

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Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying

2016-03-01

We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.

Culture, role conflict and caregiver stress: The lived experiences of family cancer caregivers in Nairobi.

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Githaiga, Jennifer Nyawira

2017-10-01

This article explores the experiences of a small group of Nairobi women caring for a family cancer patient at home. On the basis of literature on women as caregivers in Africa, and on other literature more broadly, it was anticipated that issues around generational roles, gender and women's cultural role would be relevant. Seven women participated in semi-structured in-depth interviews, while thirteen women participated in four mini focus groups. Data were analysed using interpretative phenomenological analysis. Findings underscore the socio-cultural complexities of caregiving as a basis for evidence-based culturally appropriate structures to support family caregivers.

Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

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Miyawaki, Christina E

2016-03-01

This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.

Understanding Family Caregiver Communication to Provide Family-Centered Cancer Care.

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Wittenberg, Elaine; Buller, Haley; Ferrell, Betty; Koczywas, Marianna; Borneman, Tami

2017-12-01

To describe a family caregiver communication typology and demonstrate identifiable communication challenges among four caregiver types: Manager, Carrier, Partner, and Lone. Case studies based on interviews with oncology family caregivers. Each caregiver type demonstrates unique communication challenges that can be identified. Recognition of a specific caregiver type will help nurses to adapt their own communication to provide tailored support. Family-centered cancer care requires attention to the communication challenges faced by family caregivers. Understanding the challenges among four family caregiver communication types will enable nurses to better address caregiver burden and family conflict. Copyright © 2017 Elsevier Inc. All rights reserved.

Burden in family caregivers of the elderly: prevalence and association with characteristics of the elderly and the caregivers

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Lara de Sa Neves Loureiro

2013-10-01

Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.

[The profile of caregivers to pediatric patients with cystic fibrosis].

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Alves, Stella Pegoraro; Bueno, Denise

2018-05-01

The scope of this study was to establish the profile of caregivers of pediatric patients diagnosed with Cystic Fibrosis (CF). It was a cross-sectional, descriptive and prospective study in which the caregivers of fibrocystic patients were interviewed during pharmaceutical consultation in a reference center of a University Hospital in southern Brazil. General information was obtained about the caregivers and about their understanding of the disease, drug consumption and dynamics of treatment at home and at school. Seventy-five caregivers were interviewed. Most of them were female, 37.3 years old on average, mothers of the patients who did not work outside the home. Seventy-one caregivers declared difficulties in drug acquisition and patient support associations were highlighted as the main alternative to avoid the interruption of treatment. Another fact observed was the overload of the caregiving process on the shoulders of only one caregiver resulting in social and economic impacts and changes to the family's daily routine. This fact emphasizes the need of intervention by a qualified multidisciplinary team to identify and alleviate difficulties, investing in interpersonal relations and administering care.

Adapters, strugglers, and case managers: a typology of spouse caregivers.

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Davis, Linda Lindsey; Chestnutt, Deborah; Molloy, Margory; Deshefy-Longhi, Tess; Shim, Bomin; Gilliss, Catherine L

2014-11-01

Although family home care problems are frequently described in the health care literature, the ways in which families and other informal caregivers manage those problems are not often addressed. We conducted a descriptive analysis of interviews in which spouses caring for a partner with Alzheimer's or Parkinson's disease were asked to describe difficult home care problems and how they managed those problems. Analysis of these interviews indicated three recurring management styles. Adapters told stories about applying pre-existing skills to manage home care problems. Strugglers told stories of reoccurring home care problems for which they had few or no management strategies. Case managers' interview stories focused on the challenges of finding and coordinating home care services. These findings suggest that caregiving burden might be influenced more by the caregiver's management style than the demands of the care situation. Suggestions for tailoring support programs for the three types of caregivers are proposed. © The Author(s) 2014.

Psychosocial experiences and needs of Australian caregivers of people with stroke: prognosis messages, caregiver resilience, and relationships.

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El Masry, Yasmeen; Mullan, Barbara; Hackett, Maree

2013-01-01

Despite stroke being the most common form of cerebrovascular disease, there has been relatively little attention paid to the psychosocial experiences and needs of Australian caregivers of people who have had a stroke. Twenty Australian informal caregivers and 10 stroke survivors participated in individual semi-structured qualitative interviews covering all aspects of caregiving, including stroke survivors' views on their caregiver's experiences. The 5 interrelated topics most discussed were changes in relationships and support services, including being told to expect a poor outcome; caregiver attributes and coping strategies; stroke survivor limitations; external employment and financial stressors; and unexpected positive changes in relationships and priorities. Caring for a stroke survivor involves a complex interaction of these factors that appear to be moderated by the quality of the pre-existing stroke survivor-caregiver relationship and the poststroke coping strategies used. Particular attention should be paid to how prognosis is conveyed and whether appropriate outpatient services are available. Clinicians should also consider discussing appropriate caregiver coping strategies and the quality of the relationship between the stroke survivor and caregiver.

Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

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Scharlach, Andrew E; Gustavson, Kristen; Dal Santo, Teresa S

2007-12-01

This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

Caregiver Burden, Quality Of Life And Vulnerability Towards Psychopathology In Caregivers Of Patients With Dementia/alzheimer's Disease

International Nuclear Information System (INIS)

Dawood, S.

2016-01-01

Objective: To identify caregivers' burden, evaluate quality of life in them; and predict anxiety and depression in caregivers of patients with Alzheimer's disease (AD). Study Design: Cross-sectional study. Place and Duration of Study: Neurology and Psychiatry Department of Lahore General Hospital (LGH), from January to December, 2013. Methodology: A purposive sample of 60 caregivers, who had been taking care of patients with AD for more than one year, were recruited from the study centre. The Zarit Burden Interview was used to assess caregiver burden. The brief version of World Health Organization Quality of Life Scale to assess quality of life and anxiety and depression subscales of symptom checklist-revised were administered to assess caregivers' vulnerability towards psychopathology. Results: There were 6 males and 54 females caregivers with mean age of 37.60 ± 14.87 years. The burden of caregiving had negative relationship (-0.57; -0.50; -0.48; and -0.50, respectively) with physical, psychological, social, and environmental domains of quality of life. Neither caregiver burden nor quality of life predicted for anxiety and depression in the caregivers. Conclusion: Caregiver burden may impair quality of life of caregivers but results imply the need to identify the interpersonal and intrapersonal characteristics of caregivers that buffered the adverse effects of caregiver burden and impaired the quality of life on psychological well being of the patients with AD. (author)

Pediatric acute gastroenteritis: understanding caregivers' experiences and information needs.

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Albrecht, Lauren; Hartling, Lisa; Scott, Shannon D

2017-05-01

Pediatric acute gastroenteritis (AGE) is a common condition with high health care utilization, persistent practice variation, and substantial family burden. An initial approach to resolve these issues is to understand the patient/caregiver experience of this illness. The objective of this study was to describe caregivers' experiences of pediatric AGE and identify their information needs, preferences, and priorities. A qualitative, descriptive study was conducted. Caregivers of a child with AGE were recruited for this study in the pediatric emergency department (ED) at a tertiary hospital in a major urban centre. Individual interviews were conducted (n=15), and a thematic analysis of interview transcripts was completed using a hybrid inductive/deductive approach. Five major themes were identified and described: 1) caregiver management strategies; 2) reasons for going to the ED; 3) treatment and management of AGE in the ED; 4) caregivers' information needs; and 5) additional factors influencing caregivers' experiences and decision-making. A number of subthemes within each major theme were identified and described. This qualitative descriptive study has identified caregiver information needs, preferences, and priorities regarding pediatric AGE. This study also identified inconsistencies in the treatment and management of pediatric AGE at home and in the ED that influence health care utilization and patient outcomes related to pediatric AGE.

Self-stigma among caregivers of people with mental illness: toward caregivers' empowerment.

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Girma, Eshetu; Möller-Leimkühler, Anne Maria; Dehning, Sandra; Mueller, Norbert; Tesfaye, Markos; Froeschl, Guenter

2014-01-01

In addition to economic and material burdens, caregivers of people with mental illness are exposed to psychosocial challenges. Self-stigma is among the psychological challenges that can be exacerbated by intrinsic and/or extrinsic factors. Caregivers' self-stigma can negatively influence the patients' treatment and rehabilitation process. The objective of this study was to measure the level and correlates of self-stigma among caregivers of people with mental illness. An interviewer-administered cross-sectional study was conducted in the Jimma University Specialized Hospital Psychiatry Clinic in Ethiopia on a sample of 422 caregivers. Data were collected by trained nurses working in the clinic using a pretested questionnaire. Multivariate linear regression was performed to identify the correlates of self-stigma among caregivers of people with mental illness. The majority (70.38%) of the caregivers were male. On a scale of 0 to 15, with 0 being low and 15 being high, the average self-stigmatizing attitude score was 4.68 (±4.11). A statistically significant difference in mean self-stigma score was found between urban and rural respondents (t=3.95, PSelf-stigma of caregivers showed significant positive correlation with perceived signs of mental illness (r=0.18, Pself-stigma was perceived supernatural explanation of mental illness (standardized β=0.22, Pself-stigma in this study was significantly correlated with perceived supernatural explanation of mental illness. Since caregivers' self-stigma may negatively influence patients' treatment-seeking, adherence, and rehabilitation processes, programs that enhance coping strategies by strengthening self-esteem and empowerment by health care providers and establish family support groups may be helpful to tackle self-stigma among caregivers of people with mental illness.

Caregivers' support needs and factors promoting resiliency after brain injury.

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Kitter, Bryony; Sharman, Rachael

2015-01-01

This article explores the challenges, support needs and coping strategies of caregivers of people with an acquired brain injury (ABI). Semi-structured interviews were conducted with caregivers (n = 20) to explore their support services received, access barriers, utility of services, needed supports, coping strategies and factors promoting life satisfaction. The team recorded, transcribed verbatim and inductively analysed all interviews. Through thematic data analysis, three central themes were revealed: (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. All perspectives from the participants involved are synthesized to provide a rich depiction of caregivers' support needs and coping strategies. Two specific findings of interest include a negative association between severity of brain injury and caregiver's desire to direct treatment, as well as a distinct service gap in assistance for caregivers who are caring for someone with violent/offending behaviours. This study recommends short- and long-term changes, given Australia's upcoming National Disability Insurance Scheme, to increase caregiver quality-of-life, which will ultimately affect the rehabilitation outcomes of persons with ABI.

The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

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Roberts, Emily; Struckmeyer, Kristopher M.

2018-01-01

Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252

CAREGIVER BURDEN AMONG PEOPLE CARING FOR PATIENTS WITH SCHIZOPHRENIA

Directory of Open Access Journals (Sweden)

Shivani Bansal

2017-04-01

Full Text Available BACKGROUND Caregivers of patients suffering from mental illness report burden in different areas including effects on family functioning, psychological problems, financial problems and health. The aim of the study is to determine the sociodemographic profile and caregiver burden among caregivers of persons with schizophrenia and to study the effect of patients’ psychopathology on caregiver burden scale. MATERIALS AND METHODS The present study was conducted in the Psychiatry Department, Government Medical College, Amritsar. A sample size of 34 was taken who were primary caregivers (preferably parents or spouse of schizophrenia patients diagnosed using ICD10. Measures included caregiver’s demographic variables and caregiver’s burden using the Zarit burden interview and PANSS scale in patients. Statistical Analysis- Data was analysed using SPSS software version 21. RESULTS The mean age of the caregiver was 42 SD (12.16 years. The majority of the caregivers were parents, married and employed. The mean average score of the responses to Zarit burden interview was (SD=59.52 ± 20.92. Majority of the caregivers experienced severe burden (52.9%, 9 (26.4% caregivers had reported moderate burden and 6 (17.6% had reported mild burden. The mean duration of illness was 6.89 (SD=5.03 years. The level of burden experienced was significantly associated with total PANSS score, negative symptoms, positive symptoms, general psychopathology score and duration of schizophrenia illness (p=0.00. CONCLUSION There is need for psychological assistance and social support for the vulnerable caregivers to help them reduce the burden levels and employ positive coping strategies.

Hiring and screening practices of agencies supplying paid caregivers to older adults.

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Lindquist, Lee A; Cameron, Kenzie A; Messerges-Bernstein, Joanne; Friesema, Elisha; Zickuhr, Lisa; Baker, David W; Wolf, Michael

2012-07-01

To assess what screening practices agencies use in hiring caregivers and how caregiver competency is measured before assigning responsibilities in caring for older adults. One-to-one phone interviews in which interviewers posed as prospective clients seeking a caregiver for an older adult relative. Cross-sectional cohort of agencies supplying paid caregivers to older adults in Illinois, California, Florida, Colorado, Arizona, Wisconsin, and Indiana. Four hundred sixty-two home care agencies were contacted, of which 84 were no longer in service, 165 offered only nursing care, and 33 were excluded; 180 agencies completed interviews. Agencies were surveyed about their hiring methods, screening measures, training practices, skill competencies assessments, and supervision. Two coders qualitatively analyzed open-ended responses. To recruit caregivers, agencies primarily used print and Internet (e.g., Craigslist.com) advertising (n = 69, 39.2%) and word-of-mouth referrals (n = 49, 27.8%). In hiring, agencies required prior "life experiences" (n = 121, 68.8%) few of which (n = 33, 27.2%) were specific to caregiving. Screening measures included federal criminal background checks (n = 96, 55.8%) and drug testing (n = 56, 31.8%). Agencies stated that the paid caregiver could perform skills, such as medication reminding (n = 169, 96.0%). Skill competency was assessed according to caregiver self-report (n = 103, 58.5%), testing (n = 62, 35.2%), and client feedback (n = 62, 35.2%). General caregiver training length ranged from 0 to 7 days. Supervision ranged from none to weekly and included home visits, telephone calls, and caregivers visiting the central office. Using an agency to hire paid caregivers may give older adults and their families a false sense of security regarding the background and skill set of the caregiver. © 2012, Copyright the Authors Journal compilation © 2012, The American Geriatrics Society.

The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study.

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Qiu, Xichenhui; Sit, Janet W H; Koo, Fung Kuen

2018-01-01

To explore and describe the caregiving experiences of Chinese stroke caregivers. Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture. A qualitative descriptive design was used. In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed. Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health. Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways. Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds. © 2017 John

Male caregivers of patients with breast and gynecologic cancer: experiences from caring for their spouses and partners.

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Lopez, Violeta; Copp, Gina; Molassiotis, Alexander

2012-01-01

There is considerable evidence demonstrating the negative effects of caregiving particularly in the areas of psychological well-being and quality of life of family caregivers of patients with cancer. However, there is little work on male caregivers' subjective experience of caring for family members with cancer, and little is known on how caregivers experience the caring over time. The objective of the study was to explore male spouses'/partners' experience of caring for their wives/partners with breast and gynecologic cancer over a 1-year period. An exploratory longitudinal qualitative descriptive design using face-to-face interviews of 15 spouses/partners was used in this study. Content analysis of the transcribed data was conducted to extract significant categories and themes. Varying degrees of interrelated cognitive, physical, and psychological impact were experienced by caregivers that extended to 12 months. Gender-specific attitudes prevented male caregivers from supporting their own self. Male caregivers dealt with problems that arose in the caregiving congruent with their masculinity, such as minimizing disruptions, focusing on tasks, and keeping their own stress to themselves. Male caregivers as a separate group with their own needs have not received much attention in the cancer literature, and their concerns and challenges may differ from those of female caregivers. Male caregivers' concerns and challenges must be taken into consideration when planning appropriate interventions to support them in their caregiving role.

Exploration the Supportive Needs and Coping Behaviors of Daughter and Daughter in-Law Caregivers of Stroke Survivors, Shiraz-Iran: A Qualitative Content Analysis.

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Gholamzadeh, Sakineh; Tengku Aizan, Hamid; Sharif, Farkhondeh; Hamidon, Basri; Rahimah, Ibrahim

2015-07-01

The period of hospital stay and the first month after discharge have been found to be the most problematic stages for family caregivers of stroke survivors. It is just at home that patients and caregivers actually understand the whole consequences of the stroke. The adult offspring often have more different needs and concerns than spousal caregivers. However, relatively little attention has been paid to the needs of this particular group of caregivers. Therefore, this qualitative content analysis study aimed to explore the supportive needs and coping behaviors of daughter and daughter in-law caregivers (DILs) of stroke survivors one month after the patient's discharge from the hospital in Shiraz, Southern of Iran. This is a qualitative content analysis study using semi-structured and in-depth interviews with a purposive sampling of seventeen daughter and daughter in-law caregivers. The data revealed seven major themes including information and training, financial support, home health care assistance need, self-care support need, adjusting with the cultural obligation in providing care for a parent in-law, and need for improving quality of hospital care. Also, data from the interview showed that daughter and daughter in-law caregivers mostly used emotional-oriented coping strategies, specially religiosity, to cope with their needs and problems in their care-giving role. The results of this qualitative study revealed that family caregivers have several unmet needs in their care-giving role. By providing individualized information and support, we can prepare these family caregivers to better cope with the home care needs of stroke survivors and regain control over aspects of life.

Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

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Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van

2012-01-01

Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. Methods: A qualitative study, 13 caregivers participated in semi-structured interviews. Results: Professional caregiver support in

Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

NARCIS (Netherlands)

Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H.M. van

2012-01-01

OBJECTIVE: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. METHODS: A qualitative study, 13 caregivers participated in semi-structured interviews. RESULTS: Professional caregiver support in

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

OpenAIRE

Christian J. Hendriksz MD; Christine Lavery; Mahmut Coker MD; Sema Kalkan Ucar MD; Mohit Jain PhD; Lisa Bell PhD; Christina Lampe MD

2014-01-01

This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire) requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with fami...

Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

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Kate, N; Grover, S; Kulhara, P; Nehra, R

2013-06-01

OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of

Danger and dementia: caregiver experiences and shifting social roles during a highly active hurricane season.

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Christensen, Janelle J; Castañeda, Heide

2014-01-01

This study examined disaster preparedness and decision-making by caregivers of community-dwelling persons diagnosed with Alzheimer's or a related dementia (ADRD). Interviews were conducted with 20 caregivers in South Florida. Twelve of these interviews include caregiving experiences during the highly active 2004-2005 hurricane seasons. Results indicate that persons in earlier stages of ADRD can, and often do, remain engaged in the disaster preparation and planning process. However, during the early stages, persons may also resist evacuation, even if the caregiver felt it was necessary. During later stages of the disease, caregivers reported less resistance to disaster-related decisions, however, with the tradeoff of less ability to assist with preparation.

Emotional distress among caregivers of patients with epilepsy in ...

African Journals Online (AJOL)

Objective: Caregivers of patients with epilepsy experience considerable emotional distress. The study aimed to assess the magnitude of the problem in a developing country. Method: A total 166 patients-caregivers were enrolled for the study. They were interviewed using a socio-demographic data collecting sheet and the ...

Burnout and reactions to social comparison information among volunteer caregivers

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Van der Zee, K.I.; Bakker, A.B.; Buunk, Abraham (Bram)

2001-01-01

The present study focused on social comparison processes among volunteer caregivers of terminally ill patients in relation to burnout. First, caregivers' (N = 80) affective reactions to a bogus interview with fellow volunteer workers who were either coping better or worse were considered. Upward

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

OpenAIRE

Phillips, Sara S.; Ragas, Daiva M.; Hajjar, Nadia; Tom, Laura S.; Dong, XinQi; Simon, Melissa A.

2016-01-01

Our primary objective was to gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in re-entering the job market, offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, we explored whether training informal caregivers might help them transition into a paid caregiving or other health-service role. We interviewed 55...

Hong Kong Chinese daughters' intergenerational caregiving obligations: a cultural model approach.

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Holroyd, E

2001-11-01

This paper, based on a study carried out in Hong Kong, outlines the caregiving obligations of Hong Kong Chinese daughters towards their frail elderly parents. A cultural model approach drawn from cognitive anthropology is taken to focus on how Chinese caregiving daughters develop a sense of what is right and emotionally fulfilling and acquire the motivation to care for their parents. An ethnographic approach was used in the study and techniques included guided and open-ended interviews and non-participatory observations. A total of 20 co-residential caregiving daughters were interviewed in their homes on average twice over the course of one year. All interviews were conducted in Cantonese. Although the sample was small, daughters' accounts are structured by reference to cultural models and this structure provides the common basis for generalisability of results. Concepts of Confucian antecedents, reciprocity and personhood and other modern ideas of filial duty are explored. Conclusions are drawn about the shifting rights and obligations of Chinese caregiving daughters within the contemporary urban realities of Hong Kong. The findings of this study have relevance for the development of welfare policy for older Chinese persons and the chronically ill, and to all services involving women. The findings will also serve to inform family caregiver education programs.

Courtesy stigma: A concealed consternation among caregivers of people affected by leprosy.

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Dako-Gyeke, Mavis

2018-01-01

This study explored experiences of courtesy stigma among caregivers of people affected by leprosy. Using a qualitative research approach, twenty participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed objectives of the study. The findings indicated that caregivers of people affected by leprosy experienced courtesy stigma. Evidence showed that fear of contagion underpinned caregivers' experiences, especially in employment and romantic relationships. In addition, participants adopted different strategies (disregarding, concealment, education, faith-based trust) to handle courtesy stigma. The findings demonstrate that psychosocial support and financial assistance to caregivers are necessary considerations for attainment of effective care for people affected by leprosy. Copyright © 2017 Elsevier Ltd. All rights reserved.

Effects of leisure activities at home on perceived care burden and the endocrine system of caregivers of dementia patients: a randomized controlled study.

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Hirano, Akemi; Umegaki, Hiroyuki; Suzuki, Yusuke; Hayashi, Toshio; Kuzuya, Masafumi

2016-02-01

Psychological stress associated with caregiving is thought to underlie the high incidence of hypertension, ischemic heart disease, and mortality, as well as reduced immune function, among caregivers of dementia patients. Here, we examined the effects of periodic leisure activities performed by caregivers of dementia patients with care recipients at home on perceived care burden and levels of stress hormones. Participants were 42 caregivers aged ≥ 65 years of patients diagnosed with Alzheimer's dementia. They were randomly assigned to intervention and non-intervention groups. The intervention group underwent a leisure activity program (30 min/3 times/week for 24 weeks) with the care recipient, and the control group underwent normal care activities. The Zarit Burden Interview (ZBI) score, a subjective indicator of care burden, significantly decreased after intervention in the intervention group (p leisure activity on the neuroendocrine system. Our findings suggest that periodic leisure activities can reduce perceived care burden among caregivers of dementia patients. However, in order to evaluate accurately the effects of leisure activities of the present study, long-term follow-up of both caregivers and care recipients is necessary. The Nagoya University Department of Medicine Ethics Committee Clinical Trials Registry Number is 1290.

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options.

Science.gov (United States)

Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia; Tom, Laura S; Dong, XinQi; Simon, Melissa A

2016-01-01

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N=55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Agreement Between Teenager and Caregiver Responses to Questions About Teenager’s Asthma

OpenAIRE

Joseph, Christine L.M.; Havstad, Suzanne; Johnson, Christine C.; Vinuya, Rick; Ownby, Dennis R.

2006-01-01

It is unknown if teenagers and caregivers give similar responses when interviewed about the teen’s asthma. We analyzed data for 63 urban African-American teen-caregiver pairs. Caregivers underestimated teen smoking by 30%, gave lower estimates for teen exposure to passive smoke, and disagreed with teens on controller medication usage. Teen-caregiver responses were not significantly different for estimates of symptom-days, activity limitations, or nights awakened; nor were they significantly d...

Characteristics of the relationship that develops from nurse-caregiver communication during telecare.

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Solli, Hilde; Hvalvik, Sigrun; Bjørk, Ida Torunn; Hellesø, Ragnhild

2015-07-01

To explore the relationship between nurses and caregivers using a web camera and web forum as the communication methods. In Norway and other European countries, there is an increased focus on ageing at home, which is aided by technology, as well as formal and informal care. The literature reveals that caregivers endure physical and mental burdens. With computer-mediated communication, such as telecare, it is possible for nurses to provide supportive care to caregivers in their homes. An explorative design using qualitative content analysis. Six nurses and nine caregivers with residential spouses suffering from stroke or dementia were interviewed two times over a six-month period. The nurses responded dynamically to the information they received and helped to empower the individual caregivers and to strengthen the interpersonal relationships between the caregivers. While some participants thought that meeting in a virtual room was close and intimate, others wanted to maintain a certain distance. The participants' altered their roles as the masters and receivers of knowledge and experience; this variation was based on a relationship in which mutual respect for one another and an interest in learning from one another allowed them to work together as partners to demonstrate the system and to follow-up with new caregivers. The flexibility of the service allows the possibility of engaging in a close, or to some extent, a more distant relationship, depending on the participants' attitudes towards using this type of service. Nurses can provide close care, support and information to caregivers who endeavour to master their everyday lives together with their sick spouses. The support seems to help the caregivers cope with their own physical and emotional problems. © 2015 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors.

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Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork

2017-01-01

In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. "Meaning-focused coping" describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers' positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers' experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers' experiences and motivation in their caregiving role is explored. A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Family caregivers' roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their "relationship-oriented coping" and experience of meaning. Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers' own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase family caregivers' motivation to care by supporting their capacity to meet their own needs, cooperate and communicate with the person with dementia, and make competent and autonomous choices, thus increasing their feeling of mastery.

Agreement between teenager and caregiver responses to questions about teenager's asthma.

Science.gov (United States)

Joseph, Christine L M; Havstad, Suzanne; Johnson, Christine C; Vinuya, Rick; Ownby, Dennis R

2006-03-01

It is unknown if teenagers and caregivers give similar responses when interviewed about the teen's asthma. We analyzed data for 63 urban African-American teen-caregiver pairs. Caregivers underestimated teen smoking by 30%, gave lower estimates for teen exposure to passive smoke, and disagreed with teens on controller medication usage. Teen-caregiver responses were not significantly different for estimates of symptom-days, activity limitations, or nights awakened; nor were they significantly different for report of emergency department visits or hospitalizations. Agreement was weak for perceived asthma control and severity. Teen-caregiver agreement on asthma depends on the type of information being sought.

Validation of the Caregiver Guilt Questionnaire (CGQ) in a sample of British dementia caregivers.

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Roach, Louise; Laidlaw, Ken; Gillanders, David; Quinn, Kathryn

2013-12-01

Depression is well documented as a key outcome variable for dementia caregivers; however, guilt has been under-researched, which may be in part due to the lack of an appropriate measure. The Caregiver Guilt Questionnaire (CGQ) was originally developed and piloted with a Spanish population but has not yet been tested in an English-speaking population. A cross-sectional postal survey was undertaken with a sample of 221 dementia caregivers in the UK, as part of a larger study of dementia caregiver outcome measures. The five-factor structure identified for the CGQ in the Spanish sample was replicated in this study. The five factors, "guilt about doing wrong by the care recipient," "guilt about failing to meet the challenges of caregiving," 'guilt over experience of negative emotions in relation to caregiving," "guilt about self-care," and "guilt about neglecting other relatives" accounted for 60% of the variance. Internal consistencies for the whole scale and factors were acceptable, and convergent validity was established with the Zarit Burden Interview guilt factor. A higher score on the CGQ was associated with a higher score on the Center for Epidemiological Studies Depression scale (CES-D) and a new cut-off score of 22 was established, which predicted a clinical score on the CES-D with 80.0% sensitivity and 61.5% specificity. The replication of the five-factor structure suggests that these are relevant themes within the feelings of guilt to both Hispanic and British dementia caregivers. The CGQ has been demonstrated to be a valid measure for use with British dementia caregivers and is likely to be of use in clinical and research settings.

Caregiver burden among relatives of patients with schizophrenia in Katsina, Nigeria

Directory of Open Access Journals (Sweden)

Abdulkareem Jika Yusuf

2009-06-01

Full Text Available Objective: Caring for patients’ with schizophrenia leads to an enormous burden on the caregivers. However, the magnitude of this problem remains largely unknown in Sub-Saharan Africa. The objective of this study was to determine the burden of care giving among relatives of patients with schizophrenia. Materials and method: A total of 129 primary care-givers of patients with schizophrenia attending out-patient clinic of Katsina state Psychiatric Hospital were interviewed using a socio-demographic data collection sheet and Zarith Burden Interview (ZBI. Data obtained was analysed using Statistical Package for Social Sciences version 13. Results: The mean age of the respondents was 45.07±8.91. Majority of the caregivers are females. High level of burden was found in 47.3% of the respondents. The level of burden experienced was significantly associated with place of residence and family size. Conclusion: Schizophrenia is associated with high level of caregiver burden and effort should be made at alleviating this burden for better out come in both the patients and caregivers.

Concept Analysis: Alzheimer's Caregiver Stress.

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Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Caserta, Michael

2016-01-01

The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer's disease and related dementias. Currently, there are more than 15 million unpaid caregivers for persons suffering from Alzheimer's disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. The paper incorporates the modified method of Wilson's concept analysis procedure to analyze the concept of caregiver stress. A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. © 2014 Wiley Periodicals, Inc.

Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

Science.gov (United States)

Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

2013-07-01

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.

Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

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LaValley, Susan A; Gage-Bouchard, Elizabeth A

2018-04-01

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

Imagining the Future: Perspectives Among Youth and Caregivers in the Trans Youth Family Study

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Katz-Wise, Sabra L.; Budge, Stephanie L.; Orovecz, Joe J.; Nguyen, Bradford; Nava-Coulter, Brett; Thomson, Katharine

2016-01-01

Future perspectives of transgender youth and their caregivers may be shaped by knowledge of discrimination and adverse mental health among transgender adults. Qualitative data from the Trans Youth Family Study were used to examine how transgender and gender nonconforming (TGN) youth and their caregivers imagine the youth's future. A community-based sample of 16 families (16 TGN youth, ages 7-18 years, and 29 caregivers) was recruited from two regions in the United States. Participants completed in-person qualitative interviews and surveys. Interview transcripts were analyzed using grounded theory methodology for coding procedures. Analyses yielded 104 higher order themes across 45 interviews, with eight prominent themes: comparing experiences with others, gender affirming hormones, gender affirming surgery, gender norms, questioning whether the youth is really transgender, expectations for romantic relationships, uncertainty about the future, and worries about physical and emotional safety. A conceptual model of future perspectives in TGN youth and caregivers is presented and clinical implications are discussed. PMID:28068129

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

Science.gov (United States)

White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James

2018-01-01

There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and

Coping With Cleft: A Conceptual Framework of Caregiver Responses to Nasoalveolar Molding.

Science.gov (United States)

Sischo, Lacey; Broder, Hillary L; Phillips, Ceib

2015-11-01

To present a conceptual framework of caregiver coping and adaptation to early cleft care using nasoalveolar molding. In-depth interviews were conducted at three time points with caregivers of infants with cleft lip or cleft lip and palate whose children had nasoalveolar molding to treat their cleft. Qualitative data were analyzed using modified grounded theory. Most caregivers expressed initial apprehension and anxiety about the responsibilities of care associated with nasoalveolar molding (e.g., changing and positioning tapes, cleaning the appliance). In subsequent interviews, caregivers often reported positive feelings related to their active participation in their child's treatment for cleft. These positive feelings were associated with increased self-esteem and feelings of empowerment for the caregivers. Although caregivers also identified burdens associated with nasoalveolar molding (e.g., stress related to lip taping, concerns about the appliance causing sores in their child's mouth, travel to weekly appointments), they tended to minimize the impact of these issues in comparison with the perceived benefits of nasoalveolar molding. Despite the increased burden of care, many caregivers of infants with cleft used nasoalveolar molding as a problem-focused coping strategy to deal with their child's cleft. Completing nasoalveolar molding was often associated with positive factors such as increased empowerment, self-esteem, and bonding with their infant.

Caregiver burden in atypical dementias: comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer's disease.

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Uflacker, Alice; Edmondson, Mary C; Onyike, Chiadi U; Appleby, Brian S

2016-02-01

Caregiver burden is a significant issue in the treatment of dementia and a known contributor to institutionalization of patients with dementia. Published data have documented increased caregiver burden in behavioral variant frontotemporal dementia (bvFTD) compared to Alzheimer's disease (AD). Another atypical dementia with high-perceived caregiver burden is sporadic Creutzfeldt-Jakob disease (sCJD), but no formal studies have assessed this perception. The aim of this study was to compare caregiver burden across atypical dementia etiologies. 76 adults with atypical dementia (young-onset AD [YOAD], bvFTD, language variant FTD [lvFTD], and sCJD) were administered an abbreviated version of the Zarit Burden Interview (ZBI), Neuropsychiatric Inventory (NPI-Q), and other assessment instruments during a five-year time period at Johns Hopkins Hospital (JHH). A Cox regression model examined differences between disease categories that impact mean ZBI scores. Mean ZBI scores were significantly different between dementia etiologies, with bvFTD and sCJD having the highest caregiver burden (p = 0.026). Mean NPI-Q caregiver distress scores were highest in bvFTD and sCJD (p = 0.002), with sCJD and bvFTD also having the highest number of endorsed symptom domains (p = 0.012). On regression analyses, an interactive variable combining final diagnosis category and NPI-Q total severity score demonstrated statistically significant differences in mean ZBI scores for sCJD and bvFTD. This study demonstrates that bvFTD and sCJD have increased levels of caregiver burden, NPI-Q caregiver distress, total severity scores, and number of endorsed symptom domains. These results suggest that higher caregiver burden in bvFTD and sCJD are disease specific and possibly related to neuropsychiatric symptoms.

Information needs of neuro-oncology patients and their caregivers: a pilot study

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Khryshchuk, Olga

2012-07-01

Full Text Available BACKGROUND: Patients with primary brain tumors (PBT often have acute depression, anxiety and complications of social adaptation. The goal of this study was to examine difficulties and information needs of patients with PBT and their caregivers during diagnostic and treatment period. METHODS: Thirteen in-depth interviews were conducted with convenience sample of nine patients and four caregivers who were under treatment in the Kyiv “Feofaniya” clinic in October 2011 – April 2012. Convenience strategy was used because of poor availability of the target group. Data collection was stopped when saturation was achieved.RESULTS: PBT patients and their caregivers need information about diagnosis and prognosis, while uncertainty about the future is increased due to a long diagnostic period and delayed contacts with neuro-oncology professionals. In making decision, patients rely on the doctors, which confirms the paternalistic relationships. Most patients avoid talking about their feelings with the family and tend to deny the change of roles in the family due to illness. Those who consider chances of recovery as high express need for psychological support, but those who are emotionally suppressed and scared, don’t want to discuss their state with professionals. Caregivers also experience increased responsibility and fear about the future. Possibly, religious patients have lower information needs and willingness to discuss the disease and its treatment with the doctor. CONCLUSIONS: During the diagnostics patients face problems of uncertainty regarding the diagnosis, the availability of appropriate health professional, and the treatment strategy. Communication with doctor and quality of information provided to the patient is important as well as professional psychological support for patients and their caregivers. Limitations of the study include poor sample strategy, all participants were recruited from a single clinic, which is not the typical for

Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology

NARCIS (Netherlands)

Exel, J.; de Graaf, G.; Brouwer, W.

2007-01-01

Objective: To investigate informal caregivers' attitudes toward respite care. Method: Interviews with informal caregivers during open-house support groups (three) for informal caregivers, conducted late 2004 at Informal Care Support Centres in the city of Rotterdam, The Netherlands. A

Students meeting with caregivers of cancer patient: results of an experience-based learning project.

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Atasoy, Beste M; Sarikaya, Ozlem; Kuscu, M Kemal; Yondem, Merve; Buyukkara, Elif; Eken, E Gokcen; Kahyaoglu, Figen

2012-12-01

The communication between medical students and cancer caregivers, and the problems they have experienced as well as the outcomes for their professional development before starting clinical practice was assessed in the context of a student research project. Data were collected by questionnaires or by 20 to 40-min long interviews with cancer caregivers. Their communications with physicians, hearing the bad news, and health service satisfaction were questioned. Therefore, the caregivers trusted the professional approach of their physician. However, they expected more empathic communication in the process of diagnosis and therapy. Development of empathy and trust-based communication between patients and physicians and enhancement of the quality of devoted time to cancer patients and caregivers may have an effect on the course of disease. Interviewer students mentioned that they developed communication skills about difficult clinical tasks and in delivering bad news face to face to cancer caregivers before starting their clinical education.

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

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Christian J. Hendriksz MD

2014-07-01

Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.

Family Caregiver Uplift and Burden: Associations with Aggressive Behavior in Adults with Intellectual Disability

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Unwin, Gemma; Deb, Shoumitro

2011-01-01

The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and…

How Do Family Caregivers Describe Their Needs for Professional Help?

Science.gov (United States)

Yedidia, Michael J.; Tiedemann, Amy

2008-01-01

How aligned are the needs of family caregivers with the professional supports available to them? This article presents the results of the first phase of a study, in which four focus group interviews were conducted with a total of 40 family caregivers to elicit their views of the kinds of assistance they expect from nurses and social workers. The…

A qualitative study of caregivers' expectations and communication desires during medical consultation for sick children in Uganda.

Science.gov (United States)

Kiguli, Sarah; Mafigiri, David; Nakigudde, Janet; van Dalen, Jan; van der Vleuten, Cees

2011-08-01

Little data exist on patients' expectations and communication desires during medical consultation in Non-Western settings. We conducted a qualitative study to compare expectations and communication desires of sick children's caregivers at Mulago Hospital, Uganda, to those of patients in Western countries. Three Focus Group Interviews and three Key Informant Interviews were conducted with 24 caregivers of sick children in Mulago Hospital Kampala, Uganda. An interview guide adapted from the Calgary-Cambridge Guide was used to conduct focus group and Key Informant Interviews. Two investigators worked independently to review transcripts and analyse them for content and emerging themes. Caregivers of sick children in Mulago Hospital expect attending doctors to build a relationship with them, by demonstrating the verbal and nonverbal skills outlined in the CCG including maintaining eye contact, using appropriate gestures and voice during communication, and being nonjudgmental. The communication needs and expectations of caregivers of sick children in Mulago Hospital are similar to those of patients and caregivers in Western countries. The CCG can be used as a training guide to enhance the communication skills of current and future doctors in Mulago Hospital. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.

Living With Dementia: An Exploratory Study of Caregiving in a Chinese Family Context.

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Wong, Oi Ling; Kwong, Ping Sum; Ho, Candis Ka Yan; Chow, Susanna Miu Yee; Kwok, Timothy; Wong, Bel; Ho, Vennus; Lau, Andrew; Ho, Florence

2015-01-01

This qualitative study explored themes that described families taking care of elderly relatives with dementia in Chinese society. Ten families were invited for two in-depth family interviews involving spousal caregivers, child caregivers, and care recipients. Five themes resulted: positive affection as coping strategies, power and control in the caregiving relationship, adult children's involvement in caregiving, sibling rivalry, and intergenerational conflicts. The ways these themes functioned and helped in dementia care, the research implications, and limitations are discussed.

Emotional Labour of Caregivers Confronted With Aggressive Brain-injured Patients.

Science.gov (United States)

Huet, Magali; Dany, Lionel; Apostolidis, Thémistoklis

2018-06-01

Aggressive behaviours are common with people who have suffered brain injuries and induce difficult emotions among certified nursing assistants and medical-psychological assistants who take care of them. These caregivers carry out emotional labour whose content and strategies are little known. The study explores the emotional labour of certified nursing assistants and medical-psychological assistants faced with the aggressive behaviours of brain-injured patients. Semi-structured interviews were conducted with 37 caregivers. Interviews were analysed via a thematic content analysis. The analysis shows that the emotional labour of caregivers varies in accordance with the state of "consciousness" or "non-consciousness" that they attribute to the brain-injured patient with regard to this aggressive behaviour. This is a deep acting strategy. Moreover, caregivers shut off their emotions in order not to transmit them to the patient. This surface acting has the first objective for the caregiver of maintaining control of the situation and a second objective of protecting the patient emotionally and therefore of being perceived as a "good" caregiver. Emotional labour also meets a need to preserve the professional self-image and professional status negatively affected in the interaction with the aggressive brain-injured patient. Our study specifies the different strategies of the emotional labour of caregivers and their circumstances of use when they are confronted with aggressive behaviour by brain-injured patients. Targeted support for this emotional labour, such as training and practical analysis, is essential for the development of care practices promoting a caring relationship. Copyright © 2017 Elsevier Inc. All rights reserved.

[Ressignification of life of caregivers of elderly patients with cancer].

Science.gov (United States)

dos Anjos, Anna Cláudia Yokoyama; Zago, Márcia Maria Fontão

2014-01-01

The study aimed to analyze the process of becoming a caregiver of elderly patients with cancer, in chemotherapy, in the home context. This is an exploratory study with theoretical and methodological orientation of interpretative anthropology and ethnographic case study. Data were collected from January to September 2009, with four caregivers through semi-structured interviews, observation and consultation records. With data analysis were built four units of meaning. In this paper 'we are focusing the thematic unity "The ressignification of caregiver's life", composed by positive aspects of caregiving activities and of helping to overcome difficulties, such as union, solidarity, opportunity for reapproximation. The difficulties were more evident, especially being unprepared to care at home, which led to changes in the caregiver's familiar and social relationships, resulting in impairment of physical, emotional and social aspects. The nurse, as an agent of care, must provide adequate qualification to the caregivers, helping them in coping with the disease and improving the patient-caregiver-service relationship.

A Qualitative Study of Family Caregiver Experiences of Managing Incontinence in Stroke Survivors.

Directory of Open Access Journals (Sweden)

Chien-Ning Tseng

Full Text Available Incontinence is a common problem faced by family caregivers that is recognized as a major burden and predictor of institutionalization. However, few studies have evaluated the experiences of family caregivers caring for stroke survivors with incontinence.To describe experiences of caregivers managing incontinence in stroke survivors.This qualitative descriptive study employed a grounded-theory approach.Semi-structured in-depth interviews with ten family caregivers of stroke survivors with incontinence were conducted during 2011. Audiotaped interviews were transcribed and analyzed using content analysis.Data analysis identified four themes: chaos, hypervigilance, exhaustion, and creating a new life. There were nine related subcategories: fluster, dirtiness, urgency, fear of potential health-hazard, physically demanding and time-consuming, mentally draining, financial burden, learning by doing, and attitude adjustment. Together, these described a process of struggling to cope with the care of stroke survivors with urinary/fecal incontinence. Of the four categories, "creating a new life" developed gradually over time to orient caregivers to their new life, while the other three categories occurred in a chronological order.The research highlighted unique caring experiences of family caregivers of stroke patients, which focused solely on the 'incontinence issue'. Understanding these experiences may help nurses provide better support and resources for family caregivers when caring for stroke survivors with incontinence.

Identifying Sociodemographic Characteristics Associated With Burden Among Caregivers of the Urban Homebound

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Ania Wajnberg MD

2016-09-01

Full Text Available Limited research has explored whether the burden associated with caring for homebound patients varies across racial groups or by relationship status. We examined these variations for this vulnerable population. Patients self-identified informal caregivers and caregiver burden/depression were assessed using the Zarit Caregiver Burden Scale and the Center for Epidemiologic Studies–Depression scale (CES-D. Forty-nine informal caregivers completed the interview. Mean age was 58 ( SD = 14, 78% were female, 37% Black, 35% Hispanic, and 46% had completed high school. Over 60% of caregivers had moderate or severe caregiver burden and 30% had significant depression. White caregivers had greater burden than Black and Hispanic caregivers ( p = .02. Mean caregiver burden was higher among spouse/partner caregivers, versus those who identified as children or other family or friends ( p = .004. Additional research is needed to better understand the experience of racial and ethnic minorities and spouses in providing informal care to homebound adults.

Treatment motivation among caregivers and adolescents with substance use disorders.

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Cornelius, T; Earnshaw, V A; Menino, D; Bogart, L M; Levy, S

2017-04-01

Substance use disorders (SUDs) in adolescence have negative long-term health effects, which can be mitigated through successful treatment. Caregivers play a central role in adolescent treatment involvement; however, studies have not examined treatment motivation and pressures to enter treatment in caregiver/adolescent dyads. Research suggests that internally motivated treatment (in contrast to coerced treatment) tends to lead to better outcomes. We used Self-determination theory (SDT) to examine intersecting motivational narratives among caregivers and adolescents in SUD treatment. Relationships between motivation, interpretation of caregiver pressures, adolescent autonomy, and relatedness were also explored. Adolescents in SUD treatment and their caregivers (N Dyads =15) were interviewed about treatment experiences. Interviews were coded for treatment motivation, including extrinsic (e.g., motivated by punishment), introjected (e.g., motivated by guilt), and identified/integrated motivation (e.g., seeing a behavior as integral to the self). Internalization of treatment motivation, autonomy support/competence (e.g., caregiver support for adolescent decisions), and relatedness (e.g., acceptance and support) were also coded. Four dyadic categories were identified: agreement that treatment was motivated by the adolescent (intrinsic); agreement that treatment was motivated by the caregiver (extrinsic); agreement that treatment was motivated by both, or a shift towards adolescent control (mixed/transitional); and disagreement (adolescents and caregivers each claimed they motivated treatment; conflicting). Autonomy support and relatedness were most prominent in intrinsic dyads, and least prominent in extrinsic dyads. The mixed/transitional group was also high in autonomy support and relatedness. The extrinsic group characterized caregiver rules as an unwelcome mechanism for behavioral control; caregivers in the other groups saw rules as a way to build adolescent

Psychosocial impact of early onset dementia among caregivers.

Science.gov (United States)

Kimura, Nathália R S; Maffioletti, Virgínia L R; Santos, Raquel L; Baptista, Maria Alice Tourinho; Dourado, Marcia C N

2015-01-01

There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. To analyze the psychosocial impact of EOD in family caregivers. The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

Agreement Between Teenager and Caregiver Responses to Questions About Teenager’s Asthma

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Joseph, Christine L.M.; Havstad, Suzanne; Johnson, Christine C.; Vinuya, Rick; Ownby, Dennis R.

2007-01-01

It is unknown if teenagers and caregivers give similar responses when interviewed about the teen’s asthma. We analyzed data for 63 urban African-American teen-caregiver pairs. Caregivers underestimated teen smoking by 30%, gave lower estimates for teen exposure to passive smoke, and disagreed with teens on controller medication usage. Teen-caregiver responses were not significantly different for estimates of symptom-days, activity limitations, or nights awakened; nor were they significantly different for report of emergency department visits or hospitalizations. Agreement was weak for perceived asthma control and severity. Teen-caregiver agreement on asthma depends on the type of information being sought. PMID:16517427

Health self-perception by dementia family caregivers: sociodemographic and clinical factors

Directory of Open Access Journals (Sweden)

Letice Ericeira Valente

2011-10-01

Full Text Available Caring for a demented family member has been associated with burden. Studies concerning health self-perception of family caregivers are still scarce. OBJECTIVE: To investigate caregivers perceived health and to look into relationships with patients and caregivers' sociodemographic and clinical data. METHOD: Dyads of dementia outpatients and family caregivers (n=137 were assessed with Mini Mental State Examination, Functional Activities Questionnaire, Neuropsychiatric Inventory and Clinical Dementia Rating. Caregivers answered Sociodemographic Questionnaire, Beck Depression and Anxiety Inventories, Zarit Burden Interview and Maslach Burnout Inventory. RESULTS: Caregivers poor perceived health was associated with emotional exhaustion, burden, depression and anxiety. Logistic regression analyses revealed caregivers' age, anxiety and physical problem as the main predictors of health self-perception. CONCLUSION: Aged family caregivers with anxiety who also report physical problem characterize a group at risk for poor self-perceived health. Evaluation of health self-perception may be useful for designing interventions to improve anxiety and physical health.

"Mad or bad?": burden on caregivers of patients with personality disorders.

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Bauer, Rita; Döring, Antje; Schmidt, Tanja; Spießl, Hermann

2012-12-01

The burden on caregivers of patients with personality disorders is often greatly underestimated or completely disregarded. Possibilities for caregiver support have rarely been assessed. Thirty interviews were conducted with caregivers of such patients to assess illness-related burden. Responses were analyzed with a mixed method of qualitative and quantitative analysis in a sequential design. Patient and caregiver data, including sociodemographic and disease-related variables, were evaluated with regression analysis and regression trees. Caregiver statements (n = 404) were summarized into 44 global statements. The most frequent global statements were worries about the burden on other family members (70.0%), poor cooperation with clinical centers and other institutions (60.0%), financial burden (56.7%), worry about the patient's future (53.3%), and dissatisfaction with the patient's treatment and rehabilitation (53.3%). Linear regression and regression tree analysis identified predictors for more burdened caregivers. Caregivers of patients with personality disorders experience a variety of burdens, some disorder specific. Yet these caregivers often receive little attention or support.

Relationships between family resilience and posttraumatic growth in breast cancer survivors and caregiver burden.

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Liu, Ye; Li, Yuli; Chen, Lijun; Li, Yurong; Qi, Weiye; Yu, Li

2018-04-01

To examine the relationships between family resilience and posttraumatic growth (PTG) of breast cancer survivors and caregiver burden among principal caregivers in China. Participants in this cross-sectional study comprised 108 women aged 26 to 74 years (M = 49, SD = 9) with early-stage breast cancer and 108 principal caregivers. Participants were recruited from a comprehensive cancer center of a public hospital in Shandong Province, China. The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview; patients completed the Short Form of the Posttraumatic Growth Inventory and questions designed to obtain sociodemographic information. Hierarchical regression analysis was conducted to assess the adjusted association between family resilience and PTG and caregiver burden, while controlling for sociodemographics. Families showed a slightly elevated level of family resilience since the cancer experience, and patients showed a moderate degree of PTG. Principal caregivers reported moderate burden. The Shortened Chinese Version of the Family Resilience Assessment Scale total score was positively related to the Short Form of the Posttraumatic Growth Inventory total score (β = .28, P Caregiver Burden Interview total score (β = -.28, P resilience impacts PTG of breast cancer survivors and caregiver burden. Our findings indicated the necessity of interventions to facilitate family resilience, promote PTG among breast cancer survivors, and decrease family members' caregiver burden. Copyright © 2018 John Wiley & Sons, Ltd.

Religious and Spiritual Dimensions of the Vietnamese Dementia Caregiving Experience

Science.gov (United States)

Hinton, Ladson; Tran, Jane NhaUyen; Tran, Cindy; Hinton, Devon

2010-01-01

This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key terms or idioms were used to articulate spiritual/religious dimensions of the caregivers’ experience, which included sacrifice, compassion, karma, blessings, grace and peace of mind. In their narratives, the caregivers often combined multiple strands of different religions and/or spiritualities: Animism, Buddhism, Taoism, Confucianism and Catholicism. Case studies are presented to illustrate the relationship between religion/spirituality and the domains of caregiving. These findings have relevance for psychotherapeutic interventions with ethnically diverse populations. PMID:20930949

Patterns of caregiver experiences among partners of cancer patients

NARCIS (Netherlands)

Nijboer, C; Triemstra, M; Mulder, M; Sanderman, R; van den Bos, GAM

2000-01-01

This study describes patterns of caregiving experiences in partners of patients with cancer (N=148) over a 6-month period. Caregiving experiences were assessed by means of the Caregiver Reaction Assessment Scale (CRA), which consists of four negative dimensions and one positive subscale: Disrupted

[Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers].

Science.gov (United States)

Costa, Xavier; Gómez-Batiste, Xavier; Pla, Margarida; Martínez-Muñoz, Marisa; Blay, Carles; Vila, Laura

2016-12-01

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 © 2016 Elsevier España, S.L.U. All rights reserved.

Bereaved Caregivers to Patients With High-Grade Glioma

DEFF Research Database (Denmark)

Piil, Karin; Jarden, Mary

2018-01-01

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....

The Impact of Child Sexual Abuse Discovery on Caregivers and Families: A Qualitative Study.

Science.gov (United States)

Fong, Hiu-Fai; Bennett, Colleen E; Mondestin, Valerie; Scribano, Philip V; Mollen, Cynthia; Wood, Joanne N

2017-06-01

In this qualitative study with nonoffending caregivers of suspected child sexual abuse victims, we aimed to explore the perceived impact of sexual abuse discovery on caregivers and their families, and caregivers' attitudes about mental health services for themselves. We conducted semistructured, in-person interviews with 22 nonoffending caregivers of suspected sexual abuse victims <13 years old seen at a child advocacy center in Philadelphia. Interviews were audio-recorded, transcribed, coded, and analyzed using modified grounded theory. Recruitment continued until thematic saturation was reached. We found that caregivers experienced significant emotional and psychological distress, characterized by anger, depressed mood, and guilt, after learning that their child may have been sexually abused. We identified four specific sources of caregiver distress: concerns about their child, negative beliefs about their parenting abilities, family members' actions and behaviors, and memories of their own past maltreatment experiences. Some caregivers described worsening family relationships after discovery of their child's sexual abuse, while others reported increased family cohesion. Finally, we found that most caregivers in this study believed that mental health services for themselves were necessary or beneficial to help them cope with the impact of their child's sexual abuse. These results highlight the need for professionals working with families affected by sexual abuse to assess the emotional and psychological needs of nonoffending caregivers and offer mental health services. Helping caregivers link to mental health services, tailored to their unique needs after sexual abuse discovery, may be an acceptable strategy to improve caregiver and child outcomes after sexual abuse.

Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress.

NARCIS (Netherlands)

Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van

2008-01-01

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'

Effects of the situational context and interactional process on the quality of family caregiving.

Science.gov (United States)

Phillips, L R; Morrison, E; Steffl, B; Chae, Y M; Cromwell, S L; Russell, C K

1995-06-01

A staged theoretical model designed to explain the quality of elder caring by family members was tested. The model posits how the situational context, interactional process, and caregiving burden perceived by the caregiver affect the quality of elder caring. The purpose was to determine the amount of variance explained by the interactional process beyond that explained by the situational context and caregiving burden. Data were collected from 209 elder-caregiver dyads using interviews, observations, and caregiver self-reports. The strongest predictors of caregiving burden were the caregiver's stressful negative life events (situational context) and discrepancy between past and present image of elder (interactional process). The strongest predictors of quality of elder caring were the caregiver's perception of subjective burden and a monitoring role definition on the part of the caregiver (interactional process).

Caring for terminal AIDS patients: The experiences of caregivers in ...

African Journals Online (AJOL)

13 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 ...

Parents' and caregivers' experiences and behaviours when eating out with children with a food hypersensitivity.

Science.gov (United States)

Begen, Fiona M; Barnett, Julie; Barber, Miriam; Payne, Ros; Gowland, M Hazel; Lucas, Jane S

2017-07-20

For parents and caregivers of food hypersensitive (FH) children, accommodating their child's dietary needs when eating out can be a challenging experience. This study explored caregivers' experiences and behaviours when eating out with their FH child in order to gain insights into how they support and prepare their child in negotiating safe eating out experiences. A cross-sectional, qualitative design was used. In depth, semi-structured interviews were carried out with 15 caregivers of children with FH. Interviews were analysed using framework analysis. Caregivers reported a number of issues relating to eating out with their FH child, or allowing their child to eat out without their supervision. Through themes of 'family context', 'child-focused concerns', and 'venue issues', caregivers described how they managed these and explained the limitations and sacrifices that FH imposed on their child, themselves, and family members. Through deeper understanding of the anxieties, negotiations and compromises experienced by caregivers of children with FH when they are eating out, clinicians and support charities can tailor their support to meet the needs of caregivers and children. Support and education provision should focus on providing caregivers of children with FH the tools and strategies to help enable safe eating out experiences.

Double Bind: Primary Caregivers of Children with Special Health Care Needs and Their Access to Leave Benefits

Science.gov (United States)

Chung, Paul J.; Garfield, Craig F.; Elliott, Marc N.; Vestal, Katherine D.; Klein, David J.; Schuster, Mark A.

2013-01-01

Objective Family leave benefits are a critical tool allowing parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). Methods We conducted telephone interviews with three successive cohorts of employed parents of CSHCN, randomly sampled from a California children’s hospital. At Wave 1 (November 2003 to January 2004) we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006) we conducted 396 parent interviews. At Wave 3 (November 2007 to December 2008) we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses, using wave indicators and sample weights. Results Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs. 82%, Ppaid leave outside of sick leave/vacation (41% vs. 51%, Pleave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child’s illness and to report being unable to miss work when they needed to. Conclusions Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve health for CSHCN and their families. PMID:23477748

Meaning creation and employee engagement in home health caregivers.

Science.gov (United States)

Nielsen, Mette Strange; Jørgensen, Frances

2016-03-01

The purpose of this study is to contribute to an understanding on how home health caregivers experience engagement in their work, and specifically, how aspects of home healthcare work create meaning associated with employee engagement. Although much research on engagement has been conducted, little has addressed how individual differences such as worker orientation influence engagement, or how engagement is experienced within a caregiving context. The study is based on a qualitative study in two home homecare organisations in Denmark using a think-aloud data technique, interviews and observations. The analysis suggests caregivers experience meaning in three relatively distinct ways, depending on their work orientation. Specifically, the nature of engagement varies across caregivers oriented towards being 'nurturers', 'professionals', or 'workers', and the sources of engagement differ for each of these types of caregivers. The article contributes by (i) advancing our theoretical understanding of employee engagement by emphasising meaning creation and (ii) identifying factors that influence meaning creation and engagement of home health caregivers, which should consequently affect the quality of services provided home healthcare patients. © 2015 Nordic College of Caring Science.

Caregiver coping with the mentally ill: a qualitative study.

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Azman, Azlinda; Jamir Singh, Paramjit Singh; Sulaiman, Jamalludin

2017-04-01

Mental illness is a disease that affects millions of people every year. It not only causes stress to the mentally ill patients, but also for the family members who provide them the care. The family caregivers, therefore need some form of coping strategies in dealing with their mentally ill family members. This qualitative study aims at identifying and analysing the coping strategies adopted by the family caregivers in dealing with their mentally ill family members. A total of 15 family caregivers from the state of Kedah, Malaysia participated in the face-to-face semi structured interview. The study findings identified an array of coping strategies used by the family caregivers, including religious coping, emotional coping, acceptance, becoming engaged in leisure activities, and the use of traditional healing to help them cope with their mentally ill members. Suggestions and conclusions: Study suggests that the family caregivers should engage themselves in social support groups to learn about and obtain the positive coping strategies used by other caregivers who have similar experiences in caring for the mentally ill. Study also suggests that they should get appropriate training from the mental health professionals in order to enhance the caregivers' coping skills.

Psychosocial impact of early onset dementia among caregivers

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Nathália R. S. Kimura

2015-12-01

Full Text Available Introduction: There is growing recognition of early onset dementia (EOD as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

Older and Younger Family Caregivers of Adults with Intellectual Disability: Factors Associated with Future Plans

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Chou, Yueh-Ching; Lee, Yue-Chune; Lin, Li-Chan; Kroger, Teppo; Chang, Ai-Ning

2009-01-01

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

Recruiting Dementia Caregivers Into Clinical Trials: Lessons Learnt From the Australian TRANSCENDENT Trial.

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Leach, Matthew J; Ziaian, Tahereh; Francis, Andrew; Agnew, Tamara

2016-01-01

The burden on those caring for a person with dementia is substantial. Although quality research assists in addressing the needs of these caregivers, recruiting caregivers into clinical studies is often problematic. This investigation explores the difficulties and successes in recruiting dementia caregivers into community-based clinical research by reporting the findings of a mixed-method substudy of a multicenter randomized controlled trial involving 40 community-dwelling dementia caregivers living in Adelaide, South Australia. Data for the substudy were derived from standardized trial monitoring documentation and structured telephone interviews. From a total of 16 distinct methods used across a 12-month recruitment campaign, the most cost-effective strategy was the distribution of flyers through a single study site. This approach generated the greatest number of enrollments of all methods used, achieving a 67% recruitment yield. The least cost-effective strategy, with a 0% recruitment yield, was the publication of a newspaper advertisement. Themes that emerged from the interviews pointed toward 5 key facilitators and 3 barriers to future trial recruitment. This study has generated new insights into the effective recruitment of dementia caregivers into clinical trials. We anticipate that these lessons learnt will assist in shaping the recruitment strategies of future studies of dementia caregivers.

The effect of motivational interviewing on oral healthcare knowledge, attitudes and behaviour of parents and caregivers of preschool children: an exploratory cluster randomised controlled study.

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Naidu, Rahul; Nunn, June; Irwin, Jennifer D

2015-09-02

Motivational Interviewing (MI) has been used across primary healthcare and been shown to be effective in reducing the prevalence of early childhood caries (ECC) in preschool children. This study aimed to compare the effect of MI, in contrast to traditional dental health education (DHE), on oral health knowledge, attitudes, beliefs and behaviours among parents and caregivers of preschool children in Trinidad. The design of this exploratory study included a cluster randomised controlled trial and semi-structured focus groups. Six preschools (79 parents and caregivers) in Eastern Trinidad were randomly assigned to a test or control group (3 preschools in each group). Parents and caregivers in the test-group (n = 25) received a talk on dental health using an MI approach and the control-group (n = 54) received a talk using traditional DHE. Both groups received additional, written dental health information. The MI group also received two telephone call follow-ups as part of the MI protocol. Both groups were given questionnaires before the talks and four months later. Question items included oral health knowledge, beliefs, attitudes, brushing behaviour, oral health self-efficacy, oral health fatalism and a specific instrument to asses 'readiness for change', the Readiness Assessment of Parents Concerning Infant Dental Decay (RAPIDD). Participants in the test-group were also invited to take part in a focus group to share their views on the dental health talk. At four month follow-up, knowledge items on fluoride use, tooth brushing, dietary practice and dental attendance increased in both the test (DHE + MI) and control (DHE) groups ((p oral health fatalism (p parent and caregiver efforts to improve oral health practices for their preschool children. In this exploratory controlled study there was some evidence that using an MI approach when delivering oral health information had a positive effect on parent/ caregiver oral health knowledge, attitudes and behaviours compared

Video Game Addiction and Life Style Changes: Implications for Caregivers Burden.

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Sharma, Manoj Kumar

2016-01-01

Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users.

A study on caregiver burden: stressors, challenges, and possible solutions.

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Bialon, Laura Nelson; Coke, Sallie

2012-05-01

The purpose of this qualitative study was to explore factors impacting caregiver burden and to explore possible solutions for family caregivers of terminally ill patients. The majority of caregivers reported experiencing role conflict and inadequate stress management. Caregivers who worked outside the home, those who cared for two parents concurrently, those with the least amount of outside assistance, and caregivers who spent a longer period of time caregiving reported the highest levels of health problems and overall burden. Caregivers stated a need for more support from Hospice agencies, more education on caregiver training, and more public education about Hospice services. Faith played a positive role in alleviating caregiver burden. Early identification, intervention, education and coordination of services may help to alleviate caregiver burden, which will improve quality of life for both patient and caregiver.

A Group Therapeutic Songwriting Intervention for Family Caregivers of People Living With Dementia: A Feasibility Study With Thematic Analysis.

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Baker, Felicity A; Stretton-Smith, Phoebe; Clark, Imogen N; Tamplin, Jeanette; Lee, Young-Eun C

2018-01-01

This study aimed to test the feasibility of implementing a group songwriting program with family caregivers (FCGs) of people living with dementia. Fourteen FCGs consented to participate in either the songwriting group ( n = 8) or control condition ( n = 6). Participants completed baseline and 7-week measures of depression (PHQ-9), perceptions of their caregiving experience (PACQ), and perceptions of their relationship with the care recipient (QCPR). A six-session group songwriting program was implemented across two sites, focusing on participants co-creating a song about their caregiving experiences. Participation and retention rates were high suggesting the intervention was acceptable. An observed pre-post effect size for the PHQ-9 in the experimental group ( d = 0.64) and control group ( d = -0.33) suggests the measure is sensitive to change over a short period of time in this population and has the potential to detect significant change in a larger controlled trial. Qualitative analysis of focus group interviews suggested the songwriting process allowed participants to share their entire caregiver journey with others, differentiating the intervention from standard carer support groups. Participants described group songwriting as enabling them to find connections with other caregivers, create a group identity, and gain insight into their carer journey, subsequently leading to the development of inner strength and personal growth. Qualitative findings suggest coping may be a more relevant construct to measure than caregiver-patient relationship quality or caregivers' perception of caregiving.

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

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Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke Hf; Cuijpers, Pim

2013-03-27

Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness. A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews. We identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver. The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically

Grandparent caregiving among rural African Americans in a community in the American South: challenges to health and wellbeing.

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Clottey, Emmanuel N; Scott, Alison J; Alfonso, Moya L

2015-01-01

An increasing number of grandparents in rural USA are serving as primary caregivers for their grandchildren because of parental incarceration, addiction, joblessness, or illness. Low-income, African American women from the South are overrepresented in this growing population. There is a paucity of research exploring the challenges faced by rural grandparent caregivers, and past studies have not explicitly addressed the potential consequences of rural grandparent caregiving for health. The purpose of this qualitative study was to explore grandparent caregiving among rural, low-income, African American grandmothers in a community in the American South, and to identify challenges to health that arose in that context. McLeroy's social ecological model (SEM) was used to examine these challenges at multiple levels of influence. This qualitative interview-based study was conducted in a high-poverty community in rural Georgia. In-depth interviews were conducted with African American grandparent caregivers and key informants from local community-based organizations. A key informant assisted in identifying initial interview participants, and then snowball sampling was used to recruit additional participants. Interview questions were grouped under five domains (intrapersonal, interpersonal, community, organizational, and policy), according to the levels of the SEM. Iterative content analysis of interview transcripts was utilized. Transcripts were coded to identify text segments related to each domain of the SEM, which were grouped together for analysis by domain. Reflexive memo-writing aided in development of themes, and data quality was assessed using Lincoln and Guba's trustworthiness criteria. Rural African American grandparent caregivers faced a range of challenges to health. Direct physical challenges included chronic pain that interfered with sleep and daily functioning, mobility issues exacerbated by child care, and the pressure of managing their own medical conditions

Projecting social support needs of informal caregivers in Malaysia.

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Abu Bakar, Siti Hajar; Weatherley, Richard; Omar, Noralina; Abdullah, Fatimah; Mohamad Aun, Nur Saadah

2014-03-01

This article presents the findings of a self-report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross-sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care-giving responsibilities had impacted their emotional, financial, social and/or physical well-being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one-way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care-giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care-giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers. © 2013 John Wiley & Sons Ltd.

Access to leave benefits for primary caregivers of children with special health care needs: a double bind.

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Chung, Paul J; Garfield, Craig F; Elliott, Marc N; Vestal, Katherine D; Klein, David J; Schuster, Mark A

2013-01-01

Family leave benefits are a key tool that allow parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). We conducted telephone interviews with 3 successive cohorts of employed parents of CSHCN, randomly sampled from a California children's hospital. At Wave 1 (November 2003 to January 2004), we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006), we conducted 396 parent interviews. At Wave 3 (November 2007 to January 2008), we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses by using wave indicators and sample weights. Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs 82%, P paid leave outside of sick leave/vacation (41% vs 51%, P Leave Act benefits (28% vs 44%, P leave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child's illness and to report being unable to miss work when they needed to. Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve the circumstances of CSHCN and their families. Copyright © 2013 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Burden, quality of life and distress of the main caregiver in head and neck, cervix and rectal cancer patients

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Miguel I

2017-03-01

Full Text Available Purpose: Based on Portuguese experience, current practice does not focus sufficiently on the caregiver needs through caring of the cancer patient. Understanding the impact of different tumor types on caregiver burden, quality of life, and distress may help with organizing resources more efficiently to provide enhanced support for patients and caregivers. Methods: Ninety main caregivers of patients with cervix, rectal and head and neck cancer were interviewed at Instituto Português de Oncologia de Lisboa Francisco Gentil. The Portuguese versions of Zarit Burden Interview, Caregiver Quality of Life Index - Cancer (CQOLC Scale and the distress thermometer were used. Results: The majority of caregivers were female (76.7%, median age was 45.5years (20-79, 40% were spouses and 38.7% sons/daughters. Zarit Burden Interview average score was 25.2 ± 11.6, higher on head and neck cancer group. 59.5% of caregivers had moderate burden and no cases of severe burden. Mean quality of life score was 64.8 ± 15.8 which was lower in the head and neck group. Average distress score across the three groups was seven and rectal group presented a lower score than the other two groups. A subgroup analysis (gender, kinship relation, employment status and cohabitation before starting care of caregivers characteristics showed no statistical differences. Conclusion: There were little differences in the experience of caring within caregivers based on the three different cancer groups, although caregivers of patients with head and neck cancer scored consistently worse in the three scales studied. More efforts should be taken to optimize coping strategies for these caregivers, as well as non-cohabitant and active caregivers, who had a worse caring experience.

Views on Lifestyle Change From Caregivers of People With Cognitive Impairment in China

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Y. John Mei

2013-08-01

Full Text Available Lifestyle changes such as in physical exercise, social activity, and diet can mitigate cognitive decline and improve quality of life in caregivers and care recipients with cognitive impairment. However, caregiver perspectives on lifestyle change remain largely unexamined. This study compares perspectives among caregivers for those with dementia and those with mild cognitive impairment (MCI. Interviews were conducted with caregivers in two sites in China, and thematic similarities and differences were examined between the two groups. Caregivers from both groups identified exercise, social activity, and diet as healthy ways of life. Differences were found in approaching lifestyle change based on health of the care recipient. Caregivers for patients with dementia found more often that they had no time or possibility for change, while caregivers for individuals with MCI were more often hopeful about change.

Family caregivers in rural Uganda: the hidden reality.

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Kipp, Walter; Tindyebwa, Denis; Rubaale, Tom; Karamagi, Ednah; Bajenja, Ellen

2007-01-01

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.

Stressors of caregivers of school-age children with epilepsy and use of community resources.

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Saburi, Gladys

2011-06-01

Childhood epilepsy causes multiple stressors, difficulty in adjustment, and disruptions in family relations. This study sought to identify stressors of caregivers of school-age children and to assess whether use of community resources alleviates or contributes to caregiver stress. Stressors refer to concern about the child, communication with healthcare providers, changes in family relationships, interaction with school, and support within the community. A caregiver refers to the person who had looked after the child for the past 6-12 months. Support groups, religious or worship groups, counseling services, and traditional and spiritual faith healers were the community resources that were addressed. Face-to-face interviews were conducted on a convenience sample of 46 caregivers. A three-part structured interview schedule was used to describe demographic data, stressors of caregivers, and use of community resources. The top 6 stressors were the inability to get antiepileptic drugs, the deep pain or sadness caused by the child's seizures, caregiving (which was predominantly by mothers), limited help from the extended family, inadequate information on side effects of drugs, and inadequate information on seizures. The most commonly used community resource was religious or worship groups, with epilepsy support groups being least used. To alleviate caregiver stress, it is important that healthcare providers routinely assess the effect of seizures on caregivers and refer those requiring counseling, advocate for more male and extended family involvement in caregiving and provide adequate information on side effects of drugs and on seizures as standard practice. Nurses in developed countries should incorporate religious activities among complementary and alternative medicine interventions to reduce caregiver stress. Spiritual faith healers should be encouraged to refer clients with epilepsy for drug therapy and counseling.

Explain the 'unexplainable': A qualitative enquiry of the representations of the caregivers of brain-injured people.

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Huet, Magali; Dany, Lionel; Apostolidis, Thémistoklis

2016-04-01

The aim of our research is to highlight the role of social representations of the traumatic brain-injured person in the adjustments made by caregivers in building and maintaining quality of care. Twenty-three semi-structured interviews were conducted with nursing assistants and medico-psychological assistants, working in a long-term care facility. The interviews were the subject of a thematic content analysis. The analysis shows the role of representations of the traumatic brain-injured person in the way caregivers explain behaviours and situations and in the orientation of their professional practices. In explaining the inexplicable, caregivers establish a more human relationship through individualized care.

Challenges and Strategies for Hospice Caregivers: A Qualitative Analysis.

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Oliver, Debra Parker; Demiris, George; Washington, Karla T; Clark, Carlyn; Thomas-Jones, Deborah

2017-08-01

Family caregivers of hospice patients are responsible for the day-to-day care of their loved ones during the final months of life. They are faced with numerous challenges. The purpose of this study was to understand the challenges and coping strategies used by hospice caregivers as they care for their family members. This study is a secondary analysis of data from an attention control group in a large randomized controlled trial testing a cognitive behavioral intervention with hospice caregivers. Audiotaped interviews were coded with initial themes and combined into final categories of caregiving challenges and strategies for managing the hospice caregiving experience. Caregivers shared narratives discussing challenges that included their frustrations with patient care issues, emotional challenges, frustrations with various health care systems, financial problems, and personal health concerns. They also discussed coping strategies involving patient care, self-care, and emotional support. The coping techniques were both problem and emotion based. There is a need for interventions that focus on strengthening both problem-based and emotional-based coping skills to improve the caregiving experience. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Supporting home hospice family caregivers: Insights from different perspectives.

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Ellington, Lee; Cloyes, Kristin G; Xu, Jiayun; Bellury, Lanell; Berry, Patricia H; Reblin, Maija; Clayton, Margaret F

2018-04-01

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

The experiences of family caregiving in a chronic care unit.

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Cho, Myung Ok

2005-12-01

The main purpose of this critical ethnography was to examines the process and discourses through which family caregivers experience while caring for their sick family member in a hospital. This was achieved by conducting in-depth interviews with 12 family caregivers, and by observing their caring activities and daily lives in natural settings. The study field was a unit for neurologic patients. Data was analyzed using taxonomy, discourse analysis, and proxemics. All research work was iteratively processed from March 2003 to December 2004. Constant comparative analysis of the data yielded the process of becoming a successful family caregiver: encountering the differences and chaos as novice; constructing their world of skilled caregivers; and becoming a hospital family as experienced caregivers. During the process of becoming an experienced hospital family, the discourse of family centered idea guided their caring behaviors and daily lives. The paternalistic family caregivers struggled, cooperated, and harmonized with the patriarchal world of professional health care system. During this process of becoming hospital family, professional nurses must act as cultural brokers between the lay family caring system and the professional caring system.

Do spouse caregivers of young and older persons with dementia have different needs? A comparative study.

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Wawrziczny, Emilie; Pasquier, Florence; Ducharme, Francine; Kergoat, Marie-Jeanne; Antoine, Pascal

2017-09-01

The aim of this study was to explore the needs of spouse caregivers of persons with dementia (PWD) and then to compare them based on the PWD's age at disease onset. This data could be used to adapt support programmes to address differences between the two groups. Thirty-eight spouse caregivers of persons with late-onset dementia and 40 spouse caregivers of persons with early-onset dementia (PEOD) agreed to participate in the study. The mean ± SD age of the PEOD was 57.6 ± 4.0 years, whereas it was 80.9 ± 5.3 years for the persons with late-onset dementia. Interviews were conducted in the spouse caregivers' homes with only the spouse caregiver. The semi-structured interviews were based on the French version of the Carers Outcome Agreement Tool. The interviews were analyzed in two steps. The first step was qualitative to identify needs. The data were thematically analyzed using QSR NVivo 10. The second step was quantitative to compare the needs depending on the PWD's age at onset. The comparison between the two groups was performed using the χ 2 test. The results demonstrated that the majority of needs are the same for the two groups of spouse caregivers. All caregivers need to unwind, to stimulate and pay attention to the PWD, to break the isolation, and to be more prepared and confident. However, some differences emerge, with the spouse caregivers of PEOD expressing a greater number of needs. The caregivers of PEOD seem to have a greater need to interact and maintain contacts with other people (P = 0.001), have more general care-related needs (P = 0.005), require more appropriate care structures (P = 0.037), and need greater assistance with administrative procedures (P = 0.004). To improve spouse caregivers' well-being and sense of efficiency, it would be interesting to develop a support programme with a common framework and specific modules depending on the PWD's age at disease onset. © 2017 Japanese Psychogeriatric Society.

Caregiver issues and AIDS orphans: perspectives from a social worker focus group.

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Paige, C Y; Johnson, M S

1997-10-01

This study examines social workers' perceptions of the needs of families coping with acquired immunodeficiency syndrome (AIDS). This research investigates the problems of family caregivers of children orphaned by human immunodeficiency virus (HIV)-related death of their parents. A qualitative semistructured interview format was used in a focus group of 18 social workers. Four questions were designed to assess family needs and resources, as well as to evaluate the social workers' perspectives of governmental policies affecting these families. A list of four problems and two recommendations for change evolved from the focus group. Inadequate finances to house and care for the children was the primary cause for distress in these families. The major governmental policy that hindered the social workers' ability to assist families pertained to the low financial entitlement for caregivers who are related to the orphaned child. It was noted that unrelated caregivers receive substantially more money for the care of these children than family caregivers receive. Recommendations were made to change this policy and to develop guardianship laws that facilitate families' abilities to provide care to AIDS orphans. Family caregivers of AIDS orphans are bombarded with great demands and limited resources. This analysis of their situation from the social workers' perspective is a positive step toward the improvement of support services for these families. Further research should include individual qualitative interviews assessing the needs of the caregivers and AIDS orphans.

Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children

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Kaizik, Cassandra; Caga, Jashelle; Camino, Julieta; O’Connor, Claire M.; McKinnon, Colleen; Oyebode, Jan R.; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida

2017-01-01

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences. PMID:28106550

Exploring youth and caregiver preferences for asthma education video content.

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Geryk, Lorie L; Arrindell, Courtney C; Sage, Adam J; Blalock, Susan J; Reuland, Daniel S; Coyne-Beasley, Tamera; Lee, Charles; Sleath, Betsy L; Carpenter, Delesha M

2016-01-01

This study examines (1) whether youth and their caregivers have different preferences for asthma education video topics and (2) if education topic preferences vary by youth and caregiver sociodemographic characteristics. Youth (n = 83) ages 7-17 years with persistent asthma and their caregivers were recruited at two pediatric practices in North Carolina. Sociodemographic information and youth and caregiver preferences for nine asthma video education topics were collected during in-person interviews. Bonferroni-corrected Chi-square or McNemar tests (α = 0.0056) were used to compare youth and caregivers differences in topic preferences and topic preferences by youth and caregiver sociodemographic characteristics, including gender, race, ethnicity, and age. Youth were primarily male (52%) and from low-income families (74%; caregiver annual income less than $30,000) and many were Hispanic (45%). Youth and parents expressed the most interest in the following two topics: "how to deal with triggers" (90% and 95%, respectively) and "how to keep asthma under control" (87% and 96%, respectively). Caregivers and children were discordant for two topics: "the difference between a rescue and controller medicine" and "how to [help your child] talk to your [his/her] friends about asthma." No differences were found between youth and caregiver sociodemographic characteristics and video topic preferences. Youth with persistent asthma and their caregivers differed in their asthma education topic preferences, but preferences did not vary by caregiver or youth sociodemographic characteristics. Studies examining the effectiveness of interventions tailored to differences in educational preferences of youth with asthma and their caregivers are needed.

Religiousness is positively associated with quality of life of ALS caregivers.

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Calvo, Andrea; Moglia, Cristina; Ilardi, Antonio; Cammarosano, Stefania; Gallo, Sara; Canosa, Antonio; Mastro, Enza; Montuschi, Anna; Chiò, Adriano

2011-05-01

It has been repeatedly shown that religiousness and spirituality have positive effects on quality of life (QoL) and outcome in ALS patients. here are, however, very few data on the impact of religiousness/spirituality on ALS caregivers. We determined the impact of religiousness on caregivers and its correlation with quality of life, depression and anxiety. A total of 75 consecutive ALS patients and their informal caregivers were interviewed using tests evaluating religiousness, depression, anxiety, quality of life and satisfaction with life. Results showed that there was a significant correlation between patients and caregivers' public and total religiousness. Caregivers' private religiousness was related to their age and education level, while their public religiousness was related only to their education level. Caregivers' quality of life was related to their private religiousness and satisfaction with life with their total religiousness. We conclude that religiousness is positively associated with ALS caregivers' quality of life and satisfaction with life, in a measure similar to that observed in ALS patients. Health care professionals caring for ALS patients should consider that the needs of the caregivers include religious/spiritual concerns.

Perceptions of burden of caregiving by informal caregivers of cancer patients attending University of Calabar Teaching Hospital, Calabar, Nigeria

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Akpan-Idiok, Paulina Ackley; Anarado, Agnes Nonye

2014-01-01

Introduction Cancer care is devastating to families. This research studied the informal caregivers’ perceptions of burden of caregiving to cancer patients attending University of Calabar Teaching Hospital, Calabar. Methods The research adopted a cross-sectioned descriptive design and 210 caregivers providing care to advanced cancer patients were purposively selected. Data were collected using a researcher developed questionnaire and standardized Zarit Burden Interview scale (ZBIS). Data collected were analysed using descriptive and chi-square statistics with the help of SPSS 18.0 and PAS 19.0 softwares. Results The results indicated that the caregivers were in their youthful and active economic age, dominated by females, Christians, spouses, partners and parents. The burden levels experienced by the caregivers were as follows: severe (46.2%), moderate (36.2%) and trivial of no burden (17.6%). The forms of burden experienced were physical (43.4%), psychological (43.3%), financial (41.1%) and social (46.7%), quite frequently and nearly always. Psychological and social forms of burden had the highest weighted score of 228 in terms of magnitude of burden. The result further showed that there was a significant (P = 0.001) and inverse association between caregivers’ burden and the care receivers’ functional ability. The level of burden also increased significantly (P = 0.000) with the duration of care, while there was also a significant (P = 0.01) relationship between caregivers’ experience of burden and their desire to continue caregiving. Conclusion Caregiving role can be enhanced by provision of interventions such as formal education programme on cancer caregiving, oncology, home services along side with transmural care. PMID:25419297

Predictors of Desire to Institutionalization in Dementia Caregivers From a Developing Country.

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Sinha, Preeti; Yohannan, Sherin; Thirumoorthy, A; Sivakumar, Palanimuthu Thangaraju

2017-08-01

Older adults with dementia have higher rates of institutionalization than those without dementia. Desire to institutionalization (DTI) is an important factor influencing the actual institutionalization but is less well studied. This cross-sectional study examines the DTI with the scale of same name developed by Morycz, in 1985, in a sample of 50 caregivers of patients with dementia in a tertiary clinical care setting in a developing country. Caregiver burden associated with personal strain (by factor analyzed Zarit Burden Interview scale), and stress perceived out of caregiving (by Perceived Stress Scale) predicted higher DTI. Besides, those who were married had lower DTI scores. The factors which didn't affect DTI were total caregiver burden, family and social support, age of patient and caregiver, education of caregiver, severity and duration of dementia, and treatment duration. These results were different from those of developed country-based DTI studies and may indicate sociocultural differences.

Rural Latino caregivers' beliefs and behaviors around their children's salt consumption.

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Hoeft, Kristin S; Guerra, Claudia; Gonzalez-Vargas, M Judy; Barker, Judith C

2015-04-01

Prevalence of high blood pressure has been increasing in U.S. children, with implications for long term health consequences. Sodium consumption, a modifiable risk factor for high blood pressure, is above recommended limits and increasing. Very little is known about Latino caregiver beliefs and behaviors around their children's salt consumption. In California's Central Valley, qualitative interviews in Spanish investigated low-income caregivers' views and understandings of their children's dietary salt consumption. Thirty individual interviews and 5 focus groups were conducted (N=61). Interview transcripts were translated and transcribed, coded and thematically analyzed. Seven primary topic areas around children's salt intake and its impact on health were identified: children's favorite foods, children's dietary salt sources, superiority of home-cooked foods, salty and sweet foods, managing salt for health, developing children's tastes, and adding salt added at the table. Parents recognize common sources of sodium such as "junk food" and processed food and made efforts to limit their children's consumption of these foods, but may overlook other significant sodium sources, particularly bread, cheese, prepared soups and sports drinks. Caregivers recognize excess salt as unhealthy for children, but don't believe health problems (like high blood pressure) can occur in young children. Nevertheless, they made efforts to limit how much salt their children consumed through a variety of strategies; school meals were a source of high sodium that they felt were outside of their control. Latino caregivers are concerned about their children's salt intake and attempt to limit consumption, but some common sources of sodium are under-recognized. Copyright © 2014 Elsevier Ltd. All rights reserved.

Robots to assist daily activities: views of older adults with Alzheimer's disease and their caregivers.

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Wang, Rosalie H; Sudhama, Aishwarya; Begum, Momotaz; Huq, Rajibul; Mihailidis, Alex

2017-01-01

Robots have the potential to both enable older adults with dementia to perform daily activities with greater independence, and provide support to caregivers. This study explored perspectives of older adults with Alzheimer's disease (AD) and their caregivers on robots that provide stepwise prompting to complete activities in the home. Ten dyads participated: Older adults with mild-to-moderate AD and difficulty completing activity steps, and their family caregivers. Older adults were prompted by a tele-operated robot to wash their hands in the bathroom and make a cup of tea in the kitchen. Caregivers observed interactions. Semi-structured interviews were conducted individually. Transcribed interviews were thematically analyzed. Three themes summarized responses to robot interactions: contemplating a future with assistive robots, considering opportunities with assistive robots, and reflecting on implications for social relationships. Older adults expressed opportunities for robots to help in daily activities, were open to the idea of robotic assistance, but did not want a robot. Caregivers identified numerous opportunities and were more open to robots. Several wanted a robot, if available. Positive consequences of robots in caregiving scenarios could include decreased frustration, stress, and relationship strain, and increased social interaction via the robot. A negative consequence could be decreased interaction with caregivers. Few studies have investigated in-depth perspectives of older adults with dementia and their caregivers following direct interaction with an assistive prompting robot. To fulfill the potential of robots, continued dialogue between users and developers, and consideration of robot design and caregiving relationship factors are necessary.

Commitment to personal values and guilt feelings in dementia caregivers.

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Gallego-Alberto, Laura; Losada, Andrés; Márquez-González, María; Romero-Moreno, Rosa; Vara, Carlos

2017-01-01

Caregivers' commitment to personal values is linked to caregivers' well-being, although the effects of personal values on caregivers' guilt have not been explored to date. The goal of this study is to analyze the relationship between caregivers´ commitment to personal values and guilt feelings. Participants were 179 dementia family caregivers. Face-to-face interviews were carried out to describe sociodemographic variables and assess stressors, caregivers' commitment to personal values and guilt feelings. Commitment to values was conceptualized as two factors (commitment to own values and commitment to family values) and 12 specific individual values (e.g. education, family or caregiving role). Hierarchical regressions were performed controlling for sociodemographic variables and stressors, and introducing the two commitment factors (in a first regression) or the commitment to individual/specific values (in a second regression) as predictors of guilt. In terms of the commitment to values factors, the analyzed regression model explained 21% of the variance of guilt feelings. Only the factor commitment to family values contributed significantly to the model, explaining 7% of variance. With regard to the regression analyzing the contribution of specific values to caregivers' guilt, commitment to the caregiving role and with leisure contributed negatively and significantly to the explanation of caregivers' guilt. Commitment to work contributed positively to guilt feelings. The full model explained 30% of guilt feelings variance. The specific values explained 16% of the variance. Our findings suggest that commitment to personal values is a relevant variable to understand guilt feelings in caregivers.

Family caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study.

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Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

2015-06-01

Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare

Stigma towards mental illness: A hospital-based cross-sectional study among caregivers in West Bengal.

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Mukherjee, Shrabani; Mukhopadhyay, Dipta Kanti

2018-01-01

Stigma among caregivers of people with mental illness has a serious impact on the disease outcome and lives of people with mental illness as well as other family members. The objectives of this study were (i) To determine the level of self-perceived stigma toward mental illness, (ii) To measure perception to it among caregivers of people with mental illness, and (iii) To identify the factors associated with self-perceived stigma of caregivers. In this cross-sectional study, a structured interview was conducted among 200 caregivers of people with mental illness in the psychiatry outpatient department of a tertiary care hospital in West Bengal, India. Stigma and perception regarding mental illness were assessed with a validated 12-item Explanatory Model Interview Catalogue and 20-item perception scale, respectively. Information on their sociodemographic characteristics was also collected. Average stigma score (53.3 ± 13.2) was higher than 50% of maximum attainable score. Caregivers of higher age, female gender, low income, higher education, manual job, rural residence, and those who are single or widowed scored higher in stigma scale. Caregivers with female gender (P = 0.007) and rural residence (P = 0.01) were more likely to have stigma while the perception score was negatively associated (P illness and improve family life.

Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s.

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Graessel, Elmar; Berth, Hendrik; Lichte, Thomas; Grau, Hannes

2014-02-20

Subjective burden is a central variable describing the situation encountered by family caregivers. The 10-item short version of the Burden Scale for Family Caregivers (BSFC-short/BSFC-s) was developed to provide an economical measure of this variable. The present study examined the reliability and validity of the BSFC-s. Comprehensive data from "the IDA project" were the basis of the calculations, which included 351 dyads and examined medical data on people with dementia, interview data from their family caregivers, and health insurance data. A factor analysis was performed to explore the structure of the BSFC-s; Cronbach's alpha was used to evaluate the internal consistency of the scale. The items were analyzed to determine the item difficulty and the discriminatory power. Construct validity was tested with five hypotheses. To establish the predictive validity of the BSFC-s, predictors of institutionalization at a follow-up time of 2.5 years were analyzed (binary logistic regression). The BSFC-s score adhered to a one-factor structure. Cronbach's alpha for the complete scale was .92. A significant increase in the BSFC-s score was observed when dementia progressed, disturbing behavior occurred more frequently, care requirements increased, and when caregivers were diagnosed with depression. Caregiver burden was the second strongest predictor of institutionalization out of a total of four significant predictors. All hypotheses that referred to the construct validity were supported. The BSFC-short with its ten items is a very economical instrument for assessing the caregiver's total subjective burden in a short time frame. The BSFC-s score has predictive validity for the institutionalization of people with dementia. Therefore it is an appropriate outcome measure to evaluate caregiver interventions. The scale is available for free in 20 languages (http://www.caregiver-burden.eu). This availability facilitates the comparison of international research findings.

Compliance and Caregiver Satisfaction in Alzheimer’s Disease: Results from the AXEPT Study

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Roberto Bernabei

2012-10-01

Full Text Available Background/Aims: According to experimental data, a transdermal application is preferred by caregivers of Alzheimer’s disease (AD patients compared with oral medications. The AXEPT study compared compliance to treatment among community-dwelling patients with mild-to-moderate AD treated with transdermal application compared to oral medications and caregiver satisfaction in a real clinical setting. Methods: Data from 45 memory clinics in Italy were collected between September 8, 2010 and January 31, 2011. Compliance to treatment and caregiver satisfaction were measured using the Caregiver Medication Interview. Results: A total of 855 AD patients and their caregivers participated in the study. Nearly 80% of caregivers of patients on patch were not concerned about adherence to treatment compared with 64% of caregivers of patients on oral drugs. Among caregivers of patients on patch, 94% did not report any difficulties in remembering to administer treatment compared with 73% of caregivers of patients on oral medications. The highest level of compliance and satisfaction was reported by caregivers of patients on transdermal application. Conclusion: Caregivers of patients treated with a transdermal application appeared to be more satisfied and reported a higher level of compliance than caregivers of patients receiving anti-AD oral medications.

Hope and connection: the experience of family caregivers of persons with dementia living in a long term care facility

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2013-01-01

Background Hope is a psychosocial resource that is essential for the psychological, spiritual, and physical well-being of family members caring for persons with dementia. A significant positive relationship has been found between hope and well-being in family caregivers of persons with dementia living in the community. However, the hope experience of family caregivers of persons living with dementia in long-term care (LTC) facilities has not been explored. The purpose of this study was to explore the hope experience of family caregivers of persons with dementia living in a LTC facility. Methods Twenty-three open-ended face to face interviews were conducted with 13 family caregivers of residents with dementia in a LTC facility. Family was broadly defined to include relatives and friends. Seven of these participants also reflected on their hope in diaries over a two week period. Interview transcripts and journal texts were analyzed using Thorne’s interpretive description approach. Results The over-arching theme was “hope and connection”. Participants lost hope and felt despair when they perceived they were unable to connect with their family member in the LTC facility. They regained their hope when a connection could be made. Several sub-themes were identified including: accepting where we are, living life in the moment, believing in something, standing together, and balancing dual worlds. Conclusions Hope was important and essential for family caregivers of persons with dementia residing in a LTC facility. The overarching theme of “hope and connection” underscores the importance of maintaining relationships and connection between family members and the person in LTC. Given the paucity of hope research conducted within this population, the study findings provide a foundation for future research. PMID:24138640

Behavior characterization of informal caregivers of wounded patients in the hospital environment

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Taynara Kelly Guimarães

2017-11-01

Full Text Available Wound care in the hospital environment continues at home after discharge and performed by the informal caregiver. The objective of this study was to characterize the behavior of the informal caregiver during the treatment of wounds in hospitalized patient. This is a prospective study with 39 caregivers of wounded patients in a university hospital in the Brazilian Midwest. We collected the data through direct non-participant observation and interview. We found that 94.9% of the caregivers remained in the ward during the dressing. Of these, 97.3% were close to the patient; 73% observed closely; 54.1% were familiar to the evolution of the wound; 59.5% were involved in the procedure and questioned about the dressing and/or used materials. Most caregivers of persons hospitalized with wounds are interested in and somehow participate of the dressing procedure. The nursing staff can take advantage of such moments to guide the caregivers and prepare them for homecare.

More caregiving, less working: caregiving roles and gender difference.

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Lee, Yeonjung; Tang, Fengyan

2015-06-01

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.

Improving childhood nutrition and wellness in South Africa: involving mothers/caregivers of malnourished or HIV positive children and health care workers as co-designers to enhance a local quality improvement intervention.

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van Deventer, Claire; Robert, Glenn; Wright, Anne

2016-08-05

A significant proportion of children admitted to a hospital in a South African sub-district in 2010 were severely malnourished and - when concurrently HIV positive - were not correctly initiated on antiretroviral therapy. Audit data over a subsequent four year period revealed that 60 % of malnourished children admitted to the hospital were HIV positive. To supplement an ongoing local quality improvement (QI) intervention addressing poor nutritional outcomes in children in this setting, Experience-based Co-design (EBCD) was used to enhance previously low levels of mother, carer and staff engagement. EBCD was implemented over an 8 month period. Non-participant observation was conducted comprising a total of 10 h in 5 different clinical locations. Semi-structured interviews were undertaken with 14 purposively selected staff members as well as 10 mothers/caregivers. The staff interviews were audio-taped whilst the mothers/caregiver interviews were filmed; both sets of experiences were analysed for key 'touchpoints'. Mothers/caregivers and staff participated in separate feedback events and then came together to identify their shared priorities for improving the service. Participants worked together in 3 smaller co-design teams to implement improvements. There was overlap in staff and mother/carer views as to their priorities for QI. However, whilst staff typically highlighted pragmatic issues, mothers/caregivers were more likely to identify experiential and relational issues. A total of 38 QI interventions were proposed after the priorities had been discussed and delegated to the 3 co-design teams; 25 of these changes had been implemented or were being planned for by the end of the study period. Examples included: a point of care blood machine being bought to shorten the time in the emergency department whilst waiting for laboratory results; a play area being organised for children attending the HIV clinic; the development of three standard operating procedures to

Psychometric properties of the Valued Living Questionnaire Adapted to Dementia Caregiving.

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Romero-Moreno, R; Gallego-Alberto, L; Márquez-González, M; Losada, A

2017-09-01

Caring for a relative with dementia is associated with physical and emotional health problems in caregivers. There are no studies analysing the role of personal values in the caregiver stress process. This study aims to analyse the psychometric properties of the Valued Living Questionnaire Adapted to Caregiving (VLQAC), and to explore the relationship between personal values and stressors, coping strategies and caregiver distress. A total of 253 individual interviews with caregivers of relatives with dementia were conducted, and the following variables were assessed: personal values, stressors, cognitive fusion, emotional acceptance, depression, anxiety, and satisfaction with life. An exploratory factor analysis and hierarchical regression analyses were carried out. Two factors were obtained, Commitment to Own Values and Commitment to Family Values which explain 43.42% of variance, with reliability coefficients (Cronbach's alpha) of .76 and .61, respectively. Personal values had a significant effect on emotional distress (depression and anxiety) and satisfaction with life, even when controlling for socio-demographic variables, stressors and coping strategies. Results suggest that the personal values construct of dementia caregivers is two-dimensional. The personal values of the caregivers play an important role in accounting for distress and satisfaction with life in this population.

Latino caregiver experiences with asthma health communication.

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Riera, Antonio; Ocasio, Agueda; Tiyyagura, Gunjan; Krumeich, Lauren; Ragins, Kyle; Thomas, Anita; Trevino, Sandra; Vaca, Federico E

2015-01-01

In this article, we analyze qualitative data from a purposeful sample of limited English proficiency (LEP) asthma health caregivers. We used ethnically concordant, semistructured, in-depth Spanish-language interviews and a follow-up focus group to explore issues related to communication during pediatric asthma encounters in medical settings. Inductive coding of Spanish transcripts by a bilingual research team was performed until thematic saturation was reached. Several key findings emerged. LEP caregivers encountered significant asthma burdens related to emotional stress, observed physical changes, and communication barriers. Language-discordant communication and the use of ad hoc interpreters were common. This finding is complex, and was influenced by perceptions of interpreter availability, delays in care, feelings of mistrust toward others, and individual emotional responses. Language-concordant education and suitable action plans were valued and desired. We discuss a revealing depiction of the LEP caregiver experience with asthma health communication and recommend areas for further inquiry. © The Author(s) 2014.

Health Trajectories of Family Caregivers: Associations With Care Transitions and Adult Day Service Use

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Liu, Yin; Kim, Kyungmin; Zarit, Steven H.

2017-01-01

Objective The study examines family caregivers’ health changes over 1 year on four health dimensions and explores the association of differential health trajectories with adult day service (ADS) use and caregiving transitions. Method The participants were 153 primary caregivers of individuals with dementia (IWDs) who provided information on care situations and their own health at baseline, 6-month, and 12-month interviews. Results Caregivers showed increasing functional limitations and decreasing bodily pain over time, whereas role limitation and general health perception remained stable. Furthermore, caregivers’ trajectories of functional limitation were associated with their extent of ADS use at baseline and their relatives’ placement. Discussion Health is multidimensional; all dimensions of caregiver health do not change in a uniform manner. The findings underscore the importance of the association of caregiving transitions and caregiver health and the potential health benefits of ADS use for family caregivers. PMID:25348275

[Perspective of informal caregivers on home care. Qualitative study with a computer program].

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Prieto Rodríguez, M Angeles; Gil García, Eugenia; Heierle Valero, Cristina; Frías Osuna, Antonio

2002-01-01

A hot debate exists in our country as to the models of home care which must be developed. This study is aimed at ascertaining how the family caregivers of terminal cancer patients, of the elderly suffering from dementia and of individuals having undergone major operations in outpatient surgery programs rate the quality of the home care provided. A phenomenological type qualitative study based on discussion groups (9), triangular groups (5) and in-depth interviews (22). This study was conducted in Andalusia throughout the 1999-2000 period. The subjects of the study were the main caregivers of patients provided with home care through the healthcare centers. The information must be analyzed by means of a Nudist-4 software-aided content analysis. The analysis variables were those of the Servqual model. For the caregivers of cancer patients, the most important aspects of the quality of the home care provided were the Response Capacity and Accessibility. This analysis revealed that the patients suffered pain but the pain was not controlled. Negative aspects hindering accessibility were the lack of home care coverage outside of regular working hours, the difficulty of getting in touch by phone, the length of time it takes for someone to come and the visits solely on request. The caregivers of patients having undergone major outpatient surgery want Security and Reliability. They complain of the short length of time within which the patients are released from the hospital and of the home care provided by the health care center. The caregivers of the elderly with dementia place top priority on being provided with the materials they need to take care of these patients. Caregivers' and patients' expectations differ, depending on health problems, therefore, the type of home care provided should vary, according to the health problems involved. It is necessary to develop a flexible model, capable of adapting to different patient needs and the diverse circumstances that affect

Consultation etiquette in general practice: a qualitative study of what makes it different for lay cancer caregivers

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Jiwa Moyez

2011-10-01

Full Text Available Abstract Background It is commonplace for lay caregivers to overlook their own health concerns when supporting someone with advanced cancer. During this time, caregivers' needs as patients are often marginalised by health professionals, including General Practitioners (GPs, who may miss the breadth of caregivers' needs by focusing on the practicalities of caregiving. GPs traditionally rely on patients to raise their concerns, and then respond to these concerns, but caregivers as patients may be disinclined to cue their GP. The norms of engagement when caregivers consult their GP are less defined, and how they interact with their GP regarding their own health is under-explored. This sub-study investigates the norms, assumptions and subtleties which govern caregiver-GP consultations, and explores factors affecting their interaction regarding caregivers' own health concerns. Methods We conducted semi-structured interviews with six lay caregivers and 19 health professionals in Brisbane, Australia, and analyzed the interview transcripts thematically. Results Traditional norms of engagement are subjected to assumptions and expectations which caregivers and GPs bring to the consultation. Practice pressures also influence both parties' capacity and willingness to discuss caregivers' health. Nonetheless, some GPs monitor caregivers' health opportunistically. Their interaction is enhanced by the quality of the caregiver-GP relationship and by the GP's skills. Conclusions Caregivers are caught in a paradox whereby their health needs may become subsumed by the care recipient's needs in a setting where patient needs are normally scrutinised and supported. Caregivers may not raise their health concerns with their GP, who instead may need to cue them that it is timely and safe to do so. The routine use of a prompt may help to address caregivers' needs systematically, but it needs to be complemented by GPs' desire and capacity to engage with patients in a

Theorizing How Art Gallery Interventions Impact People With Dementia and Their Caregivers.

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Camic, Paul M; Baker, Erin L; Tischler, Victoria

2016-12-01

Dementia refers to a variety of diseases that are characterized by cognitive difficulties and an overall decline in daily living skills. Psychologically informed arts and health programs may be particularly beneficial ways of improving the lives of people with dementia and their caregivers. This study sought to better understand how programs at contemporary and traditional art galleries might play a role in the lives of people with dementia. Participants included 12 people with mild-to-moderate dementia, their 12 caregivers and 4 gallery facilitators. Those with dementia and their caregivers were engaged in art viewing followed by art making over an 8-week period. Data, collected through postintervention interviews with participants, field notes and extensive written communication between the facilitators and research team, were analyzed using grounded theory methodology to theorize how gallery-based interventions affect people with dementia and those who care for them. The emerging theory has four primary components: the art gallery is seen as being a physically valued place that provides intellectual stimulation and offers opportunities for social inclusion that can change how dementia is perceived. These components coalesced to create positive emotional and relational effects for those with dementia and caregivers. The resulting theory has potential implications for the use of gallery-based programs in dementia care within public health, healthcare, and museum/art gallery policy and practice. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Correlates of Problem Recognition and Intentions to Change among Caregivers of Abused and Neglected Children

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Littell, Julia H.; Girvin, Heather

2006-01-01

Objective: To identify individual, family, and caseworker characteristics associated with problem recognition (PR) and intentions to change (ITC) in a sample of caregivers who received in-home child welfare services following substantiated reports of child abuse or neglect. Methods: Caregivers were interviewed at 4 weeks, 16 weeks, and 1 year…

[Daily routine of informal caregivers-needs and concerns with regard to the discharge of their elderly family members from the hospital setting-a qualitative study].

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Küttel, Cornelia; Schäfer-Keller, Petra; Brunner, Corinne; Conca, Antoinette; Schütz, Philipp; Frei, Irena Anna

2015-04-01

The care of an elderly frail and ill family member places a great responsibility on informal caregivers. Following discharge of the older person from the hospital setting it can be observed that caregivers are often inadequately informed about aspects such as health status, prognosis, complications, and care interventions. Concerns and needs of caregivers regarding their daily living and routine following hospital discharge has not been investigated and is considered important for an optimized discharge management. To explore personal needs and concerns of informal caregivers with regard to daily living prior to discharge of their family member. Eight narrative interviews were conducted with caregivers and were analysed using Mayring's content analysing method. All caregivers had concerns regarding the maintenance of a functional daily routine. As well as caring and household duties, this functional daily routine included negotiating one's own personal time off duties, the reality of the deteriorating health status of the family member and the associated sense of hope. The intensity of family ties affected the functional daily routine. Caregivers had different expectations with regard to their integration during the hospital period. To support caregivers in their situation it is advisable to assess the functional daily routine of caregivers. Their need for time off their household and caring duties and their informational and educational needs to pertaining to disease progression, possible sources of support and symptom management should be recognised. Further inquiries into caregiver's involvement and responsibilities in the discharge process are needed.

Patient and caregiver congruence: the importance of dyads in heart failure care.

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Retrum, Jessica H; Nowels, Carolyn T; Bekelman, David B

2013-01-01

Informal (family) caregivers are integrally involved in chronic heart failure (HF) care. Few studies have examined HF patients and their informal caregiver as a unit in a relationship, or a dyad. Dyad congruence, or consistency in perspective, is relevant to numerous aspects of living with HF and HF care. Incongruence or lack of communication could impair disease management and advance care planning. The purpose of this qualitative study was to examine for congruence and incongruence between HF patients and their informal (family) caregivers. Secondary analyses examined the relationship of congruence to emotional distress and whether dyad relationship characteristics (eg, parent-child vs spouse) were associated with congruence. Thirty-four interviews consisting of HF patients and their current informal caregiver (N = 17 dyads) were conducted. Each dyad member was asked similar questions about managing HF symptoms, psychosocial care, and planning for the future. Interviews were transcribed and analyzed using the general inductive approach. Congruence, incongruence, and lack of communication between patients and caregivers were identified in areas such as managing illness, perceived care needs, perspectives about the future of HF, and end-of-life issues. Seven dyads were generally congruent, 4 were incongruent, and 6 demonstrated a combination of congruence and incongruence. Much of the tension and distress among dyads related to conflicting views about how emotions should be dealt with or expressed. Dyad relationship (parent-child vs spouse) was not clearly associated with congruence, although the relationship did appear to be related to perceived caregiving roles. Several areas of HF clinical and research relevance, including self-care, advance care planning, and communication, were affected by congruence. Further research is needed to define how congruence is related to other relationship characteristics, such as relationship quality, how congruence can best be

The experiences of family caregivers concerning their care of HIV ...

African Journals Online (AJOL)

2008-11-13

AIDS) are ... lead to depression and burnout. According to Gale ... on-one interview technique in which family caregivers of HIV/AIDS orphans were ..... and the orphan's grandmother was that there was no formal agreement of who ...

South Korean Family Caregiver Involvement in Delirium Care: A Qualitative Descriptive Study.

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Kang, Yun; Moyle, Wendy; Cooke, Marie; O'Dwyer, Siobhan

2017-12-01

The current study aimed to describe the effect of an educational program on RN-initiated efforts to involve family caregivers in delirium care. A descriptive qualitative study was performed. A purposive sample of 12 RNs who participated in a one group, pre-post evaluation of a delirium educational program, and a nominated sample of six family caregivers of patients who had been cared for by RNs in the program participated in individual, in-depth interviews. The qualitative findings indicated that the inclusion of a delirium brochure in ward orientation on admission, with reinforcement during shift changes, and RN-initiated engagement with family caregivers promoted family caregiver involvement in delirium prevention. Further studies in South Korea are needed to determine which family-centered nursing care interventions are culturally appropriate and most effective for RNs and family caregivers in delirium care. [Journal of Gerontological Nursing, 43(12), 44-51.]. Copyright 2017, SLACK Incorporated.

Pursuit of psychological well-being (ikigai) and the evolution of self-understanding in the context of caregiving in Japan.

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Yamamoto-Mitani, Noriko; Wallhagen, Margaret I

2002-12-01

Using the Japanese concept of ikigai, which describes a certain state of psychological well-being, this study explores how Japanese family caregivers of elderly parents with dementia pursue, maintain, or attempt to regain their psychological well-being in the face of the hardship of caregiving. Using constant comparative methodology, twenty-six Japanese women who were caring for an elderly demented parent or parent-in-law were interviewed. Based on the analysis of interview data, we define ikigai as certain life experiences and/or the positive emotion felt through those experiences that allow the caregiver to judge her life as good and meaningful, and to feel that it is worthwhile to continue living. Caregivers use various different means to pursue their ikigai depending on the context of care. The types of their pursuit of ikigai are examined in varying contexts of caregiving. Because the data suggest that ikigai experience influences how the caregivers' self-understanding changes over time, the notion of ikigai is further explored in relation to the construct of self-understanding.

The conceptions of care among family caregivers of persons living with HIV/AIDS in Addis Ababa, Ethiopia.

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Aga, Fekadu; Kylmä, Jari; Nikkonen, Merja

2009-01-01

This focused ethnographic study explores and describes the conceptions of care among family caregivers of people living with HIV/AIDS (PLWAs) in Addis Ababa, Ethiopia. Leininger's theory of culture care diversity and universality is the conceptual anchor of this ethnographic study. Using semistructured interviews and participant observation, 6 key informants and 12 general informants were interviewed in their home in Amharic language. Data were analyzed in Amharic using Leininger's phases of ethnonursing analysis for qualitative data and then translated to English. Four major themes representing family caregivers' conceptions of care were identified: nourishing the PLWA while struggling with poverty, maintenance of cleanliness and hygiene of the person and surroundings, comforting the PLWA, and sacrificing self to sustain the PLWA. Valuable data were gathered about the family caregivers' conceptions of care. Nurses can use this knowledge to design and provide culturally congruent care to family caregivers and PLWAs in the community.

EFFECTS OF REHABILITATION SERVICES ON ANXIETY, DEPRESSION, CARE-GIVING BURDEN AND PERCEIVED SOCIAL SUPPORT OF STROKE CAREGIVERS

Directory of Open Access Journals (Sweden)

Ali Yavuz Karahan

2014-01-01

Full Text Available Background: Few data are available on the specific care giving-related problems of stroke patient’s caregivers and factors that influence the burden of these caregivers. Aim: To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. Design: A prospective clinical trial. Setting: Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Populations: Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Methods: Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM. The Beck Anxiety Scale (BAS and the Beck Depression Scale (BDS were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS for perceived social support assessment. Results: A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p < 0.05. Conclusion: Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients’ functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. Clinical Rehabilitation Impact: The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with

What Do Caregivers Notice and Value about How Children Learn through Play in a Children's Museum?

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Letourneau, Susan M.; Meisner, Robin; Neuwirth, Jessica L.; Sobel, David M.

2017-01-01

In two studies, Providence Children's Museum investigated caregivers' observations and perceptions of their children's play and learning at the museum. In the first, caregivers (N = 40) were interviewed about what they observed children doing, what they believed children were thinking about, and their own thoughts and actions while watching…

Strategies for sustaining self used by family caregivers for older adults with dementia.

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Bull, Margaret J

2014-06-01

The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers' resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions.

Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey.

Science.gov (United States)

Campbell, Jonathan D; Whittington, Melanie D; Kim, Chong H; VanderVeen, Gina R; Knupp, Kelly G; Gammaitoni, Arnold

2018-03-01

The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. We surveyed DS caregivers at a single institution with a large population of patient with DS. Survey domains included time spent/difficulty performing caregiving tasks (Oberst Caregiving Burden Scale, OCBS); caregiver health-related quality of life (EuroQoL 5D-5L, EQ-5D); and work/activity impairment (Work Productivity and Activity Impairment questionnaire, WPAI). Modified National Health Interview Survey (NHIS) questions were included to assess logistical challenges associated with coordinating medical care. Thirty-four primary caregivers responded, and 30/34 respondents completed the survey. From OCBS, providing transportation, personal care, and additional household tasks required the greatest caregiver time commitment; arranging for child care, communication, and managing behavioral problems presented the greatest difficulty. EuroQoL 5D-5L domains with the greatest impact on caregivers (0=none, 5=unable/extreme) were anxiety/depression (70% of respondents≥slight problems, 34%≥moderate) and discomfort/pain (57% of respondents≥slight problems, 23%≥moderate). The mean EQ-5D general health visual analogue scale (VAS) score (0=death; 100=perfect health) was 67 (range, 11-94). Respondents who scored caregiver health. On the WPAI, 26% of caregivers missed >1day of work in the previous week, with 43% reporting substantial impact (≥6, scale=1-10) on work productivity; 65% reported switching jobs, quitting jobs, or losing a job due to caregiving responsibilities. National Health Interview Survey responses indicated logistical burdens beyond the home; 50% of caregivers made ≥10 outpatient visits in the past year with their child with DS. Caring for patients with DS exerts physical, emotional, and time burdens on caregivers. Supportive services for DS families are identified to highlight an unmet need for DS treatments. Copyright �

A qualitative analysis of adolescent, caregiver, and clinician perceptions of the impact of migraines on adolescents' social functioning.

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Donovan, Elizabeth; Mehringer, Stacey; Zeltzer, Lonnie K

2013-12-01

Migraines dramatically affect adolescents' quality of life. One area of particular importance is the impact of migraines on adolescents' social functioning. To understand the impact of migraines on adolescents' social functioning from multiple informants, we performed semistructured interviews with adolescents who have migraines, their caregivers, and clinicians who treat adolescents who have migraines. Three major themes related to social functioning were identified from the adolescent interviews: The need to be alone; lack of support from siblings; and the feeling of not being understood by others. The caregiver interviews yielded three main themes related to family functioning: that plans can change quickly; that family life revolves around helping the child with the migraine; and parents' feelings of inadequacy in helping their child. There were two main themes derived from the clinician interviews related to perception of family functioning: the importance of parental involvement; and the role of adolescents' school and social lives in migraine prevention. There are a number of unmet needs among adolescents with recurrent migraine and their families. Interviews with adolescents, caregivers, and clinicians suggest a number of areas for intervention. Copyright © 2013 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

Depressive symptoms in Chinese family caregivers of patients with heart failure

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Hu, Xiaolin; Huang, Wenxia; Su, Yonglin; Qu, Moying; Peng, Xingchen

2017-01-01

Abstract Depressive symptoms are related to negative health outcomes in caregivers of patients with HF. Understanding the factors that are associated with depressive symptoms among caregivers is essential to providing appropriate interventions. Little is known about which status and factors are related to depressive symptoms among Chinese caregivers of patients with heart failure. This study aimed to investigate the status of depressive symptoms and to identify the factors that are associated with depressive symptoms in family caregivers of patients with heart failure in China. A cross-sectional design and a convenience sample were used. Participants (N = 134) from 1 hospital in Chengdu were recruited from June 2013 to June 2014. The following measurement tools were used in this study: Center for Epidemiologic Studies Depression Scale, Hospital Anxiety and Depression Scale, Coping Strategies Simplified Coping Style Questionnaire, and Zarit Burden Interview. A hierarchical multiple linear regression analysis was used to determine which factors were associated with depressive symptoms. The results showed that 31% of the caregivers experienced depressive symptoms. The type of payment for treatment (b = −0.312, P caregiving (b = −0.213, P caregiver burden (b = 0.299, P caregivers’ depressive symptoms. Fifty-four percent of the variance in caregivers’ depressive symptoms was explained by these factors. The caregiver depressive symptoms in China were higher than those reported in studies that were conducted in Western countries. Caregiver depressive symptoms can be improved by providing support for new caregivers (with a caregiving duration of less than 1 year), reducing readmissions, easing caregiver burden, and promoting their coping strategies. PMID:28353589

Family caregiver burden in mental illnesses: The case of affective disorders and schizophrenia - a qualitative exploratory study.

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von Kardorff, Ernst; Soltaninejad, Ali; Kamali, Mohammad; Eslami Shahrbabaki, Mahin

2016-01-01

Caregivers of people with mental illnesses often experience a wide range of burdens. Although many studies have confirmed burdens among family caregivers of mentally ill relatives in general, specific knowledge regarding the concrete everyday hassle and existential sorrows from the caregiverś subjective reasoning perspective is lacking. Furthermore, there is little evidence on the possible different effects of affective disorders and schizophrenia on the quality of burden; this is also true with regard to the role of cultural traditions and lay beliefs. The aim of this study was to explore the specific burdens experienced by caregivers of patients with schizophrenia and affective disorders. A qualitative study was conducted by semi-structured interviews with 45 caregivers of patients with schizophrenia and affective disorders. Data were analysed by qualitative content analysis. Eleven encumbering themes resulted from the interviews including incertitude, unawareness, emotional burden, stigma and blame, financial burden, physical burden, restriction in routine, disruption in routine, dissatisfaction with family, relatives, and acquaintances, troubles with patients' adherence to medication, and problems with health services and governmental support. Caring for a person with mental illness affects caregivers emotionally, financially, physically, and it elicits some restrictions in their routine (daily hassles). Finally, it causes conflicts in family relationships. Despite some differences regarding perceived burden among caregivers of schizophrenia and affective disorders, a common pattern of burden could be identified. Thus, authorities should provide adequate financial, educational, and psychosocial supports for caregivers of mental illnesses.

Depressive disorders and family functioning among the caregivers of patients with schizophrenia.

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Osman, C B; Alipah, B; Tutiiryani, M D; Ainsah, O

2010-09-01

To determine the prevalence of depressive disorders among caregivers of patients with schizophrenia, its association with patient's and caregiver's socio-demographic characteristics and family functioning. This was a cross-sectional study of caregivers of patients with schizophrenia at the outpatient clinic, Hospital Permai Johor Bahru, Malaysia. The study was conducted between August and October 2008. A total of 243 caregivers who fulfilled the inclusion criteria were enrolled, of whom 232 completed the self-administered socio-demographic questionnaire, the General Health Questionnaire (GHQ-30) and the McMaster Family Assessment Device. A total of 33 caregivers with the GHQ-30 cut-off point of 7/8 were assessed further by the Mini International Neuropsychiatric Interview to diagnose depressive disorder. The prevalence of psychological distress in our study sample was 14% (n = 33) and that of depressive disorders was 6% (n = 14). There was no association between patients' and caregivers' socio-demographic characteristics with depressive disorders, but there were significant associations between depressive disorders and family functioning dimensions in terms of Communication and Roles. Although the causal link was not established, the results suggested that depression had a significant association with family functioning among caregivers of patients with schizophrenia.

Promoting improved family caregiver health literacy: evaluation of caregiver communication resources.

Science.gov (United States)

Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L

2017-07-01

Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for Caregivers TM . Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for Caregivers TM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for Caregivers TM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Marianismo and Caregiving Role Beliefs Among U.S.-Born and Immigrant Mexican Women.

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Mendez-Luck, Carolyn A; Anthony, Katherine P

2016-09-01

We aimed to explore how women of Mexican-origin conceptualized caregiving as a construct in terms of cultural beliefs, social norms, role functioning, and familial obligations. We examined the personal experiences of U.S-born and immigrant Mexican female caregivers to identify how these 2 groups differed in their views of the caregiver role. We conducted 1-time in-depth interviews with 44 caregivers living in Southern California. Our study was guided by marianismo, a traditional role occupied by women in the Mexican family. We analyzed data from a grounded theory approach involving the constant comparative method to refine and categorize the data. The majority of all caregivers had similar views about caregiving as an undertaking by choice, and almost all caregivers engaged in self-sacrificing actions to fulfill the marianismo role. Despite these similarities, U.S.-born and immigrant caregivers used different words to describe the same concepts or assigned different meanings to other key aspects of caregiving, suggesting that these 2 groups had different underlying motivations for caregiving and orientations to the role. Our findings highlight the complexity of language and culture in underlying caregiving concepts, making the concepts challenging to operationalize and define in a heterogeneous sample of Latinos. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Early Head Start: Factors Associated with Caregiver Knowledge of Child Development, Parenting Behavior, and Parenting Stress

Science.gov (United States)

Belcher, Harolyn M. E.; Watkins, Katara; Johnson, Elizabeth; Ialongo, Nicholas

2007-01-01

This study investigates the role of socioeconomic status, parental mental health, and knowledge of child development on parenting styles and perceived parenting stress in caregivers of children, ages 3 months to 3 years, enrolled in Early Head Start (EHS). Caregivers of EHS students were interviewed using the Knowledge of Infant Development…

Love Shouldn't Hurt: What Do African American Maternal Caregivers Tell Their Daughters About Dating Violence?

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Corona, Rosalie; Gomes, Melissa M.; Pope, Michell; Shaffer, Carla; Yaros, Anna

2016-01-01

The healthy messages parents convey to their adolescents about risk behaviors may be related to better adolescent outcomes. Few studies have examined the types of messages or strategies caregivers use to discuss dating violence with their early adolescents. We conducted semi-structured interviews with 20 African American maternal caregivers of…

Caregiving and Adults with Intellectual Disabilities Affected by Dementia

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Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre

2010-01-01

Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…

Anger and health in dementia caregivers: exploring the mediation effect of optimism.

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López, J; Romero-Moreno, R; Márquez-González, M; Losada, A

2015-04-01

Although previous studies indicate a negative association between caregivers' anger and health, the potential mechanisms linking this relationship are not yet fully understood. The aim of this study was to explore the potential mediating role of optimism in the relationship between anger and caregivers' physical health. Dementia caregivers (n = 108) were interviewed and filled out instruments assessing their anger (reaction), optimism and health (vitality). A mediational model was tested to determine whether optimism partially mediated the relationship between anger and vitality. Angry reaction was negatively associated with optimism and vitality; optimism was positively associated with vitality. Finally, the relationship between angry reaction and vitality decreased when optimism was entered simultaneously. A non-parametric bootstrap approach confirmed that optimism significantly mediated some of the relationship between angry reaction and vitality. These findings suggest that low optimism may help explain the association between caregivers' anger and reduced sense of vitality. The results provide a specific target for intervention with caregivers. Copyright © 2013 John Wiley & Sons, Ltd.

Caregivers' management of schooling for their children with fetal alcohol spectrum disorder.

Science.gov (United States)

Swart, Suretha; Hall, Wendy A; McKee, William T; Ford, Laurie

2014-11-01

In this article we describe a grounded theory study of how caregivers of school-aged children with fetal alcohol spectrum disorder (FASD) managed their children's schooling. We completed 30 interviews with 17 caregivers residing in a western Canadian province, as well as document analysis and 25 hours of participant observation. We used constant comparative analysis to construct our substantive theory: intertwining to fit in. The core variable is an iterative cycle caregivers used to resolve their main concerns: preventing their children from failing academically and in social interactions and preventing themselves from being regarded as unacceptable parents. To intertwine to fit in, caregivers used two strategies: orchestrating schooling and keeping up appearances. They also regulated their relationships with their children. "Intertwining to fit in" contributes to the literature on attachment and parenting and extends explanations about caregivers' advocacy for their children with FASD. The theory has implications for school personnel and practitioners, as well as researchers. © The Author(s) 2014.

Impact of Noncaregiving-Related Stressors on Informal Caregiver Outcomes.

Science.gov (United States)

Austrom, Mary Guerriero; Lu, Yvonne Yueh-Feng; Perkins, Anthony J; Boustani, Malaz; Callahan, Christopher M; Hendrie, Hugh C

2014-08-01

Caregivers of persons with dementia are stressed. Stressors not related to care recipients' needs impact caregiver outcomes, yet are seldom reported. The purpose of this study was to report the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher's exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between the Most Stressful Events and depression (p = 0.016), mobility (p = 0.024) and caregiver issues (p = 0.009) subscales of R-MBPC. Results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressorsas well as the traditional challenges with caregiving related issues. © The Author(s) 2014.

Caregivers' difficulties in activating long-term mental illness patients with low self-esteem.

Science.gov (United States)

Erdner, A; Magnusson, A

2012-03-01

The aim of the study was to describe psychiatric caregivers' perceptions of self-esteem and activities for patients with long-term mental illness. The study design used a qualitative approach, based on an open lifeworld perspective. A total of 13 caregivers at four psychiatric hospital units in a large Swedish city were interviewed about their views on patients' physical activity and/or other pastimes, as well as their self-esteem and its bearing on the patients' well-being. According to the caregivers, it is up to the patients themselves to decide what they wish to occupy themselves with. In the same time the caregivers' opinions are that patients have difficulties to occupy themselves. The caregivers believe that patients' disability is based in a lack of self-esteem, commitment and capacity to realize their wishes. The caregivers in this study argue that activities are valuable for self-esteem and physical health of people with long-term mental illness. The caregivers consider that it is the patient's responsibility to initiate their needs of activities. This means that the caregivers do not use their knowledge about the importance of activities for the patient's health. Search terms: activity, caregivers, mental illness. © 2011 Blackwell Publishing.

Dependency aspect of caregiver burden is uniquely related to cognitive impairment in Veterans.

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Stinson, Jennifer M; Collins, Robert L; Maestas, Kacey Little; Pacheco, Vitor; LeMaire, Ashley; Benge, Jared

2014-01-01

The psychosocial toll of caring for an individual with dementia is an important, if understudied, concept. For practitioners and researchers alike, understanding the relation between patient characteristics and different facets of caregiver burden is important for guiding treatment and prevention efforts. The current study analyzed the dimensions of caregiver burden and the relation between caregiver burden and results of neuropsychological testing. Participants included 243 dyads of caregivers and Veterans referred for neuropsychological evaluation. Caregivers completed the Zarit Burden Interview (ZBI) to assess caregiver burden. Patients completed a battery of neuropsychological tests measuring the domains of attention/processing speed, memory, language, and executive functioning. A principal components analysis of the ZBI revealed a three-factor structure: psychosocial burden, dependency burden, and guilt. Correlations with neuropsychological test performance by Veteran patients suggested that test performance in the memory, attention, processing speed, executive functioning, and emotional functioning domains were solely related to the caregiver dependency burden factor of the ZBI. Additional analyses suggested severity of dementia and number of tests in the impaired range further influenced reported caregiver burden. The current study is one of the few studies examining caregiver burden in relation to neuropsychological functioning in a mixed clinical sample and has important implications for clinical practice.

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke.

Science.gov (United States)

Kamel, Andaleeb Abu; Bond, A Elaine; Froelicher, Erika Sivarajan

2012-04-01

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended. © 2012 Blackwell Publishing Asia Pty Ltd.

"You're dealing with an emotionally charged individual...": an industry perspective on the challenges posed by medical tourists' informal caregiver-companions.

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Casey, Victoria; Crooks, Valorie A; Snyder, Jeremy; Turner, Leigh

2013-07-26

Patients engage in medical tourism when they privately obtain a medical care abroad. Previous research shows that many medical tourists travel abroad with friends and family members who provide support and assistance. Meanwhile, very little is known about this important stakeholder group, referred to here as caregiver-companions. In this article we examine the challenges that can be posed by caregiver-companions and the overall practice of informal caregiving in medical tourism from an industry perspective. Specifically, we report on the findings of interviews conducted with international patient coordinators (IPCs) who work at destination facilities. IPCs come into regular contact with caregiver-companions in their professional positions and thus are ideally suited to comment on trends they have observed among this stakeholder group as well as the challenges they can pose to medical tourists, health workers, and facilities. We conducted 20 semi-structured interviews with 21 IPCs from 16 different facilities across nine countries. Topics probed in the interviews included caregiver-companion roles, IPCs' and others' interaction with caregiver-companions, and potential health and safety risks posed to medical tourists and caregiver-companions. Thematic analysis of the verbatim transcripts was employed. Although most participants encouraged medical tourists to travel with a caregiver-companion, many challenges associated with caregiver-companions were identified. Three themes best characterize the challenges that emerged: (1) caregiver-companions require time, attention and resources; (2) caregiver-companions can disrupt the provision of quality care; and (3) caregiver-companions can be exposed to risks. IPCs pointed out that caregiver-companions may, for example, have a negative impact on the patient through cost of accompaniment or inadequate care provision. Caregiver-companions may also create unanticipated or extra work for IPCs, as additional clients and by

Family caregivers' views on coordination of care in Huntington's disease

DEFF Research Database (Denmark)

Røthing, Merete; Malterud, Kirsti; Frich, Jan C

2015-01-01

BACKGROUND: Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient......'s illness may be unpredictable or not well understood by some of those involved in the treatment and care. AIM: The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals. METHODS......: To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross...

Gendering Guilt among Dependent Family Members' Caregivers.

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Brea, Maria-Teresa; Albar, María-Jesús; Casado-Mejia, Rosa

2016-11-17

This study analyzes guilt among family caregivers of dependent patients, from a gender perspective. A qualitative design was used, conducting in-depth interviews and focus groups. Using purposive sampling, we selected 73 family caregivers and 23 health professionals (family medicine, community nursing, and social work) from the Primary Care District of Seville. The content of the information collected was analyzed in terms of the following categories: a) guilt for abandoning family and friends; b) guilt for the relationship with the dependent person; and c) guilt for placing the relative in a nursing home. To validate the findings, data sources, methodological techniques, and researchers' disciplines were all triangulated. Results indicated that women report more guilt than men for abandoning family and friends, and because of their relationship with the dependent person. However, with respect to nursing home placement, no difference was observed as a function of gender. The high incidence of caregiver guilt needs to be addressed by health professionals to avoid the emergence of other mental health issues.

Impacts of Autistic Behaviors, Emotional and Behavioral Problems on Parenting Stress in Caregivers of Children with Autism

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Huang, Chien-Yu; Yen, Hsui-Chen; Tseng, Mei-Hui; Tung, Li-Chen; Chen, Ying-Dar; Chen, Kuan-Lin

2014-01-01

This study examined the effects of autistic behaviors and individual emotional and behavioral problems on parenting stress in caregivers of children with autism. Caregivers were interviewed with the Childhood Autism Rating Scale and completed the Strength and Difficulties Questionnaire and the Parenting Stress Index Short Form. Results revealed…

Family functioning in severe brain injuries: correlations with caregivers' burden, perceived social support and quality of life.

Science.gov (United States)

Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara

2015-01-01

Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.

The activities and quality of life of caregivers of patients with chronic diseases

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Letícia Zanetti Marchi Altafim

2015-07-01

Full Text Available Introduction: With the increase of the elderly population in our country and, simultaneously, the increasing morbidity rate of chronic-degenerative disease in general, the number of people seeking for attendance at day care centers and hospitals has also increased. Most of the time, these people are also dependent, when they return home, on the care provided by family members: the caregivers. To prevent and treat the problems caused by the stress factors among caregivers contribute to reduce or delay their hospitalization. In addition, improvement on the caregivers’ quality of life could allow them to better help the patients. In this context, this research tried to understand the reality of the lives of caregivers of chronically ill patients, and with this knowledge, implement and evaluate the effectiveness of an intervention proposal. Objective: To attenuate the stress conditions of care activities. Method: The research used interviews with caregivers; these interviews were taped and later transcribed to analyze the content of answers and elaborate the intervention plan, which, in this case, was a course. The course consisted of informative aspects on the disease and daily life activities, as well as the formative aspect on self-knowledge. A quality of life instrument named Caregiver Burden Scale was also applied. After the intervention (course, the Scale was once more applied to verify the data and check for efficacy. Results: Results show the importance of the intervention on the caregivers’ quality of life.

Transition to the new role of caregiving for families of patients with breast cancer: a qualitative descriptive exploratory study.

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Hashemi-Ghasemabadi, Masoumeh; Taleghani, Fariba; Yousefy, Alireza; Kohan, Shahnaz

2016-03-01

Families, especially in Eastern and Muslim countries, routinely accept the responsibility of caring for cancer patients. This study describes the transition to the new role of caregiving from the perspective of family caregivers in Iran as part of the current trend of recognizing the experiences of family members of breast cancer patients from different cultural perspectives. A descriptive exploratory qualitative research approach was used to investigate the experiences of family caregivers of patients with breast cancer in the transition to caregiving. The subjects were 23 family caregivers of breast cancer patients referred to cancer centers at Isfahan University hospitals who were selected by purposive sampling. Data was gathered through in-depth interviews. Interview transcripts were analyzed using conventional content analysis with an inductive approach. Data analysis identified the following categories: grasping a new situation without preparation, perceived inefficiency, infinite absence, and abandoned in the role. Caregivers believed that they were not prepared for their new circumstances and did not have the necessary competence and capabilities to meet the challenges of caregiving. They experienced negative consequences resulting from the difficult responsibility of caregiving. Moreover, they believed that they received limited support from relatives, health-care providers, and the community. The transition to the new role of caregiving is affected by experiences specific to the conditions of the caretakers. When these conditions can be understood and identified, it is possible to provide detailed information for policymaking and planning for family-centered care.

Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient

DEFF Research Database (Denmark)

Lund, Line; Ross, Lone; Petersen, Morten Aagaard

2014-01-01

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...

Experiences of HIV/AIDS home-based caregivers in Vhembe district of the Limpopo Province

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N.S. Mashau

2009-09-01

Full Text Available The purpose of this study was to explore and describe the experiences of HIV and AIDS home-based caregivers in the Vhembe district of Limpopo Province. A qualitative research design which was exploratory, descriptive and contextual was executed with a sample of purposively selected participants who provided home-based care to people living with HIV and AIDS in the Vhembe district of Limpopo Province. Data saturation occurred after in-depth interviews with fifteen participants. In-depth individual interviews and field notes were also used during data collection. The findings reveal that HIV/AIDS home-based caregivers express pain and despair when caring for HIV/AIDS patients. The theme was supported by the following categories and subcategories: problems related to stigma when caring for patients at their homes; stress, burnout, frustration and feelings of helplessness when caring for patients. Recommendations that are described focus on building a working relationship between the home-based caregivers, community and the family.

Paid caregiver motivation, work conditions, and falls among senior clients.

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Lindquist, Lee A; Tam, Karen; Friesema, Elisha; Martin, Gary J

2012-01-01

The purpose of this study was to determine the motivation of paid non-familial caregivers of seniors, understand more about their work conditions, and identify any links to negative outcomes among their senior clients. Ninety-eight paid caregivers (eighty-five female and thirteen male), recruited from multiple sites (i.e. senior centers, shopping malls, local parks, lobbies of senior apartments, caregiver agency meetings) completed face-to-face questionnaires and semi-structured interviews. We found that 60.7% of participants chose to become a caregiver because they enjoyed being with seniors while 31.7% were unable to obtain other work, and 8.2% stated it was a prerequisite to a different health related occupation. Caregivers stated that the most challenging conditions of their work were physical lifting (24.5%), behavioral and psychological symptoms of dementia (24.5%), senior depression/mood changes (18.4%), attachment with impending death (8.2%), missing injuries to client (5.1%), lack of sleep (4.1%), and lack of connection with outside world (3.1%). Caregivers who reported that the best part of their job was the salary, flexible hours, and ease of work were significantly more likely to have clients who fell and fractured a bone than those who enjoyed being with seniors (job characteristics, 62.5% vs. senior enjoyment, 25.6%; pmotivated commonly by their love of seniors and also by their lack of other job opportunities. Paid caregivers frequently face challenging work conditions. When seeking a caregiver for a senior, motivation of the caregiver should be considered when hiring. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Hospitalized elders and family caregivers: a typology of family worry.

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Li, Hong

2005-01-01

This qualitative study explored the kinds of worry that family caregivers experience when their older relatives are hospitalized. Little is known about what kinds of worries family caregivers may have in association with the hospitalizations of older relatives. An understanding of the different patterns of family worry may help health care teams intervene more effectively to meet family caregiver's needs by reducing their anxiety. A qualitative descriptive design with Loftland and Loftland (1984) approach for the study of a phenomenon occurring in a social setting was used. A purposeful sample of 10 participants was obtained that included six family caregivers and four nurses. Participants were recruited from two hospitals in the northwest US. Intensive interviews and participant observations were used for data collection, and Loftland and Loftland's (1984) qualitative approach was used for data analysis. Family worry was defined as family caregivers' felt difficulty in fulfilling their roles because of worry. Four categories of family worry were identified as a result of this study: (i) worry about the patient's condition; (ii) worry about the patient's care received from the health care team; (iii) worry about future care for the patient provided by the family caregiver; and (iv) worry about finances. The findings of this pilot study provide nurses with the initial knowledge of the typology of family worry associated with elderly relatives' hospitalizations. The findings of this study may sensitize the nurses to more precisely evaluate family caregivers' worry about their hospitalized elders and provide more effective nursing interventions to improve outcomes of both patients and their family caregivers.

Orientation to the Caregiver Role Among Latinas of Mexican Origin

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Mendez-Luck, Carolyn A.; John Geldhof, G.; Anthony, Katherine P.; Neil Steers, W.; Mangione, Carol M.; Hays, Ron D.

2016-01-01

Purpose of the Study: To develop the Caregiver Orientation Scale for Mexican-Origin Women and evaluate its psychometric properties. Design and Methods: We developed a questionnaire to measure domains of cultural orientation to the caregiver role based on formative research and on the Cultural Justifications for Caregiving Scale. We conducted a series of exploratory factor analyses (EFAs) on data collected from 163 caregivers. We estimated internal consistency reliability (Cronbach’s coefficient alpha) and assessed construct validity by estimating correlations between all latent factors and self-rated health, interview language, and weekly hours of care. Results: EFAs suggested four factors representing familism, obligation, burden, and caregiving intensity that displayed good fit (χ2 (df = 63) = 70.52, p = .24; RMSEA = .03 [90% CI: 0.00, 0.06]; comparative fit index = .99). Multi-item scales representing the four domains had coefficient alphas ranging from .68 to .86. Obligation was positively associated with burden (.46, p < .001) and intensity (.34, p < .01), which were themselves positively correlated (.63, p < .001). Familism was positively associated with obligation (.25, p < .05) yet negatively associated with burden (−.35, p < .01) and intensity (−.22, p < .05). Weekly hours of care were positively associated with burden (.26, p < .01) and intensity (.18, p < .05), whereas self-rated health and burden (−.21, p < .05) and Spanish language and intensity (−.31, p < .001) were negatively correlated. Implications: The study shows that Mexican-origin caregiver orientation is multidimensional and that caregivers may have conflicting motivations for caregiving. PMID:27342443

Understanding Discrepancy in Perceptions of Values: Individuals with Mild to Moderate Dementia and Their Family Caregivers

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Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.

2011-01-01

Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to…

Being concerned: caregiving for Taiwanese mothers of a child with cerebral palsy.

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Huang, Yu-Ping; Kellett, Ursula; St John, Winsome

2012-01-01

This article explores the Chinese social context and provides insight into Taiwanese mothers' challenging experiences when a disabled child is born into their families. International research indicates that barriers to maternal caregiving for a disabled child revolve around challenging relationships. Giving birth to a disabled child creates a huge challenge for mothers in Chinese society. Data were collected using in-depth interviews and journaling methods. A hermeneutic phenomenological approach, informed by the philosophical world views of Heidegger and Gadamer, provided theoretical guidance in revealing and interpreting mothers' experiences. Interviews were carried out with a purposeful sample of 15 mothers who were primary caregivers for a child aged between 0-18 years who was diagnosed with cerebral palsy and used Mandarin or Taiwanese as their primary language. Shared meanings revealed four modes of being concerned: (1) experiencing burden as a sole primary caregiver; (2) managing the challenges by balancing demands; (3) being marginalised by others; and (4) encountering limited or no professional support. Taiwanese mothers face the strain of managing barriers to caregiving in contexts in which their children are not supported or acknowledged as being important contributors to family and Chinese society at large. This study highlights how the family can be important to caregiving mothers in traditional Chinese family life. Poor support and dynamics will emerge when family members regard disability as a loss of face or a stigma. By learning from Taiwanese mothers who accommodate barriers to caregiving on a daily basis, nurses can seize the impetus to explore ways of reconceptualising nursing practice with families and people with disabilities. The aim is to explore ways that will ultimately align intentions and caring processes and foster coping and positive reward in caring, thereby creating a context that is stress reducing and therapeutic. © 2011 Blackwell

Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India.

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Sinha, P; Desai, N G; Prakash, O; Kushwaha, S; Tripathi, C B

2017-04-01

Caregiver burden in dementia is an important area of research. Providing care for a relative can be a potent source of chronic stress and can have deleterious consequences for both the physical and emotional health of caregivers. This study aims to evaluate the burden of care in caregivers of patients with Alzheimer-type dementia and compare it with elderly psychosis; and to also study the factors that influence burden of care in Alzheimer's dementia. Thirty-two caregiver-patient dyads of Alzheimer-type dementia were compared with thirty-two caregiver-patient dyads of psychosis. Cognitive assessment, abilities to perform activities of daily living and severity of dementia was assessed in the patients. Zarit Burden Interview was used to study the caregiver burden in both groups. The mean burden score in dementia caregivers was high at 47.7, whereas the mean burden score for elderly psychosis caregivers was lesser at 33.6, and this difference in mean burden scores was found to be statistically significant. Spouses had the highest mean burden scores of 53.48. Caregiver burden in dementia was positively correlated with cognitive impairment and inability to carry out ADLs. Presence of psychological distress in caregivers was also an indicator for greater caregiver burden in dementia. The study revealed that dementia carries a greater caregiver burden when compared with elderly patients with psychosis. Innovative interventions are needed to remove burden from caregiving, making it a meaningful practice integral to the Indian society. Copyright © 2017 Elsevier B.V. All rights reserved.

The lived experience of caregivers of persons with heart failure: A phenomenological study.

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Petruzzo, Antonio; Paturzo, Marco; Naletto, Monica; Cohen, Marlene Z; Alvaro, Rosaria; Vellone, Ercole

2017-10-01

Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy. To describe the lived experience of the caregivers of HF patients. A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness. Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient. The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study.

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Geng, Dan; Ou, RuWei; Miao, XiaoHui; Zhao, LiHong; Wei, QianQian; Chen, XuePing; Liang, Yan; Shang, HuiFang; Yang, Rong

2017-10-01

This study surveys the quality of life of amyotrophic lateral sclerosis patients and the factors associated with amyotrophic lateral sclerosis patients' self-perceived burden and their caregivers' burden. Burdens of patients with amyotrophic lateral sclerosis and their caregivers in Chinese population are largely unknown. A cross-sectional study was conducted among 81 pairs of amyotrophic lateral sclerosis patients and their caregivers. Amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden were assessed by the Self-Perceived Burden Scale and Zarit-Burden Interview, respectively. Quality of life of amyotrophic lateral sclerosis patients was measured using the World Health Organization Quality of Life-Bref. The amyotrophic lateral sclerosis Functional Rating Scale-Revised questionnaire was used to estimate patients' physical function. Both patients and caregivers reported a mild to moderate burden. The World Health Organization quality of life-Bref scores were decreased in respondents with lower amyotrophic lateral sclerosis Functional Rating Scale-Revised, higher Self-Perceived Burden Scale and higher Zarit-Burden Interview scores. Self-Perceived Burden Scale scores were associated with patients' knowledge of amyotrophic lateral sclerosis, respiratory function and female sex. Zarit-Burden Interview scores were associated with caregivers' age, patients' motor function and out-of-pocket payment. With increase in amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden, quality of life of amyotrophic lateral sclerosis patients decreased. Female patients, who had known more about the disease, and those with severe respiratory dysfunction were subject to higher self-perceived burden. Older caregivers and caregivers of patients with severe motor dysfunction and more out-of-pocket payment experienced more care burdens. Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients

Nurses caring for the spirit: patients with cancer and family caregiver expectations.

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Taylor, Elizabeth Johnston

2003-01-01

To determine what patients with cancer and primary family caregivers expect from nurses with regard to having their spiritual needs addressed. Descriptive, cross-sectional, qualitative study using Miles and Huberman s approach to data reduction. Outpatient and inpatient settings in a county hospital and a comprehensive cancer center, both located in a large, southwestern, metropolitan area. 28 African American and Euro-American adult patients with cancer and primary family caregivers were purposively selected to provide variation of experiences (e.g., religious backgrounds). In-depth, semistructured, tape-recorded interviews conducted by the investigator. Analysis of transcribed interviews concurrently with data collection followed a process of data concentration, data display, and conclusion drawing. Spiritual needs, spiritual care. Informants identified nursing approaches for spiritual needs, including kindness and respect; talking and listening; prayer; connecting with symmetry, authenticity, and physical presence; quality temporal nursing care; and mobilizing religious or spiritual resources. To provide spiritual care, nurses must possess requisites of a personal, relational, or professional nature. Although some patients or caregivers do not want overt forms of spiritual care, others are eager for them. Many recognize nonreligious actions or attitudes that nurses can practice to care for spiritual needs. Nurses must consider how they can address patient preconceptions and requisites for spiritual caregiving. Nurses may need to educate the public regarding their role as holistic and spiritual healthcare providers.

Neuro-oncology family caregivers' view on keeping track of care issues using eHealth systems: it's a question of time.

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Boele, Florien W; van Uden-Kraan, Cornelia F; Hilverda, Karen; Weimer, Jason; Donovan, Heidi S; Drappatz, Jan; Lieberman, Frank S; Verdonck-de Leeuw, Irma; Sherwood, Paula R

2017-08-01

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients' best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers' satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

Quality of Life in Caregivers of Children and Adolescents with Intellectual Disabilities: Use of WHOQOL-BREF Survey

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Lin, Jin-Ding; Hu, Jung; Yen, Chia-Feng; Hsu, Shang-Wei; Lin, Lan-Ping; Loh, Ching-Hui; Chen, Mei-Hua; Wu, Sheng-Ru; Chu, Cordia M.; Wu, Jia-Ling

2009-01-01

The present study based on World Health Organization quality of life (WHOQOL-BREF) scale to examine quality of life of the caregivers caring for their children/adolescents with intellectual disabilities in Taiwan, and the factors contributing to their quality of life. Structured interviews were conducted with 597 caregivers of children/adolescents…

Do informal caregivers for elderly in the community use support measures? A qualitative study in five European countries.

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Willemse, Evi; Anthierens, Sibyl; Farfan-Portet, Maria Isabel; Schmitz, Olivier; Macq, Jean; Bastiaens, Hilde; Dilles, Tinne; Remmen, Roy

2016-07-16

Informal caregivers are essential figures for maintaining frail elderly at home. Providing informal care can affect the informal caregivers' physical and psychological health and labour market participation capabilities. They need support to prevent caregiver burden. A variety of existing support measures can help the caregiver care for the elderly at home, but with some limitations. The objective of this review was to explore the experiences of informal caregivers caring for elderly in the community with the use of supportive policy measures in Belgium and compare these to the experiences in other European countries. An empirical qualitative case study research was conducted in five European countries (Belgium, The Netherlands, Luxembourg, France and Germany). Semi-structured interviews were conducted with informal caregivers and their dependent elderly. Interview data from the different cases were analysed. In particular data from Belgium was compared to data from the cases abroad. Formal services (e.g. home care) were reported to have the largest impact on allowing the caregiver to care for the dependent elderly at home. One of the key issues in Belgium is the lack of timely access to reliable information about formal and informal services in order to proactively support the informal caregiver. Compared to the other countries, informal caregivers in Belgium expressed more difficulties in accessing support measures and navigating through the health system. In the other countries information seemed to be given more timely when home care was provided via care packages. To support the informal caregiver, who is the key person to support the frail elderly, fragmentation of information regarding supportive policy measures is an important issue of concern.

From home to 'home': Mapping the caregiver journey in the transition from home care into residential care.

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Hainstock, Taylor; Cloutier, Denise; Penning, Margaret

2017-12-01

Family caregivers play a pivotal role in supporting the functional independence and quality of life of older relatives, often taking on a wide variety of care-related activities over the course of their caregiving journey. These activities help family members to remain in the community and age-in-place for as long as possible. However, when needs exceed family capacities to provide care, the older family member may need to transition from one care environment to another (e.g., home care to nursing home care), or one level of care to another (from less intense to more intensive services). Drawing upon qualitative interview data collected in a populous health region in British Columbia, Canada, this study explores the roles and responsibilities of family caregivers for family members making the care transition from home care to residential care. A thematic analysis of the interview transcripts resulted in the development of a conceptual framework to characterize the "Caregiver Journey" as a process that could be divided into at least three phases: 1) Precursors to transition - recognizing frailty in family members and caregivers prior to transition; 2) Preparing to transition into residential nursing home care (RC) and 3) Post-transition: Finding a new balance - where caregivers adjust and adapt to new caregiving responsibilities. Our analyses revealed that the second phase is the most complex involving a consideration of the various activities, and roles that family caregivers take on to prepare for the care transition including: information gathering, advocacy and system navigation. We conclude that there is a need for family caregivers to be better supported during care transitions; notably through ongoing and enhanced investments in strategies to support caregiver communication and education. Crown Copyright © 2017. Published by Elsevier Inc. All rights reserved.

Shaping mutuality: nurse-family caregiver interactions in caring for older people with depression.

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Jeon, Yun-Hee

2004-06-01

This paper reports on the research findings derived from a grounded theory study that examined the processes through which community mental health nurses work with families of older people with depression. Data were collected through semistructured, in-depth interviews with six community mental health nurses and seven family caregivers of older people with depression, and observations of their interactions in natural settings. Data collection and analysis were guided by theoretical sampling and the constant comparative process. The findings indicate that the nurse-family caregiver relationship involves working towards mutuality, which is shaped by both the nurse and family caregiver. It is through the process of "shaping mutuality" that a nurse and family caregiver learn to collaborate, and achieve their individual goals and desired outcomes, both for the patient and for themselves.

Sound Continuing Bonds with the Deceased: The Relevance of Music, Including Preloss Music Therapy, for Eight Bereaved Caregivers

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O'Callaghan, Clare C.; McDermott, Fiona; Hudson, Peter; Zalcberg, John R.

2013-01-01

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…

Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

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Sorrell, Jeanne M

2014-03-01

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.

Knowledge brokers, companions, and navigators: a qualitative examination of informal caregivers' roles in medical tourism.

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Casey, Victoria; Crooks, Valorie A; Snyder, Jeremy; Turner, Leigh

2013-12-01

Many studies examining the phenomena of medical tourism have identified health equity issues associated with this global health services practice. However, there is a notable lack of attention in this existing research to the informal care provided by the friends and family members who typically accompany medical tourists abroad. To date, researchers have not examined the care roles filled by informal caregivers travelling with medical tourists. In this article, we fill this gap by examining these informal caregivers and the roles they take on towards supporting medical tourists' health and wellbeing. We conducted 21 interviews with International Patient Coordinators (IPCs) working at medical tourism hospitals across ten countries. IPCs work closely with informal caregivers as providers of non-medical personal assistance, and can therefore offer broad insight on caregiver roles. The interviews were coded and analyzed thematically. Three roles emerged: knowledge broker, companion, and navigator. As knowledge brokers, caregivers facilitate the transfer of information between the medical tourist and formal health care providers as well as other staff members at medical tourism facilities. The companion role involves providing medical tourists with physical and emotional care. Meanwhile, responsibilities associated with handling documents and coordinating often complex journeys are part of the navigation role. This is the first study to examine informal caregiving roles in medical tourism. Many of the roles identified are similar to those of conventional informal caregivers while others are specific to the transnational context. We conclude that these roles make informal caregivers an integral part of the larger phenomenon of medical tourism. We further contend that examining the roles taken on by a heretofore-unconsidered medical tourism stakeholder group sheds valuable insight into how this industry operates and that such knowledge is necessary in order to respond to

Caregiving burden in foreign domestic workers caring for frail older adults in Singapore.

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Ha, Ngoc Huong Lien; Chong, Mei Sian; Choo, Robin Wai Munn; Tam, Wai Jia; Yap, Philip Lin Kiat

2018-03-21

Although foreign domestic workers (FDWs) play a significant role in caring for frail seniors in Singapore and are vulnerable to caregiving burden, there has been little research conducted hitherto. We explored caregiver burden and its determinants in this study. FDWs (N = 221, M age = 32.3, SD = 6.23) recruited from a hospital geriatric unit completed the Zarit Burden Interview (ZBI) administered in English, Bahasa Melayu, or Burmese. Univariate and multivariate regression were employed to investigate factors influencing caregiving burden in FDWs. Majority were Indonesians (60.0%), married (57.5%) with children (62.4%), with secondary-level education (59.7%), and providing care for >1 year (79.9%). Importantly, 25.1% reported physical health problems and 23.1% encountered language difficulties with employers. Univariate analysis revealed three significant factors associated with caregiving burden: nationality (p Indonesian and Burmese counterparts. The study highlights caregiver burden in FDWs and potential ways to alleviate it by empowering FDWs with dementia-specific caregiving skills, providing language training opportunities, and supporting particular FDW ethnic groups with more emotional and practical help.

An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda.

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Nakigudde, Janet; Mutamba, Byamah Brian; Bazeyo, William; Musisi, Seggane; James, Okello

2016-07-22

Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome. We used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building. Emergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome. The findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.

Quality of life and burden in caregivers of patients with epilepsy.

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Westphal-Guitti, Ana Carolina; Alonso, Neide Barreira; Migliorini, Rosa Cristina Vaz Pedroso; da Silva, Tatiana Indelicato; Azevedo, Auro Mauro; Caboclo, Luís Otávio Sales Ferreira; Sakamoto, Américo Ceiki; Yacubian, Elza Márcia Targas

2007-12-01

The purpose of this study was to compare quality of life and burden in 100 caregivers of adolescent and adult patients with epilepsy that started in adolescence. We invited caregivers of 50 patients with temporal lobe epilepsy (TLE) related to mesial temporal sclerosis and caregivers of 50 patients with juvenile myoclonic epilepsy (JME) to participate. After the caregivers answered a sociodemographic questionnaire, they answered the Brazilian version of the Burden Interview (BI) Scale and we assessed their quality of life using the 36-Item Short-Form Health Survey (SF-36). The mean ages of patients were 25.4 and 36.4 years and epilepsy duration was 14 and 25.6 years in the JME and TLE groups, respectively. We found a mild to moderate burden on caregivers in both groups, with a BI average score of 25.5 for JME and 30.7 for TLE. Caregivers in the JME group had lower scores in all domains of the SF-36 and reported higher burden. Low scores were also seen in three domains for the TLE group. These results suggest that caregivers of patients with both epileptic syndromes experience interference in their lives. When we compared the two groups, we found no difference between caregiver data on SF-36 and BI. Quality of life was significantly compromised in caregivers of patients with JME and TLE, and the two groups were burdened to a similar degree (mild to moderate). Nurses can carry out psychoeducative programs with the objective of diagnosing the impact of epilepsy in the family, decreasing burden, and improving quality of life for caregivers.

[Correlation between quality of life and morbidity of the caregivers of elderly stroke patients].

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Santos, Nilce Maria de Freitas; Tavares, Darlene Mara Dos Santos

2012-08-01

The objective of this study was to describe the sociodemographic characteristics and the quality of life of the caregivers of elderly individuals with a stroke history, and correlate morbidity with the caregivers' quality of life scores. This is a cross-sectional household survey that interviewed the caregivers of elderly individuals using the following tools: a semi-structured instrument; the World Health Organization Quality of life-BREF; and the Brazilian Multidimensional Functional Assessment Questionnaire. Descriptive analysis and Pearson's correlation (psalary (34.8%). The highest quality of life score was in the social relations domain (67.57) and the lowest was in the environmental domain (54.82). The highest number of caregiver morbidities correlated with the lowest scores in all quality of life domains.

Caregiver's Burden and Quality of Life: Caring for Physical and Mental Illness

Directory of Open Access Journals (Sweden)

Salvatore Settineri

2014-01-01

Full Text Available Several studies have been focused on the quality of life of caregivers caring for patients with exclusively physical or mental diseases, but little is known about the differences related to the burden experienced. This study had as its subject the burden of caregivers and their quality of life involved in helping patients with diseases (1 physical, (2 mental and (3 both pathological conditions. We interviewed 294 caregivers of outpatients undergoing physiotherapic, psychiatric and neuroriabilitative treatment. The evaluation was carried out with three instruments: an informative questionnaire, the Caregiver Burden Inventory (CBI and the Quality of Life Index (QoL -I. Results show that both the burden and the quality of life are significantly worse for caregivers who care for patients with both physical and mental diseases. Caregivers most disadvantaged are those who indicate as a reason of care the sense of duty rather than the affection. Finally, the sons and daughters, differently from the parents, showed a greater burden of required time and a lower quality of life. The investigation of the motivational aspects of the caregivers and the increased knowledge of the differences between the emotional experience of parents and children can contribute to the definition of more specific psycho-educational interventions and support.

Linking theory with qualitative research through study of stroke caregiving families.

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Pierce, Linda L; Steiner, Victoria; Cervantez Thompson, Teresa L; Friedemann, Marie-Luise

2014-01-01

This theoretical article outlines the deliberate process of applying a qualitative data analysis method rooted in Friedemann's Framework of Systemic Organization through the study of a web-based education and support intervention for stroke caregiving families. Directed by Friedemann's framework, the analytic method involved developing, refining, and using a coding rubric to explore interactive patterns between caregivers and care recipients from this 3-month feasibility study using this education and support intervention. Specifically, data were gathered from the intervention's web-based discussion component between caregivers and the nurse specialist, as well as from telephone caregiver interviews. A theoretical framework guided the process of developing and refining this coding rubric for the purpose of organizing data; but, more importantly, guided the investigators' thought processes, allowing them to extract rich information from the data set, as well as synthesize this information to generate a broad understanding of the caring situation. © 2013 Association of Rehabilitation Nurses.

Online stroke forum as source of data for qualitative research: insights from a comparison with patients' interviews.

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Jamison, James; Sutton, Stephen; Mant, Jonathan; De Simoni, Anna

2018-03-30

To determine the appropriateness of an online forum compared with face-to-face interviews as a source of data for qualitative research on adherence to secondary prevention medications after stroke. A comparison of attributes of two data sources, interviews and a forum, using realistic evaluation; a comparison of themes around adherence according to the Perceptions and Practicalities Approach (PAPA) framework. Interviews were conducted in UK GP practices in 2013 and 2014; online posts were written by UK stroke survivors and family members taking part in the online forum of the Stroke Association between 2004 and 2011. 42 interview participants: 28 stroke survivors (age range 61-92 years) and 14 caregivers (85% spouses). 84 online forum participants: 49 stroke survivors (age range 32-72 years) and 33 caregivers (60% sons/daughters). 10 attributes were identified within the two data sources and categorised under three domains (context, mechanisms and outcomes). Participants' characteristics of forum users were often missing. Most forum participants had experienced a stroke within the previous 12 months, while interviewees had done so 1-5 years previously.All interview themes could be matched with corresponding themes from the forum. The forum yielded three additional themes: influence of bad press on taking statins, criticisms of clinicians' prescribing practices and caregiver burden in assisting with medications and being advocates for survivors with healthcare professionals. An online forum is an appropriate source of data for qualitative research on patients' and caregivers' issues with adherence to secondary prevention stroke medications and may offer additional insights compared with interviews, which can be attributed to differences in the approach to data collection. © 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.

Compassionate Love in Individuals With Alzheimer’s Disease and Their Spousal Caregivers: Associations With Caregivers’ Psychological Health

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Monin, Joan K.; Schulz, Richard; Feeney, Brooke C.

2015-01-01

Purpose of the Study: To examine whether compassionate love in both individuals with Alzheimer’s disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Design and Methods: Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. Results: As hypothesized, both AD individuals’ and caregivers’ compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers’ compassionate love mediated the association between AD individuals’ compassionate love and caregivers’ burden as well as the association between AD individuals’ compassionate love and caregivers’ positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers’ compassionate love and less caregiver depressive symptoms. Implications: Results suggest that AD individuals’ compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers’ and AD individuals’ feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners’ compassionate love may benefit caregivers. PMID:24534607

When LVAD Patients Die: The Caregiver's Mourning.

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Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo

2016-05-01

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.

Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: the role of family caregiver gender.

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Hsiao, Chiu-Yueh

2010-12-01

The purpose of this study was to assess gender effects on family demands, social support and caregiver burden as well as to examine contributing factors of caregiver burden in caring for family members with mental illness. Providing continued care and support for people with mental illness is demanding and challenging. Findings of earlier caregiving studies on the role of caregiver gender in response to caregiver burden and caregiving-related factors have been inconsistent. Little research has been undertaken to examine gender effect on family demands, social support and caregiver burden in Taiwanese family caregivers of individuals with mental illness. Cross-sectional, descriptive correlation design. Data from 43 families, including at least one male and female family caregiver in each family, were analysed using descriptive statistics, principal component analysis and mixed linear modelling. Demographic data, Perceived Stress Scale, Perceived Social Support and Caregiver Burden Scale-Brief were used to collect data. Female family caregivers perceived less social support and experienced higher degrees of caregiver burden compared with male family caregivers. In contrast, no significant gender effect was associated with family demands. Family caregivers with greater family demands and less social support experienced higher degrees of caregiver burden. The results reinforced those of previously published studies that caregiver burden is highly prevalent among female family caregivers. Caregiver gender appears to be highly valuable for explaining family demands, social support and caregiver burden. Health care professionals should continue to collaborate with family caregivers to assess potential gender effects on available support and design gender-specific interventions to alleviate caregiver burden. © 2010 Blackwell Publishing Ltd.

COPING SKILLS OF IRANIAN FAMILY CAREGIVERS' IN CARETAKING OF PATIENTS UNDERGOING HAEMODIALYSIS: A QUALITATIVE STUDY.

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Eslami, Ahmad Ali; Rabiei, Leili; Abedi, Heidar Ali; Shirani, Majid; Masoudi, Reza

2016-09-01

Coping skills enable caregivers to establish and maintain supportive relationships with the haemodialysis patients they care for. These skills are very important in terms of social support, promotion of mental health and social and family relations. The aim of this study is to investigate the coping skills of Iranian family caregivers as they take care of patients undergoing haemodialysis. Twenty participants were selected for the study through purposive sampling. The data gathering techniques used for the research were in-depth and unstructured interviews. The researchers used an inductive thematic analysis approach to analyse the data generated from the interviews. Four main themes emerged from the data: help-seeking skills, self-nurturing skills, time management skills and stress management skills. The focus of attention was on the stress management coping skills of the caregivers of haemodialysis patients together with their ability to cope with complex problems. Healthcare providers, by taking into account these skills and strategies of empowerment, can help other caregivers of haemodialysis patients cope with their heavy care conditions and better define their purposes in caretaking. © 2016 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Profile of Home-based Caregivers of Bedridden Patients in North India.

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Bains, Puneet; Minhas, Amarjeet Singh

2011-04-01

Caregiving to bedridden patients in India is set to become a major problem in future. To ascertain the profile of caregivers for the adult bedridden patients in Chandigarh, India. This cross-sectional study was conducted on 100 purposively selected bedridden people. The Katz Index of the activities of daily living was used to ascertain their degree of disability. Patients and families were interviewed about the patterns of care provision. The mean age of subjects was 69 years. A majority (68%) of them lived in joint families. All of them required assistance in bathing, dressing, toileting, and transfer. In 54% of the cases someone was hired to look after the subjects. A majority of the caregivers (82%) were family members. All caregivers were untrained. In 35% of the cases unqualified practitioners were consulted, while in 59% of the cases government hospitals were consulted. Most patients (78) were given medicines on time. Complications like urinary tract infection (39%) and pressure ulcers (54%) were reported; 57% of the patients reported satisfaction with the care provided. The main source of caregivers for the bedridden was the family. Bedridden people had high rates of medical complications. There is a need for formal training for the caregivers.

Profile of home-based caregivers of bedridden patients in North India

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Puneet Bains

2011-01-01

Full Text Available Background: Caregiving to bedridden patients in India is set to become a major problem in future. Objective: To ascertain the profile of caregivers for the adult bedridden patients in Chandigarh, India. Materials and Methods: This cross-sectional study was conducted on 100 purposively selected bedridden people. The Katz Index of the activities of daily living was used to ascertain their degree of disability. Patients and families were interviewed about the patterns of care provision. Results: The mean age of subjects was 69 years. A majority (68% of them lived in joint families. All of them required assistance in bathing, dressing, toileting, and transfer. In 54% of the cases someone was hired to look after the subjects. A majority of the caregivers (82% were family members. All caregivers were untrained. In 35% of the cases unqualified practitioners were consulted, while in 59% of the cases government hospitals were consulted. Most patients (78 were given medicines on time. Complications like urinary tract infection (39% and pressure ulcers (54% were reported; 57% of the patients reported satisfaction with the care provided. Conclusion: The main source of caregivers for the bedridden was the family. Bedridden people had high rates of medical complications. There is a need for formal training for the caregivers.

Caregiver experiences and perceptions of stroke

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Mary Thomas

2008-11-01

Full Text Available With the increasing prevalence of people in developing countries who suffer strokes, the long-term care of people who have had a stroke and who are living with disabilities has substantial consequences for caregivers and their respective families. As the caregiver plays a pivotal role in the rehabilitation of the people who have had a stroke, the objectives of this study constitute an investigation into the complexities of caregiving, including both perceptions and experiences of the healthcare system. Semi-structured interviews were utilised to elicit post-stroke experiences of six caregivers. The challenge the South African context adds to these experiences was probed. The data were analysed qualitatively by thematic and content analysis. Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available. The results are interpreted within a biopsychosocial approach, concluding with the concerns raised by caregivers on the support they require from the healthcare system in order to provide home-based care. Opsomming Met die toenemende voorkoms van beroerte in ontwikkelende lande bring die langdurige versorging van pasiënte met gestremdheid beduidende gevolge vir sorggewers en hulle onderskeie gesinne mee. Aangesien die sorggewer ‘n sleutelrol in die rehabilitasie van die beroertepasiënt speel, behels die doelstellings van hierdie studie ‘n ondersoek na die verwikkeldhede van versorging, wat sowel persepsies as ondervinding van die gesondheidsorgstelsel insluit. Semi- gestruktureerde onderhoude is aangewend om die na-beroerte ondervindings van ses sorggewers te peil. Die uitdaging wat die Suid- Afrikaanse konteks tot hierdie ondervindings meebring is ondersoek. Die data is kwalitatief

Neuropsychiatric Symptoms in Parkinson’s Disease Dementia Are Associated with Increased Caregiver Burden

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Yoon-Sang Oh

2015-01-01

Full Text Available Objective Neuropsychiatric symptoms are common in Parkinson’s disease dementia (PDD. Frequent and severe neuropsychiatric symptoms create high levels of distress for patients and caregivers, decreasing their quality of life. The aim of this study was to investigate neuropsychiatric symptoms that may contribute to increased caregiver burden in PDD patients. Methods Forty-eight PDD patients were assessed using the 12-item Neuropsychiatric Inventory (NPI to determine the frequency and severity of mental and behavioral problems. The Burden Interview and Caregiver Burden Inventory were used to evaluate caregiver burden. Results All but one patient showed one or more neuropsychiatric symptoms. The three most frequent neuropsychiatric symptoms were apathy (70.8% and anxiety (70.8%, followed by depression (68.7%. More severe neuropsychiatric symptoms were significantly correlated with increased caregiver burden. The domains of delusion, hallucination, agitation and aggression, anxiety, irritability and lability, and aberrant motor behavior were associated with caregiver stress. After controlling for age and other potential confounding variables, total NPI score was significantly associated with caregiver burden. Conclusions The results of this study confirm that neuropsychiatric symptoms are frequent and severe in patients with PDD and are associated with increased caregiver distress. A detailed evaluation and management of neuropsychiatric symptoms in PDD patients appears necessary to improve patient quality of life and reduce caregiver burden.

Barriers to mental health service use among distressed family caregivers of lung cancer patients.

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Mosher, C E; Given, B A; Ostroff, J S

2015-01-01

Although family caregivers of patients with lung and other cancers show high rates of psychological distress, they underuse mental health services. This qualitative study aimed to identify barriers to mental health service use among 21 distressed family caregivers of lung cancer patients. Caregivers had not received mental health services during the patient's initial months of care at a comprehensive cancer centre in New York City. Thematic analysis of interview data was framed by Andersen's model of health service use and Corrigan's stigma theory. Results of our analysis expand Andersen's model by providing a description of need variables (e.g. psychiatric symptoms), enabling factors (e.g. finances), and psychosocial factors associated with caregivers' non-use of mental health services. Regarding psychosocial factors, caregivers expressed negative perceptions of mental health professionals and a desire for independent management of emotional concerns. Additionally, caregivers perceived a conflict between mental health service use and the caregiving role (e.g. prioritising the patient's needs). Although caregivers denied stigma associated with service use, their anticipated negative self-perceptions if they were to use services suggest that stigma may have influenced their decision to not seek services. Findings suggest that interventions to improve caregivers' uptake of mental health services should address perceived barriers. © 2014 John Wiley & Sons Ltd.

Prevalence of irritable bowel syndrome in caregivers of patients with chronic diseases.

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Remes-Troche, J M; Torres-Aguilera, M; Montes-Martínez, V; Jiménez-García, V A; Roesch-Dietlen, F

2015-06-01

Caregivers are an at-risk population for psychic and physical diseases such as irritable bowel syndrome (IBS). However, it is not known whether providing care for the chronically ill patient can be considered a risk factor for developing IBS. In this study, our aim was to evaluate the prevalence of IBS according to the Rome II criteria in a group of caregivers. A cross-sectional study was conducted through an evaluation of caregivers of chronically ill patients. Subjects completed questionnaires including the Rome II Modular Questionnaire, the Hospital Anxiety and Depression Scale, the Zarit Caregiver Burden Interview (ZCBI) (an instrument for evaluating the burden experienced by caregivers), and the irritable bowel syndrome quality of life (IBS-QoL) questionnaire. Ninety-six primary caregivers (mean age was 43.6 ± 13.7 years and 87% were women) were evaluated. The mean length of time providing care was 37.6 months (3-288 months). Forty-seven caregivers (49%) presented with IBS. The caregivers with IBS had higher scores in the global ZCBI score (47 ± 8 vs 28 ± 8, p = 0.001) and on the anxiety and depression scale (p = 0.001) than those that did not have IBS. A total of 72% were diagnosed with caregiver stress syndrome; 42 of them had IBS according to the Rome II questionnaire (60% vs 18%, p = 0.001, relative risk 3.28, 95% CI: 1.4-7.4). Caregivers of chronically ill patients have a high prevalence of IBS, which is associated with depression, anxiety, and poor QoL. © 2015 John Wiley & Sons Ltd.

Deep brain stimulation for patients with Parkinson's disease: Effect on caregiver burden.

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Crespo-Burillo, J A; Rivero-Celada, D; Saenz-de Cabezón, A; Casado-Pellejero, J; Alberdi-Viñas, J; Alarcia-Alejos, R

2018-04-01

Our aim is to assess the burden on caregivers of patients with Parkinson's disease treated with deep brain stimulation (DBS) compared to those caring for patients at advanced stages and undergoing other treatments. We have also assessed the variables associated with presence of caregiver overload. We included consecutive patients with Parkinson's disease treated with DBS. Our control group included patients in advanced stages of Parkinson's disease undergoing other treatments. Patients were assessed with the following scales: UPDRS-II, UPDRS-III, UPDRS-IV, Hoehn and Yahr, Schwab & England, Barthel, PDQ-39, MoCA, Apathy Evaluation Scale, HADS, and the abbreviated QUIP. Caregiver burden was evaluated with the Zarit caregiver burden interview and their moods were assessed with the HADS scale. We included 11 patients treated with DBS and 11 with other treatments. For patients treated with DBS, we observed a better quality of life according to the PDQ-39 questionnaire (P=.028), and a lower score on the HADS anxiety subscale (P=.010). Caregiver overload was observed in 54.5% of the caregivers of patients in both groups (P=1.000); Zarit scores were similar (P=.835). Caregiver overload was associated with higher scores on the caregiver's Apathy Evaluation Scale (P=.048) and on the HADS anxiety subscale (P=.006). According to our results, treatment with DBS is not associated with lower caregiver burden. Apathy in patients and anxiety in caregivers are factors associated with the appearance of overload. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

Caregiver Depression

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... 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 ...

Caregiving burden and its determinants in Polish caregivers of stroke survivors.

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Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech

2014-10-27

Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver's sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden. Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p emotional state and the level of patients' dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.

LGBT Caregiver Concerns

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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 ...

Advance Care Planning in Nursing Home Patients With Dementia: A Qualitative Interview Study Among Family and Professional Caregivers.

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van Soest-Poortvliet, Mirjam C; van der Steen, Jenny T; Gutschow, Giselka; Deliens, Luc; Onwuteaka-Philipsen, Bregje D; de Vet, Henrica C W; Hertogh, Cees M P M

2015-11-01

The aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses. A qualitative descriptive study. A total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes. Family, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios). ACP is a multifactorial process, which may lean on professional caregivers' guidance. The most

Medical Care Tasks among Spousal Dementia Caregivers: Links to Care-Related Sleep Disturbances.

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Polenick, Courtney A; Leggett, Amanda N; Maust, Donovan T; Kales, Helen C

2018-05-01

Medical care tasks are commonly provided by spouses caring for persons living with dementia (PLWDs). These tasks reflect complex care demands that may interfere with sleep, yet their implications for caregivers' sleep outcomes are unknown. The authors evaluated the association between caregivers' medical/nursing tasks (keeping track of medications; managing tasks such as ostomy care, intravenous lines, or blood testing; giving shots/injections; and caring for skin wounds/sores) and care-related sleep disturbances. A retrospective analysis of cross-sectional data from the 2011 National Health and Aging Trends Study and National Study of Caregiving was conducted. Spousal caregivers and PLWDs/proxies were interviewed by telephone at home. The U.S. sample included 104 community-dwelling spousal caregivers and PLWDs. Caregivers reported on their sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and sleep disturbances. PLWDs (or proxies) reported on their health conditions and sleep problems. Caregivers who performed a higher number of medical/nursing tasks reported significantly more frequent care-related sleep disturbances, controlling for sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and PLWDs' sleep problems and health conditions. Post hoc tests showed that wound care was independently associated with more frequent care-related sleep disturbances after accounting for the other medical/nursing tasks and covariates. Spousal caregivers of PLWDs who perform medical/nursing tasks may be at heightened risk for sleep disturbances and associated adverse health consequences. Interventions to promote the well-being of both care partners may benefit from directly addressing caregivers' needs and concerns about their provision of medical/nursing care. Copyright © 2018 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights

Correlates of caregiver burden among family caregivers of older Korean Americans.

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Casado, Banghwa; Sacco, Paul

2012-05-01

Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

Facilitators and Barriers to Performing Activities and Participation in Children With Cerebral Palsy: Caregivers' Perspective.

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Earde, Pinailug Tantilipikorn; Praipruk, Aina; Rodpradit, Phanlerd; Seanjumla, Parichad

2018-01-01

To investigate contextual factors that were facilitators and barriers to performing activity and participation for children with cerebral palsy from the caregivers' perspective. Qualitative in-depth interview with primary caregivers of children with cerebral palsy aged 4 to 12 years was conducted in the metropolitan area of Thailand. Semistructured questions related to environmental and personal factors were recorded. Interviews were transcribed verbatim and analyzed for main themes on the basis of the International Classification of Functioning, Disability, and Health-Children and Youth Version (ICF-CY) classification. Twenty-seven caregivers participated. Facilitators were appropriateness of assistive devices, support and acceptance from family, friends, and society, health services, willingness, and self-acceptance. Barriers were inappropriate design and facilities, overprotection of family, nonacceptance from family, friends, and society, inconvenient transportation, financial problems, limited health services, limited access to education, frustration, and being an introvert. Contextual factors that can be facilitators and barriers to perform activities and participation should be considered for improving lives of children with cerebral palsy.

Bereaved relatives' experiences during the incurable phase of cancer: a qualitative interview study.

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Wijnhoven, Marleen N; Terpstra, Wim E; van Rossem, Ronald; Haazer, Carolien; Gunnink-Boonstra, Nicolette; Sonke, Gabe S; Buiting, Hilde M

2015-11-25

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/

An Exploratory Study Examining Risk Communication among Adolescent Children, Their Incarcerated Mothers, and Their Caregivers.

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Robillard, Alyssa G; Holliday, Rhonda C; DeHart, Dana D; Lewis, Kaleea; Rutherford, Yamisha; Amutah, Ndidi N

2016-01-01

Adolescent children of incarcerated mothers (ACIM) are typically left in the care of adults (primary caregivers) who play a crucial role in children's care and guidance, as well as in the facilitation of contact and communication with incarcerated mothers. The purpose of this study was to explore the nature of relationships and communication among adolescent children of incarcerated mothers, primary caregivers, and incarcerated mothers using pilot data. Semi-structured individual interviews were conducted with youth aged 12-17 (n=7) and caregivers (n=6) recruited through a non-profit organization working with incarcerated mothers and their children. Incarcerated mothers and primary caregivers represent an important family unit for ACIMs and may play a role in preventing risk behavior. A conceptual framework is offered for further consideration of mother and caregiver communication with youth and youth risk.

“You’re dealing with an emotionally charged individual…”: an industry perspective on the challenges posed by medical tourists’ informal caregiver-companions

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2013-01-01

Background Patients engage in medical tourism when they privately obtain a medical care abroad. Previous research shows that many medical tourists travel abroad with friends and family members who provide support and assistance. Meanwhile, very little is known about this important stakeholder group, referred to here as caregiver-companions. In this article we examine the challenges that can be posed by caregiver-companions and the overall practice of informal caregiving in medical tourism from an industry perspective. Specifically, we report on the findings of interviews conducted with international patient coordinators (IPCs) who work at destination facilities. IPCs come into regular contact with caregiver-companions in their professional positions and thus are ideally suited to comment on trends they have observed among this stakeholder group as well as the challenges they can pose to medical tourists, health workers, and facilities. Methods We conducted 20 semi-structured interviews with 21 IPCs from 16 different facilities across nine countries. Topics probed in the interviews included caregiver-companion roles, IPCs’ and others’ interaction with caregiver-companions, and potential health and safety risks posed to medical tourists and caregiver-companions. Thematic analysis of the verbatim transcripts was employed. Results Although most participants encouraged medical tourists to travel with a caregiver-companion, many challenges associated with caregiver-companions were identified. Three themes best characterize the challenges that emerged: (1) caregiver-companions require time, attention and resources; (2) caregiver-companions can disrupt the provision of quality care; and (3) caregiver-companions can be exposed to risks. IPCs pointed out that caregiver-companions may, for example, have a negative impact on the patient through cost of accompaniment or inadequate care provision. Caregiver-companions may also create unanticipated or extra work for IPCs, as

[The support system for dementia patient and their caregiver with Skype and webcam].

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Hori, Miyako; Kubota, Masakazu; Kinoshita, Ayae

2008-12-01

The increase in the number of people suffering from dementia because of aging is a serious problem for caregivers since the feature of this pathology is irreversible and advancing. We designed an intervention study with Skype and webcam for patient with dementia being cared at home by their caregiver to prevent a further memory deterioration (seriousness of dementia) and to reduce a care burden as well. For a period of 12 weeks, a 4-patient-caregiver pair communicated with a hospital nurse through the computer for 30 minutes once a week. The patient and the caregiver worked as a pair. From the beginning of the intervention period, the intervention group and control group (n = 4) were assessed with cognitive scale, ADL scale, care burden scale and depression scale for the caregiver, and the like once in 4 weeks for 12 weeks. The initial report on the 8th week showed signs of improvement on the intervention group in HDS-R, also it improved the scale of moral of the caregiver as their scale of depression decreased.

The Continuous Confrontation of Caregiving as Described in Real-Time Online Group Chat.

Science.gov (United States)

Male, Dana A; Fergus, Karen D; Stephen, Joanne E

2015-01-01

To date, our understanding of the caregiver experience has been informed primarily by guided inquiry in the form of interviews and surveys, yielding information that is limited by the scope of researchers questions. The intent of this study was to explore the experience of caring for a loved one with advanced-stage cancer by means of participant-determined communication, using interactive, text-based transcripts from synchronous online support groups. Grounded theory analysis of the group transcripts yielded the core category continuous confrontation, characterized by major challenges (unrelenting assault, a new us, and the costs of caregiving) and minor triumphs (refuelling and living more intentionally). This unique method of data collection allowed for an especially candid, intersubjective group account of what it is to be a caregiver for an ill loved one without compromising the details that caregivers themselves consider important.

Benefit finding for Chinese family caregivers of community-dwelling stroke survivors: A cross-sectional study.

Science.gov (United States)

Mei, Yongxia; Wilson, Susan; Lin, Beilei; Li, Yingshuang; Zhang, Zhenxiang

2018-04-01

To identify whether benefit finding is a mediator or moderator in the relationship between caregiver burden and psychological well-being (anxiety and depression) in Chinese family caregivers of community-dwelling stroke survivors. Family caregivers not only bear a heavy burden, a high level of anxiety and depression, but also experience benefit finding (positive effects result from stressful events). However, the relationships among benefit finding, caregiver burden and psychological well-being in Chinese family caregivers are not well known. This study was a cross-sectional correlational design. Caregivers (n = 145) of stroke survivors were recruited from two communities in Zhengzhou, China. Data were collected by face-to-face interviews with structured questionnaires, examining caregiver burden, benefit finding and psychological well-being of caregivers. A hierarchical regression analysis explored whether caregiver burden and benefit finding were associated with anxiety and depression of caregivers. The moderator role of benefit finding was examined by testing the significance of the interaction between caregiver burden and benefit finding. A mediational model was used to test benefit finding as a mediator between caregiver burden and psychological well-being of caregivers using process in spss 21.0. Caregiver burden and benefit finding were significantly associated with both anxiety and depression of caregivers. Benefit finding did not portray a moderating role, but portrayed the mediator role in the relationship between caregiver burden, anxiety and depression in caregivers. This study provides the preliminary evidence to nurses that intervention focus on benefit finding may help improve the psychological well-being of caregivers. This study offers nurses rational for assessing caregiver's negative emotions and benefit finding. By targeting benefit finding, the nurse may guide caregivers in benefit identification and implement interventions to reduce anxiety

Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers? Experiences during End of Life Cancer Care

OpenAIRE

Koenig Kellas, Jody; Castle, Katherine M.; Johnson, Alexis; Cohen, Marlene Z.

2017-01-01

(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...

Negotiation, Mediation and Communication between Cultures: End-of-Life Care for South Asian Immigrants in Canada from the Perspective of Family Caregivers.

Science.gov (United States)

Weerasinghe, Swarna; Maddalena, Victor

2016-01-01

In the present study, we explored family caregivers' experiences in providing end-of-life care for terminally ill South Asian immigrants. We employed qualitative methods and. in-depth interviews were conducted with seven family caregivers living in Nova Scotia, Canada. Interview data were validated, coded and organized for themes. Three major themes identified in the data illustrated (a) how South Asian caregivers experienced clashes between biomedical and ethno-cultural realms of care that led to cultural insensitivity, (b) how family members acted as mediators, and (c) how communication issues that challenged cultural sensitivity were handled. Findings provide directions for culturally sensitive end-of-life care planning.

A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care.

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Whitmore, Rebecca; Crooks, Valorie A; Snyder, Jeremy

2017-01-01

Canadians travelling abroad for privately arranged surgeries paid for out-of-pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver-companions. Caregiver-companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or 'experiential resources' they draw upon to cope with providing care and avoiding caregiver burden. The care-giving literature has demonstrated that such burden can negatively impact caregivers' well-being. The unique, transnational context of care-giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver-companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi-structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel; (ii) previous experiences of informal care-giving; and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants' perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism

Types of Family Caregiving and Daily Experiences in Midlife and Late Adulthood: The Moderating Influences of Marital Status and Age.

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Wong, Jen D; Shobo, Yetunde

2017-07-01

Guided by the life-course perspective, this study contributes to the family caregiving, aging, and disability literature by examining the daily experiences of three types of family caregivers in midlife and late adulthood. A sample of 162 caregivers from the National Survey of Midlife in the United States study completed interviews, questionnaires, and a Daily Diary Study. Multilevel models showed the patterns of daily time use did not differ by caregiver types. Caregivers of sons/daughters with developmental disabilities (DD) experienced more daily stressors than caregivers of parents with health conditions (HC) and caregivers of spouses with HC. Unmarried caregivers of sons/daughters with DD reported spending more time on daily leisure activities and exhibited greater daily stressor exposure than other family caregivers. Age did not moderate the associations between caregiver types and daily experiences. Findings highlight the important consideration of the caregivers' characteristics to better determine the quality of their daily experiences in midlife and late adulthood.

The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia.

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Peacock, Shelley; Duggleby, Wendy; Koop, Priscilla

2014-04-01

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.

'We didn't have a clue': Family caregivers' experiences of the communication of a diagnosis of schizophrenia.

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Outram, Sue; Harris, Gillian; Kelly, Brian; Bylund, Carma L; Cohen, Martin; Landa, Yulia; Levin, Tomer; Sandhu, Harsimrat; Vamos, Marina; Loughland, Carmel

2015-02-01

Despite widespread acceptance of the principle that patients should be informed about their diagnosis, many clinicians are reluctant to provide a diagnosis of schizophrenia. This study examines family caregivers' experiences of the communication of a schizophrenia diagnosis and related information. A generic qualitative methodological approach was used. In all, 13 family caregivers were recruited in regional New South Wales, Australia. Semi-structured interviews were used to explore their experiences and perceptions of discussing the diagnosis, prognosis and treatment of schizophrenia with mental health professionals. Interviews were recorded, transcribed, codes generated and thematic analysis undertaken. Family caregivers described long and difficult pathways to being given a diagnosis, haphazard means of finding out the diagnosis, high unmet needs for information, exclusion from the medical care process and problematic communication and general interactions with mental health clinicians. Caregivers were unanimous about the importance of receiving a timely diagnosis, for them and their relative with schizophrenia. Family caregivers are an integral part of the mental health-care system, and they should be included early in discussions of diagnosis and treatment of a person with schizophrenia. Their perspectives on communicating a diagnosis of schizophrenia provide important information for communication skills training of psychiatrists and other mental health professionals. © The Author(s) 2014.

"They Told Me to Take Him Somewhere Else": Caregivers' Experiences Seeking Emergency Dental Care for Their Children.

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Meyer, Beau D; Lee, Jessica Y; Lampiris, Lewis N; Mihas, Paul; Vossers, Sarah; Divaris, Kimon

2017-05-15

The purpose of this mixed-methods study was to examine pediatric emergency dental trends in two safety net clinics and care-seeking experiences of young children's caregivers. Administrative data were used to describe and compare emergency first visits of children ages zero to six years in a community-based (CC) and a University-based (UC) safety net clinic from 2010 to 2014. In-person interviews were conducted with 11 caregivers of children ages zero to six presenting for nontrauma-related emergency visits at the UC from January to August 2016. Interviews were transcribed verbatim, coded, and analyzed inductively using Atlas. ti.7.5.9. The UC experienced significantly more emergency first visits (33 percent) than the CC (five percent, P<0.001), and the majority of these UC visits were referrals. Caregivers were dissatisfied with the experienced barriers of access to care and lack of child-centeredness, specifically the referral out of the dental home for emergency dental care. A considerable proportion of children's first visits at dental safety net clinics was emergency related. Children's caregivers voiced issues related to access to care and lack of child-centered care. Discordance was apparent between how professional organizations define the dental home and how caregivers experience it in the context of emergency care.

Predictors of caregiving satisfaction in informal caregivers of people with dementia

DEFF Research Database (Denmark)

de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana

2015-01-01

Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...... attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...

Caregivers' experiences of interaction with families expecting a fetally impaired child.

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Maijala, Hanna; Paavilainen, Eija; Väisänen, Leena; Astedt-Kurki, Päivi

2004-03-01

On the basis of earlier research, caregivers' actions when interacting with clients should be developed. However, nursing research has focused little attention on the interaction between caregivers and families expecting a fetally impaired child. The study aimed at generating a practical family nursing theory of caregivers' interaction with families expecting a malformed child. A grounded theory study was undertaken at Tampere University Hospital in Finland in 1999-2000. Data consisted of semi-structured interviews with 22 (n=22) nurses and doctors. The data were analysed using the constant comparative method. The interaction process starts when a caregiver informs the parents of the fetal impairment. The process is influenced by caregivers' attitude towards issues related to the family's life situation. Caregivers' views of their job, and of human coping and cultural attitudes towards these issues are also of importance. These factors account for their goals in the interaction, which, in turn, underlie their actions. When the caregiver's interpretation is that the family accepted the help provided, the outcome of the interaction is satisfaction with having been able to help. Correspondingly, in the case of an opposite interpretation, the caregiver experiences strain caused by inadequacy of the help he/she is providing. The core of interaction consists of two dimensions: gaining strength and losing strength in relation to impairment issues. Caregivers' views of helpful interaction were consistent with earlier research on the subject, but the findings of this study showed that more attention should be focused on the family as a whole. Furthermore, caregivers rarely criticized their own actions, thus their interaction skills should be upgraded by focusing on systematic self-assessment through training. Nursing research deepening our understanding of why interaction fails is warranted. The study results can be used in the family nursing practice as tools in

Determining Family Needs on an Oncology Hospital Unit Using Interview, Art, and Survey.

Science.gov (United States)

Catlin, Anita; Ford, Marilee; Maloney, Carrie

2016-04-01

A movement worldwide, and specifically new to our hospital, is the implementation of Patient- and Family-Centered Care. We were unsure, however, what the needs were of our patients' families. This triangulated study, on a 28-bed oncology unit, studied family members at the bedside. We asked family members what their needs were in a three-step process (open-ended interview, use of the Draw a Bridge art therapy technique, and the Family Inventory of Needs survey). Nineteen interviews revealed needs for physical comfort, emotional support, cultural sensitivity, recognition of help provided by family members and improved pain management. Art therapy revealed the stress of caregiving and helped to uncover unmet needs for interviewers to explore. The FIN identified that care at home after discharge was a major worry. Knowledge of family members' needs while a loved one is in the hospital allows for planning and provision of modalities to assist them in their caregiving. © The Author(s) 2015.

Cross-cultural adaptation of the Schizophrenia Caregiver Questionnaire (SCQ) and the Caregiver Global Impression (CaGI) Scales in 11 languages.

Science.gov (United States)

Rofail, Diana; Acquadro, Catherine; Izquierdo, Cécile; Regnault, Antoine; Zarit, Steven H

2015-06-09

The Schizophrenia Caregiver Questionnaire (SCQ) was developed to provide a comprehensive view of caregivers' subjective experiences of the impacts of caring for someone with schizophrenia. The Caregiver Global Impression (CaGI) scales were designed to assess their perception of the severity of the schizophrenia symptoms, of change in schizophrenia symptoms and in the experience of caring since the beginning of the study. The objectives of the study were to translate the SCQ and CaGI scales in 11 languages [French (Canada, France), English (Canada, UK, Australia), German (Germany), Italian (Italy), Spanish (Spain), Dutch (the Netherlands), Finnish (Finland), and Swedish (Sweden)], to present evidence that the translations capture the concepts of the original questionnaires and are well understood by caregivers of patients with schizophrenia in each target country. The different language versions were developed using a standard or adjusted linguistic validation process fully complying with the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) recommended procedures. Interviews were conducted with 55 caregivers of patients with schizophrenia from 10 countries representing the 11 different languages. Participants ranged in age from 28 to 84 years and had 5 to 16 years of education. Women represented 69.1 % (38/55) of the sample. Fourteen out of the 32 items of the SCQ generated difficulties which were mostly of semantic origin (13 items). The translation of the CaGI scales did not raise any major difficulty. Only five out of the 55 caregivers had difficulty understanding the meaning of the translations of "degree" in the expressions "degree of change in experience of caring" and "degree of change in symptoms". Translations of the SCQ and CaGI scales into 11 languages adequately captured the concepts in the original English versions of the questionnaires, thereby demonstrating the conceptual, semantic, and cultural equivalence of each translation.

Attachment style dimensions can affect prolonged grief risk in caregivers of terminally ill patients with cancer.

Science.gov (United States)

Lai, Carlo; Luciani, Massimiliano; Galli, Federico; Morelli, Emanuela; Cappelluti, Roberta; Penco, Italo; Aceto, Paola; Lombardo, Luigi

2015-12-01

The aim of the present study was to evaluate the predictive role of attachment dimensions on the risk of prolonged grief. Sixty caregivers of 51 terminally ill patients with cancer who had been admitted in a hospice were selected. Caregivers were interviewed using Attachment Scale Questionnaire, Hamilton Depression Rating Scale, Hamilton Anxiety Rating Scale, and Prolonged Grief Disorder 12 (PG-12). The consort caregivers showed higher PG-12 level compared to the sibling caregivers. Anxiety, depression, need for approval, and preoccupation with relationships levels were significantly correlated with PG-12 scores. Female gender, high levels of depression, and preoccupation with relationships significantly predicted higher levels of prolonged grief risk. © The Author(s) 2014.

Predictors of caregiver burden in Iranian family caregivers of cancer patients.

Science.gov (United States)

Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh

2017-01-01

Caregiver burden threatens the psychological, emotional, functional and even physical health of caregivers. The aims of this study were to determine caregiver burden and family distress and the relationship between them, also to explore predictors of caregiver burden in a sample of Iranian family caregivers of cancer patients. This is a cross-sectional study with correlational design. A total of 104 family caregivers of cancer patients were asked to respond to the Caregiver Burden Inventory (CBI) and the Family Distress Index (FDI) together with a sociodemographic questionnaire. For evaluating the relationship between CBI and FDI scores, the Pearson's product-moment correlation was used. In addition, multiple linear regression analysis was applied to explore the predictive factors of caregiver burden. A high burden was experienced by almost half of the caregivers (48.1%). The FDI mean score was 9.76 ± 5.40 ranged from 0 to 24. A strong positive correlation was found between the caregiver burden and family distress ( r = 0.76). Multiple linear regression results showed the predictive role of FDI score (β = 0.71, P = 0.001), patient's gender (β = -0.25, P = 0.001), and early cancer diagnosis (β =0.13, P = 0.027) in caregiver burden. They could explain 65% of variance in the level of burden in family caregivers. Family nurses should consider the caregivers burden and vulnerability of families with cancer patient, especially if the patient is a male or has a new diagnosis. They should also design special programs for the whole family as a system that family can adapt to the new situation.

Balancing competing needs mediates the association of caregiving demand with caregiver role strain and depressive symptoms of dementia caregivers: A cross-sectional study.

Science.gov (United States)

Liu, Hsin-Yun; Yang, Ching-Tzu; Wang, Yu-Nu; Hsu, Wen-Chuin; Huang, Tzu-Hsin; Lin, Yueh-E; Liu, Chin-Yi; Shyu, Yea-Ing L

2017-12-01

To examine the role of balancing competing needs in the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms). Caregivers who do not balance competing needs are more likely to experience negative caregiving outcomes, suggesting that balance mediates between caregiving demand and caregiving outcomes. Identifying a mediator of negative caregiving effects may help in developing tailored interventions for family caregivers of persons with dementia. A cross-sectional, correlational design. Data were collected from family caregivers' self-completed questionnaires between March 2013 - April 2014. A convenience sample of 120 family caregivers and care receivers with dementia was enrolled. We examined whether balance mediated the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms) by multiple regression analysis. To evaluate the significance of the indirect effect of caregiver balance, we used the Sobel test and Monte Carlo method, an alternative approach to testing mediation. Balancing competing needs completely mediated the association of caregiving demand with depressive symptoms and partially mediated the association of caregiving demand with role strain. Assessing caregivers' self-perceived sense of balance may help to identify caregivers at high risk for role strain and depressive symptoms. Interventions to enhance caregivers' perceived sense of balance between competing needs may provide a strategy for reducing the negative effects of caregiving. © 2017 John Wiley & Sons Ltd.

Prevalence and risk factors of depressive disorder in caregivers of patients with head and neck cancer.

Science.gov (United States)

Lee, Yu; Lin, Pao-Yen; Chien, Chih-Yen; Fang, Fu-Min

2015-02-01

The purpose of this study is to examine the prevalence and risk factors of depressive disorder in caregivers of patients with head and neck cancer. Study subjects were recruited from a multidisciplinary outpatient clinic for head and neck cancer in a medical center from February to July 2012. Caregivers of patients with head and neck cancer were enrolled and assessed using the Structured Clinical Interview for the DSM-IV, Clinician Version, the Short Form 36 Health Survey, and the Family APGAR index. The main aim of the study was to examine the difference in demographic data and clinical characteristics between the caregivers with and without depressive disorders. In addition, a stepwise forward model of logistic regression was used to test the possible risk factors. One hundred and forty-three caregivers were included in the study. The most prevalent psychiatric disorder was depressive disorder (14.7%), followed by adjustment disorder (13.3%). Nearly one-third of the caregivers had a psychiatric diagnosis. By using logistic regression analysis, it was found that unemployment (odds ratio (OR) = 3.16; 95% CI, 1.04-9.68), lower social functioning (OR = 1.43; 95% CI, 1.18-1.72), and lower educational level (OR = 1.16; 95% CI, 1.01-1.34) were significant risk factors for the depressive disorder. The clinical implication of our results is the value of using the standardized structured interview for early diagnosis of depressive disorder in caregivers of head and neck cancer patients. Early screening and management of depression in these caregivers will raise their quality of life and capability to care patients. Copyright © 2014 John Wiley & Sons, Ltd.

Conditioned to eat while watching television? Low-income caregivers' perspectives on the role of snacking and television viewing among pre-schoolers.

Science.gov (United States)

Blaine, Rachel E; Fisher, Jennifer Orlet; Blake, Christine E; Orloski, Alexandria; Younginer, Nicholas; Bruton, Yasmeen; Ganter, Claudia; Rimm, Eric B; Geller, Alan C; Davison, Kirsten K

2016-06-01

Although television (TV) viewing is frequently paired with snacking among young children, little is known about the environment in which caregivers promote this behaviour. We describe low-income pre-schoolers' snacking and TV viewing habits as reported by their primary caregivers, including social/physical snacking contexts, types of snacks and caregiver rationales for offering snacks. These findings may support the development of effective messages to promote healthy child snacking. Semi-structured interviews assessed caregiver conceptualizations of pre-schoolers' snacks, purpose of snacks, snack context and snack frequency. Interviews occurred in Boston, Massachusetts and Philadelphia, Pennsylvania, USA. Forty-seven low-income multi-ethnic primary caregivers of children aged 3-5 years (92 % female, 32 % Hispanic/Latino, 34 % African American) described their child's snacking in the context of TV viewing. TV viewing and child snacking themes were described consistently across racial/ethnic groups. Caregivers described snacks offered during TV viewing as largely unhealthy. Labels for TV snacks indicated non-nutritive purposes, such as 'time out', 'enjoyment' or 'quiet.' Caregivers' primary reasons for providing snacks included child's expectations, behaviour management (e.g. to occupy child) and social time (e.g. family bonding). Some caregivers used TV to distract picky children to eat more food. Child snacking and TV viewing were contextually paired by providing child-sized furniture ('TV table') specifically for snacking. Low-income caregivers facilitate pre-schoolers' snacking and TV viewing, which are described as routine, positive and useful for non-nutritive purposes. Messages to caregivers should encourage 'snack-free' TV viewing, healthy snack options and guidance for managing children's behaviour without snacks or TV.

Trajectories of caregiver burden in families of adult cystic fibrosis patients.

Science.gov (United States)

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

2017-10-17

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.

Use of crystal methamphetamine among male adolescents in Cape Town, South Africa: Caregivers' experiences.

Science.gov (United States)

Asante, Kwaku Oppong; Lentoor, Antonio G

2017-03-27

Against the background that crystal methamphetamine (colloquially known as "tik") is extensively used by the emerging working class Coloured youth in Cape Town, South Africa, this exploratory qualitative study was conducted to explore the experience of mothers whose children use methamphetamine. The researchers conducted one-to-one semi-structured in-depth interviews with sixteen (16) purposively selected caregivers (mothers) whose sons use methamphetamine. Interviews were recorded and simultaneously translated and transcribed. Thematic analysis was used to identify themes related to the experiences of caregivers of youth with methamphetamine problems. Findings showed that youth misbehaviour provided a context that led to feelings of shame and embarrassment. Participants also experienced personal challenges which included emotional problems, fear and self-blame. Participants also expressed family disruptions and financial drain as adverse experiences as a results of their sons' misbehaviour. The study results highlight the psychosocial challenges for caregivers of children who use methamphetamine. These findings underscore the need for effort to be directed at the development of formal support interventions for mothers of youth who are troubled with addiction.

Neural basis of attachment-caregiving systems interaction:insights from neuroimaging

Directory of Open Access Journals (Sweden)

Delia eLenzi

2015-08-01

Full Text Available The attachment and the caregiving system are complementary systems which are active simultaneously in infant and mother interactions. This ensures the infant survival and optimal social, emotional and cognitive development. In this brief review we first define the characteristics of these two behavioral systems and the theory that links them, according to what Bowlby called the attachment-caregiving social bond (Bowlby, 1969. We then follow with those neuroimaging studies that have focused on this particular issue, i.e. those which have studied the activation of the careging system in women (using infant stimuli and have explored how the individual attachment model (through the Adult Attachment Interview modulates its activity. Studies report altered activation in limbic and prefrontal areas and in basal ganglia and hypothalamus/pituitary regions. These altered activations are thought to be the neural substrate of the attachment-caregiving systems interaction.

"There isn't an easy way of finding the help that's available." Barriers and facilitators of service use among dementia family caregivers: a qualitative study.

Science.gov (United States)

Macleod, Ashley; Tatangelo, Gemma; McCabe, Marita; You, Emily

2017-05-01

Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia. Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis. Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers' beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an "expert" point of contact, and having beliefs about the caregiving role that enabled the use of services. Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

Family caregiver mistreatment of the elderly: prevalence of risk and associated factors.

Science.gov (United States)

Orfila, Francesc; Coma-Solé, Montserrat; Cabanas, Marta; Cegri-Lombardo, Francisco; Moleras-Serra, Anna; Pujol-Ribera, Enriqueta

2018-01-22

The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden. Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable. Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4). Prevalence of risk of abuse is

Beliefs and opinions in caregiving of elderly with AIDS: an exploratory study

Directory of Open Access Journals (Sweden)

Raquel Farias Diniz

2010-09-01

Full Text Available Objective: To explore what informal caregivers of elderly with AIDS think about the disease itself, the infection in elderly people, and about being a caregiver. Methods: A qualitative study in which the thematic content analysis of interviews resulted in the emergence of three categories: “conceptions about AIDS”, “AIDS in old age” and “being a caregiver”. Results: We observed the emergence of issues related to the three aspects, which must be considered in a broader analysis within the patient-caregiver relationship. Such questions involve information about the disease, living with the patient, gender differences and the specificities resulting from the infection at this stage of life. Conclusion: From this study, it is expected that greater attention be given to relationships of care provided by informal network of support to elderly people living with AIDS, in order to foster researches on social, affective, motivational and behavior aspects of caregivers.

"I'm just trying to cope for both of us": Challenges and supports of family caregivers in participant-directed programs.

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Milliken, Aimee; Mahoney, Ellen K; Mahoney, Kevin J; Mignosa, Kate; Rodriguez, Isabella; Cuchetti, Catherine; Inoue, Megumi

2018-05-17

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

Aspects of indignity in nursing home residences as experienced by family caregivers

DEFF Research Database (Denmark)

Nåden, Dagfinn; Høy, Bente; Lohne, Vibeke

2013-01-01

or deprived from the perspective of family caregivers? In this article, we focus only on indignity in care. This study took place at six different nursing home residences in Sweden, Denmark and Norway. Data collection methods in this part of this study consisted of individual research interviews. Altogether......, the sample consisted of 28 family caregivers of nursing home residents. The empirical material was interpreted using a hermeneutical approach. The overall theme that emerged was as follows: 'A feeling of being abandoned'. The sub-themes are designated as follows: deprived of the feeling of belonging...

Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors

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Tretteteig S

2017-12-01

Full Text Available Signe Tretteteig,1,2 Solfrid Vatne,3 Anne Marie Mork Rokstad1,3 1Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; 2Faculty of Medicine, University of Oslo; Oslo, Norway; 3Faculty of Health Sciences and Social Care, Molde University College, Molde, Norway Background: In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. “Meaning-focused coping” describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers’ positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers’ experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers’ experiences and motivation in their caregiving role is explored. Methods: A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Findings: Family caregivers’ roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their “relationship-oriented coping” and experience of meaning. Conclusion: Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers’ own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase

Validation of a model of family caregiver communication types and related caregiver outcomes.

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Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

2017-02-01

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

Preparing for human papillomavirus vaccine introduction in Kenya: implications from focus-group and interview discussions with caregivers and opinion leaders in Western Kenya.

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Friedman, Allison L; Oruko, Kelvin O; Habel, Melissa A; Ford, Jessie; Kinsey, Jennine; Odhiambo, Frank; Phillips-Howard, Penelope A; Wang, Susan A; Collins, Tabu; Laserson, Kayla F; Dunne, Eileen F

2014-08-16

Cervical cancer claims the lives of 275,000 women each year; most of these deaths occur in low-or middle-income countries. In Kenya, cervical cancer is the leading cause of cancer-related mortality among women of reproductive age. Kenya's Ministry of Public Health and Sanitation has developed a comprehensive strategy to prevent cervical cancer, which includes plans for vaccinating preteen girls against human papillomavirus (HPV) by 2015. To identify HPV vaccine communication and mobilization needs, this research sought to understand HPV vaccine-related perceptions and concerns of male and female caregivers and community leaders in four rural communities of western Kenya. We conducted five focus groups with caregivers (n = 56) and 12 key-informant interviews with opinion leaders to explore cervical cancer-related knowledge, attitudes and beliefs, as well as acceptability of HPV vaccination for 9-12 year-old girls. Four researchers independently reviewed the data and developed codes based on questions in interview guides and topics that emerged organically, before comparing and reconciling results through a group consensus process. Cervical cancer was not commonly recognized, though it was understood generally in terms of its symptoms. By association with cancer and genital/reproductive organs, cervical cancer was feared and stigmatized. Overall acceptability of a vaccine that prevents cervical cancer was high, so long as it was endorsed by trusted agencies and communities were sensitized first. Some concerns emerged related to vaccine safety (e.g., impact on fertility), program intent, and health equity. For successful vaccine introduction in Kenya, there is a need for communication and mobilization efforts to raise cervical cancer awareness; prompt demand for vaccination; address health equity concerns and stigma; and minimize potential resistance. Visible endorsement by government leaders and community influencers can provide reassurance of the vaccine's safety

Narratives from caregivers of children surviving the terrorist attack in Beslan: issues of health, culture, and resilience.

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Moscardino, Ughetta; Axia, Giovanna; Scrimin, Sara; Capello, Fabia

2007-04-01

Acts of terrorism have an extremely negative impact on the mental health of children and families. The school siege in Beslan, Russia, in 2004, represents a particularly traumatizing event as it was directed specifically at children and involved the entire community. This qualitative study aims to: (a) examine caregiver reactions to the terrorist attack in Beslan as reported 3 months after the traumatic event; (b) determine the extent to which indigenous cultural values and religious belief systems play a role in Beslan's caregivers' reactions to such event; and (c) identify variables that may function as sources of resilience to caregivers. A convenience sample of 17 primary caregivers from Beslan with at least one child who survived the school siege were asked to participate in semi-structured interviews. Narratives generated from the interviews were qualitatively analyzed using a thematic approach; nine major themes were identified. Caregivers' concerns centered on children's physical and psychological well-being, the reorganization of family life, and the disruption of community ties. Cultural values of pride, heroism, courage, and revenge emerged as relevant aspects shaping caregivers' reactions to the traumatic event. Possible sources of resilience included the willingness to return to normality, social support, and the reaffirmation of positive, culturally shared values in face of the perceived threat of future terrorist attacks. Findings are discussed in terms of their theoretical implications on the effects of trauma on children and families as well as interventions with highly traumatized populations in diverse cultural settings.

Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure.

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Wingham, Jennifer; Frost, Julia; Britten, Nicky

2017-07-20

Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. 1. To identify the factors that contribute to the experience of anguish.2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes-emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one's own health-that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

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Giesbrecht Melissa

2012-11-01

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

Caregiving to persons living with HIV/AIDS: experiences of Vietnamese family members.

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Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang

2016-03-01

To examine the experiences of caregiving among Vietnamese family members of persons living with HIV/AIDS. As the number of persons living with HIV/AIDS increases, the need of family caregivers who can take responsibility for the home care of these persons increases. Vietnam has one of the fastest growing HIV epidemics in Asia. A descriptive cross-sectional study with quantitative and qualitative methods was used. A purposive sample of 104 family caregivers, both male and female, participated voluntarily by answering a questionnaire of caregiver burden, and 20 of them participated in in-depth interview. Female caregivers were mainly mothers and wives while male caregivers were mainly husbands, fathers and siblings. The largest group of family caregivers reported moderate to severe burden. There was no difference between genders in total caregiver burden, but there were several differences between older and younger caregivers in some items of caregiver burden. Five categories of experiences emerged: Different types of caregiving to persons living with HIV/AIDS, cultural and religious issues associated with caregiving, keeping secret to avoid stigma and discrimination, lack of knowledge about disease and provision of care, and fear, anxiety and frustration. Stigma and discrimination should be decreased by providing knowledge to the general public about HIV/AIDS, in particular about ways of transmission and protection. Special knowledge should be given to family caregivers to enable them to give care to persons living with HIV/AIDS at home. This could be done through culturally appropriate training/intervention programmes in which coping methods should be included. Support group interventions should also be carried through. The results obtained can be used as baseline information. Health care providers should consider gender, age and culture of family members of persons living with HIV/AIDS. Knowledge about HIV/AIDS, provision of care at home and in hospital, and

Food Perceptions and Dietary Behavior of American-Indian Children, Their Caregivers, and Educators: Formative Assessment Findings from Pathways.

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Gittelsohn, Joel; Toporoff, Elanah Greer; Story, Mary; Evans, Marguerite; Anliker, Jean; Davis, Sally; Sharma, Anjali; White, Jean

2000-01-01

Dietary findings from a school-based obesity prevention project (Pathways) are reported for children from six different American-Indian nations. A formative assessment was undertaken with teachers, caregivers, and children from nine schools to design a culturally appropriate intervention, including classroom curriculum, food service, physical education, and family components. This assessment employed a combination of qualitative and quantitative methods (including direct observations, paired-child in-depth interviews, focus groups with child caregivers and teachers, and semistructured interviews with caregivers and foodservice personnel) to query local perceptions and beliefs about foods commonly eaten and risk behaviors associated with childhood obesity at home, at school, and in the community. An abundance of high-fat, high-sugar foods was detected in children's diets described by caregivers, school food-service workers, and the children themselves. Although children and caregivers identified fruits and vegetables as healthy food choices, this knowledge does not appear to influence actual food choices. Frequent high-fat/high-sugar food sales in the schools, high-fat entrees in school meals, the use of food rewards in the classroom, rules about finishing all of one's food, and limited family resources are some of the competing factors that need to be addressed in the Pathways intervention.

Using Cognitive Testing to Develop Items for Surveying Asian American Cancer Patients and Their Caregivers as a Pathway to Culturally Competent Care.

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Bolcic-Jankovic, Dragana; Lu, Fengxin; Colten, Mary Ellen; McCarthy, Ellen P

2016-02-01

We report the results from cognitive interviews with Asian American patients and their caregivers. We interviewed seven caregivers and six patients who were all bilingual Asian Americans. The main goal of the cognitive interviews was to test a survey instrument developed for a study about perspectives of Asian American patients with advanced cancer who are facing decisions around end-of-life care. We were particularly interested to see whether items commonly used in White and Black populations are culturally meaningful and equivalent in Asian populations, primarily those of Chinese and Vietnamese ethnicity. Our exploration shows that understanding respondents' language proficiency, degree of acculturation, and cultural context of receiving, processing, and communicating information about medical care can help design questions that are appropriate for Asian American patients and caregivers, and therefore can help researchers obtain quality data about the care Asian American cancer patients receive. © The Author(s) 2016.

Help for the Caregiver

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... 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 ...

Urban caregiver empowerment: Caregiver nativity, child asthma symptoms and emergency department use

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Coutinho, Maria Teresa; Kopel, Sheryl J.; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-01-01

Introduction This study examines the associations between caregiver empowerment, child asthma symptoms, and emergency department use in a sample of school aged urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child asthma symptoms, and emergency department use as a function of caregiver nativity. Methods Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7–9; N=130). Caregiver empowerment was assessed within family, asthma services, and community domains. Results Children whose caregivers reported greater empowerment within the family (knowledge and ability to care for their family) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (ability to collaborate with asthma providers and healthcare system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, while US-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child asthma symptoms. For US-born caregivers, higher levels of empowerment in asthma services were associated with more child asthma symptoms. Discussion Results suggest that caregivers who feel more confident and better able to manage problems within their family may better manage their child's asthma more effectively navigate the asthma healthcare system and manage their child's asthma. PMID:27632543

Caregiving, perceptions of maternal favoritism, and tension among siblings.

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Suitor, J Jill; Gilligan, Megan; Johnson, Kaitlin; Pillemer, Karl

2014-08-01

Studies of later-life families have revealed that sibling tension often increases in response to parents' need for care. Both theory and research on within-family differences suggest that when parents' health declines, sibling relations may be affected by which children assume care and whether siblings perceive that the parent favors some offspring over others. In the present study, we explore the ways in which these factors shape sibling tension both independently and in combination during caregiving. In this article, we use data collected from 450 adult children nested within 214 later-life families in which the offspring reported that their mothers needed care within 2 years prior to the interview. Multilevel analyses demonstrated that providing care and perceiving favoritism regarding future caregiving were associated with sibling tension following mothers' major health events. Further, the effects of caregiving on sibling tension were greater when perceptions of favoritism were also present. These findings shed new light on the conditions under which adult children are likely to experience high levels of sibling tension during caregiving. Understanding these processes is important because siblings are typically the individuals to whom caregivers are most likely to turn for support when assuming care of older parents, yet these relationships are often a major source of interpersonal stress. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Using identity and recognition as a framework to understand and promote the resilience of caregiving children in western Kenya

DEFF Research Database (Denmark)

Skovdal, Morten; Andreouli, E.

2011-01-01

Children around the world have been observed to assume caregiving responsibilities when a parent or other family members fall ill. Whilst the circumstances surrounding caregiving children in Anglophone countries have been looked at in detail, we know relatively little about how children in Africa...... experience young caregiving. This paper seeks to further our understanding of caregiving children in Africa by looking at how local constructions of childhood can facilitate their agency and resilience, paying particular attention to the role of identity and recognition. The study involved 48 caregiving...... children from Western Kenya who through individual interviews, photography and draw-and-write compositions articulated their experiences. The views of ten local adults have also been included. A thematic analysis revealed that caregiving children in Kenya are active participants in community life...

Initial experiences of family caregivers of survivors of a traumatic brain injury

Directory of Open Access Journals (Sweden)

Mandi Broodryk

2015-08-01

Full Text Available Background: There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI. Objective: To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI. Methods: Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI. Results: Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. Conclusion: The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.

Impacts of autistic behaviors, emotional and behavioral problems on parenting stress in caregivers of children with autism.

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Huang, Chien-Yu; Yen, Hsui-Chen; Tseng, Mei-Hui; Tung, Li-Chen; Chen, Ying-Dar; Chen, Kuan-Lin

2014-06-01

This study examined the effects of autistic behaviors and individual emotional and behavioral problems on parenting stress in caregivers of children with autism. Caregivers were interviewed with the Childhood Autism Rating Scale and completed the Strength and Difficulties Questionnaire and the Parenting Stress Index Short Form. Results revealed that caregivers of children with mild/moderate autistic behavior problems perceived lower parenting stress than did those of children with no or severe problems. In addition, prosocial behaviors and conduct problems respectively predicted stress in the parent-child relationship and child-related stress. The findings can provide guidance in evaluations and interventions with a focus on mitigating parenting stress in caregivers of children with autism.

The experience of meditation for people with amyotrophic lateral sclerosis and their caregivers - a qualitative analysis.

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Marconi, Anna; Gragnano, Gaia; Lunetta, Christian; Gatto, Ramona; Fabiani, Viviana; Tagliaferri, Aurora; Rossi, Gabriella; Sansone, Valeria; Pagnini, Francesco

2016-09-01

There is a lack of studies about psychological interventions for people with amyotrophic lateral sclerosis (ALS) and their caregivers. We investigated the experience of a meditation training program tailored for ALS needs. People with ALS (pALS) and their caregivers that joined a meditation program for ALS were interviewed at the end of the program. Verbatims were analyzed with a qualitative approach. Both pALS and their caregivers reported a positive impact on their psychological well-being, promoted by an increase in acceptance and non-judgmental attitude. Furthermore, coping strategies seem to improve, with a positive effect on resilience skills. The ALS meditation training program seems to be an effective psychological intervention for the promotion of well-being in pALS and their caregivers.

Urban caregiver empowerment: Caregiver nativity, child-asthma symptoms, and emergency-department use.

Science.gov (United States)

Coutinho, Maria Teresa; Kopel, Sheryl J; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-09-01

In this study, we examined the associations between caregiver empowerment, child-asthma symptoms, and emergency-department (ED) use in a sample of school-age urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child-asthma symptoms, and ED use as a function of caregiver nativity. Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7-9; N = 130). Caregiver empowerment was assessed within family, asthma services, and community domains. Children whose caregivers reported greater empowerment within the family (i.e., possessing sufficient knowledge and ability to care for their families) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (i.e., the ability to collaborate with asthma providers and the health-care system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, whereas U.S.-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child-asthma symptoms. For U.S.-born caregivers, higher levels of empowerment in asthma services were associated with more child-asthma symptoms. Results suggest that caregivers who feel more confident and better able to manage problems within their families may better manage their children's asthma symptoms. Foreign-born caregivers may benefit from increased support to more effectively navigate the asthma health-care system and manage their children's asthma. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Nurses as family caregivers - barriers and enablers facing nurses caring for children, parents or both.

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Clendon, Jill; Walker, Léonie

2017-03-01

To examine the dual caregiving and nursing responsibilities of nurses in New Zealand with a view to identifying potential strategies, policies and employment practices that may help to retain nurses with caregiving responsibilities in the workplace. As the nursing workforce ages, child-bearing is delayed and older family members are living longer, family caregiving responsibilities are impacting more on the working life of nurses. This may complicate accurate workforce planning assumptions. An explorative, descriptive design using interviews and focus groups with 28 registered nurses with family caregiving responsibilities. A depth of (largely hidden) experience was exposed revealing considerable guilt, physical, emotional and financial hardship. Regardless of whether the nurse chose to work or had to for financial reasons, family always came first. Demographic and societal changes related to caregiving may have profound implications for nursing. Workplace support is essential to ensure that nurses are able to continue to work. Increased awareness, support, flexibility and specific planning are required to retain nurses with family caregiving responsibilities. © 2016 John Wiley & Sons Ltd.

Developing a falls prevention program for community-dwelling stroke survivors in Singapore: client and caregiver perspectives.

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Xu, Tianma; O'Loughlin, Kate; Clemson, Lindy; Lannin, Natasha A; Dean, Catherine; Koh, Gerald

2017-12-25

Drawing on the perspectives of stroke survivors, family members and domestic helpers, this study explores participants' experiences of self-perceived fall risk factors after stroke, common fall prevention strategies used, and challenges to community participation after a fall. Semi-structured interviews were conducted in Singapore with community-dwelling stroke survivors with a previous fall (n = 9), family caregivers (n = 4), and domestic helpers (n = 4) who have cared for a stroke survivor with a previous fall. Purposive sampling was used for recruitment; all interviews were audio-recorded with permission and transcribed. Thematic analysis was conducted using NVivo (v10) software. All participants shared their self-perceived intrinsic and extrinsic fall risk factors and main challenges after a fall. For stroke participants and family caregivers, motivational factors in developing safety strategies after a previous fall(s) include social connectedness, independent living and community participation. For family caregivers and domestic helpers, the stroke survivor's safety is their top priority, however this can also lead to over-protective behavior outside of the rehabilitation process. Reducing the risk of falls in community-dwelling stroke survivors seems to be more important than promoting community participation among caregivers. The study findings highlight that a structured and client-centered fall prevention program targeting stroke survivors and caregivers is needed in Singapore. Implications for rehabilitation Falls after stroke can lead to functional decline in gait and mobility and restricted self-care activities. Community-dwelling stroke survivors develop adaptive safety strategies after a fall and want to be socially connected. However, caregivers see the safety of the stroke survivors as their top priority and demonstrate over-protective behaviors. Fall prevention programs for community-dwelling stroke survivors should target both stroke

Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington's Disease.

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Kavanaugh, Melinda S; Noh, Hyunjin; Zhang, Lixia

2016-01-01

Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles ("young carers" or "caregiving youth"). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10-20, who have a parent with Huntington's disease (HD), provided information about their knowledge of the presence of their ill parent's living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent's LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent's wishes, caregiving youths' opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.

Caring for the brain tumor patient: family caregiver burden and unmet needs.

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Schubart, Jane R; Kinzie, Mable B; Farace, Elana

2008-02-01

The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.

Factors associated with health-related quality of life among Chinese caregivers of the older adults living in the community: a cross-sectional study

Directory of Open Access Journals (Sweden)

Yang Xiaoshi

2012-11-01

Full Text Available Abstract Background Under the culture of filial piety and due to the Confucianism spirit in China, family caregivers usually undertake the responsibilities of caring for the older adults. They usually suffer from a heavy burden which is believed to impair their mental and physical health. Thus this study aims to describe the health-related quality of life (HRQOL among Chinese caregivers of the older adults living in the community and explore the predictors of caregivers’ HRQOL. Methods A cross-sectional study was conducted through convenience sampling. The study population was composed of 1,144 caregivers of older adults who suffered from one or more types of chronic diseases in 15 communities in 3 eastern cities of China. Family caregivers were interviewed face-to-face using the 36-item Short-Form Health Survey (SF-36 and the ZARIT Caregiver Burden interview (ZBI scales. The Antonovsky's Sense of coherence (SOC scale was also used to measure personal coping capability of the caregivers. Hierarchical multiple regression analysis (HMR was performed to explore the predictors of caregivers’ HRQOL. Results The majority of the caregivers were females (60.0% or adult children (66.5%. Mental QOL was significantly lower than physical QOL. Hierarchical multiple regression analysis showed that Demographic Characteristics of Caregivers, Patients’ Characteristics, and Subjective Caregiver Burden explained most of the total variance of all aspects of HRQOL. While, Objective Caregiving Tasks was only associated with physical QOL. Subjective Caregiver Burden was the strongest predictor of both physical and mental QOL. SOC was also a strong predictor of physical and mental QOL. Conclusions The mental QOL of the caregivers of older adults was disrupted more seriously than physical QOL. Additionally, Subjective Caregiver Burden might decrease caregiver’ health. A decrease in caregiver burden could promote better management of caregiving tasks, and improve

Neuro-oncology family caregivers are at risk for systemic inflammation.

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Sherwood, Paula R; Price, Thomas J; Weimer, Jason; Ren, Dianxu; Donovan, Heidi S; Given, Charles W; Given, Barbara A; Schulz, Richard; Prince, Jennifer; Bender, Catherine; Boele, Florien W; Marsland, Anna L

2016-05-01

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.

[Biopsychosocial approach to caregiving burden: Why should we care about caregivers' health?

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Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe

2018-06-11

There are 11 million family caregivers in France and some estimates indicate that there will be 17 million in 2020. Caregiving is a source of chronic stress that requires adaptation and coping strategies. Caregiving may benefit the health of a caregiver with a positive coping style and altruistic goals. However, the caregiver's burden is frequently associated with negative effects in terms of biopsychosocial imbalance and medical conditions, with frequent anxiety and depression. The management of the caregiving burden starts with the recognition of health professionals - caregivers may benefit from consultation-liaison psychiatry and multidisciplinary medico-social strategies, in addition to constant support from their GPs. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Caregivers' Attitudes towards HIV Testing and Disclosure of HIV Status to At-Risk Children in Rural Uganda.

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Rick Lorenz

Full Text Available Caregivers of HIV-positive children were interviewed in the Mbarara and Isingiro districts of Uganda to identify current trends in practices related to HIV testing and the disclosure of HIV status to the child. A total of 28 caregivers of at least one HIV-positive child participated in semi-structured interviews exploring when and why they tested the child for HIV, when the child was informed of their positive status, and what the caregiver did to prepare themselves and the child for status disclosure. For a majority (96% of respondents, the decision to test the child for HIV was due to existing illness in either the child or a relative. Other common themes identified included the existence of stigma in the caregivers' communities and doubt that the children truly understood what was being explained to them when their status was disclosed. Most (65% children were informed of their HIV status between the ages of 5 and 9, with the mean age of disclosure occurring at the age of 7. General provision of HIV information typically began at the same age as disclosure, and as many as two thirds (64% of the caregivers sought advice from an HIV counsellor prior to disclosure. How a caregiver chose to prepare themselves and the child did not affect the caregiver's perception of whether the disclosure experience was beneficial or not. These findings suggest that the HIV disclosure experience in Mbarara and Isingiro districts differs from current guidelines, especially with respect to age of disclosure, how caregivers prepare themselves and the child, and approaching disclosure as an ongoing process. The doubts expressed by caregivers regarding the child's level of HIV understanding following the disclosure experience suggest the children may be insufficiently prepared at the time of the initial disclosure event. The findings also suggest that examining the content of pre-disclosure counselling and HIV education, and how health care professionals are trained

A web-based program for informal caregivers of persons with Alzheimer's disease: an iterative user-centered design.

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Cristancho-Lacroix, Victoria; Moulin, Florence; Wrobel, Jérémy; Batrancourt, Bénédicte; Plichart, Matthieu; De Rotrou, Jocelyne; Cantegreil-Kallen, Inge; Rigaud, Anne-Sophie

2014-09-15

Web-based programs have been developed for informal caregivers of people with Alzheimer's disease (PWAD). However, these programs can prove difficult to adopt, especially for older people, who are less familiar with the Internet than other populations. Despite the fundamental role of usability testing in promoting caregivers' correct use and adoption of these programs, to our knowledge, this is the first study describing this process before evaluating a program for caregivers of PWAD in a randomized clinical trial. The objective of the study was to describe the development process of a fully automated Web-based program for caregivers of PWAD, aiming to reduce caregivers' stress, and based on the user-centered design approach. There were 49 participants (12 health care professionals, 6 caregivers, and 31 healthy older adults) that were involved in a double iterative design allowing for the adaptation of program content and for the enhancement of website usability. This process included three component parts: (1) project team workshops, (2) a proof of concept, and (3) two usability tests. The usability tests were based on a mixed methodology using behavioral analysis, semistructured interviews, and a usability questionnaire. The user-centered design approach provided valuable guidelines to adapt the content and design of the program, and to improve website usability. The professionals, caregivers (mainly spouses), and older adults considered that our project met the needs of isolated caregivers. Participants underlined that contact between caregivers would be desirable. During usability observations, the mistakes of users were also due to ergonomics issues from Internet browsers and computer interfaces. Moreover, negative self-stereotyping was evidenced, when comparing interviews and results of behavioral analysis. Face-to-face psycho-educational programs may be used as a basis for Web-based programs. Nevertheless, a user-centered design approach involving targeted

The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis.

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Benito-León, Julián; Rivera-Navarro, Jesús; Guerrero, Angel Luis; de Las Heras, Virginia; Balseiro, José; Rodríguez, Elena; Belló, Mireia; Martínez-Martín, Pablo

2011-06-01

To develop and test the first specific instrument for assessing caregiver health-related quality of life (HRQOL) in multiple sclerosis (MS) (CAREQOL-MS). Questionnaire items were derived from a literature review and the views of patients, caregivers, and experts. Instrument was reduced after the analyses of caregivers' interviews and experts' opinions. CAREQOL-MS psychometric properties were assessed in 276 MS caregivers. The final version consisted of 24 items (five subscales) and was free of floor or ceiling effects. For subscales, the Cronbach's alpha coefficient ranged from 0.75 to 0.90. The item-total correlation was 0.62-0.74 for subscale I (physical burden/global health); 0.56-0.74 for subscale II (social impact); 0.52-0.62 for subscale III (emotional impact), and 0.58-0.65 for subscale IV (need of help); subscale V (emotional reactions) had only two items. The intraclass correlation coefficient (0.96 for the total score; 0.75-0.95 for subscales) suggested satisfactory reproducibility. Association was close between CAREQOL-MS subscales and the Zarit burden interview and moderate with short form 36 mental/physical components. CAREQOL-MS subscales scores significantly increased (worse HRQOL) with increasing caregivers' age and Expanded Disability Status Scale. The standard error of the measurement ranged from 0.91 to 2.43 for subscales. Our results provided initial evidence of the usefulness and satisfactory psychometric properties of the CAREQOL-MS. Copyright © 2011 Elsevier Inc. All rights reserved.

Accessing antiretroviral therapy for children: Caregivers' voices

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Margaret (Maggie Williams

2016-10-01

Full Text Available Despite efforts to scale up access to antiretroviral therapy (ART, particularly at primary health care (PHC facilities, antiretroviral therapy (ART continues to be out of reach formany human immunodeficiency virus (HIV-positive children in sub-Saharan Africa. In resource limited settings decentralisation of ART is required to scale up access to essential medication. Traditionally, paediatric HIV care has been provided in tertiary care facilities which have better human and material resources, but limited accessibility in terms of distance for caregivers of HIV-positive children. The focus of this article is on the experiences of caregivers whilst accessing ART for HIV-positive children at PHC (decentralised care facilities in Nelson Mandela Bay (NMB in the Eastern Cape, South Africa. A qualitative, explorative, descriptive and contextual research design was used. The target population comprised caregivers of HIV-positive children. Data were collected by means of indepth individual interviews, which were thematically analysed. Guba's model was usedto ensure trustworthiness. Barriers to accessing ART at PHC clinics for HIV-positive children included personal issues, negative experiences, lack of support and finance, stigma and discrimination. The researchers recommend standardised programmes be developed and implemented in PHC clinics to assist in providing treatment, care and support for HIV positive children.

Accessing antiretroviral therapy for children: Caregivers' voices

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Margaret (Maggie Williams

2016-12-01

Full Text Available Despite efforts to scale up access to antiretroviral therapy (ART, particularly at primary health care (PHC facilities, antiretroviral therapy (ART continues to be out of reach for many human immunodeficiency virus (HIV-positive children in sub-Saharan Africa. In resource limited settings decentralisation of ART is required to scale up access to essential medication. Traditionally, paediatric HIV care has been provided in tertiary care facilities which have better human and material resources, but limited accessibility in terms of distance for caregivers of HIV-positive children. The focus of this article is on the experiences of caregivers whilst accessing ART for HIV-positive children at PHC (decentralised care facilities in Nelson Mandela Bay (NMB in the Eastern Cape, South Africa. A qualitative, explorative, descriptive and contextual research design was used. The target population comprised caregivers of HIV-positive children. Data were collected by means of in-depth individual interviews, which were thematically analysed. Guba's model was used to ensure trustworthiness. Barriers to accessing ART at PHC clinics for HIV-positive children included personal issues, negative experiences, lack of support and finance, stigma and discrimination. The researchers recommend standardised programmes be developed and implemented in PHC clinics to assist in providing treatment, care and support for HIV-positive children.

A Theoretical Model of Resource-Oriented Music Therapy with Informal Hospice Caregivers during Pre-Bereavement.

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Potvin, Noah; Bradt, Joke; Ghetti, Claire

2018-03-09

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.

Information model design health service childhood cancer for parents and caregivers

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Ramli, Syazwani; Muda, Zurina

2015-05-01

Most Malaysians do not realize that they are suffer from a chronic disease until the disease is confirmed to be at a critical stage. This is because lack of awareness among Malaysians about a chronic disease especially in a childhood cancer. Based on report of the National Cancer Council (MAKNA),11 million adults and children suffered with cancer and 6 million of them die in a worldwide. Lack of public exposure to this disease leads to health problems to their children. Information model design health service childhood cancer for p arents and caregivers using an android application medium can be used by a doctor to deliver an information of cancer to the parents and caregivers. The development of this information model design health service childhood cancer for parents and caregivers are using an integration of health promotion theory, spiral model and lean model to form a new model that can be used as a model design content of health service. The method using in this study are by an interview technique and questionnaires along the study was conducted. Hopefully the production of this information model design health service childhood cancer for parents and caregivers using an android apps as a medium can help parents, caregivers and public to know more about information of childhood cancer and at the same time can gain an awareness among them and this app also can be used as a medium for doctors to deliver an information to the parents and caregivers.

Late-Stage Caregiving

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... 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 ...

Middle-State Caregiving

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... 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 ...

Early-Stage Caregiving

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... 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 ...

Family-focused dementia care - a qualitative interview study

DEFF Research Database (Denmark)

Mohrsen Busted, Laila; Nielsen, Dorthe; Birkelund, Regner

to decrease the experienced burden that relatives to persons with dementia experience. The qualitative research project consists of three parts; 1) An interview study to investigate the problem area as experienced by 24 relatives. 2) Initiate family intervention, conducted by professional caregivers......Relatives to persons with dementia are in the literature described as the "invisible second patients." They get a more burdensome responsibility to the family’s everyday life and relation within the family. Furthermore, relatives as caregivers provide most of the assistance and supervision...... to fulfill the basic needs of the person with dementia. The experience of being close to a person with dementia may seem as a burden that involves emotional chaos and uncertainty which can lead to stress and depressions. Family health therapeutic conversations may be an intervention to relieve the suffering...

Palliative care clients' and caregivers' notion of fear and their strategies for overcoming it.

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Penman, Joy; Ellis, Bronwyn

2015-06-01

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.

Telephone-delivered psychoeducational intervention for Hong Kong Chinese dementia caregivers: a single-blinded randomized controlled trial

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Kwok T

2013-09-01

Full Text Available Timothy Kwok,1,2 Bel Wong,2 Isaac Ip,2 Kenny Chui,2 Daniel Young,2 Florence Ho2 1Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong, Special Administrative Region; 2Jockey Club Centre for Positive Ageing, Hong Kong, Special Administrative Region Purpose: Many family caregivers of persons with dementia (PWD are unable to participate in community center-based caregiver support services because of logistical constraints. This study evaluated the effectiveness of a telephone-delivered psychoeducational intervention for family caregivers of PWD in alleviating caregiver burden and enhancing caregiving self-efficacy. Subjects and methods: In a single-blinded randomized controlled trial, 38 family caregivers of PWD were randomly allocated into an intervention group or a control group. The intervention group received psychoeducation from a registered social worker over the phone for 12 sessions. Caregivers in the control group were given a DVD containing educational information about dementia caregiving. Outcomes of the intervention were measured by the Chinese versions of the Zarit Burden Interview and the Revised Scale for Caregiving Self-efficacy. Mann–Whitney U tests were used to compare the differences between the intervention and control groups. Results: The level of burden of caregivers in the intervention group reduced significantly compared with caregivers in the control group. Caregivers in the intervention group also reported significantly more gain in self-efficacy in obtaining respite than the control group. Conclusion: A structured telephone intervention can benefit dementia caregivers in terms of self-efficacy and caregiving burden. The limitations of the research and recommendations for intervention are discussed. Keywords: telephone intervention, psychoeducation, dementia caregivers

Worry About Caregiving Performance: A Confirmatory Factor Analysis

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Ruijie Li

2018-03-01

Full Text Available Recent studies on the Zarit Burden Interview (ZBI support the existence of a unique factor, worry about caregiving performance (WaP, beyond role and personal strain. Our current study aims to confirm the existence of WaP within the multidimensionality of ZBI and to determine if predictors of WaP differ from the role and personal strain. We performed confirmatory factor analysis (CFA on 466 caregiver-patient dyads to compare between one-factor (total score, two-factor (role/personal strain, three-factor (role/personal strain and WaP, and four-factor models (role strain split into two factors. We conducted linear regression analyses to explore the relationships between different ZBI factors with socio-demographic and disease characteristics, and investigated the stage-dependent differences between WaP with role and personal strain by dyadic relationship. The four-factor structure that incorporated WaP and split role strain into two factors yielded the best fit. Linear regression analyses reveal that different variables significantly predict WaP (adult child caregiver and Neuropsychiatric Inventory Questionnaire (NPI-Q severity from role/personal strain (adult child caregiver, instrumental activities of daily living, and NPI-Q distress. Unlike other factors, WaP was significantly endorsed in early cognitive impairment. Among spouses, WaP remained low across Clinical Dementia Rating (CDR stages until a sharp rise in CDR 3; adult child and sibling caregivers experience a gradual rise throughout the stages. Our results affirm the existence of WaP as a unique factor. Future research should explore the potential of WaP as a possible intervention target to improve self-efficacy in the milder stages of burden.

Quality of life of children and their caregivers during an AOM episode: development and use of a telephone questionnaire

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Dubé Eve

2010-07-01

Full Text Available Abstract Background The negative consequences of acute otitis media (AOM on the quality of life (QOL of children and their families need to be measured to assess benefits of preventive interventions. Methods A new questionnaire was specifically designed for use in telephone surveys. A random sample of Canadian families was selected using random-digit dialling. Caregivers of children 6-59 months of age who experienced at least one AOM episode during the last 12 months were interviewed. Multidimensional severity and global QOL scores were measured both for affected children and their caregivers. Internal consistency of scores was assessed using standard tests. Results Of the 502 eligible caregivers who completed the survey, 161 (32% reported at least one AOM episode during the last 12 months and these cases were included in the analysis. Average severity was 2.6 for children and 2.4 for caregivers on a 1 to 4 scale (maximum severity. Cronbach alpha values were 0.78 and 0.81 for the severity score of children and caregivers respectively. Average QOL was 3.4 for children and 3.5 for caregivers on a 1 to 5 scale (best QOL. There was moderate to high correlation between severity and QOL scores, and between these scores and duration of AOM episodes. Conclusions The questionnaire was easy to use during telephone interviews and results suggest good reliability and validity of the different scores to measure AOM severity and QOL of children and their caregivers during an AOM episode.

Perception of family caregivers about barriers of leisure in care of individuals with chronic psychiatric disorders: a qualitative study

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Mandani, Batool; Hosseini, Mohammad Ali; Noori, Ashraf Karbalaie; Ardakani, Mohammad Reza Khodaie

2018-01-01

Background Family caregivers of individuals with chronic psychiatric disorders play an important role in the management of the patient’s conditions, which interferes with other activities of daily living, work, social and leisure activities. Objective This study was conducted in an Iranian context to explore the perception of family caregivers about barriers of leisure in care of individuals with chronic psychiatric disorders. Methods The current qualitative study was conducted on the basis of conventional content analysis. Participants were 15 family caregivers of individuals with chronic psychiatric disorders who were selected by Purposeful sampling method between July 2016 and March 2017 in Tehran, Iran. The data was collected via in-depth semi-structured interviews. The interviews were tape recorded, written and transcribed. Then, data were analyzed by inductive content analysis method. Results Data analysis led to extraction of 3 main categories and 10 sub categories. Obstacles to leisure-time of family caregivers have been placed in three main categories which are patient-related factors (Resentment from psychological problems, Resentment from behavioral problems, Need for continuous monitoring and access), caregiver-related factors (Physical harm, Psychosocial harm, Temporal stress, Accumulation of responsibilities, Concerns), and community-related factors (Feeling of sympathy and rejection, Social stigma). Conclusion Understanding the barriers of leisure in this group of family caregivers has contributed to understanding the family caregivers’ perception in this area and regarding their leisure, it can provide a broader perspective to mental health therapists, rehabilitation managers and policy makers for understanding the needs, addressing the challenges and barriers of this group of family caregivers. PMID:29765577

Deciding to institutionalize: caregiving crisis, intergenerational communication, and uncertainty management for elders and their children in Shanghai.

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Chen, Lin

2015-01-01

This phenomenological study integrated crisis theory, social identity theory, and uncertainty management theory to conceptualize the decision-making process around institutionalization among nursing home residents and their children in Shanghai. I conducted face-to-face, semistructured interviews with 12 dyads of matched elders and their children (N = 24). The findings suggest that caregiving crises triggered intergenerational communication about caregiving alternatives and new arrangements, although each generation had different stances and motivations. Children finalized the decision by helping their parents to manage the uncertainties pertaining to institutionalization. This study sheds light on caregiving decision-making dynamics for the increasing aging population across cultures.

The factors affecting the burden of care of informal caregivers of the elderly in Tehran

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Hosein Rohani

2015-03-01

Full Text Available Background: Rapid growth of the elderly population followed by an increase in long term care will lead to a rise in the health costs of the elderly and the healthcare burden of their caregivers. This study was carried out to examine the factors affecting the burden of care for informal caregivers in order to design better interventional programs and to reduce this burden and unwanted consequences. Methods: This cross-sectional study was conducted in retirement associations of Tehran in 2012. The study population included 200 elderly and 200 caregivers. The instruments for data collection included two questionnaires about the elderly and their caregivers that were completed in a face-to-face interview. The data were analyzed by SPSS-16 software using multiple linear regression. Results: About 60% of the elderly and 34% of caregivers were female. Burden of care was low in 70%, moderate in 11.5%, and high in 18.5% of caregivers. Female caregivers were suffering 1.42 unit more burden of care than male caregivers (P= 0.027. Also, there was a significant association between the burden of care of untrained caregivers and instrumental activities of the daily living of the elderly (P< 0.001, daily activity of the elderly (P<0.001 and adequacy of wage (= 0.001. Conclusion: According to the results, being a female caregiver, daily physical activity of the elderly, instrumental activities of the daily living of the elderly, and adequacy of the wage were the most important factors in increasing the burden of care for caregivers of the elderly.

Family Caregiver Alliance

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... on your schedule. Look for our launch soon! FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... AiA18 Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more Caregiver Research Studies show ...

Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

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Finley, Joanne P

2018-02-01

The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

The cortisol awakening response in caregivers of schizophrenic offspring shows sensitivity to patient status.

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Gonzalez-Bono, Esperanza; De Andres-Garcia, Sara; Moya-Albiol, Luis

2011-01-01

Taking care of offspring during a prolonged period of time is probably one of the most stressful life experiences for parents. The present study compares the cortisol awakening response (CAR) in 38 long-term caregivers (mothers and fathers of schizophrenic relatives) with a control group of 32 non-caregivers. Factors such as general stress, caregiver burden, patient severity, and institutionalization were studied. Although a blunted CAR was observed in caregivers in comparison with controls, this difference was not significant. Among caregivers, the absence of institutionalization for the patient is associated with a lack of CAR in caregivers in comparison with caregivers of institutionally supported patients. General stress, caregiver burden, and patient severity themselves did not favor significant changes in CAR. CAR shows greater sensitivity to institutional support than patient severity and perceived stress. Further research is needed to explain the impact of these factors on health and the psychological factors involved.

Korean sibling caregivers of individuals diagnosed with schizophrenia

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Mijung Park

2017-12-01

Full Text Available Siblings of individuals diagnosed with schizophrenia are an important source of family caregiving. Unfortunately, limited information is available about sibling caregivers because existing studies have focused on other family relationships such as parents, spouses, and children. To fill the knowledge gap, the purpose of this study is to describe Korean sibling caregivers’ experience with individuals diagnosed with schizophrenia. Guided by Colaizzi’s descriptive phenomenological methodology, we conducted in-depth, semi-structured, face-to-face interviews with eight individuals who have a sibling (1 diagnosed with schizophrenia and (2 hospitalized in an inpatient psychiatric unit. We discerned six key themes: sorrow, burnout, shame, different perspectives in life, acceptance, and responsibility. We categorized these themes into three groups: suffering, hope, and responsibility and obligation. Sibling caregivers of individuals with schizophrenia experience a mixture of several emotions. Participants loved their brother or sister with schizophrenia, but at the same time they felt shame and fear. While they were burdened by the responsibilities of caregiving, they remained loyal to their sibling with schizophrenia, continuing to help their siblings reach their full potential. Although participants were confused about the symptoms of schizophrenia, they were committed to learning more about the illness. Because we conducted the current study in Korea, the findings of this study may be unique to Korea culture. Further studies are needed to compare and contrast nuanced differences in sibling caregivers’ experience among different cultural groups.

The effectiveness of a group psycho-educational program on family caregiver burden of patients with mental disorders

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Navidian Ali

2012-08-01

Full Text Available Abstract Background Brief family intervention may have a positive impact on family caregivers for patients with mental disorders. We assessed the effectiveness of a group psycho-educational program on family caregivers for patients with schizophrenia and mood disorders. Methods This randomized controlled trial was performed on 100 caregivers for patients with mental disorders attending the Isfahan Behavioral Sciences Research Center (IBSRC, in Isfahan, Iran. One hundred family caregivers of patients with schizophrenia (n = 50 and mood disorders (n = 50 were selected and assigned randomly to either a psycho-educational group intervention or routine care in each diagnosis category. The caregivers were followed for 3 months. Caregiver burden was assessed using the Zarit Burden Interview Results The mean scores of the Zarit caregiver burden decreased significantly for the group that participated in the psycho-educational program, while scores in the control group did not change significantly. Conclusions This group intervention program was effective to reduce the caregiver burden for both categories of mental disorders in the Iranian population. This group intervention program may improve the quality of life of patients and caregivers by improving the standards of care giving. Trial registration RCT registration number: IRCT138804272200N

An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

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Van Houtven Courtney

2011-11-01

Full Text Available Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient

Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy.

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Aguglia, E; Onor, M L; Trevisiol, M; Negro, C; Saina, M; Maso, E

2004-01-01

In Italy, the family constitutes the major caregiving response to the needs of the elderly who are no longer self-sufficient. These caregivers are often wives or daughters who have chosen to keep the patient at home with them. On average, three-quarters of the caregiver's day is devoted to the patient, a proportion that tends to increase linearly as the disease progresses. The primary aim of our study was to describe a group of Italian caregivers of patients with a diagnosis of dementia to assess their levels of stress. We then correlated these caregivers with a number of sociodemographic variables and the patients' degree of cognitive impairment and independence in daily life activities. The study was conducted on a sample group of 236 caregivers of patients with a diagnosis of Alzheimer's disease (AD) according to the DSM-IV criteria. Each caregiver took part in a sociodemographic interview and filled in two questionnaires: the Caregiver Burden Inventory (CBI), to quantify the caregiving workload and the Brief Symptom Inventory (BSI), to assess the level of anxiety and depression. Patients were administered the Mini-Mental State Examination (MMSE) to evaluate their level of cognitive impairment and the Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) tests to quantify their level of independence. The analysis of the results shows that the average Italian caregiver of an AD patient is a woman, approximately 60 years old. The majority of caregivers are spouses, followed by children. In general, these caregivers work at home, are housewives or retired, and are personally involved in caring for the patients. The greater the level of a patient's cognitive impairment and the less independent they are, the greater amount of care and supervision they require, leaving less free time for the caregiver; this leads to higher levels of anxiety related to caregiving. Toward the final stages of the disease, patient care tasks take up nearly

Mental Health-Related Stigma and Discrimination in Ghana: Experience of Patients and Their Caregivers.

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Tawiah, P E; Adongo, P B; Aikins, M

2015-03-01

Mental health is now attracting increased public health attention from health professionals, policy makers and the general population. However, stigma and discrimination usually have enormous negative impact on the patients and their families. This study reports on stigma and discrimination faced by mental health patients and their caregivers in a suburban area of Ghana and the coping strategies used. This is a cross-sectional exploratory study which used both quantitative and qualitative approaches. Two hundred and seventy seven mental health patients were purposively interviewed. Focus group discussions were held with caregivers and in-depth interviews were held with mental health professionals. The quantitative data were analyzed using SPSS and Microsoft Excel(®) whilst the qualitative data were coded and manually analyzed thematically. Mental disorder cuts across all age, sex, education, ethnicity, employment, and marital status. More females were stigmatized than males at the work/employment and educational levels. Various forms of stigma were observed at the economic, psychological and social levels, whilst for discrimination it was only observed at the economic and social levels. Caregivers were also stigmatized and discriminated. The coping strategies adopted by the mental patients and their caregivers were also economic, psychological and social in nature. Mental health patients and their families suffer from stigma and discrimination from the individual, family, work, employment, education to the health level. Thus, community level policy on mental health care needs to be developed and implemented. Furthermore mental health education needs to be intensified at the community level.

High burden and frailty: association with poor cognitive performance in older caregivers living in rural areas

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Allan Gustavo Brigola

2017-12-01

Full Text Available Abstract Introduction: Older caregivers living in rural areas may be exposed to three vulnerable conditions, i.e., those related to care, their own aging, and their residence context. Objective: To analyze the association of burden and frailty with cognition performance in older caregivers in rural communities. Method: In this cross-sectional survey, 85 older caregivers who cared for dependent elders were included in this study. Global cognition (Addenbrooke's Cognitive Examination – Revised; Mini Mental State Examination, burden (Zarit Burden Interview and frailty (Fried's frailty phenotype were assessed. All ethical principles were observed. Results: Older caregivers were mostly women (76.7%; mean age was 69 years. Cognitive impairment was present in 15.3%, severe burden in 8.2%, frailty in 9.4%, and pre-frailty in 52.9% of the older caregivers. More severely burdened or frail caregivers had worse cognitive performance than those who were not, respectively (ANOVA test. Caregivers presenting a high burden level and some frailty degree (pre-frail or frail simultaneously were more likely to have a reduced global cognition performance. Conclusion: A significant number of older caregivers had low cognitive performance. Actions and resources to decrease burden and physical frailty may provide better cognition and well-being, leading to an improved quality of life and quality of the care provided by the caregivers.

Burden Experienced by Family Caregivers of Patients at the End of Life: What do General Practice Teams Offer?

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Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F

2016-09-01

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.

Reiki training for caregivers of hospitalized pediatric patients: a pilot program.

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Kundu, Anjana; Dolan-Oves, Rebecca; Dimmers, Martha A; Towle, Cara B; Doorenbos, Ardith Z

2013-02-01

To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant's feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child's care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed. Copyright © 2012 Elsevier Ltd. All rights reserved.

Reiki training for caregivers of hospitalized pediatric patients: A pilot program☆

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Kundu, Anjana; Dolan-Oves, Rebecca; Dimmers, Martha A.; Towle, Cara B.; Doorenbos, Ardith Z.

2013-01-01

To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant’s feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child’s care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed. PMID:23337565

[Development of premature children: caregivers' understanding according to the Bioecological Theory].

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Lemos, Rayla Amaral; Veríssimo, Maria de La Ó Ramallo

2015-12-01

Understanding the conceptions of premature children caregivers on child development and associated factors. An exploratory-descriptive qualitative study of 12 families with children under three years of age. Interviews were submitted to thematic content analysis, systematized into the categories of Bioecological Theory of Human Development: Process, Person, Context and Time, and in the Functional Development category. There are concerns about impairment in the current and future development of a Person/child defined as fragile as a result of premature birth (Time dimension), minimized by the scope of observable competencies such as motor skills. The Context, especially family and health services, and Proximal Processes, described as one-way caregiver interactions, are considered determinants of development. Functional Development is considered a natural consequence and result of education. The support network is crucial, supporting or limiting care. Concerns about the development mobilize caregivers to stimulate the premature child/person and requests family and healthcare assistance.

Characterization of the patients' caregivers on the waiting list for heart transplant at UNIFESP.

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Machado, Regimar Carla; Branco, João Nelson Rodrigues; Michel, Jeanne Liliane Marlene; Gabriel, Edmo Atique; Locali, Rafael Fagionato; Helito, Renata Almeida Barros; Buffolo, Enio

2007-01-01

To identify and describe the main caregiver of the patients on the heart transplant waiting list; to compare relevant information provided by patients and caregivers, and to classify the caregivers according to their dedication and efficiency in assisting the patient by correlating them to sociodemographic data. Descriptive study performed from October 2004 to October 2005 at UNIFESP outpatient clinics. The study sample consisted of 21 patients and their caregivers. Data were collected through a structured interview. The main caregiver was a family member (95%), usually the spouse. There were 13 women (81%) and three men (19%). Patient age ranged from 24 to 65 years (mean 44.3). Patients were married (56%); catholic (43.8%); 29% have finished elementary school; 24% have finished high school; 14% have higher education; 68.8% have a regular job; and 81.4% had their own income. All caregivers lived in the same house as the patient. Once a score was established, the caregivers were classified as: "good" - 8 (50%); "regular" - 7 (43.7%); and "bad" 1 - (6.3%). The scores were correlated with education, professional activity, and income without any significant statistical correlation. It is important to determine the instruments to recognize and describe the caregivers. The caregiver is usually a family member (spouse), female, mean age of 44.3 years; has his/her own income and, most of the time, he/she is classified as "good" or "regular", and no correlation was found with education, professional activity and income. Further studies with a larger sample should establish the relationship between the caregiver's role and the heart transplant outcomes.

Determinants of depression in primary caregivers of disabled older relatives: a path analysis

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Rafael del -Pino-Casado

2017-11-01

Full Text Available Abstract Background Despite the large literature analysing factors related to depression, several factors such as caregiving obligation and the interrelationships among the different variables relating to depression have been little studied. The current study aimed to analyse the effect of caregiving obligation (beliefs regarding obligation and social pressure on depression, and the mediating effects of perceived burden on the relationship between stressors and depression, in primary caregivers of older relatives. Methods Cross-sectional study design. A probabilistic sample of caregivers from Spain (N = 200 was used. The data collection was conducted in 2013 through structured interviews in the caregivers’ homes. The measures included sense of obligation for caregiving, perceived burden, stressors and depression. Results Depression had a direct and positive association with perceived burden, behavioural problems, and social pressure, and it was indirectly related through perceived burden to behavioural problems, independence for the activities of daily living and beliefs of obligation. Conclusions Our results support the multidimensional concept of obligation, suggesting the existence of both an external obligation (social pressure and an internal obligation (beliefs of obligation; (b our findings support the hypothesis that external obligation is related to negative caregiving consequences, while internal obligation protects from these consequences; and (c our findings support the partial mediation of stressors on depression by perceived burden. The relevance of the research to clinical practice includes the importance of understanding the perceived obligation of caregiving related to both internal and external sources of obligation.

The cultural dialogue on the domestic dimension of care to immigrant caregivers in Spain

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Isabel Morales-Moreno

2015-10-01

Full Text Available Objectives: to determine how the immigration phenomenon influences the response to informal care in the domestic level through the caregiver activity, and to analyze the cultural dialogue established in the residential area of Murcia (Spain.Method: This is an ethnographic study, conducted in 26 informal immigrant caregivers. As data collection instruments, semi-structured interviews and participant observation were employed. MAXQDA-2 assisted content analysis was also applied.Results: the immigrant caregiver is the main consumer of traditional medicines, extending these health practices to her home group. A cultural dialogue is established on informal care, characterized by interculturalism and mutual adaptation.Conclusions: cultural hybridization was identified for informal caregivers, immigrants and cultural integration: new health care practices and cultural behaviors in informal systems. There is a transformation in the roles of family members attended in domestic environments, increasing quality of life and self care. They represent an alternative to medicalization, promoting self-management of health.

Women's caregiving and paid work: causal relationships in late midlife.

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Pavalko, E K; Artis, J E

1997-07-01

Care of an ill or disabled family member or friend is disproportionately done by women and typically is done in late midlife. Because this is-also a time in the life course when women's labor force participation peaks, many women faced with caregiving demands have to decide how to balance them with their employment. In this study we use the National Longitudinal Survey (NLS) of Mature Women to examine the causal relationship between employment and caring for an ill or disabled friend or relative over a three-year period. We find that employment does not affect whether or not women start caregiving, but that women who do start are more likely to reduce employment hours or stop work. Thus, the causal relationship between employment and caregiving in late midlife is largely unidirectional, with women reducing hours to meet caregiving demands.

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

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Basnyat, Iccha; Chang, Leanne

2017-09-01

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

Caregivers' experience of the decision-making process for placing a person with dementia into a nursing home: comparing caregivers from Chinese ethnic minority with those from English-speaking backgrounds.

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Caldwell, Lauren; Low, Lee-Fay; Brodaty, Henry

2014-03-01

The experience of care transitions for people with dementia from ethnic minority groups has been poorly researched. Few studies have examined the decision to put someone on a waiting list for a nursing home and then actually accept a place. Many nursing homes have long waiting lists, but sometimes offers of a place are declined. Our aims were to investigate the decision-making process for placing a person with dementia on a waiting list for a nursing home, why offers of a place are accepted or declined, and the influence of cultural factors, comparing caregivers from Chinese and English-speaking backgrounds. Semi-structured interviews with 27 caregivers of people with dementia on waiting lists or living in nursing homes (20 Chinese background and seven English-speaking background) were conducted, with thematic analysis of factors affecting caregivers' decision-making. Caregivers were at different stages of decision-making when they applied for a waiting list - some were ready for placement, others applied "just in case," and for some there was no waiting time because of an urgent need for placement. Caregivers' decisions were influenced by their emotions and expectations of nursing homes. The decision-making process was similar for both cultural groups, but Chinese caregivers spoke more about their sense of duty, the need for a Chinese specific facility, and declining a place because of family disagreement. Understanding cultural issues, including stereotypes and concerns about nursing homes, and providing better information about admission processes may help caregivers by allaying their anxiety about nursing home placement.

A theory of meaning of caregiving for parents of mentally ill children in Taiwan, a qualitative study.

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Yen, Wen-Jiuan; Teng, Ching-Hwa; Huang, Xuan-Yi; Ma, Wei-Fen; Lee, Sheuan; Tseng, Hsiu-Chih

2010-01-01

The aim of this study is to generate a theory of meaning of care-giving for parents of mentally ill children in Taiwan. Studies indicate that the meaning of care-giving plays an important role in the psychological adjustment of care-givers to care-giving. With a positive meaning of care-giving, care-givers can accept their roles and adapt to them more readily. The research employs the qualitative method of grounded theory, the inquiry is based on symbolic interactionism. Twenty parental care-givers of children with schizophrenia were recruited at a private hospital in central Taiwan. Semi-structured interviews were conducted. A comparative method was used to analyse the text and field notes. Responsibility (zeren) emerges as the core category or concept. Responsibility expresses broadly the behavioural principles that are culturally prescribed and centred on familial ethics and values. Related concepts and principles that influence caregiver actions and affections include a return of karma, challenges from local gods and fate. By maintaining their culturally prescribed interpretations of care-giving, parents hope to give care indefinitely without complaints. The findings clearly suggest that the meaning of care-giving is determined through a process of internal debate that is shaped by culturally specific concepts. The paper attempts to explain some of these culturally specific determinants and explanations of care-giving behaviour. The theory contributes knowledge about the meaning of care-giving for parents of mentally ill children in Taiwan. It should be useful reference for mental health professionals, who provide counselling services to ethnically Taiwanese care-givers.

The impact of care recipient falls on caregivers.

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Dow, Briony; Meyer, Claudia; Moore, Kirsten J; Hill, Keith D

2013-05-01

This study sought to explore the impact of care recipient falls on caregivers. Ninety-six community-dwelling caregiver-care recipient dyads participated in a 12-month prospective study. Falls and other accidents and service use were recorded. Dyads were assessed at baseline and after each fall. Assessment included the Zarit Burden Interview and a post-accident survey developed for the present study. Focus groups were then conducted to further explore the impact of falls on caregivers. Fifty-four care recipients (56%) experienced falls within the 12 months of the study. There was a significant increase in caregiver burden after the first fall (Zarit Burden Interview score increased from 24.2±14.2 to 27.6±14.5, Precipient alone. However, there was no increase in the number of services used. Focus group discussions highlighted the need for constant vigilance of the care recipient, a lack of knowledge about support services and concerns related to utilising respite care. Falls among care recipients have a significant impact on carers, including an increased fear of falling, prompting the need for even closer vigilance. WHAT IS KNOWN ABOUT THE TOPIC? Falls are a significant problem for older people as one in three older people fall each year and injurious falls are the leading cause of injury-related hospitalisation in older people. In Australia falls cost the economy over $500 million per year. WHAT DOES THIS PAPER ADD? This paper adds a unique perspective to the falls literature, that of the older person's carer. Falls are a significant problem for community-dwelling carers of older people, contributing to carer burden and impeding the carer's ability to undertake activities of daily living because of the perceived need for constant vigilance to prevent the person they care for from falling. WHAT ARE THE IMPLICATIONS FOR PRACTITIONERS? Practitioners should ensure that carers are aware of evidence-based falls-prevention practices and services, such as group and

Understanding threats to polio vaccine commitment among caregivers in high-priority areas of Afghanistan: a polling study.

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SteelFisher, Gillian K; Blendon, Robert J; Guirguis, Sherine; Lodge, William; Caporello, Hannah; Petit, Vincent; Coleman, Michael; Williams, Matthew R; Parwiz, Sardar Mohammad; Corkum, Melissa; Gardner, Scott; Ben-Porath, Eran N

2017-11-01

Eradication of poliovirus from endemic countries relies on vaccination of children with oral polio vaccine (OPV) many times a year until the age of 5 years. We aimed to determine caregivers' commitment to OPV in districts of Afghanistan at high risk for polio transmission and to examine what knowledge, attitudes, or experiences could threaten commitment. We designed and analysed a poll using face-to-face interviews among caregivers of children under 5 years of age. The sample was drawn via a stratified multistage cluster design with random route household selection. We calculated the percentage of committed and uncommitted caregivers. All percentages were weighted. We then compared percentages of uncommitted caregivers among those with varying knowledge, attitudes, and experiences, using logistic regression to control for possible demographic confounders. Between Dec 19, 2014, and Jan 5, 2015, we interviewed 1980 caregivers, 21% of whom were "uncommitted" to accepting OPV. Multiple measures of knowledge, attitudes, and experiences are associated with lack of commitment. For example, compared with their relevant counterparts, caregivers are more likely to be uncommitted if they did not trust vaccinators "a great deal" (54% vs 9%), if they do not know that polio spreads through contaminated water (41% vs 14%), or if they believe rumours that OPV is not halal (50% vs 21%). To enhance OPV commitment, it might be useful to consider a multifactorial approach that highlights building trust in vaccinators, providing facts about transmission, sharing positive messages to overcome key rumours, and strengthening community support for vaccination. Harvard T H Chan School of Public Health and UNICEF. Copyright © 2017 Elsevier Ltd. All rights reserved.

Exploring the needs of family caregivers of children with attention deficit hyperactivity disorder: A qualitative study

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Saeid Pahlavanzadeh

2018-01-01

Full Text Available Background: Attention deficit hyperactivity disorder (ADHD is one of the most common chronic childhood disorders that lead to dysfunction and disability in childhood and subsequently be careful. This study aimed to understand the needs of the children's caregivers in Iran. Materials and Methods: This qualitative research was conducted in 2016. Using purposive sampling, 27 participants from 20 families of children with ADHD were interviewed. Unstructured interviews were conducted within 6 months in Isfahan. Data gathering continued until no new data were accessed. Data were analyzed using qualitative content analysis. Results: The results of this research are shown in three main categories: (1 The caregiver's need for having sufficient information about the disorder, its cause and treatments (pharmacological and nonpharmacological; (2 the need to have enough knowledge about communication problems while caring for a sick child; and (3 the need to improve the performance of care. They were classified under the relevant concept. Conclusions: Caregivers of children with ADHD have different needs and problems and assessing them would decrease the child's problems and consequently, the family's problems. It would also increase the sense of control and authority over the child's condition in the caregivers. Since this disorder is chronic and permanent, ignoring the needs of caregivers not only would cut the process of the child's treatment but would also intensify the family's and child's problems. So it is recommended to conduct further studies about each of the resulted concepts in this study and the obstacles for reaching them.

Transitions to Home Mechanical Ventilation: The Experiences of Canadian Ventilator-Assisted Adults and Their Family Caregivers.