Caregiver burden

ABSTRACT. Systems theory has been extensively used by social work practitioners to conceptualize an array of social and psychological problems at the level of clinical practice. Systems theory is complex and this complexity is believed to be advantageous for investigating the roots ...

The present study is aimed at assessing the burden among the caregivers of the elderly in rural families and to standardize and compare Burden Assessment Scale (BAS) and Caregivers' Reaction Assessment scale (CRA) in Indian context. A Sample of 300 (176 women and 124 men) caregivers of the elderly was selected using a systematic sampling method from three village panchayats of a predominantly rural mandal (Padmanabham) of Visakhapatnam district, Andhra Pradesh. An interview schedule covering basic socio-demographic data and the two measures i.e. BAS and CRA was used to collect data from the caregivers. Findings reveal that burden and satisfaction of care giving is associated with sex and age of caregiver, and family income. A large percentage of caregivers expressed satisfaction about the care-giving role played by them. However, only a small percentage of women, as compared to men, expressed satisfaction about their care-giving role probably because the major burden of caring t...

Résumé

L’aide à un proche âgé est souvent envisagée à travers la notion de burden. Or, celle-ci présente le double inconvénient de renforcer l’image de la vieillesse comme problème et d’occulter la diversité des significations que les aidants donnent à la situation. L’article, fondé sur l’analyse d’entretiens réalisés auprès d’aidants (conjoints et enfants, principalement), se propose d’élaborer une autre représentation, qui prend la forme d’une typologie mettant en relief la diversité des expériences de l’aide : aide-altération, aide-contraintes, aide-engagement et aide-satisfaction.

Abstract

Aging: A burden for family and friends?

Care for an elderly family member is often seen as a burden. Yet this perspective has the dual drawback of reinforcing the image of old age as a problem and of causing us to lose sight of the diversity of meanings that carers attribute to this situation. This article, based on the analysis of interviews with carers (spouses and children, for the most part), seeks to develop another representation of care for a family member. It takes the form of a typology that highlights the diversity of experiences : care as deterioration, care as constraint, care as commitment, and care as satisfaction.

RIASSUNTO. Un ampio numero di pazienti ricoverati nei reparti di riabilitazione neuro-motoria sono supportati da caregiver. L'identificazione del carico psico-fisico conseguente all'assistenza o di specifici bisogni del caregiver può aiutare ad indirizzare l'intervento di supporto psicologico rivolto al caregiver stesso. È noto che ansietà e depressione possono essere presenti nel caregiver ed insieme a percezione di stress, di solitudine e di riduzione della attività sociali costituiscono un importante carico psicofisico del caregiver. Obiettivo del presente lavoro è presentare un progetto di supporto psicologico offerto ai caregiver di pazienti ricoverati in riabilitazione neuromotoria, principalmente affetti da ictus. È stata effettuata una valutazione psicometrica ad un gruppo di 50 caregiver, coniugi o figli, all'inizio e al termine del periodo riabilitativo. Sono stati utilizzati la Revised Anxiety and Depression Scale (RADS) per la valutazione dell'ansia e...

Objectives: The Involvement Evaluation Questionnaire (IEQ) is a comprehensive, conceptually valid
and reliable means of assessing caregiver burden. However, its psychometric properties have rarely
been examined in non-European settings. The aim of the present study was to evaluate the psychometric
properties of an Indian translation of the IEQ (Hindi-IEQ).
Methods: The European Union (English) version of IEQ was translated into Hindi and reviewed by a
group of experts and caregivers for translation accuracy, cultural appropriateness, and for relevance and
acceptability of items and constructs. The Hindi-IEQ was then administered to 162 primary caregivers of
patients with severe mental illnesses. Eighteen caregivers completed both the English and Hindi versions
to check the level of agreement between them. Another 27 completed the Hindi-IEQ twice, a week apart,
to evaluate its test-retest reliability. Factor structure of the Hindi-IEQ was examined using an exploratory,
principal components and factor analysis.
Results: Pearson’s correlation coefficients were significant for 24 items, while intraclass correlation
coefficients were significant for 28 of the 31 items (p < 0.05), indicating a satisfactory level of agreement
between the Hindi and English versions. Test-retest reliability for all items of the Hindi-IEQ was
adequate, with kappa values ranging from 0.46 to 0.95 and intraclass correlation coefficients from 0.76
to 1.00. Internal consistency (Cronbach’s alpha = 0.89) and the split-half reliability (Spearman-Brown
coefficient = 0.68) of the Hindi-IEQ were also satisfactory. However, several differences were noted
in the factor structure and distribution of scores of the Hindi-IEQ, which were quite unlike that of the
European Union version.
Conclusions: The similarities and differences between the 2 versions of the IEQ indicated that
sociocultural factors could influence assessment of caregiver burden across different cultures.

Mental disorders pose a major challenge to the community due to early onset, chronic progressively deteriorating course, frequent relapses and disability. They are associated with tremendous distress both for the patient and the caregiver, and can produce significant disability, especially when not treated in a timely manner. This review aims to discuss the burden of mental illness in terms of economic cost, family burden, disability and unemployment in India. After a conceptual overview of burden, barriers to mental health and treatment gaps are discussed. Finally, progress made in the area of mental health, recent government initiatives and future directions to address the growing problems associated with mental disorders are discussed.

Research into burden among spouse and adult-child caregivers of patients with Alzheimer's disease has generated contradictory results as regards the group which suffers the greatest burden and the factors underlying any differences.The aim of the present study was to identify and compare the factors associated with caregiver burden among spouse and adult-child caregivers.Cross-sectional analytic study.All clinical subjects had been referred on an out-patient basis to the Memory and Dementia Assessment Unit of the Santa Caterina Hospital in Girona (Spain).Data were collected from 251 patients and their caregivers, 112 with spouse and 139 with adult-child caregivers.The association between caregiver burden and the socio-demographic and clinical variables of both patients and caregivers was analysed, the results being compared for spouse vs. adult-child caregivers. Burden was analysed using a multivariate linear regression including all the variables for the two groups of caregivers.The results show greater burden among adult-child caregivers (p < .05), who experience more feelings of guilt (p < .001). In both groups the behavioural and psychological symptoms of patients were correlated with burden (p < .001). Living with the patient has a notable influence on burden among adult children (p < .001). Husbands, wives, daughters and sons, in this order, showed increasing levels of burden (p < .05) and progressively worse mental health (p < .01). However, the correlations between burden and mental health were strongest in daughters (p < .001).The differences in burden between spouse and adult-child caregivers were not associated with age, physical health or clinical factors of the patients. Overall burden was greater among adult-child caregivers, especially those who lived with the patient and who had other family duties. Feelings of guilt were associated with not living with the patient, and there was a strong correlation between burden and mental health. These results support the hypothesis that spouses regard caregiving as part of their marital duties, whereas for adult children such tasks imply an important change in their lifestyle.

Caring for a mentally ill family member is well known
to be mostly a stressful, distressing and burdensome
experience. The dominant model for examining the
process of caregiving has been the stress-appraisalcoping
paradigm, in which interactions between stressors,
appraisals, coping, and various mediators produce
the eventual outcomes in terms of distress or wellbeing
among caregivers. Ethnic and cultural factors
have traditionally received the least research attention
as mediators of the caregiving process. However,
a large body of accumulated research evidence has
clearly demonstrated that culturally-defined values,
norms, and roles are among the major determinants
of the caregiving experience. This research is based
mainly on cross-cultural comparisons between caregivers
of minority ethnic groups residing in the West
and the native Caucasian population. It has been
supplemented, to a limited extent, by research carried
out among caregivers belonging to different cultures
and residing in their countries of origin. Most of this
research has been carried out among caregivers of
elderly people with dementia; other psychiatric disorders
such as schizophrenia have received much less
attention. Results of this research have documented
important differences in caregiving experiences and
outcomes across cultural and ethnic groups. Cultural
factors which could mediate these differences have
been identified, and theories, which could provide a
coherent framework to understand these differences,
proposed. Though limited by methodological difficulties,
this research has provided important insights into
the impact of cultural and ethnic factors on the whole
spectrum of the caregiving experiences. An improved
understanding of the area is, nevertheless, required
because it will eventually help in devising appropriate
ways to reduce burden and distress among caregivers
from diverse ethnic and cultural groups.

L’intérêt porté aux soins palliatifs va grandissant. Lorsque ce type de soins est offert à un aîné à domicile, le conjoint endosse généralement le rôle d’aidant principal. Cet article s’appuie sur les résultats d’une étude visant à relever les éléments influençant l’expérience d’accompagnement en soins palliatifs à domicile prodigués à un conjoint âgé. À partir de huit récits expérienciels de proches aidants ayant accompagné leur conjoint âgé en soins palliatifs à domicile, nous avons dégagé un modèle de représentation de l’accompagnement. Nous proposons aussi une réflexion sur l’intervention professionnelle auprès de cette clientèle âgée.

Over the last few decades, informal caregivers of patients with chronic diseases have received more attention, and there is a growing volume of studies demonstrating high rates of burden, stress, and mental disorders in this group of individuals. The objective of this study was to evaluate the burden, stress, and psychosocial characteristics of informal caregivers of liver transplantation candidates. Participants were assessed by individual evaluations with the following instruments: a semistructured interview, the Caregiver Burden Scale, the Inventário de Sintomas de Stress para Adultos de Lipp, and the Beck Depression Inventory. The Mann-Whitney test was used for statistical analysis with a significance level of 0.05. The characteristics of the study group (n = 61) were similar to those of groups in other studies with respect to gender (82% were women), kinship (64% were spouses), and age (the mean age was 47.6 years). The main stressors identified by the participants were as follows: doubts about ways to react in a crisis or in emergency situations (42.6%), mood swings of the patient (29.5%), and care involving food and medications (27.9%). Approximately 25% of the caregivers reported that they felt unprepared to adequately perform their roles. Data analysis indicated a greater burden overall on caregivers when the patient's Model for End-Stage Liver Disease score was greater than or equal to 15 points (P = 0.041). Furthermore, caregivers of patients with alcoholic liver disease showed higher depression (P = 0.034) and overall burden scores (P = 0.031) versus caregivers of patients with liver disease due to other etiologies. In conclusion, the participants showed significantly high levels of burden, stress, and depression. Support measures and caregiver preparation should be implemented by health care providers. Liver Transpl 16:1164–1168, 2010. © 2010 AASLD.

Objectives: The nature and magnitude of the problems facing caregivers remain largely unknown in developing countries of the world. This study addresses these issues in a group of caregivers of patients with cancer in Zaria, Nigeria.Method: One hundred and three patients attending an oncology outpatient clinic at the Ahmadu Bello University Teaching Hospital were enrolled in the study with their caregivers. The caregivers were interviewed using the Socio-demographic data sheet, General Health Questionnaire-30 (GHQ-30) and Zarith Burden Interview (ZBI). A score of 4 or more in GHQ and scores above the median score of the sample in ZBI were considered a clinically significant level of psychological morbidity and a high level of burden, respectively. Data obtained were analyzed using the Statistical Package for Social Sciences Version 13 for Windows. All statistical tests of significance were carried out at 5% level of probability.Results: The patients were 60 women whose mean age was 57. Of the 103 caregivers, 60 (58%) were men and 43 (42%) were women. Their mean age was 37. Their mean ZBI and GHQ-30 scores were 29.16±12.8 (median = 25) and 3.67±3.01, respectively. A high level of burden was found in 49.5% (95% CI 39.9–59.1%) and psychological morbidity was found in 46.6% (95% CI 37.0–56.2%) of the caregivers. High levels of burden and psychological morbidity were significantly associated with absence of financial support.Conclusion: The study demonstrated a high level of caregiver burden, psychological morbidity and financial strain in family caregivers coming to the clinic with a relative who has cancer in an urban Nigerian setting. Copyright © 2010 John Wiley & Sons, Ltd.

We present a brief measure of caregiver burden, the Mood Disorder Burden Index (MDBI), for use with family members and close friends of adults with major depressive disorder (MDD) or bipolar disorder (BD). The MDBI assesses burden in three core domains (patients&#39; mood symptoms, caregivers&#39; worry about the future, and caregivers&#39; interpersonal difficulties with the patient) and includes an optional module that assesses caregiver burden associated with patients&#39; pharmacotherapy or psychotherapy. The MDBI was administered to caregivers of older individuals (i.e., 58 years and older) with MDD (n=123) or BD (n=38) who were receiving treatment through a research study. Analyses indicated evidence of convergent and discriminant validity of the new measure well as internal consistency within both caregiver groups. It will be important for future research to administer the MDBI to caregivers of middle-aged and older patients as well as those receiving treatment through inpati...

"English

Within the Al.Tr.A. Partnership we investigated how we can use the language of drama as a teaching tool, encouraging caregivers to introduce personal expression and creativity into their work.
The Al.Tr.A. Partnership aimed to analyse, in an international perspective, a new model of intervention to be used by professional caregivers working in residential care services (nursing homes, assisted living centres, continuing care retirement communities, adult care centres and the like).
The model of intervention aims to give professional caregivers the possibility of integrating their competencies with techniques inspired by social theatre. This in order to modify the interaction with the guests, traditionally based on an approach which sees them as persons losing their competencies, from both a physical but a cognitive point of view.
Social theatre is a powerful tool that develops the feeling of belonging to a community in those who live or work in closed spaces like prisons, hospitals, but also residential care homes.
The main aim has been to exchange experience and good practice in order to checking if this approach might be applied also in the other Countries involved in the project.
Through visits to nursing homes, training centres and the organisation of workshops, the partners verified that the needs in the various countries are similar.
The partners involved in the project have been active in raising interest around the topic through their networks, and have widely disseminated the philosophy of the methodology.

Italiano

Nel partenariato Al.Tr.A. abbiamo esplorato la possibilità di utilizzare il linguaggio teatrale come strumento pedagogico che consente di integrare l’espressività e la creatività nel lavoro di cura del personale assistenziale.
Al.Tr.A. si è posto l’obiettivo di analizzare un nuovo modello di intervento utile a professionisti che lavorano in case di cura residenziali per anziani. La discussione ed analisi con i partner ha permesso di definire un percorso formativo integrativo applicabile in contesti internazionali.
Il percorso ha lo scopo di incrementare le competenze professionali dei lavoratori del settore tramite tecniche mutuate dal teatro sociale.
In questo modo si garantisce un cambiamento di prospettiva rispetto ad un approccio tradizionale che vede l’anziano esclusivamente dal punto di vista della perdita di capacità, sia fisiche sia cognitive, e mero fruitore di assistenza.
Il teatro sociale inoltre si rivela mezzo efficace per sviluppare quel senso di appartenenza alla comunità, spesso assente negli spazi ristretti e nelle cosiddette “istituzioni totali” (prigioni, ospedali ma anche case di cura residenziali) ma fondamentale per il benessere degli individui che vi abitano.
Il partenariato ha permesso di verificare la trasferibilità di questo approccio ad altri contesti in una fase il cui l’approccio è ancora suscettibile di cambiamenti ed integrazioni, attraverso lo scambio di esperienze e buone prassi nei paesi partner.
Un ringraziamento va ai Partner che hanno operato nei propri network per suscitare interesse sull’argomento e hanno diffuso le prospettive alla base di Al.Tr.A.

Français

Au sein du partenariat Al.Tr.A. nous avons étudié la manière dont on peut utiliser le langage théâtral comme outil de formation et encourager les personnels de soin et d’assistance à introduire dans leur travail expression et créativité personnelles.
Le partenariat Al.Tr.A. visait à analyser, dans une perspective internationale, un nouveau modèle d’intervention pouvant être utilisé par les professionnels de l’assistance à la personne travaillant dans des centres de soins résidentiels (maisons de retraite, hébergements médicalisés, lieux de résidence en autonomie avec offre de soins, centres de soins pour adultes et autres structures de ce type).
Le modèle d’intervention vise à proposer à ces personnels la possibilité d’intégrer dans leurs compétences des techniques inspirées du théâtre social. L’objectif était de modifier leur interaction avec les résidents, qui est traditionnellement fondée sur une approche où ceux-ci sont considérés comme des personnes perdant leurs compétences, aussi bien du point de vue cognitif que physique.
Le théâtre social est un outil puissant pour développer le sentiment d’appartenance à une communauté chez ceux qui travaillent dans des espaces fermés comme des prisons ou des hôpitaux, mais aussi dans des maisons de retraite.
L’objectif principal était d’échanger expériences et bonnes pratiques pour vérifier si cette approche pourrait également être appliquée dans les autres pays participant au projet.
Grâce à des visites de maisons de retraite, de centres de formation et à l’organisation d’ateliers, les partenaires ont vérifié que les besoins dans les différents pays sont similaires.
Les partenaires engagés dans le projet se sont montrés actifs pour susciter de l’intérêt pour le sujet dans leur réseau, et ont largement diffusé la philosophie sur laquelle repose cette méthode."

The study aims to apply willingness-to-pay (WTP) values derived from the literature to inform decision-makers of the cost-effectiveness of the Tailored Activity Program (TAP), an intervention proven to reduce caregiver burden. TAP and other caregiver interventions employ an individual perspective and non-quality-adjusted life-year (QALY) outcome measure where the primary objective is to determine caregiver burden from an individual perspective. Therefore, standard cost/QALY thresholds are not appropriate. To identify relevant WTP values, we searched for studies that: 1) were published in the past 5 years and used contingent valuation methodology to identify WTP; 2) assessed WTP for a dementia-related intervention requiring out-of-pocket expenditure; and 3) asked caregivers their WTP for an outcome related to reducing caregiver burden. Three studies were identified utilizing four WTP values. We also assessed potential financial savings that caregivers could achieve from purchasing TA...

Introduction: It is estimated that 70% to 80% of informal care for frail and disabled elders is provided by family caregivers (FCGs). Aim: To better understand how caregiving for the elderly has affected FCGs lives and to compare the perspective of these caregivers in Belgium and Kenya. Method: Semistructured interviews were undertaken with 15 FCGs in Kenya and 15 FCGs in Belgium. Interpretative phenomenological analysis was used to identify themes. Results: Themes discovered in the experience of family caregiving included profile of the care receiver, impact of caregiving on the FCG, cultural values and norms, challenges in caregiving, coping strategies and caregiver well-being. Discussion: FCGs in both Kenya and Belgium identified experiencing serious concerns. In Kenya, the lack of resources and formal structures play a more important role than in Belgium. Despite this difference, culture-specific views and norms are paramount to explaining the FCG experience in the two countries.