'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Comparative Analysis of Gender and Age Patterns in Informal Care Received among Disabled Older Adults: A Cross-National Study across the United States, Mexico, China, and Indonesia.

This paper examines cross-national differences by gender and age in receipt and sources of help for limitations with activities of daily living or instrumental activities of daily living among older adults in the United States, Mexico, China, and Indonesia. Respondents aged 50 + from the Health and Retirement Study, Mexican Health and Aging Study, China Health and Retirement Longitudinal Study, and Indonesia Family Life Survey are included. Descriptive methods, logistic and multinomial regression analyses are used to examine patterns in any help received and main source of help respectively. After controlling for age, marital status, and co-residence with child(ren), it is found that men in all four countries overwhelmingly relied on their spouse for care, while children are more likely to be the main source of care for women. Children as the main source of care increased with age in each country and among men and women, surpassing spouse in China and Indonesia, and to a lesser extent in Mexico, but not in the United States where spouse was found to be more likely to be main caregiver even among the oldest age groups. Caregiving for the disabled is important for the well-being of the care recipient and for caregivers. Our results shed light on the asymmetric burden of caregiving on female spouses, across four diverse and aging countries.

Cultural factors associated with burden in unpaid caregivers of older adults: A systematic review.

The aim of the present systematic review was to investigate cultural factors associated with burden in unpaid caregivers of older adults. Searches were conducted in the Pubmed, Web of Science, PsycInfo, Scopus, Embase, LILACs and SciELO databases for relevant articles published in English, Portuguese and Spanish using the search terms 'Caregiver AND Culture AND (Burnout OR Caregiver Burden) AND Aged'. No restriction was imposed regarding year of publication. A total of 1234 articles were identified, 34 of which were selected for the present review. The following sociodemographic characteristics were associated with burden: being female, married, White caregivers, young and the spouse of the care recipient; having no siblings; having low schooling and low economic status. Cultural factors associated with burden were living with the care recipient, not professing a religion or having little spirituality, familism (i.e. less reciprocity) and an absence of social support. The present findings underscore the importance of developing intervention strategies that consider cultural factors to minimise the negative impacts of care on unpaid caregivers of older adults.

Graphic Novela: Mexican American Families' Use of Community Services for Older Adults.

Knowledge gaps exist about how to help Mexican American (MA) families seek assistance when their capacity to assist older family members is challenged. MA families may resist confronting unpleasant but real situations with the older adult, for example, the need to access long term support services (LTSS), because of cultural and structural barriers. The purpose was to describe stakeholders' reactions to a culturally focused graphic novela created in partnership with a community advisory council. Qualitative description with content analysis of a focus group's reactions to the graphic novela was used. Results included positive reactions as well as suggestions for improvement and dissemination. Graphic novelas can be an effective medium for modeling conversations about older adults' needing additional care, and demonstrating how to identify and access available LTSS or other services. Included is a description of the researchers' process of partnering with diverse stakeholders, which is essential for creating new solutions.

Adjunctive Therapy to Manage Neuropsychiatric Symptoms in Moderate and Severe Dementia: Randomized Clinical Trial Using an Outpatient Version of Tailored Activity Program.

BACKGROUND: Neuropsychiatric symptoms (NPS) such as aggression, apathy, agitation, and wandering may occur in up to 90%of dementia cases. International guidelines have suggested that non-pharmacological interventions are as effective as pharmacological treatments, however without the side effects and risks of medications. An occupational therapy method, called Tailored Activity Program (TAP), was developed with the objective to treat NPS in the elderly with dementia and has been shown to be effective. OBJECTIVE: Evaluate the efficacy of the TAP method (outpatient version) in the treatment of NPS in individuals with dementia and in the burden reduction of their caregivers. METHODS: This is a randomized, double-blind, controlled clinical trial for the treatment of NPS in dementia. Outcome measures consisted of assessing the NPS of individuals with dementia, through the Neuropsychiatric Inventory-Clinician rating scale (NPI-C), and assessing the burden on their caregivers, using the Zarit Scale. All the participants were evaluated pre-and post-intervention. RESULTS: 54 individuals with dementia and caregivers were allocated to the experimental (n = 28) and control (n = 26) groups. There was improvement of the following NPS in the experimental group: delusions, agitation, aggressiveness, depression, anxiety, euphoria, apathy, disinhibition, irritability, motor disturbance, and aberrant vocalization. No improvement was observed in hallucinations, sleep disturbances, and appetite disorders. The TAP method for outpatient settings was also clinically effective in reducing burden between caregivers of the experimental group. CONCLUSION: The use of personalized prescribed activities, coupled with the caregiver training, may be a clinically effective approach to reduce NPS and caregiver burden of individuals with dementia.

The "Last Child": Lone Family Caregivers in St. Croix, US Virgin Islands.

I investigate local explanations for a common family configuration of care for older relatives on the island of St. Croix, U.S. Virgin Islands: the "lone family caregiver." Through the examination of a paradigm case emerging from these explanations, I argue that local logics can divest some children of obligations to care for their older parents. I suggest that this case is an important addition to recent discussions within the anthropology of care that emphasize how families practice "care across distance," as it offers an alternative example of how families manage care in the context of migration.

An intervention to reduce neuropsychiatric symptoms and caregiver burden in dementia: Preliminary results from a randomized trial of the tailored activity program-outpatient version.

OBJECTIVE: To evaluate the efficacy of the tailored activity program-outpatient version (TAP-O) and to reduce neuropsychiatric symptoms (NPS) in patients with dementia and caregiver burden compared with a control group (psychoeducation intervention). METHODS: Twenty-one persons with dementia and their caregivers were recruited and randomized. The intervention group received TAP-O, designed for outpatients with dementia and their caregivers. TAP-O consisted of eight sessions in which an occupational therapist assessed the patient's abilities and interests; prescribed tailored activities; and educated caregivers about dementia, NPS, and how to implement meaningful activities in the daily routine. The control group received eight sessions of a psychoeducation intervention about dementia and NPS. RESULTS: Compared with controls, patients receiving TAP-O had a significant decrease in hallucination (P = 0.04), agitation (P = 0.03), anxiety (P = 0.02), aggression (P = 0.01), sleep disorder (P = 0.02), aberrant motor behavior (P = 0.02), and in caregiver burden (P = 0.003). CONCLUSIONS: Findings suggest that TAP-O may be an effective nonpharmacological strategy to reduce NPS of outpatients with dementia and to minimize caregiver burden.

The association among knowledge of and confidence in home health care services, acculturation, and family caregivers' relationships to older adults of Mexican descent.

The purposes of this study were to examine the relationships among knowledge of and confidence in health care services (HHCS), acculturation, characteristics of family caregivers of Mexican descent, and differences by caregivers' relationship (spouse or adult child). A sample of Mexican-descent older adults and their caregivers was recruited (n = 74 dyads) in Arizona. Each participant completed questionnaires on knowledge, confidence, and acculturation. There were moderate but significant associations among higher Anglo Orientation with Knowledge and with Confidence. Fear of HHCS was positively associated with higher Anglo Orientation and English Language Preference; and negatively associated with Mexican Orientation and Spanish Language Preference. For Spouse caregivers, Fear of HHCS was positively correlated with higher Anglo Orientation and English Language Preference; for Offspring caregivers, Fear of HHCS was negatively correlated with Mexican Orientation and Spanish Language Preference. Results support assessing caregiver cohort and socio-cultural context to decrease HHCS use disparities by Mexican-descent caregiving families.

Collective Care: Multiple Caregivers and Multiple Care Recipients in Mexican American Families.

PURPOSE: Specific stressors associated with caregiving in Mexican American (MA) families are not well documented, yet caregiving issues are paramount because informal care for parents is central to their culture. Although MA families who band together to provide care for one member are not unique, the literature does not describe the phenomenon of collective caregiving, which may be widespread but unrecognized. This article describes these understudied families who are poorly served by contemporary health systems because their characteristics are unknown. DESIGN: Descriptive, multisite, longitudinal mixed-methods study of MA caregiving families. FINDINGS: We identified three types of collective caregivers: those providing care for multiple family members simultaneously, those providing care successively to several family members, and/or those needing care themselves during their caregiving of others. DISCUSSION AND CONCLUSIONS: Collective caregiving of MA elders warrants further investigation. IMPLICATIONS FOR PRACTICE: Exploration of collective caregiving may provide a foundation for tailored family interventions.

Carga familiar objetiva y subjetiva de pacientes con trastornos mentales severos a partir del family burden interview schedule

Resumen:“The Family Burden Interview Schedule – Short Form" (FBIS-SF) de Tesseler yGamache, es una entrevista que permite valorar la carga objetiva y subjetiva, querepresenta para las familias, el cuidado de pacientes con trastornos mentales severos.El Objetivo propuesto fue analizar la carga familiar objetiva y subjetiva.Material y Método: La Entrevista es de formato Modular (11 Módulos) conpuntuaciones independientes. Las áreas abordadas son carga objetiva y subjetiva enayuda familiar en actividades de la vida cotidiana, contención de comportamientosalterados, motivo de preocupación por el paciente, gastos económicos, cambios en larutina diaria del cuidador, motivos de preocupación por el paciente, ayuda quedispone el informante, repercusiones en la salud del cuidador, beneficios ygratificaciones, estigma y repercusión global del informante y del entrevistador. Cadamódulo se valora mediante respuestas. Dicotómicas y Escalas de tipo Likert,compuesto por diferentes números de ítems.La muestra poblacional fue seleccionada en 93 cuidadores mayores de 18 añosque lleven conviviendo más de 30 días con familiares donde se recopiló la informaciónde datos, tales como: edad, sexo y vinculación familiar.En la presente investigación se efectuó un análisis de la fiabilidad y deconsistencia interna, así como una adaptación semántica. Con los registros obtenidosdel instrumento se generó una base de datos a fin de estructurar organizativamentelas variables involucradas en el estudio...

Abstract:“The Family Burden Interview Schedule - Short Form” (FBIS-SF) of Tesselerand Gamache, it is a subjective interview that allows to value the objective load andthat represents for the families the care of patients with severe mental upheavals. Theobjective in this one investigation, it was to analyze the objective and subjectivefamiliar load.Matherials and methods: The interview is Modular format (11 you modulate)with independent ratings. The areas addressed are objective and subjective burden onfamily assistance in activities of daily living, containment of altered behavior, concernfor the patient, economic costs, changes in daily routine caregiver concerns by thepatient, help has the informant, impact on the caregiver's health, benefits and perks,stigma and overall impact of the informant and the interviewer. Each modulates isassessed by Dichotomous responses and Likert scales composed of differentnumbers of items. The population sample was selected in 93 caregivers aged 18 withcoexisting to over 30 days with relatives where information was collected dates, suchace age, sex and family ties. In the present investigation an internal analysis of thereliability and consistency ace well cultural ace to adaptation was made. With recordobtained from the instrument generated to variable database to organizationallystructure the involved in the study...

Testing of applicability of mutuality scale with Mexican American caregivers of older adults.

By 2050, Mexican Americans (MAs) will become the largest aged minority subgroup in the United States. Although older MAs often depend on family for care, no standard instrument is available to scale the motive for filial obligation. Building on previous work, the purpose of this study is to establish psychometric properties of the bilingual Mutuality Scale (MS) for use with MA family caregivers of older adults. A methodological design with a convenience sample is used. Through Principal Axis Factoring with Oblimin(©) rotation, a two-factor structure emerge--interaction between the caregiving dyad and reaction from the care recipient--which accounted for 63% of the variance in MS scores. Cronbach's alphas are .87 in both cases and test-retest estimates across three weeks are r = .93 and .94, respectively. Despite needing further refinement, the MS shows potential to measure the motive involved in older adult care, which may be useful in designing culturally relevant interventions for the MA population.

Mexican American Adolescents' Family Caregiving: Selection Effects and Longitudinal Associations With Adjustment.

One hundred ten Mexican American adolescents (12 - 17 years) who provide infant care for their older sisters were studied to determine the effects of family caregiving responsibilities on adolescents' adjustment. Controlling for prior adjustment and family context factors, providing many hours of caregiving predicted an increase in youths' school absences and disciplinary problems. Frequent conflict surrounding caregiving was associated with increased stress and depression and lower school grades. Older girls appear to select into caregiving and experience the most problematic outcomes. Strong family obligations were not protective against caregiving stress but, rather, further compromised youths' well-being for those who were highly involved in their family's care.

Famílias cuidadoras de pessoas com dependência: um estudo bibliográfico / Familias cuidadoras de personas dependientes: un estudio bibliográfico / Family caregivers of chronically ill people: a bibliographic study

This is a qualitative bibliographic research study which aimed to identify in literature aspects related to family caregiving of chronically ill people and verify the change in their families' routine. Some criteria were used to select the material and one of them was to register, in the data basis of Latin American and Literature and Health Sciences, Nursing data bank, CAPES and Public Health Virtual Library dissertations data bank, the information obtained. Thirteen works were analyzed from April to June, 2005. Results showed that the caregiving familiy's role can be considered as easy and difficult, being classified in two thematic categories: 1- changes in family routine; 2- changes in family relationship. Assistance to caregiving family of careceiver or of chronically ill people should be understood as part of their rehabilitation process. Assisting the family and their needs, listening to them, acknowledging their strong points and providing support should be taken as health professionals' permanent activities.

Estudo bibliográfico de natureza qualitativa que teve por objetivo identificar na literatura os aspectos relacionados ao cuidado das famílias com pessoas dependentes de cuidado e verificar a mudança na rotina da família decorrente da presença de uma pessoa com dependência de cuidados. A seleção do material se deu a partir de alguns critérios, e um deles era constar na base de dados Literatura da Latino-Americana e do Caribe em Ciências da Saúde; Banco de Dados em Enfermagem; banco de teses da Capes e Biblioteca Virtual em Saúde Pública. Foram analisados treze trabalhos no decorrer dos meses de abril a junho de 2005. Os estudos relataram que as famílias apresentam facilidades e dificuldades para cuidar de seu familiar e foram encontradas duas categorias temáticas: 1 - mudanças na rotina familiar; 2 - mudanças nas relações familiares. Considera-se que a realização da assistência à família cuidadora de um portador de doenças e agravos não transmissíveis (DANT’s) precisa ser entendida como parte do processo de reabilitação do familiar dependente. Assistir a família e a suas necessidades, ouvi-la, reconhecer seus pontos fortes e oferecer apoio precisam ser atividades contínuas dos profissionais de saúde.

Estudio bibliográfico de la naturaleza cualitativa que tuvo por objetivos identificar en la literatura los aspectos relacionados al cuidado de las familias con personas dependientes de cuidado y; verificar el cambio en la rutina de la familia decurrente de la presencia de una persona con dependencia de cuidados. La selección del material empezó a partir de algunos criterios y uno de ellos era constar en las bases de dados Literatura Latino-Americana y del Caribe en Ciencias de la Salud; Banco de Dados en Enfermase; banco de teces de la CAPES y Biblioteca Virtual en Salud Publica. Fueran analizados 13 (trece) trabajos en los meses de abril a junio de 2005. Los estudios relataran que las familias presentan facilidades y dificultades para cuidar de su familiar e fueran encontradas dos categorías temáticas: 1- cambio en la rutina familiar, 2- cambios en las relaciones familiares. Considera-se que la realización de la asistencia a la familia cuidadora de un portador de dolencia crónica necesita ser entendida como parte del proceso de rehabilitación del familiar dependiente. Asistir a familia y sus necesidades, oírla, reconocer sus puntos fuertes y ofrecer apoyo necesitan ser actividades continuas de los profesionales de la salud.