Can burdened caregivers be effective facilitators of elder care‐recipient health care?

BACKGROUND: Caregiving by informal family caregivers of dependent older people in the community may be affected by burden and by the personal and social resources available to the caregiver. Given the increase in the dependent older population, study of factors affecting informal caregiving is necessary. AIMS: To examine caregiver resources, burden and competence as predictors of health-care facilitation on behalf of older patients. DESIGN: Cross-sectional data were collected by an interview schedule from 240 randomly sampled spousal and filial caregivers in Jerusalem. Study variables included caregiver background variables, general self-concept and feelings of caregiver competence, informal and formal social support, burden and levels of health-care facilitation. Path analysis was performed to clarify the direct and indirect predictors of health-care facilitation. RESULTS: Caregiver facilitation of health-care was positively related both to the presence of personal and social resources and to burden levels. The results suggest that quality caregiving can coexist with burden, provided that ample caregiver resources are present. The most important resources were caregiver sense of competence and support from the professional health-care provider. DISCUSSION: Caregiving burden is not readily reducible, given the chronic nature of older people's health problems. However, caregiver resources can be bolstered, particularly by health professionals. Nurses, who are orientated to holistic family centred care, are especially well-suited for this important intervention.     

Determinants and characteristics of help provision for elderly people living at home and in relation to quality of life

The aim of this study was to investigate determinants of help from informal or formal caregivers or a combination of both among people aged 75 or more and living at home, and the characteristics of the recipients, the help they received and their quality of life (QoL). The sample for this study was 448 elderly people, 75-99 years of age, living at home and receiving help with activities for daily living, instrumental or both instrumental and personal. Regression analysis showed high QoL not to be significantly related to who was providing the help, whilst it was related to higher age, living with someone, lower number of complaints and managing to be alone at home. Multinomial regression analysis showed age, number of children, number of complaints, the ability to stay alone at home and living alone to predict receiving help from different kinds of caregivers. Recipients receiving help from informal caregivers were younger, more often married and living together with someone, whilst those receiving help from both informal and formal caregivers had more help with instrumental and personal activities for daily living and were not able to stay alone at home as much as those receiving help from other kinds of caregivers. Those receiving help from formal caregivers had fewer children, were single and were living alone more often than the other recipients. Thus the responsibility for help for elderly people rests heavily on informal caregivers, whom it seems essential to support. As public service at home is preferably given to those living alone or able to stay alone at home, those without relatives may not be able to remain at home when their need of help increases.     

The impact of informal caregivers on depressive symptoms among older adults receiving formal home health care

This study evaluated the association between presence and types of informal caregivers and the presence of depressive symptoms among older adults receiving formal home health care (HHC). A secondary analysis of data was conducted using a computerized patient care database, the Outcome and Assessment Information Set. Logistic regression analyses were used to examine the data of 8448 patients aged 65 years or older who had been admitted to an HHC agency from acute care hospitals between January 1, 2002 and June 30, 2002. The outcome variable was the presence of depressive symptoms. The primary predictor variable was the presence and types of informal caregivers. Covariates included demographic variables, health status, length of time enrolled in formal HHC, patient living arrangements, and the frequency and types of care received from informal caregivers. A lower percentage of older adults receiving care from both informal caregivers and a formal HHC agency (13.3%) had depressive symptoms than older adults receiving only formal HHC (14.9%) at the end of a 60-day episode in formal HHC. Older adults without an informal caregiver were more likely to experience depressive symptoms than those with an informal caregiver after a 60-day episode in HHC (odds ratio = 1.229, 95% confidence interval = 1.027-1.471). There was no significant association between the types of informal caregivers and the presence of depressive symptoms.     

Elders' needs and experiences of receiving formal and informal care for their activities of daily living

Older people living in the community or institutional settings are more likely to require help with their activities of daily living, with women more likely than men to need some help. The interviews in this qualitative study were conducted with a convenience and purposive sample of 20 elders living in Southeast Washington, USA, at home or in institutional settings, receiving informal or formal health care. Findings related to personal and instrumental activities of daily living are reported and include elders' experiences and views relating to the help and assistance they receive. The majority of elders needed help with their instrumental activities of daily living, provided by informal networks, whether living at home or in institutional settings. This help constituted social care. Formal health care with personal activities of daily living was required only by a minority of elders and constituted those with the greatest disability and dependency.     

Personalismo and breaking barriers: accessing Hispanic populations for clinical services and research

Thirteen percent of Hispanic households provide care to an adult aged 50 or older, but given their dramatic population growth, an increasingly large number of families will soon be placed in a caregiving role. The purpose of this study was to determine whether Hispanic caregivers could be accessed through local provider groups, with the goal of generating interventions to decrease caregiver burden. Study findings raise Anglo nurses' awareness of the need for staff who share the values and language of diverse subgroups. Second, they confirm the presence of male caregivers, sons who alone provide personal care to a parent. Lastly, the effect of empathetic, informal interactions and personal stories in communication with Hispanics cannot be overstated. We believe that our findings are of interest to clinicians who help Hispanic families access community care agencies and, conversely, will help community agencies identify families who need assistance and clinical researchers who are seeking study participants.     

Working together–apart: Exploring the relationships between formal and informal care networks for people dying at home

Abstract

Introduction

Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together.

Methods

Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants.

Findings

Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice.

Conclusion

Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.     

Assisted living: aging in place and palliative care

Principles of upstream palliative care can guide the planning, programs, and services associated with aging in place in assisted living residences (ALRs). Frail older adults who do not need a nursing home level of care are choosing to live-and die-in ALRs. This article describes the context of assisted living, resident characteristics, key indicators of palliative care, barriers to end-of-life care, and the role, responsibilities, and potential for professional nursing in assisted living. Stakeholder concerns about staff knowledge and skills in care of the elderly, medication management, the risks associated with residential care, and nursing delegation are discussed.     

The Oldest Old and Personal Activities of Daily Living

The aim of this study was to evaluate the actual function of the personal activities of daily living in old people living in nursing homes and in the community. Another purpose was to evaluate and document the nursing load. The assessments were made over a four-week period. Two groups of individuals, aged 80 years or older, were compared with respect to ability to perform activities of daily living. The first group comprised old people who had been resident in nursing homes for at least six months, while those in the other group lived alone in the community and received some kind of assistance from the home service providers. The subjects in the latter group were less disabled than those residing in nursing homes. Age group comparisons among nursing-home residents showed no significant differences in the capacity of residents to function in activities of daily living, nor in the case of those living in the community. The nursing staff in the nursing-home setting had a heavier work-load than those working in the community concerning performance of personal activities of daily living. Caring for old people in institutions as well as in the community creates substantial challenges for the care personnel.     

Informal care providers for veterans with SCI: who are they and how are they doing?

Veterans with spinal cord injury (SCI) who received care at the Houston Department of Veterans Affairs Medical Center were interviewed about their use of formal and informal assistance to meet their daily physical needs. Informal caregivers were found to play an important role in the daily care of veterans with SCI, with 37% receiving some informal, unpaid assistance-with personal care. Primary informal caregivers were mostly women, had a mean age of 53, and provided an average of almost 12 hours of care a day. Nearly one-third of participants rated their primary caregiver as being only in fair or poor health, and one-fourth thought their caregiver was unlikely to be able to provide the same level of care 5 years from now. Of particular concern, more than half reported that they did not have anyone else willing and able to provide assistance if their primary family caregiver became permanently unable to care for them.     

Functional ability and health complaints among older people with a combination of public and informal care vs. public care only

The aim of the study was to investigate functional ability and health complaints of people, 65+, living in special accommodation (equivalent to nursing home) and their counterparts who live at home and receive municipal care or a combination of municipal and informal care. Persons (n = 1958) receiving municipal care were assessed in terms of functional ability, health complaints, and level of informal and municipal care and services. The results showed that more home care, services and help with Instrumental Activities of Daily Living (IADL) were provided to those receiving only municipal care at home, while more home care and services associated with Personal Activities of Daily Living (PADL) as well as nursing care were provided to those receiving informal care in addition to formal care. Cohabitation was a predictor of a combination of municipal and informal care in the home (OR: 5.935), while assistance with IADL provided by municipal home care and services predicted municipal care only (OR: 0.344). Care in special accommodation was predicted by advanced age (OR: 1.051), dependency in IADL (OR: 19.883) and PADL (OR: 2.695), and impaired cognitive ability (OR: 3.849) with receiving municipal care only as a reference. Living alone (OR: 0.106), dependency in IADL (OR: 11.348) and PADL (OR: 2.506), impaired cognitive ability (OR: 3.448), impaired vision or blindness (OR: 1.812) and the absence of slowly healing wounds (OR: 0.407) were predictors of special accommodation with a combination of informal and municipal care at home as a reference. The distribution of municipal care divided older people into three distinct groups. The most frail and elderly people who had no cohabitants received care in special accommodation, determined by their level of physical and cognitive dependency. The frailest individuals living at home were cohabiting and received a combination of municipal and informal care, while those who were less dependent mainly had help with IADL from municipal care only. The results indicate that there is a shift from the substitution to the complementary model and highlights that attention to the family carers is needed.     

The nature of care giving in a community sample of people with multiple sclerosis

PURPOSE: The provision of informal care plays a crucial role in supporting those with long term illness such as MS to stay in the community, but there is no recent United Kingdom (UK) research into the nature of this care provision and how it interacts with professional community care. The aim of this study was to investigate the nature of informal and professional care in a community population of people with MS living in the UK from the perspectives of people with MS. METHOD: Data on the Standard Day Dependency Record (SDDR), Barthel Index, a measure of disability, and SF-36 were collected from a community sample of volunteers with MS from a postal questionnaire and visits from researchers. RESULTS: The response rate was 61%, (n = 169). Respondents in this study were most likely to be assisted by family rather than health or social service professionals and the help was considered essential for approximately 70% of individuals. Only 15% of respondents in this survey received visits from a professional in the preceding 24 h. There was a subgroup who considered help to be significantly more essential and who required assistance on more occasions by the SDDR (t = 13.01, df = 622, p < 0.001, t = 10.38, df = 36.4, p < 0.001). Other subgroups were also identified who may be in need of support from professionals but who were not receiving it. CONCLUSIONS: There are reports of considerable amounts of care being provided by families to people with MS who may not be receiving the support required from professional caregivers. Further work needs to establish which groups need assistance and what form this assistance should take.     

The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying

This study explored how elderly people living in the community perceive issues around death, dying, and the end of life using a qualitative grounded theory approach. Forty individuals aged between 80 and 89 years who were living alone in the community were interviewed and were identified through purposive and random sampling. The results revealed that issues associated with end of life included fear of how they would die, fear of becoming a burden to others, wanting to prepare for and have a choice with regard to where and when they die, and issues relating to assisted dying. The study demonstrated that issues relating to the end of life are a major concern for older people, but are seldom addressed by professionals. Listening to and understanding the views and experiences of the older age group regarding end-of-life care is needed if adequate person-centered care is to be delivered to this ever-growing population group.     

Living arrangements and health status in later life: a review of recent literature

The living arrangements of older persons play a key role in their use of formal and informal care, as well as in their health and well-being. Nurses engaged in primary care, discharge planning, and home care are strategically positioned to contribute to an optimal fit between older persons and their home environment. This article describes the demographic significance of late-life living arrangements and proposes a model for organizing the complex web of factors associated with household composition and late-life migration. The article then summarizes qualitative and quantitative evidence in support of the proposed model. Key areas for nursing research and strategies for applying available research are identified.     

Psychosocial factors affecting hip fracture elder's burden of care in Taiwan

OBJECTIVE: The aim of this study was to analyze the factors that affect the burden of care for primary caregivers of older people during the transition period after discharge from the hospital to home. METHODS: Using convenience sampling, 95 older patients who had been hospitalized for a hip fracture and their primary caregivers were enrolled. Data pertaining to the burden experienced by the caregivers were collected 1 week and 1 month after discharge from the hospital. RESULTS: The burden of care was characterized as moderate. Physical functioning of the older people improved gradually with time after discharge from hospital (F = 164.582, p < .001) and were negatively related to caregiver burden. The predictive factors for caregiver burden 1 week after hospital discharge included the older people's physical functioning and self-efficacy, which together contributed to 15.6% of the total variance in caregiver burden. The predictive factors for caregiver burden 1 month after hospital discharge were the degree of caregiver burden at 1 week and social support, which together contributed to 56.0% of the total variance in caregiver burden. CONCLUSION: A health education program should be designed to improve the primary caregiver's knowledge of providing care and suggest strategies to increase social support to reduce the overall burden of care.     

Predictors of elders' and family caregivers' use of formal home services

The purposes of this study were to examine the characteristics of care recipients, caregivers, and their relationship to predict the use of formal services in the home by functionally impaired elders, and to explore the effect of informal care on formal service use in the home. A secondary analysis of data from the informal caregiver questionnaire and the community survey of the 1989 National Long-Term Care Survey was performed using logistic regression analysis. Results showed that the utilization of formal services was less frequent as the hours of informal care increased. Care recipient characteristics that emerged as important predictors included residence in elder housing, recent hospitalization, gender, limitations in activities of daily living, recipient of Medicaid, age, quantity of informal care, and number of household members. Important caregiver characteristics included difficulty getting around outside, rearrangement of work hours, and bowel and bladder care performed by female caregivers. The findings from this study support the consideration of both care recipient and caregiver characteristics when predicting the utilization of formal service use in the home. Data also support the development of interventions to promote the caregiving process. © 1998 John Wiley & Sons, Inc. Res Nurs Health 21:533–543, 1998     

Functionally impaired elderly: their need for home nursing care

An understanding of care requirements of functionally impaired elderly living in the community is especially important to community health nurses (CHNs), if they are to maximize services to elderly care recipients and their lay caregivers. This study is a report of the functional status of 53 elderly care recipients who were receiving care by informal and formal caregivers. Findings on the functional abilities of elderly in this study are compared with findings from studies of nursing home and community residing elderly. Implications for nursing practice relative to assessments and interventions for functionally impaired elderly are given. Results of the research point to the need for additional investigations to determine home-care needs of growing numbers of of frail elderly.     

Hip fracture: family caregivers' burden and related factors for older people in Taiwan

Aims. The purpose of this study was to explore the burden experienced by caregivers during the transition from hospital to home. Background. With a growing older population, home‐based care has gradually gained more recognition. Most older people with hip fracture in Taiwan have to be discharged at a relatively early stage. Therefore, the caregiving tasks falls on the families. Methods. A total of 98 older people with hip fracture and their caregivers were interviewed. The sample was selected from three medical centres in Taipei, and questionnaires were collected at one week and one month following hospital discharge. Results. (i) Family caregivers were usually women (63.3%) with spouses being the primary caregivers in most cases (30.6%). About one‐third of caregivers took care of other family members on top of their responsibilities caring for the sick elders at home, and 77.6% shared the care tasks with others. (ii) The caregivers experienced moderate burdens. About 91.8% of caregivers reported ‘I feel sad watching the elder's health deteriorating’, 84.9% reported ‘I must keep an eye on the elder constantly’ and 56.7% reported ‘Taking care of the sick elder at home makes me feel exhausted’. (iii) Caregiver burden and the functional level of older people were adversely correlated. (iv) Caregivers who were unable to access other resources for help and/or had provided care to the older person prior to the fracture resulting in hospitalization experienced a higher burden. Conclusions. These findings should be helpful in the formulation of evidence‐based discharge planning and home health care services. Relevance to clinical practice. Comprehensive discharge planning and developing social support systems for family caregivers to reduce caregivers burden are needed.