The desire for support and respite care: preferences of Dutch informal caregivers

Informal care is an indispensable element in the care for many patients. In order to maintain a sustainable input of informal care, it seems important to identify measures to alleviate the burden of care giving for caregivers at risk of burn out or other serious health problems, such as support and respite care. Thus, far research has focused on the burden of caregiving and on the supply of respite care. The demand side: what type of care is preferred by informal caregivers and what determines their preferences, is virtually unknown. We analysed the preferences and the underlying determinants for several types of support and respite care in a sample of 950 Dutch informal caregivers. Almost 80% of the respondents desire support or respite care in general, 42-47% would prefer more communication with other informal caregivers or more information of professional caregivers. Some time off is preferred by 40% of the respondents. The results show that caregiver characteristics, care recipient characteristics, elements of the caregiving situation and institutional variables determine the desire for support and respite care. Especially, the subjective burden of caregiving is important, whereas the number of caregiving tasks and the time invested (objective burden) hardly affect the desire for support and respite care.     

"We don't have a back-up plan": an exploration of family contingency planning for emergencies following stroke

Little research has explored emergency preparedness among families coping with stroke. In this longitudinal qualitative study, we explored contingency caregiving planning by interviewing (N?=?18) family caregivers providing care for a stroke survivor at home during the first 6 months post-discharge from the hospital. Emergent themes showed most families did not have a concrete "back-up plan" for a crisis or disaster situation involving the primary caregiver being unable to provide care. Furthermore, they assumed formal respite services or long-term care would be available should the need arise. Despite increased awareness over time, most caregivers had not devised contingency plans at 6 months.     

“We Don't Have a Back-Up Plan”: An Exploration of Family Contingency Planning for Emergencies Following Stroke

Little research has explored emergency preparedness among families coping with stroke. In this longitudinal qualitative study, we explored contingency caregiving planning by interviewing (N?=?18) family caregivers providing care for a stroke survivor at home during the first 6 months post-discharge from the hospital. Emergent themes showed most families did not have a concrete “back-up plan” for a crisis or disaster situation involving the primary caregiver being unable to provide care. Furthermore, they assumed formal respite services or long-term care would be available should the need arise. Despite increased awareness over time, most caregivers had not devised contingency plans at 6 months.     

An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan

Limited time away from the child is cited as the main factor that increases the burden for the primary caregiver of severely disabled children. The aim of this study was to quantitatively elucidate the factors related to the desire to use social services and the actual use of respite care services by the primary caregivers of severely disabled children in Japan. In this study, we investigated the use of respite care services in accordance with the primary caregivers’ wishes by examining inhibiting or promoting factors associated with respite care service use only among those who wished to use social services. A total of 169 Japanese mothers participated and answered the questionnaires. We conducted a logistic regression analysis and a multiple regression analysis to investigate the factors related to respite care service use. The most important factors affecting a primary caregiver's desire to use social services were the belief that the child would enjoy using social services and the family's approval of the social service use. The most important factors affecting respite care service use were the family's approval of the use and a large care burden on the primary caregiver. Respite care services should be sought out before the care burden becomes too great to enable the primary caregiver to more easily contribute to the continuation of home care. A background of mother–child separation anxiety disrupted the use of respite care. However, believing that the child enjoys using social services may reduce primary caregivers’ psychological resistance to being separated from their child, which is supported by tradition. Thus, it is also important for respite care service providers to provide information about the children to their primary caregivers and families while they are using respite care services.     

Effects of respite care training on respite provider knowledge and confidence,and outcomes for family caregivers receiving respite services

Respite services are vital in supporting informal caregivers in need of a break from their caregiving duties. A respite training program aimed at developing respite provider competence and improving caregiver well-being was evaluated. Trainees experienced significant growth in their perceived respite knowledge and confidence to deliver respite from pretraining to posttraining. An objective core competency assessment confirmed posttraining knowledge in 10 core areas of respite. Family caregivers provided more favorable ratings on various measures of their well-being while receiving respite from a trained provider compared to before respite began and if respite were to end. Findings suggest that formal training prepares providers to deliver quality respite resulting in improved caregiver outcomes.     

Depressive Symptoms and Use of Home-Based Respite Time in Family Caregivers

This study investigated the relationship between activities during respite time and depressive symptoms in family caregivers (N = 74) of older adults receiving in-home respite services. Contrary to prior research, demographic contextual variables (caregiver gender, household income, and dyad relationship) and care recipient problems (behavioral dysfunction and functional impairment) were not associated with caregiver depressive symptoms, nor was total minutes engaged in discretionary activities during respite. Self-reported depressive symptomatology in family caregivers was significantly and inversely related to both past service usage and total minutes of chore time completed on a typical home-based respite day. Implications for research in this area and service delivery are discussed.     

Social and economic incentives for family caregivers.

The recent emphasis on developing programs and policies to support families who care for aged relatives makes it important to understand the families' receptivity to the specific social and economic incentives under consideration. The research reported in this paper draws on the experiences of 203 individuals identified as the primary caregiver to an aged frail relative currently receiving home care or day care services in New York City. As part of a larger study of caregiving behavior, respondents were asked to rank their preferences for various service and economic support programs. Findings indicate that family caregivers perceive service and social supports, specifically medical care and homemaker service, as more crucial than both direct and indirect financial incentives. Furthermore, the issue of economic incentives elicited an extremely negative reaction from a significant minority who refused to consider such support in their personal family situations. The analysis indicated that the caregiver's background characteristics were not critical in differentiating caregivers who select either a service or an economic incentive. Among the set of variables defining the current caregiving situation, only sex of the aged relative and utilization of home care services were significantly related to choice of program. Respondents caring for females and high service utilizers were more likely to prefer service supports. Relevance of findings to current policy initiatives regarding financial incentives to families are presented.     

Achieving a restorative mental break for family caregivers of persons with Alzheimer's disease

Background/Aim:  This phenomenological exploration of how caregivers of persons with Alzheimer's disease achieve a mental break defined them as distinct periods of freedom from caregiving concerns and conceptualised them as the essence of respite and as a restorative occupation.
Methods:  Four in-depth interviews each with 15 family caregivers revealed two categories.
Results:  Factors associated with achieving a mental break included: social support, traditional respite, relief-enhancing conditions, techniques for momentary stress reduction, and respite impediments. Achieving a mental break included mental break techniques and experiencing a mental break.
Conclusions:  Restorative mental breaks are often within caregiver control, are achievable independent of formal respite services, and involve both rest and engagement in absorbing activities. Restorative breaks are often pleasurable, support productivity, may be entwined with caregiving activities, and importantly, do not compromise care recipient well-being.     

Psychiatric home care of elderly persons with depression: unmet caregiver needs

The purpose of this study was to explore what nursing interventions are currently being provided to family caregivers of elderly persons with depression as a part of standard home health care; and identify unmet needs of these family caregivers. Unmet caregiver needs were examined from both the family caregiver and staff nurse perspective, using caregiver structured interviews and staff focus groups. Ten caregivers participated in structured interviews and nine staff nurses participated in three focus groups. Caregivers reported unmet needs concerning support and respite, dealing with their own feelings, learning more about care-related tasks and role changes, and stress management. Similarly, nurses speculated that nursing interventions should focus on increased counseling, family and community support, assisting caregivers with their learning needs and care-related responsibilities. These findings contribute toward a better understanding of interventions currently provided to caregivers of depressed elderly persons, as a part of standard psychiatric home care; identify unmet caregiver needs; and suggest areas for future psychiatric research in home care settings.     

Gender differences among Canadian spousal caregivers at the end of life

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2‐year period (2000–2002) in south‐central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross‐sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males (t = –2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting‐related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01–3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility‐related tasks (OR = 0.41, 95% CI = 0.21–0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05–0.53, P = 0.002). To address gender differences in caregiving, a realistic home‐based palliative care approach must take into account the importance of informal caregivers.     

Access barriers to and unmet needs for home- and community-based services among older korean americans

This cross-sectional survey study of 146 caregivers of older Korean Americans explored access barriers to and unmet needs for home- and community-based services (HCBS) programs (respite care, adult day care, personal care, home health, housekeeping, and transportation). Most often reported access barriers were lack of awareness and care recipient refusal. Predictors of unmet needs varied depending on the type of service, but included caregiver gender, relationship, education, caregiving duration, Medicaid coverage, English proficiency, caregiver self-efficacy, care recipient functional dependency, cognitive impairment, and caregiving hours. This study highlighted unmet needs for HCBS in Korean American communities, pointing to the pressing need for a collaborative effort to develop plans that modify and expand HCBS programs for older Korean Americans.     

Access Barriers to and Unmet Needs for Home- and Community-Based Services Among Older Korean Americans

This cross-sectional survey study of 146 caregivers of older Korean Americans explored access barriers to and unmet needs for home- and community-based services (HCBS) programs (respite care, adult day care, personal care, home health, housekeeping, and transportation). Most often reported access barriers were lack of awareness and care recipient refusal. Predictors of unmet needs varied depending on the type of service, but included caregiver gender, relationship, education, caregiving duration, Medicaid coverage, English proficiency, caregiver self-efficacy, care recipient functional dependency, cognitive impairment, and caregiving hours. This study highlighted unmet needs for HCBS in Korean American communities, pointing to the pressing need for a collaborative effort to develop plans that modify and expand HCBS programs for older Korean Americans.     

Keeping it in the family: caregiving in Australian-Greek families

Family-based caregiving refers to the daily provision of help to a co-resident family relative with the usual activities of daily living, custody and protection of a dependent relative at risk of self-injury, and support of a person with physical, developmental and/or mental disability or frailty due to ageing. Many reports from western studies refer to the caregiving burdens, stress and strains. A common view of migrant peoples is that they 'look after their own' to a greater extent than do English-speaking groups and that their closer connections with ethno-specific community organisations and with their extended family networks provides more opportunities for assistance and support so that caregiving is shared and the burdens are reduced. A study was carried out with 300 Australian-Greek families in Melbourne where 150 were providing family-based caregiving, and these were age and gender matched with friends or acquaintances who had no such duties. Most care was provided by women, although almost 20% of carers were men. A wide range of disabilities and illnesses were receiving help and care in the caregiving families among care recipients aged from childhood to advanced old age. Distinct evidence of caregiving burden was found to a significant degree. Gender differences were apparent in the type of disorders managed, in the perceived severity of caregiving duties provided and in the total range of activities engaged in. The ethno-specific community organisations and extended family networks played little part in providing assistance to caregivers which challenges the myths of a close-knit migrant community looking after its own. Qualitative reports of concerns for future caregiving were expressed and the implications for future service needs are discussed.     

Keeping It in the Family

SUMMARY

Family-based caregiving refers to the daily provision of help to a co-resident family relative with the usual activities of daily living, custody and protection of a dependent relative at risk of self-injury, and support of a person with physical, developmental and/or mental disability or frailty due to ageing. Many reports from western studies refer to the caregiving burdens, stress and strains. A common view of migrant peoples is that they ‘look after their own’ to a greater extent than do English-speaking groups and that their closer connections with ethno-spe-cific community organisations and with their extended family networks provides more opportunities for assistance and support so that caregiving is shared and the burdens are reduced. A study was carried out with 300 Australian-Greek families in Melbourne where 150 were providing family-based caregiving, and these were age and gender matched with friends or acquaintances who had no such duties. Most care was provided bywomen, although almost 20%ofcarers were men. A wide range of disabilities and illnesses were receiving help and care in the caregiving families among care recipients aged from childhood to advanced old age. Distinct evidence of caregiving burden was found to a significant degree. Gender differences were apparent in the type of disorders managed, in the perceived severity of caregiving duties provided and in the total range of activities engaged in. The ethno-specific community organisations and extended family networks played little part in providing assistance to caregivers which challenges the myths of a close-knit migrant community looking after its own. Qualitative reports of concerns for future caregiving were expressed and the implications for future service needs are discussed.     

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

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 Q-methodological study was conducted. Informal caregivers were asked to rank-order 39 statements regarding motivation for providing informal care; supporting capacity; physical, psychological, practical, financial, relational and social obstacles; subjective burden; need for support; experienced support; and propensity and impediments to make use of respite care. In addition, respondents explained their Q-sort in writing and completed a questionnaire regarding characteristics of the caregiver, the care recipient, and the objective and subjective burden of their care giving situation. Individual Q-sorts were analysed using PQMethod 2.11 (statistical method factor analysis with a varimax rotation). Objective of Q-analysis was to reveal a limited number of corresponding ways the statements were sorted. For the factors identified, composite sorts were determined. Factors were interpreted and described using the composite sorts, differences and similarities in rank value of statements between factors and the explanations by respondents. RESULTS: We found three distinct groups of caregivers: informal caregivers who need and ask for respite care, those who need but won't ask for respite care, and those that do not need respite care. Caregivers in the first two groups experience substantial burden, while those in the third group enjoy sufficient support and appear to manage pretty well. Caregivers in the second and third group derive considerable satisfaction from care giving. On balance, caregivers in the first two groups would sometimes rather have someone else take over their task. The first group feels misunderstood and undervalued by health and welfare organisations and has problems obtaining respite. The desire for respite of caregivers in the second group is not unambiguous, affected by care recipient resistance against respite. CONCLUSIONS: Respite care programmes should target caregivers in the first two groups. Regarding the second group, effort should be directed to both caregiver and care recipient. They need to be convinced that it is in their mutual interest to make the care giving task manageable in the long run, because they report serious burden from care giving coupled with a resistance to respite care.     

Patient outcomes in hospital-based respite: a study of potential risks and benefits.

BACKGROUND: Primary care physicians provide increasing care for elderly patients with chronic disabilities. To maintain these individuals in the community, families and other caregivers are supplying more intensive support in the home. Services, such as short-term respite care, can relieve the caregiver burden and allow the patient to continue community living. Whether hospital-based respite can be an effective option for patients is unclear. METHODS: To determine the patient outcomes in hospital-based respite, 15 elderly male respite patients (mean age 71 years) were matched and compared during a 6-month period with 14 elderly acute care control patients and 16 community-based elderly control patients who were chronically ill and were enrolled in a hospital-based home-care program. RESULTS: The average respite stay was 15 days. The respite group did not experience increased risk of mortality or iatrogenesis. Benefits at 6 months included fewer admissions for acute medical care for the respite group (P less than 0.05). Total number of hospital days was equivalent for the respite group and community-based control patients and was fewer than that for the acute care group. CONCLUSION: The results do not indicate any harm and argue that a slight benefit is associated with hospital-based respite for chronically ill older adults. Because of potential complications that can develop for chronically ill geriatric patients, a hospital setting for respite can be a viable respite alternative. A valid concern for physicians, however, remains the potential danger of a greater rate of iatrogenic illness and expectation of more aggressive care based on a tertiary care model.     

Effectiveness of day care service for elderly patients with dementia and their caregivers as observed by comparison of days with and without day care services

PURPOSE: To explore the effectiveness of day care service for the dementia elderly and their caregivers. METHODS: Subjects were sixty caregivers who took care of dementia elderly and were using day care service in two municipalities. The data on caregiving, care burden of caregivers, and time schedule of daily life were obtained from a questionnaire that was distributed at the five day care centers and collected through home visits. The data from a day with day care were compared with data from a day without. RESULTS & DISCUSSION: 1. Caregivers reported that their care burden was reduced on the day with day care, even though their time schedule for the day was not so different from the day without day care. 2. The harder the caregiving became, the more caregivers felt relieved on the day with day care. 3. Obviously, day care would no be expected to have the same effect in situations in which the caregiver is elderly or works outside the home all day. CONCLUSION: When we think about day care it is important to provide a well adapted home care program which effectively meets the needs of the dementia elderly and their caregivers.     

Family support for hospice caregivers

This qualitative study investigated family supports for primary caregivers of hospice patients, as perceived by both the primary caregiver and other family members involved in patient care. Family support was conceptualized in terms of (1) who offers support; (2) types of support; (3) frequency of support; (4) family communication; and (5) change in family relationship during the caregiving process. Twenty-four interviews were conducted with 10 primary caregivers and six family members identified by the caregiver as the person they could most call on for help. Interviews were conducted shortly after admission to hospice and approximately two months after the death of the hospice patient. Primary caregivers and other family members involved in care agreed that the primary caregiver provided most care. They also agreed that family members provided instrumental and emotional support, the frequency of assistance was appropriate, and families had grown closer since learning of the terminal illness. There was less agreement regarding family communication during the caregiving process. Implications for interventions with families of hospice patients are discussed.