Caregivers of Frail Elderly and Medically Fragile Children:

The purposes of this study were to compare the characteristics and support systems of caregivers of frail elderly and medically fragile children and to determine what factors discriminated between caregivers who could (and could not) continue to provide home health care. Caregivers of children were significantly more likely (X²= 52.30)2), p= < .0000) to report that they were managing OK than caregivers of frail elderly. They also reported receiving more support and assistance from formal and informal sources, although in general, less than 30% of the caregivers received any help. Five variables (Mental impairment of the elder, poor physical and mental health of the caregiver, high monthly caregiving-related expenses, and use of paid in-home assistance) explained 35% of the variance between caregivers of frail elderly who were managing OK and those who were unable to continue to manage. Six variables (physical and mental impairment of the child, physical health of the caregiver, feeling like there were no alternative providers, time demand and lack of assistance from others) explained 26.57% of the variance between caregivers of children who were managing OK and those who were unable to continue to manage. The findings suggest that a strong objective stressor, combined with a lack of personal and social resources are associated with caregivers' perceptions that they cannot continue to manage home health care.     

Caregivers of Children With Disabilities: A Comparison of Those Managing "OK" and Those Needing More Help

A survey was mailed to caregivers of children with disabilities to ascertain how they were managing caregiving. Caregivers reporting they were managing "OK" were compared to those who reported they needed more help or could not manage much longer ("not OK"). Results showed the not OK group of caregivers had children who were more severely impaired and functionally dependent. Their mothers were in poorer physical and mental health, had greater demands placed on their time and finances, and received less emotional support from friends and family. Special programs provided some assistance but not enough to meet their needs.     

Post-hospital support program for the frail elderly and their caregivers: a quasi-experimental evaluation.

This paper evaluates the Post-Hospital Support Program for the frail elderly and their caregivers using a quasi-experimental design. The program goals were to reduce stress in the caregivers, improve functioning and reduce mortality in patients, and reduce health service utilization in patients. Subjects were patients at the Johns Hopkins Hospital in Baltimore, Maryland, age 65 or over, who were returning home to the care of a non-paid caregiver and who had extensive post-hospital care needs which were expected to continue for at least one year. The 93 comparison group patient/caregiver pairs were discharged between May 15, 1983 and May 14, 1984. The 98 treatment group pairs were discharged between May 15, 1984 and May 14, 1985. Interviews were conducted with patients and caregivers at 1, 3, 6, 9, and 12 months after discharge. Results showed a slight reduction in caregiver stress and a substantial reduction in hospital days used by the treatment group. When confounding and history effects are taken into consideration, an average difference of 6.5 days per patients remains. The data also suggest that the treatment program may have postponed some deaths and nursing home placements. The results suggest that support services for the frail elderly and their caregivers can be cost efficient by reducing hospital length-of-stay. Savings were estimated at $4,585 per patient per year in this study. However, further work is needed to design programs which more effectively reduce caregiver stress.     

Caregivers of elderly relatives: spouses and adult children.

A problem in the provision of home health care for elderly people is the limited number of family members available for caregiving. Current trends in federal, state, and local policy formation suggest an increasing emphasis on the family as an appropriate caregiver. Therefore, it is necessary to examine how family relationships affect the caregivers' responses to their caregiver situation. Data are presented from 206 caregivers enrolled in a larger longitudinal study of family members caring for elderly dependent relatives. The sample is divided into four caregiver groups: (1) spouses who have children, (2) spouses who have no children, (3) adult children who have siblings, and (4) adult children who have no siblings. Measures selected for comparison were perception of burden, caregiver involvement, affective social support, mental health status, and use of community services. Differences were found among the four groups of caregivers. Implications for social work intervention are discussed.     

Emotional and physical demands on caregivers in home care to the elderly in Switzerland and their relationship to nursing home admission

BACKGROUND: Planning the home care of growing numbers of old, dependent people must include the caregivers' burden. METHODS: A convenience sample of 129 caregivers of elderly patients with multiple diagnoses was interviewed about the caregiving context, burden, caregivers' tolerance of patients' troublesome behaviours and physical symptoms, mutuality and feelings of closeness between caregiver and patient. Continued maintenance of home care was assessed by a follow-up telephone call. RESULTS: Caregivers were mainly spouses (67%) and female (73%), and the mean duration of care was 5.5 years. In five activities of daily living (ADL) 50-69% of the patients needed full help. Caregivers reported predominantly negative effects of caregiving on their physical and mental health, rest and sleep, leisure time and social life, problems with patients' symptoms and behaviours and little or no conversing (51%) or exchanging feelings with patients (71%). PREDICTIVE MODELS: Contributors to variance were for burden (35%), impact of care on caregivers' mental health, social relations and leisure time, patients' gender, accumulation of patients' symptoms and behaviours; for caregivers' tolerance toward patients' symptoms and behaviours (17%) caregivers' physical health, patients' level of confusion, feelings of mutuality; for mutuality (22%) and for closeness (19%) caregivers' mental health, patients' accumulation of symptoms and behaviours. Within 23 months 19% of the patients had been institutionalized. Factors giving a higher likelihood of institutionalization were: being male, caregiver was not a partner, and less closeness between caregiver and patient. CONCLUSION: Caregiving of older persons has bio-psychosocial ramifications for caregivers. Closeness between caregiver and patient seems to be a key factor in determination of the long-term outcome.     

Les aidants de personnes âgées non dépendantes ont-ils des spécificités ? Étude auprès de 876 dyades personnes âgées-aidants

BackgroundThe increase in life expectancy and the aging of the population have a significant impact on the informal care provided by caregivers. Protecting caregivers against excessive burden has become a public health priority. The majority of studies target only those providing care for dependent elderly people. The aim of this study was to describe the characteristics of informal caregivers of non-dependent elderly persons, their difficulties and their level of burden.MethodsA cross-sectional study was conducted among 876 dyads: elderly people (over 70 years of age, non-dependent, living at home and having requested assistance from CARSAT South-East) and their caregivers. Two questionnaires were administered: one for the elderly (including the Frailty Group Iso-Resource Evaluation) and one for caregivers (including the Mini-Zarit Scale). A multi-component analysis and a logistic regression were performed.ResultsThe elderly were mainly women (77.6%) with a mean age of 82.2 ± 5.8 years and most were frail (94.7%). Most of the caregivers were women (64.5%) with a mean age of 62.7 ± 13.7 years. The multi-component analysis showed three categories of caregivers: spouses, children and others. Among them, spouses performed the most tasks (4.8 ± 2.6) and had the greatest burden. Caregivers in the “others” category were the least burdened and were the least impacted in their daily life. The children category caregivers were divided into two subgroups: those with characteristics similar to “others” caregivers and those with characteristics similar to “spouse” caregivers. Heavy burden was related to greater impact on daily life, poor relationships with the elderly and caregivers’ difficulties in performing their role.ConclusionThis study confirms the heterogeneous nature of informal caregiver profiles. It also shows that the characteristic features and the burden of these caregivers are similar whether the elderly person is dependent or non-dependent but frail.     

Psychological distress among Chinese adult-child caregivers: the effects of behavioral and cognitive components of care

This study examined the effects of behavioral and cognitive components of care on caregivers' psychological distress among adult children who were the primary caregivers of frail older adults living in the community in Hong Kong. The sample was drawn from a 2008 data set that was used to determine the eligibility for long-term care in Hong Kong. Logistic regressions evaluated the association between caregiver psychological distress and the behavioral and cognitive components of care with a range of covariates. About 35% of the caregivers showed signs of psychological distress. Caregivers who provided more care for instrumental activities of daily living (IADLs), demonstrated a greater intensity of care, lived with the care recipient, or became dissatisfied with the amount of support received from other family members and friends were more likely to express psychological distress. Providing emotional support to the care recipient and being unable to continue providing care were negatively associated with psychological distress, after controlling for the sociodemographic status and health status of the care recipient.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers’ relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.     

Caregiving Experiences and Health Conditions of Women Veteran and Non-Veteran Caregivers

BackgroundUnique experiences, for example, trauma, of women veteran caregivers may create differences in the caregiving experience and may be associated with health concerns. We examined caregiving factors and health concerns in women veteran caregivers compared to non-veteran women (civilian) caregivers, and identified variables associated with being a woman veteran caregiver.MethodsWe conducted secondary data analyses using data from a multistate survey to examine sociodemographics, the caregiver experience (relationship to recipient, duration as caregiver, hours of care provided, area help is needed, and greatest difficulty faced as a caregiver); emotional support; life satisfaction; lifestyle behaviors; general, physical, and mental health; and chronic conditions in women informal caregivers.FindingsOf women caregivers, more veteran caregivers provided activities of daily living (ADL) help (33%) than non-veteran caregivers (21%; p = .02). There were no differences in years as a caregiver, hours of care provided, or the relationship to the recipient. Poor sleep and poor mental health were experienced by more women veteran caregivers (vs. non-veteran), but physical health, general health, and chronic condition prevalence did not differ. Women veteran caregivers had twofold greater odds of being Black, never married, college educated, and providing ADL assistance. Odds of obesity were lower for women veteran caregivers relative to other women caregivers.ConclusionsWomen veteran caregivers experience health concerns, including sleeplessness, poor mental health, and some chronic conditions. Our cohort were young women, yet had concerns that may be exacerbated by being a veteran and assuming a caregiver role. Comprehensive services to support their needs as veteran patients and as caregivers are needed.     

Inadequate care by family caregiver of frail elderly living at home

In order to elucidate the present situation and background of inadequate care of frail elderly living at home by family caregivers, a questionnaire survey was performed on family caregivers. A total of 408 family caregivers were analyzed. The major results of this survey were as follows; 1. Thirty two percent of caregivers were associated with inadequate care. The percentage of main details of inadequate care were "ignoring" was 19%, "the infliction of mental anguish (e.g. insulting or verbal aggression)" was 14% and "physical injury (e.g. slap, pinch or kick)" was 8%. 2. As a result of the analysis of answers to open-ended questions by caregivers, the reason for inadequate care were classified roughly into three groups as follows; 1. stress and feelings of the caregiver 2. behavior or characteristics of the elderly 3. human relationship between the caregiver and the elderly or the caregiver and the relatives. 3. Frequency of caregiver's emotion of animosity to elderly were "often" was 3.9%, "sometimes" was 18.1%, "occasionally" was 39.2%, "rarely" was 22.5%, "none" was 11.5%. The main reason for animosity were "elderly happened to be angry or complained", "not able to understand caregivers talk", "irritated due to being busy" or "there is no feeling of appreciation in the elderly". 4. The relation of inadequate care and emotion of animosity was large (chi 2 test, P < 0.0001) and correlation of degree of animosity and experience of inadequate care was linear.     

The continuation of home care to severely impaired children and aged in Israel: family attitudes.

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years, they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the caregiver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

Nutrition education may reduce burden in family caregivers of older adults

The chronic, demanding nature of family caregiving for frail older adults creates a high degree of stress for caregivers, called caregiver burden. Caregiver burden compromises caregivers' emotional and physical health and health-promoting behaviors. Deterioration in caregivers' health and nutritional status may put caregivers at risk for chronic disease, diminish the ability of caregivers to provide care, and impair the quality of life experienced by caregivers and care recipients. Nutrition education may help reduce caregiver stress and maintain caregivers' health and well-being. Mediating caregiver stress may allow family caregivers to meet their societal role, which has intensified because of health care cost containment.     

Health status of caregivers of children with cerebral palsy

Background and Aims While a ‘Family‐Centered’ approach to care is accepted as best practice in the context of childhood disability, it may lead to increased demands on family members by requiring them to be active participants in their child's care. This may impact upon the physical and mental health of the caregiver and therefore needs to be investigated. This study aimed to assess the health status of caregivers of children with cerebral palsy (CP) in Ireland and to identify vulnerable subgroups. Methods A cross‐sectional postal survey was conducted using a questionnaire incorporating the SF‐36v2.0. The sample consisted of male and female caregivers of children with CP, representing all levels of ability. Two questionnaires were sent to each child's home; a total of 312 questionnaires were sent to the homes of 156 children. Results Completed questionnaires were returned by 161 caregivers (100 women, 61 men) of 101 children, giving a response rate of 65%. Caregivers of children with CP were found to have poorer health than the Irish general population, for whom normative data exist. Female caregivers had poorer health than male caregivers in both the physical (P < 0.05) and mental health (P < 0.001) domains of the SF‐36. Caregivers spending more time caring had significantly poorer mental health than those spending less time caring (P < 0.05). There was no difference in the health of caregivers of ‘more independent’ versus ‘more dependent’ children, apart from the latter group reporting higher levels of bodily pain (P < 0.05). Conclusion This study provides evidence of the inferior health status of caregivers of children with CP in Ireland, particularly that of women.     

Caregiver Participation in Community-Based Mental Health Services for Children Receiving Outpatient Care

Caregiver participation in child mental health treatment has been associated with better youth outcomes, but little is known about the amount and type of caregiver participation in usual care services for children. This study examined 1,255 caregivers’ reports of their participation in the outpatient services their children received through a large, public mental health system in the Southwest. The majority of the caregivers reported that they participated in their child’s services. Extent of participation was associated with several factors including children’s physical health and caregivers’ primary language, satisfaction with the services, feelings of support, and perceptions of barriers to participation. The findings offer some encouragement for the contextual fit for many evidence-based interventions that focus on caregiver involvement, and highlight which caregivers may need greater encouragement to participate in their child’s care.     

Impact of the positive appraisal of care on quality of life,purpose in life,and will to continue care among Japanese family caregivers of older adults: analysis by kinship type

PURPOSE: The impact of positive appraisal of care (PAC) on the caregiver's quality of life (QL), sense of purpose in life (sense of ikigai) and will to continue care was examined. METHODS: Data were collected from 322 Japanese family caregivers of older adults who were using visiting nursing services through 21 facilities in the Tokyo metropolitan area, and the prefectures of Shizuoka, Mie and Okinawa. RESULTS: The data were grouped by kinship type (husband or son, wife, daughter or daughter-in-law) and analyzed separately. From the multiple regression and logistic regression analyses, the following results were derived: 1) The PAC was not related to the physical QL regardless of the relationship type; 2) The relationship depended upon the relationship type: only the PAC was related to the mental QL among husband and son caregivers, both the PAC and the negative appraisal of care (NAC) were important among wives, only the NAC among daughters, and none of them among daughters-in-law; 3) Both the PAC and NAC were related to the sense of ikigai in all caregiver types except among husband and son caregivers, which showed no relationship between the NAC and sense of ikigai; 4) Both the PAC and NAC were related to will to continue care among son and husband caregivers, whereas only the PAC was among wives and daughters-in-law. Only the NAC was related among daughters. However, the difference across kinship type seems minimal for will to continue care. CONCLUSIONS: Understanding the PAC among family caregivers may be important in order to better assist them to improve their mental QL or sense of ikigai as well as to predict their continuation of caregiving at home. The impact of PAC varies depending on the kinship type, and it should be assessed separately with reference to this pariable to develop plans for appropriate assistance.     

The perspective of employers/families and care recipients of migrant live‐in caregivers: a scoping review

In high‐income countries, migrant live‐in caregivers are increasingly in demand to provide health and social care in the home. While there is a wide range of research on the perspectives of live‐in caregivers (including domestic workers) in destination countries, few studies address the perspective of families who hire them. The aim of this study was to explore the extent, range and nature of international literature on the needs and experiences of employers/families and care recipients of live‐in caregivers. We undertook a scoping review of the literature on this topic using Arksey and O'Malley's five stages. With the assistance of a health science librarian, a comprehensive search of nine databases was undertaken from April to July 2014. Two research assistants independently reviewed 2493 articles. The data were analysed through data charting, numerical summary and thematic analysis. Thirteen articles met the inclusion criteria for the scoping review. Many of these studies (n = 7) were conducted in Israel, and the majority (n = 8) focus on elderly care recipients. The findings reveal the diverse roles live‐in caregivers perform, including emotional and physical care; changes in family dynamics and roles upon hiring a live‐in caregiver; the negative experiences, including abuse, of live‐in caregivers and elderly care recipients; the positive outcomes for families with a live‐in caregiver; and families’ common perception that live‐in caregivers are like kin, a part of the family. Furthermore, evidence points to some degree of bi‐directional emotional support between caregivers and employers/families, which adds complexity to their relations and the negotiation of power.     

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.     

Daily geographies of caregivers: mobility,routine, scale

The bulk of care provided to elderly people living in the community and needing assistance is provided informally by family and friends. This paper investigates themes from an interpretation of interviews with informal caregivers about their experiences of caring for a frail, ill, or disabled elderly person at home. These themes include mobility, routine, and inter-relationships of scale. The caregivers' narratives illustrate the interconnected nature of physical, material and social, emotional aspects of care, and the profound spatial and social impact of providing informal care to a family member on their everyday lives. These are often at odds with political and social constructions of what it means to care at home. Concepts of space, place, and time are shown to be a helpful framework through which to understand issues and experiences of caring. The social and the physical aspects of the many interconnected scales and places which caregivers negotiate on an everyday basis both shape and are shaped by caregiving.