Taking care of a dying grandparent: case studies of grandchildren in the hospice caregiver role

This study aims to provide insight into the role of grandchildren as informal hospice caregivers. It presents 4 cases that highlight the challenges and perceptions of grandchildren who care for a grandparent at the end of life. A researcher met regularly with family caregivers to discuss the problems or challenges during hospice caregiving. Although each caregiver presented unique individual experiences, several themes are common among the family caregivers including fatigue, stress, guilt, and loss of the "grandchild" identity. Grandchildren caregivers often take care of 3 generations (grandparents, parents, and children) and in many cases need additional assistance to help them overcome the challenges associated with managing a household, career, family, and caregiving roles.     

Grandparents raising grandchildren in a US-Mexico border community

When parents are unwilling or unable to care for their children, more often than not, grandparents step up to assume this task. Although insights into the multifaceted and unique needs of custodial grandparents are emerging, there is little research on how these changes in living circumstances impact the lives of custodial grandparents and the grandchildren in their care. In this exploratory study, the authors examined the circumstances under which grandparents in a border community assumed custodial care of their grandchildren and the factors that contributed to their decision. Through semi-structured interviews with six grandparents and five grandchildren, they also explored how grandparents and grandchildren coped with transition, how grandparents understood and found meaning in their role as caregivers of their grandchildren, how grandchildren viewed their grandparents in their new role, and how their lives and relationships had changed.     

Determinants of primary and non-primary informal care-giving to home-based palliative care cancer care-recipients in Ontario,Canada

Informal care plays an important role in the care of care-recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non-primary caregivers. Moreover, little is known about the provision of informal care in the context of home-based palliative care. The purpose of this study was to examine the provision of primary and non-primary informal care-giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non-primary caregivers are those other than the primary caregiver who provide care-giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home-based palliative care cancer care-recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care-giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non-primary caregivers were others rather than spouses and children. The average number of hours of primary and non-primary informal care-giving reported for each 2-week interview period was 83 hr and 23 hr, respectively. Hours of home-based personal support workers decreased the intensity of primary care-giving and the likelihood of non-primary care-giving. Home-based nursing visits increased the propensity of non-primary care-giving. The primary care-giving and non-primary care-giving complement each other. Care recipients living alone received less primary informal care-giving. Employed primary caregivers decreased their provision of primary care-giving, but promoted the involvement of non-primary care-giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non-primary care-giving, to balance the work of the primary caregivers and their care-giving responsibility, and to effectively arrange the formal home-based palliative care services.     

Impact of Grandchild Caregiving on African American Grandparents

The aim of this study was to describe the context and impact of caregiving for grandchildren with health concerns on grandparents. The study sample comprised 391 African American grandparents aged 55 or older. Logistic regression analysis indicated that grandparent caregivers of grandchildren with psychiatric or behavioral problems were more likely to experience a negative impact on their health (AOR = 7.86, p =.008) and leisure (AOR = 14.31, p =.024) than grandparent caregivers of grandchildren with no or other types of health problems. The findings underscore the need to support African American grandparent caregivers, particularly those raising grandchildren with mental health problems.     

Navigating Interdependence: How Adolescents Raised Solely by Grandparents Experience Their Family Relationships

This study examined how adolescents raised solely by grandparents navigated their relationships with their parents and grandparents and how these relationships were influenced by the caregiving context. Forty‐one adolescents participated in qualitative, semistructured interviews. Findings suggest that relationships with parents were primarily companionate or marked by distance and distrust. Grandchildren had strong emotional bonds to their grandparents, although they also negotiated several sources of stress. Participants also reported feelings of gratitude because of the positive influence their grandparents had on their lives. Caregiving context shaped grandchildren’s interdependence with their parents and grandparents in numerous ways. Findings highlight the complexity of grandchildren’s family relationships and underscore the value of a systemic approach to understanding youth who are being raised by grandparents.     

The health of grandparents raising grandchildren: results of a national study.

OBJECTIVES: This study sought to compare the functional and self-rated health of grandparents raising grandchildren with that of noncaregiving grandparents. METHODS: A secondary analysis of data from the 1992 to 1994 National Survey of Families and Households was conducted. Bivariate and logistic analyses compared 173 custodial and 3304 noncustodial grandparents in terms of functional health limitations, self-rated health, and satisfaction with health. RESULTS: Custodial grandparents were significantly more likely to have limitations in 4 of the 5 activities of daily living (ADLs) examined, with more than half reporting some limitation in 1 of the 5 ADLs. A logistic regression analysis indicated that caregiving grandparents had 50% higher odds of having an ADL limitation. Caregivers were significantly more likely to report lower satisfaction with health, and a statistical trend indicated that the caregivers had lower self-rated health. CONCLUSIONS: Further research is needed to determine whether the differences observed reflect artifacts or actual differences in functional abilities and other health measures. The need for policies that support rather than penalize grandparents raising grandchildren is stressed.     

Factors Associated with Stress Among Grandparents Raising Their Grandchildren*

This cross‐sectional study of 129 grandparents raising their grandchildren examined the extent to which social supports are related to the grandparents' stress (psychological anxiety). A hierarchical regression analysis, with variables entered in blocks, revealed that contextual factors, stressors related to caregiving, and lack of supports accounted for 35% of the variance. Younger grandparents, grandchildren with psychological and physical problems, and low family cohesion were associated with stress. Implications for clinical and educational intervention are discussed.     

How Caregiving Grandparents View Support Groups for Grandchildren in Their Care*

Forty‐two grandparents who were primary caregivers to grandchildren completed self‐administered questionnaires and 28 also participated in focus groups to provide their views on the appropriateness and implementation of grandchildren support groups. The vast majority (88%) felt that such support groups would be beneficial, and few differences emerged regarding how they should be ideally implemented when comparing the views of grandparents varying in educational level, age of grandchildren, and status as a human service professional.     

A longitudinal study on public policy and the health of in-house caregivers in Europe

Caregiving has negative effects on the health of informal caregivers. The current aging of the population predicts an increase in the number of informal caregivers worldwide. The effect of available public policies that support informal caregivers in their self-perceived health is an understudied topic. We analyzed the differences in the effects of public support policies in 11 European countries using longitudinal data from waves 5 and 6 of the Survey of Health Ageing and Retirement in Europe. In this cohort, 2303 respondents were in-house informal caregivers. Logistic regression models were fitted adjusting for the main determinants of caregiving. Respite care and caregiver allowances emerged as the most effective measures of support for caregivers’ health maintenance (relative risk [RR] = 0.2; 95 % CI = 0.1?0.8 and RR = 0.5; 95 % CI = 0.3?0.9). Despite the differences in the welfare systems of Scandinavian and Mediterranean countries, informal caregivers in these countries were less likely than those living in Continental or Eastern countries to have declined health two years later. Our results indicate that public support policies are significantly related to caregivers’ subsequent health, but the effects vary by country. Country-specific studies should be performed to take into account the determinants of caregiving linked to the social context of each country.     

Supporting the elderly: workplace programs for employed caregivers.

An aging population and extended longevity are increasing the number of older people needing informal and family support. At the same time, women, the traditional caregivers, have entered the work force in record numbers. Consequently, concerns about how to care for dependent family members have become workplace issues. In response to the needs of employees who care for family members, employers have produced an array of policies, benefits, and programs, including flexible work schedules and information and referral services. Although these programs are a valuable complement to community services and government initiatives, relatively few employers have recognized the potential effects of caregiving on absenteeism, productivity, and turnover; even fewer have responded with workplace programs directed to the needs of their caregiving employees. To fill the gap, the government is considering mandating employee benefits, such as leave time for family illness. Community services are increasingly being directed to the needs of older people and their caregivers.     

The Enjoyment Rewards of Fulfilling a Custodial Grandparenting Role in the Lives of Grandchildren Removed from their Parents’ Care

Custodial grandparenting (i.e. raising grandchildren on a full-time basis) is a global phenomenon. Despite the hardships associated with 24/7 custodial care, grandparents continue to invest in their grandchildren. Why they do so is a matter of much conjecture. For example, it has been posited that grandparents assume custodial care of their grandchildren for reasons of necessity, altruism, aged-care reciprocity, or cultural continuity. This study examines the often overlooked issue of grandparent enjoyment as a motivating force behind custodial grandparenting caregiving investment. The results of our analysis of 88 completed Grandparent Needs, Wellbeing and Health Surveys determined that custodial grandparents’ investiture in their grandchildren is influenced by three types of enjoyment, namely those derived from engagement in the child-centred nurturance of an at-risk grandchild, dyadic engagement in shared activities with their grandchild, and the personal grandparent-centred pleasure benefits to be had from fulfilling a grandcarer role. This study additionally reveals that informal custodial grandparents experience lower levels of closeness to their grandchild/ren, satisfaction with their grandparenting role, and assessment of their state of health than do formal (legal) custodial grandparents. The need to educate custodial grandparents of the potential health benefits to be had from investiture in their grandchildren is discussed.     

How to stay motivated: A focus group study of Norwegian caregivers' experiences with community healthcare services to their parents with dementia

Motivation to provide care is a significant predictor of informal caregiving among family caregivers of persons with dementia. Adequate support is an important source of help and relief to caregivers, but fragmentation of dementia care services is common and better ways of supporting these caregivers are needed. Knowledge of adult-child caregivers' motivation and how this motivation is influenced by community healthcare services is lacking. The aim of this study is therefore to describe and explore adult children's experiences with community healthcare services for their home-dwelling parent with dementia and how these influence their caregiver motivation. The study applied a qualitative design based on three focus group interviews with 15 of these caregivers (40–69 years) in Norway in 2017. The study results indicate three categories supporting adult children's sustained motivation as caregivers: (a) caregivers prioritize their parent's need for healthcare services over their own need for support; (b) caregivers need acknowledgement through respect and involvement; and (c) caregivers need timely information and competence as the dementia progresses. To stimulate collaboration among adult-child caregivers, their parents with dementia, and community healthcare services, we claim that a relationship-centred care framework could be emphasised as a way of supporting sustained motivation among caregivers to parents with dementia as part of community healthcare services.     

Reggio Emilia,Vygotsky, and Family Childcare: Four American Providers Describe their Pedagogical Practice

This case study considers pedagogical techniques used in family childcare to promote children's learning experiences. Data extracted from an earlier study were used to inform this examination of four family childcare providers’ pedagogy. In the current study, I use socio-cultural theory and the Reggio Emilia approach to address the following research question: how do family childcare providers describe learning experiences of children in their care? Four themes emerged from the data: responsiveness to children, children's play, reflective thinking, and didactic teaching. The study indicated that providers’ work is informal, but nonetheless these caregivers follow a natural, experiential learning, along with more didactic practices common to traditional classrooms.     

A comparison between the feeding practices of parents and grandparents

Grandparents play a valuable role in the socialisation of young children, and as many as 36% of British parents use grandparents as their main form of childcare. Research has begun to explore how grandparents impact the social and cognitive development of children, but very little research has evaluated their contribution to child feeding. The present study explores whether there are differences between parents and grandparents in terms of their feeding practices, and whether grandparents' feeding practices are related to the number of hours that they spend caring for grandchildren. Results indicate that grandparents reported using significantly more maladaptive feeding practices such as using food to regulate emotions and restricting food, but more positive practices such as providing a healthy food environment. The more hours that grandparents spent caring for children the more their feeding practices resembled those broadly reported by parents. Results suggest that grandparents can have a measurable impact on child feeding behaviour which in turn is likely to predict the eating behaviours of their grandchildren.     

Challenged to care: informal caregivers in a changing health system

This report is from a 1998 national survey of 1,002 informal caregivers. Each year 23 percent of Americans provide unpaid assistance to ill, disabled, or elderly persons. Most caregivers (71 percent) do not live with care recipients. Primary caregivers provide more care of all types. Nonprimary caregivers also provide substantial care and services. Caregivers perform complex medical tasks, including medication administration, and errors can result. Few receive assistance from paid professionals or aides because of quality or financial concerns. In many areas, support and instruction could lighten caregivers' burdens and help to ensure high-quality care at home.     

Well-being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai,China

A series of policies aimed toward rational resource allocation of long-term care have being actively discussed since the launch of the social long-term care insurance in Shanghai, and it is important to take a societal perspective for informed decision-making. This study aims to explore factors that are associated with well-being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well-being valuation method to monetise informal caregivers' well-being losses in a developing country. 310 informal caregivers of applicants for social long-term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well-being valuation method. Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well-being of informal caregivers. Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.     

Just Like Raising Your Own? Grandmothers’ Perceptions of Parenting a Second Time Around*

Abstract: A defining characteristic of grandparents raising grandchildren is parenting a second generation of children. To learn how grandmothers compare parenting their grandchildren to parenting their children, 40 custodial grandmothers were interviewed. Results of a qualitative analysis indicated that grandmothers perceived themselves as wiser, more relaxed, and more involved with their grandchildren. Grandmothers also perceived added challenges such as having limited energy, negotiating changing family roles, and parenting in a toxic social environment. In terms of parenting behaviors and emotional bonds, some grandmothers saw similarities in parenting their children and grandchildren. Findings suggest that custodial grandmothers would benefit from parent education and training that takes into account their previous parenting experience yet still addresses the unique challenges associated with parenting grandchildren.     

Moral distress experienced by health care professionals who provide home-based palliative care

Health care providers regularly encounter situations of moral conflict and distress in their practice. Moral distress may result in unfavorable outcomes for both health care providers and those in their care. The purpose of this study was to examine the experience of moral distress from a broad range of health care occupations that provide home-based palliative care as the initial step of addressing the issue. A critical incident approach was used in qualitative interviews to elicit the experiences on moral distress from 18 health care providers drawn from five home visiting organizations in south central Ontario, Canada. Most participants described at least two critical incidents in their interview generating a total of 47 critical incidents. Analyses of the critical incidents revealed 11 issues that triggered moral distress which clustered into three themes, (a) the role of informal caregivers, b) challenging clinical situations and (c) service delivery issues. The findings suggest that the training and practice environments for health care providers need to be designed to recognize the moral challenges related to day-to-day practice.     

The system of informal caregiving as inequality

In our setting, it is families, not the health and social services, who play the greatest role in providing continuous care to persons in need of such services. Informal health care poses two key questions with regard to the issue of equity: differences in the burdens borne by men and women, which contribute to gender inequality and, depending on their educational and socio-economic level, inequities in their ability to choose and gain access to needed resources and support services, thus contributing to social class inequalities. Distributing the burden of caregiving between men and women, and between the family and the state, constitutes a crucial debate in public health. This study analyzes the concept and characteristics of informal care, provides data on its dimensions in our setting, and analyzes the profile of caregivers, as well as the work they do and the impact it has on their lives. Finally, it presents currently existing models and support strategies for informal caregivers. It is largely women who assume the principal role of providing informal care, undertaking the most difficult and demanding tasks and dedicating the largest share of their time to them. As a result, women bear an elevated cost in their lives in terms of health, quality of life, access to employment and professional development, social relations, availability of time for themselves, and economic repercussions. Unemployed, under-educated women from the least privileged social classes constitute the largest group of informal caregivers in our country. Any policies aimed at supporting those who provide such care should keep in mind the unequal point from which they start and be evaluated in terms of their impact on gender and social class inequality.     

Coping resources:effects on the psychological well-being of african american grandparents raising grandchildren

The impact that parenting responsibilities have on the psychological well-being of African American grandparents raising grandchildren is an increasing concern in American society. Contemporary research studies indicate that African American grandparents who encounter a variety of challenges in raising their grandchildren are able to cope successfully with these situations if they derive a sufficient amount of psychological rewards from raising grandchildren (Giarrusso, Silverstein, & DuFeng, 2000). These rewards include increased gratification, feelings of usefulness, and increasing pride in their own abilities to meet new challenges (Fuller-Thomason & Minkler, 2000). This article will investigate how the coping resource factors of intergenerational solidarity, informal social support and spirituality enhance the psychological well-being of African American grandparents who are raising their grandchildren. doi:10.1300/J045v22n03_09.