A qualitative analysis of family caregiver perspectives from the Caregiving Transitions Study

Abstract As people live longer, informal caregiving for family and friends is becoming increasingly common. Caregiver satisfaction with their role is now of greater importance to an increasing proportion of the U.S. population. Most research on caregivers has studied convenience samples, often restricted to caregivers of people with dementia. Various studies have examined the impact of caregiving on caregivers’ health but to our knowledge there are no qualitative studies of caregiving experiences from caregivers in population-based samples. This study investigated the impact of caregiving on participants who transitioned into a caregiving role while participating in a national population-based study. Participants were from the Caregiving Transitions Study, which is ancillary to the Reasons for Geographic and Racial Differences in Stroke (REGARDS) Study. We thematically analyzed responses from 150 caregivers providing care for multiple different conditions to an open-ended question asked at the time of enrollment and designed to encourage caregivers to share additional details about their caregiving experience. Four major themes were identified: cultural/family expectations; growth opportunities and reciprocity; stressors and challenges; and recommendations. Participants shared both positive and challenging experiences in their role as a family caregiver as well as the impact that these experiences had on their lives. Caregivers shared that one of the most important motivations for taking on this role was their sense of duty toward family. Caregivers also highlighted the positive impact of caregiving on their lives such as opportunities for personal growth, acquisition of new skills, and finding a sense of fulfillment and gratitude.

"sandwich" position between older parents and children and include multiple transfer directions and types over time to assess the links between social inequality and intergenerational solidarity in Europe's ageing societies.The impact of Covid 19 on this issue will also be considered.

THE COSTS OF CONCERN: HEALTH IMPLICATIONS OF WORRIES ABOUT AGING PARENTS AND ADULT CHILDREN
Kelly Cichy, 1 and Athena Koumoutzis, 2 1. Kent State University, Kent,Ohio,United States,2. Miami University,Oxford,Ohio,United States As their parents age and their children enter adulthood, midlife adults need to manage their worries and concerns about both generations.In midlife, worries about aging parents' health and emerging needs for support co-occur alongside worries about adult children's relationships and prolonged need for support.Research reveals links between midlife adults' worry and sleep quality, underscoring how worries compromise health and well-being.In addition to compromising sleep, worries may also contribute to poor health behaviors, such as emotional eating.Emotional eating, where individuals eat in response to stressors and negative emotions, is a significant risk factor for overeating and obesity.Less is known; however, about how midlife adults' worries contribute to poor health behaviors.To address this gap, the current study considers how midlife adults' concurrent and previous day's daily worries about aging parents and adult children are associated with daily well-being and health behaviors.Respondents are midlife adults (40-60 years) from Wave II of the Family Exchanges Study (Fingerman et al., 2009).During 7 days of daily telephone interviews, respondents indicated if they worried about their adult children and their aging parent(s), if they ate food for comfort, and their daily negative mood.Controlling for demographics, on days when midlife adults worried about their adult child(ren), they reported more negative emotions than on days without these worries (p <.05).Respondents engaged in more eating for comfort the day after they reported worrying about their mother (p < .05).Implications for aging families will be discussed.

THE EFFECTS OF SOCIAL SUPPORT ON THE PSYCHOLOGICAL WELL-BEING OF OLDER PARENTS: A LONGITUDINAL STUDY Erik Blanco, University of Southern California, Leonard Davis School of Gerontology, Los Angeles, California, United States
This study examines whether parental support (the provision of social support by older parents to adult children) and filial support (older parents' receipt of social support from adult children) influence two orthogonal dimensions of older adults' psychological wellbeing: positive feelings and negative feelings.This study also highlights the importance of accounting for parental need as a mediator of social support.A longitudinal design is used to examine the effects of social support on the psychological wellbeing of older adults at Wave 6 (1998) and Wave 8 (2004) of the Longitudinal Study of Generations.Parental support significantly increases parents' positive feelings, which suggests that, when it comes to positive feelings, it is better to give support than to receive it.Filial support findings indicate that older adults with greater level of disability demonstrate a decrease in negative feelings when they received filial support.However, this effect does not hold for older adults with lesser levels of disability, suggesting that, when it comes to older adults' negative feelings, it is better to receive support (rather than to give it) when parents are in need.Although parental and filial support have the potential to buffer stressful life transitions in old age, most parents wish to remain independent, even in later life, making them reluctant to accept filial support.The parent-adult child relationship is crucial for psychological wellbeing, especially because of increased life expectancy.

THE IMPACT OF LIVING ARRANGEMENTS AND INTERGENERATIONAL SUPPORT ON THE HEALTH STATUS OF OLDER PEOPLE IN CHINA
Yazhen Yang, Maria Evandrou, and Athina Vlachantoni, University of Southampton, Southampton, England, United Kingdom Research to-date has examined the impact of intergenerational support in terms of isolated types of support, or at one point in time, failing to provide strong evidence of the complex effect of support on older persons' wellbeing.Using the Harmonised China Health and Retirement Longitudinal Study (2011, 2013 and 2015), this paper investigates the impact of older people's living arrangements and intergenerational support provision/ receipt on their physical and psychological wellbeing, focusing on rural/ urban differences.The results show that receiving economic support from one's adult children was a stronger predictor for higher life satisfaction among older rural residents compared to those in urban areas, while grandchild care provision was an important determinant for poor life satisfaction only for older urban residents.Receiving informal care from one's adult children was associated with a poor (I) ADL functional status and with depressive symptoms among older rural people.Meanwhile, having weekly in-person and distant contact reduced the risk of depression among older people in both rural and urban areas.The paper shows that it is important to improve the level of public economic transfers and public social care towards vulnerable older people in rural areas, and more emphasis should be placed on improving the psychological well-being of urban older residents, such as with the early diagnosis of depression.

Family
Caregivers'

Perceptions and Experiences
As people live longer, informal caregiving for family and friends is becoming increasingly common.Caregiver satisfaction with their role is now of greater importance to an increasing proportion of the U.S. population.Most research on caregivers has studied convenience samples, often restricted to caregivers of people with dementia.Various studies have examined the impact of caregiving on caregivers' health but to our knowledge there are no qualitative studies of caregiving experiences from caregivers in populationbased samples.This study investigated the impact of caregiving on participants who transitioned into a caregiving role while participating in a national population-based study.Participants were from the Caregiving Transitions Study, which is ancillary to the Reasons for Geographic and Racial Differences in Stroke (REGARDS) Study.We thematically analyzed responses from 150 caregivers providing care for multiple different conditions to an open-ended question asked at the time of enrollment and designed to encourage caregivers to share additional details about their caregiving experience.Four major themes were identified: cultural/ family expectations; growth opportunities and reciprocity; stressors and challenges; and recommendations.Participants shared both positive and challenging experiences in their role as a family caregiver as well as the impact that these experiences had on their lives.Caregivers shared that one of the most important motivations for taking on this role was their sense of duty toward family.Caregivers also highlighted the positive impact of caregiving on their lives such as opportunities for personal growth, acquisition of new skills, and finding a sense of fulfillment and gratitude.

AN INTEGRATIVE THEORETICAL MODEL TO PREDICT POSITIVE ASPECTS OF CAREGIVING IN DEMENTIA
Doris Yu, 1 Sheung-Tak Cheng, 2 and Timothy Kwok, 3 1.University of Hong Kong, Hong Kong, Hong Kong, 2. The Education University of Hong Kong, The Education University of Hong Kong, Hong Kong, 3. The Chinese University of Hong Kong, Shatin, N.T., Hong Kong, Hong Kong Family caregiving for dementia is the crucial informal care resource to buffer the associated disease burden.Whereas substantial research focused on ameliorating the caregiving burden through increasing their coping resources, least attention is placed on how to promotive their positive aspects of caregiving (PAC).This longitudinal exploratory study aimed at testingWhereas the perceived self-efficacy was further enriched in the context of good social sup an integrative theoretical model which attempts to explain the evolvement of PAC from the paradigm of stress and coping and existentialism.From to June 2017 to April 2020, we have recruited a total of 403 dementia caregivers from the a geriatric clinic in Hong Kong (mean age = 56.2,SD = 12.2; child-caregiver: 73.9%).About 61% of them were taking care of PwD of moderate to severe dementia.Validated instruments were used to measure the hypothesized model constructs.By using path analysis, it was found that PAC was evolved from two conditions, including i) perceived self-efficacy developed through active coping strategies for carers with good to moderate social support and ii) meaning-focused coping in the context of high religiosity, better social support and active coping.Data-model fit was evident by RMSEA = 0.023, CFI = 0.994, NFI = 0.968 and AIC = 97.762.The findings suggested that PAC was evolved from the interaction of the stress-coping and meaning-making process.Empowering carers for successful caregiving experience, facilitating them to make meaning in the process, enhancing good dyadic relationship and social support are crucial to cultivate PAC.Informal caregiving, defined as unpaid care provided to a relative or friend with some sort of special need, is a topic of research across different disciplines.Previous research highlights the prevalence and heterogeneity of caregivers in terms of their age, gender, relationship with the care recipient, and the duration of care provision.However, most research focuses on a specific episode of caregiving.Little is known about the people who provide care to multiple recipients throughout their own life.To fill this gap, we examined data from the HRS Spring 2017 Life History Mail Survey (N = 3520; age range 50-101 yrs).Participants reported their relationship with people to whom they had provided unpaid care for ≥ 6 months (max 5) and listed the start and end years of care.Compared with people who had not provided care, caregivers (N = 1000, 28%) were more likely to be women, white, and currently widowed.They cared for their parents (67%), spouses (22%), children (11%), or other relatives (16%) and 30% reported providing care two or more times (M = 1.44,SD = 0.81).Respondents, who reported multiple episodes of caregiving were more likely to be women, widowed, aged between 25 and 50 at the time of first providing care.People who first cared for their spouse were less likely to report multiple caregiving episodes comparing with those who cared for parents or children.Future research will examine the health and well-being consequences associated with caregivers' histories of providing unpaid care to others.

CAREGIVING BETWEEN SPOUSE AND ADULT CHILD CAREGIVERS OF OLDER ADULTS WITH COGNITIVE IMPAIRMENT
Nicole Garcia, 1 Anna Papazyan, 2 Sarah Choi, 3 and Yeonsu Song, 1 1.UCLA, Los Angeles, California, United States,2. VA Greater Los Angeles Healthcare System,California,Los Angeles,California,United States,3. University of California,Los Angeles,Los Angeles,California,United States Prior studies of caregiving characteristics by type of caregivers are inconsistent, particularly those who are spouses and adult children.This study examined caregiving characteristics between spouses and adult children of cognitively impaired older adults.We analyzed phone-screening data from an ongoing trial of a dyadic sleep intervention program for persons with dementia and their caregivers.Data included spouse caregivers (n=52) and adult child caregivers (n=24).Nearly all participants (95%) lived with their care recipients