Informal Hospice Caregiving: The Toll on Quality of Life

Wilder, Heidi M.; D, Parker Oliver; Demiris, George; Washington, Karla T.

doi:10.1080/15524250903081566

Cited by 22 publications

(14 citation statements)

References 40 publications

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“…Research on family caregiving has detailed the considerable stressors faced by individuals providing care for an ill or aging relative; such stressors can exact a significant toll on caregivers’ quality of life, physical health, and psychological well-being (Goode, Haley, Roth, & Ford, 1998; Schulz & Beach, 1999; Wilder, Parker Oliver, Demiris, & Washington, 2008). An extensive body of research has linked physical and mental health with social support in the general population (Thoits, 1995; Uchino, Bowen, Carlisle, & Birmingham, 2012) and among family caregivers, specifically (Haley, LaMonde, Han, Burton, & Schonwetter, 2003; Roth, Mittelman, Clay, Madan, & Haley, 2005; Thielemann & Conner, 2009).…”

Section: Introductionmentioning

confidence: 99%

Understanding Social Support Burden Among Family Caregivers

Wittenberg-Lyles

Washington

Demiris

et al. 2013

Health Communication

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Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered.

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Section: Introductionmentioning

confidence: 99%

Understanding Social Support Burden Among Family Caregivers

Wittenberg-Lyles

Washington

Demiris

et al. 2013

Health Communication

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“…A number of socio-demographic factors including age, gender, socioeconomic status and the type and quality of the caregiver relationship have been identified as contributing to caregivers stress. The effect of all of the socio-demographic variables mentioned above on the caregiver's quality of life is unclear as findings from previous studies have been mixed (Wilder, Oliver, Demiris, & Washington, 2008). A study conducted by Carter, Lewin, Rashid, Adams, and Clover (2008) indicated that enhanced quality of life for caregivers was correlated with caregivers who were married to the care recipient, male, older, and had achieved a minimum of a high school education.…”

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confidence: 99%

The Impact of Caregiving on the Development of Major Depressive Disorder and Generalized Anxiety Disorder

Markey

2015

Journal of European Psychology Students

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Providing care for a relative is associated with psychological distress and a higher prevalence of psychological disorders. This study investigated the prevalence of anxiety and depressive disorders among the caregiving population. The study was based on data drawn from the Collaborative Psychiatric Epidemiology Surveys (CPES). Binary logistic regressions were conducted to examine these associations and to identify factors influencing the development of depressive and anxiety disorders. The analysis indicated that respondents providing care for a relative were at a higher risk of developing a psychological disorder. A number of socio-demographic variables were identified as increasing the risk of developing a psychological disorder such as being younger, female and divorced. The findings highlight the importance of support and interventions for family caregivers.

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“…3 These caregivers typically experience multiple stressors, including witnessing the progression of the patient’s terminal illness, performing caregiving tasks, observing the patient’s cognitive and behavioral changes, and feeling guilt and anticipatory grief. 4 While these difficult experiences may negatively impact the physical and psychosocial well-being of caregivers, 5 research shows that social relationships can moderate the emotional and physical strain that result from caregiving. 6–8 While low levels of social support for caregivers have been associated with higher morbidity and mortality, 9 higher levels of support have been found to protect against depression.…”

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confidence: 99%

“…In one related study, 5 researchers documented an apparent decline in caregivers’ perceived social quality of life during the period of time in which they received hospice services. Shortly after their family member enrolled hospice, the mean score of caregivers’ social quality of life was higher than any of the other measured quality of life domains including physical, financial, and emotional quality of life.…”

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confidence: 99%

“…Thirty days later, however, the mean score of caregivers’ social quality of life was the lowest of the four measured domains. 5 Similarly, in studies of caregivers of individuals with dementia, it has been found that the number of people available to provide social support to caregivers decreased over time. 14 This is consistent with national studies, which suggest that most caregivers spend less time with family members and friends while in the caregiving role.…”

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The Social Convoy for Family Caregivers Over the Course of Hospice

Albright

Washington

Parker-Oliver

et al. 2016

Journal of Pain and Symptom Management

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Context Family caregivers provide a central role in the care of those in hospice care. Little is known about the social support networks for those providing this day to day care without training. Objectives The purpose of this study was to explore changes in family and friend social networks among hospice caregivers over the course of the hospice stay. Methods Data on social support networks was collected as part of a multi-site randomized controlled trial and analyzed using structural equation modeling. Results A statistically significant decline in the caregivers’ family network subscale score was found over the four-week period during which they received hospice services, reflecting a possible weakening of their family networks. Conclusion This illustrates the potential importance of ongoing comprehensive assessment of caregiver networks and attention to interventions that may assist in both capitalizing on both the quantity of support (numbers of individuals asked to help) and the quality of social support (attending to issues of support burden).

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Informal Hospice Caregiving: The Toll on Quality of Life

Cited by 22 publications

References 40 publications

Understanding Social Support Burden Among Family Caregivers

Understanding Social Support Burden Among Family Caregivers

The Impact of Caregiving on the Development of Major Depressive Disorder and Generalized Anxiety Disorder

The Social Convoy for Family Caregivers Over the Course of Hospice

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