Health as a Family Affair

“…The burden of family caregiving is familiar to most [1]. Spouses' health declines when their partners are hospitalized [2], adult children become anxious and fatigued caring for parents with dementia [3], and parents lose sleep while caring for disabled children [4].…”

Section: Introductionmentioning

confidence: 99%

“…While some families experience solace and relief when their relative's health improves, changes in family dynamics and caregiving responsibilities may come as well: extended life for an elderly frail parent incurs extended caretaking needs; successful treatment for a severely ill child may result in a lifelong disability, with the associated care needs and emotional trauma for the parents [5][6][7]. The shifting locus of care to outpatient settings and the home increases families' involvement in care, and the corresponding effects on their health and well-being [1].…”

Section: Introductionmentioning

confidence: 99%

Spillover Effects on Caregivers’ and Family Members’ Utility: A Systematic Review of the Literature

2019

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Background A growing body of research has identified health-related quality-of-life effects for caregivers and family members of ill patients (i.e. 'spillover effects'), yet these are rarely considered in cost-effectiveness analyses (CEAs). Objective The objective of this study was to catalog spillover-related health utilities to facilitate their consideration in CEAs. Methods We systematically reviewed the medical and economic literatures (MEDLINE, EMBASE, and EconLit, from inception through 3 April 2018) to identify articles that reported preference-based measures of spillover effects. We used keywords for utility measures combined with caregivers, family members, and burden. Results Of 3695 articles identified, 80 remained after screening: 8 (10%) reported spillover utility per se, as utility or disutility (i.e. utility loss); 25 (30%) reported a comparison group, either population values (n = 9) or matched, non-caregiver/ family member or unaffected individuals' utilities (n = 16; 3 reported both spillover and a comparison group); and 50 (63%) reported caregiver/family member utilities only. Alzheimer's disease/dementia was the most commonly studied disease/ condition, and the EQ-5D was the most commonly used measurement instrument. Conclusions This comprehensive catalog of utilities showcases the spectrum of diseases and conditions for which caregiver and family members' spillover effects have been measured, and the variation in measurement methods used. In general, utilities indicated a loss in quality of life associated with being a caregiver or family member of an ill relative. Most studies reported caregiver/family member utility without any comparator, limiting the ability to infer spillover effects. Nevertheless, these values provide a starting point for considering spillover effects in the context of CEA, opening the door for more comprehensive analyses. Key PointsInclusion of caregiver and family member ('spillover') quality-adjusted life-years (QALYs) in cost-effectiveness analyses (CEAs) is recommended by multiple national guidance bodies.Caregiver and family member QALYs can include spillover utilities (the independent utility loss due to a family member's illness) that are rarely reported in the literature; more common are caregivers'/family members' utilities, sometimes in combination with a comparator utility.Research gaps remain in spillover effect estimation and incorporation methods, slowing the adoption of these additional measures of burden into cost-effectiveness evaluations.

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“…Giving effective care engenders a sense of well-being in caregivers. 4 We can help minimize caregivers' stress by directing their energies toward more positive thoughts and productive activity. Also, caregivers can find a sense of purpose and fulfillment in their care responsibilities.…”

mentioning

confidence: 99%

Spousal stress in acute illness

Flegel

2017

CMAJ

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Health as a Family Affair

Cited by 48 publications

References 4 publications

What Adult Cancer Care Can Learn From Pediatrics

What Adult Cancer Care Can Learn From Pediatrics

Spillover Effects on Caregivers’ and Family Members’ Utility: A Systematic Review of the Literature

Spousal stress in acute illness

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