Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis

Silies, Katharina; Köpke, Sascha; Schnakenberg, Rieke

doi:10.1136/bmjspcare-2021-003095

Cited by 13 publications

(8 citation statements)

References 71 publications

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“…The evidence is emphatic: health professionals must understand family relationships and attune communication and clinical interventions to both the patient’s values and the experience of the chosen family caregiver. 34 – 36 As standards develop to alleviate the caregiver crisis, we must pause-family caregivers are not a monolith and family caregiver inclusion is not a level playing field. There must be widespread, sustained adoption of multilevel interventions to dismantle barriers that prevent SGM patients and their chosen families from experiencing safety and belonging.…”

Section: Where Do We Go From Here?mentioning

confidence: 99%

Family caregiver inclusion is not a level playing field: toward equity for the chosen families of sexual and gender minority patients

2022

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Across cultures, the family caregivers of patients with serious illness shoulder complex psychosocial, financial, and physical burdens. [1][2][3] Often with little or no assistance, they bear witness to the suffering of loved ones and frequently confront difficult decision-making and care planning challenges. The national caregiving crisis in the United States alone is characterized by an estimated 53 million Americans providing uncompensated care to their loved ones who are sick or have special needs. 4 Efforts to lighten complex caregiver burdens are actively being forged through myriad policy and practice recommendations. 5,6 Although many caregiver-related standards are evidence-based, they are also derived from heteronormative and cisnormative lenses that are inherently exclusionary for sexual and gender minority (SGM) communities and require further discourse.Sexual and gender minority groups: overlooked and unseen SGM people worldwide face government-sanctioned violence, injustice, and human rights violations. [7][8][9] Even the Sustainable Development Goals -the boldest humanitarian agenda of our time pledging to 'leave no one behind' -gives no explicit mention to SGM populations, despite their higher risks for poverty, poor health outcomes, gender bias, and other inequalities when compared with non-SGM groups. 10,11 The National Academies have described in-depth the detrimental socioeconomic and health impacts of structural discrimination on the well-being of SGM persons. 12 Their findings revealed significant health disparities for SGM groups, including higher rates of mental and physical health challenges, cancer risk, homelessness, substance use disorder, and suicide than non-SGM groups. The National Academies also noted protective factors, such as having supportive teachers and chosen families. Many SGM individuals rely heavily on families of choice -the self-fostered social support bonds that provide interpersonal stability, particularly when relationships with families of origin are strained or absent. [12][13][14][15]

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Section: Where Do We Go From Here?mentioning

confidence: 99%

Family caregiver inclusion is not a level playing field: toward equity for the chosen families of sexual and gender minority patients

2022

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“…The attitude of family members toward ACP also affects their engagement in ACP. Some families may think that ACP means giving up and losing hope [ 46 ].…”

Section: Discussionmentioning

confidence: 99%

“…The perception and acceptance of ACP in public in the mainland of China are relatively low [ 49 ]. In addition, the avoidance attitude of Chinese people toward death would be a significant barrier to ACP [ 46 , 50 ]. Owing to multiple factors, such as cultural factors, public awareness, policy and regulations, and religious factors, it is currently not the best time to promote ACP in the entire society in the mainland of China [ 51 ].…”

Section: Discussionmentioning

confidence: 99%

A good death from the perspective of healthcare providers from the internal medicine department in Shanghai: A qualitative study

Chen

Lai

Zhao

et al. 2022

International Journal of Nursing Sciences

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“…When time goes by, family caregivers may take over the duty of making decisions at the end of an older adult's life (Silies et al, 2021).…”

Section: Preferred Decision Maker After Becoming Incapablementioning

confidence: 99%

Decision‐making preferences on end‐of‐life care for older people: Exploration and comparison of Japan, the Hong Kong SAR and South Korea in East Asia

Kwong

Song

et al. 2022

Journal of Clinical Nursing

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Aims and Objectives The aim of this study was to examine and compare decision‐making preferences on end‐of‐life care for older people in Japan, the Hong Kong SAR and South Korea. Background Cultural values and beliefs influence decision‐making on end‐of‐life care. Design A cross‐sectional design was adopted. Methods Community‐dwelling people aged ≥65 with additional requirements were recruited in 2016–2017 in the three regions. Their decision‐making preferences on end‐of‐life care were assessed using Pang et al.'s questionnaire. These preferences and their sociodemographic and personal experience variables were compared and analysed using univariate and multiple logistic regressions. The STROBE checklist was followed. Results This study involved 415 participants. In all three regions, the most preferred decision maker and person with whom to discuss end‐of‐life care issues was a family member. Participants in the Hong Kong SAR were less likely to select a family member as their preferred decision maker than those in Japan (adjusted odds ratio = 0.129). Koreans were less likely to discuss end‐of‐life care issues with medical professionals than people in Japan (adjusted odds ratio = 0.278). More than 70% of the participants in each region indicated that they would not prefer to leave an advance directive to decide their end‐of‐life care. Conclusion Older Asians prefer to make their own decisions after consulting others. Family members play an important role in helping older people plan their preferred end‐of‐life care arrangements, even acting as decision makers when older people become incapable of deciding for themselves. Relevance to clinical practice Sufficient information should be provided to older people and their families for the older people to determine their preferred care. Helping families to understand and support the planned care and advance directives is a strategy for maximising family compliance with the care. Continuous efforts should be made to promote advance care planning and advance directives.

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Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis

Cited by 13 publications

References 71 publications

Family caregiver inclusion is not a level playing field: toward equity for the chosen families of sexual and gender minority patients

Family caregiver inclusion is not a level playing field: toward equity for the chosen families of sexual and gender minority patients

A good death from the perspective of healthcare providers from the internal medicine department in Shanghai: A qualitative study

Decision‐making preferences on end‐of‐life care for older people: Exploration and comparison of Japan, the Hong Kong SAR and South Korea in East Asia

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