Knowledge Gaps About End-of-Life Decision Making Among Mexican American Older Adults and Their Family Caregivers: An Integrative Review

Crist, Janice D.; Ortiz-Dowling, Evangeline M.; Shea, Kimberly; Phillips, Linda R.

doi:10.1177/1043659618812949

Cited by 12 publications

(14 citation statements)

References 41 publications

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“…A series of care problems and impact on family caused by bedridden and disabled family members is usually more than what the caregiver expects. Studies have shown that nearly one-third of the proxies developed negative emotions such as guild, stress, anxiety, and self-doubt after deciding the treatment for their family members, which persists for several months or even several years [31,32]. Three caregivers participated in the study mentioned that there is no dignity and meaning in living in pain like their patients.…”

Section: Discussionmentioning

confidence: 99%

Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients

Chiang

Hsieh

Fan

et al. 2020

IJERPH

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The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, and expectation about disease progress; (2) Impact of care on family members: positive affirmation, open-minded life, social isolation and health effects, and financial and life planning effects; (3) Attitude toward life: not forcing to stay, and not becoming a burden, (4) Expected proxy dilemmas: torment between doing or not, seeing the extension of suffering and toil, and remorse and self-blame; (5) Expectation of end of life (EOL) care: caregiver’s experience and EOL care decisions, and practicality of EOL decision making. After making multiple medical decisions for their disabled relatives, caregivers are able to calmly face their own medical decisions, and “not becoming a burden” is their primary consideration. It’s suggested that implementation of shared decision-making on medical care for patients with chronic disability will not only improve the quality of their medical care but also reduce the development of remorse and guilty feelings of caregivers after making medical decisions.

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Section: Discussionmentioning

confidence: 99%

Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients

Chiang

Hsieh

Fan

et al. 2020

IJERPH

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“…Our findings indicate that participants anticipated the greatest need for more support in three items closely related to the end-of-life context: understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Taking care of family members in the end-of-life stage is often full of anxiety, as the family carers may have limited understanding of the life-threatening disease and the related end-of-life decisions (Crist et al, 2019), and they may not be ready to adapt to different changes in the end-of-life caregiving trajectory (Penrod et al, 2011). Therefore, family carers may have the urge to know more about the illness and what to expect in the end-of-life care journey.…”

Section: Discussionmentioning

confidence: 99%

Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support

Chan

2020

Pall Supp Care

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Objective This study aimed to examine family carers’ willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress. Method Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers’ Support Need Assessment Tool. Results Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in “dealing with your feelings and worries” and “looking after your own health.” Significance of Results Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals’ additional support.

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“…Our society, through informal local and legal national policy, tends to support treating older adults and caregivers separately and not as part of a system . The caregiving family needs to be perceived and treated as a complex system, evolving, and vulnerable to breakdown.…”

Section: Discussionmentioning

confidence: 99%

“…Our society, through informal local and legal national policy, tends to support treating older adults and caregivers separately and not as part of a system. 104 The caregiving family needs to be perceived and treated as a complex system, evolving, and vulnerable to breakdown. Foundation has also proposed a futuristic enhancement of the Patient-Centered Medical Home that is tailored to older adults and their families.…”

Section: Implications For Practice and Policymentioning

confidence: 99%

“Tipping point” concept analysis in the family caregiving context

et al. 2019

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Aim Analyze the concept “tipping point” in the older adult family caregiving context to further knowledge about caregiving families, enhancing transdisciplinary theory, research, and practice. Background While used commonly in some disciplines, how “tipping point” has been used in health care, generally, and in relation to caregiving families, specifically, is less clear. This project was conducted to offer conceptual clarity to tipping point. Design Walker and Avant's framework. Data Source Searches of scholarly literature in PsycINFO, CINAHL, and PubMed using the search term “tipping point” in either title or abstract. Review Methods Definitions used were extracted; instances when the concept was implied but the actual term “tipping point” was not used and contexts where the term was used or implied were identified. Results The composite definition of a caregiving tipping point is a seemingly abrupt, severe, and absolute change event involving either the older adult or caregiver(s), or both that indicates a breakdown in the status quo of the caregiving system. Conclusions Transdisciplinary research, care, and policy should treat caregiving families as complex systems, use longitudinal assessments, and include colloquial communication. Early detection of impending tipping points will provide family‐centered decisional support and enhance families’ quality of life and safety.

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Knowledge Gaps About End-of-Life Decision Making Among Mexican American Older Adults and Their Family Caregivers: An Integrative Review

Cited by 12 publications

References 41 publications

Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients

Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients

Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support

“Tipping point” concept analysis in the family caregiving context

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