Dataset Information

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis.

ABSTRACT:

Objectives

To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research.

Design

Systematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken.

Setting

Hospital and community care settings.

Participants

Older adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164).

Measurements

The QualSys criteria were used to assess study quality.

Results

Of 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading-off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences.

Conclusion

Family is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.

SUBMITTER: Etkind SN

PROVIDER: S-EPMC6001783 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis.

Etkind Simon N SN Bone Anna E AE Lovell Natasha N Higginson Irene J IJ Murtagh Fliss E M FEM

Journal of the American Geriatrics Society 20180307 5

<h4>Objectives</h4>To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research.<h4>Design</h4>Systematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qu ...[more]

PMID: 29512147

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Project description:Background and purposeThe caregiving's impact on informal carers' quality of life and gender-based stereotypes make older individuals' informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers' experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020.Design and methodsThe systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework.ResultsThis review produced two analytical themes, the impact of gender on the caregivers' labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers' experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers' healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers' negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men's and women's mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role.Conclusion and implicationsTransgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people's care.

Project description:BackgroundParity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all.AimTo synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness.DesignA mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches.Data sourcesTen electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary.ResultsOf the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness.ConclusionsImplications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.

Project description:Background Patient preferences are integral to person-centred care, but preference stability is poorly understood in older people, who may experience fluctuant illness trajectories with episodes of acute illness. We aimed to describe, and explore influences on the stability of care preferences in frail older people following recent acute illness. Methods Mixed-methods prospective cohort study with dominant qualitative component, parallel data collection and six-month follow up. Study population: age???65, Rockwood Clinical Frailty score???5, recent acute illness requiring acute assessment/hospitalisation. Participants rated the importance of six preferences (to extend life, improve quality of life, remain independent, be comfortable, support ‘those close to me’, and stay out of hospital) at baseline, 12 and 24?weeks using a 0–4 scale, and ranked the most important. A maximum-variation sub-sample additionally contributed serial in-depth qualitative interviews. We described preference stability using frequencies and proportions, and undertook thematic analysis to explore influences on preference stability. Results 90/192 (45%) of potential participants consented. 82/90 (91%) answered the baseline questionnaire; median age 84, 63% female. Seventeen undertook qualitative interviews. Most participants consistently rated five of the six preferences as important (range 68–89%). ‘Extend life’ was rated important by fewer participants (32–43%). Importance ratings were stable in 61–86% of cases. The preference ranked most important was unstable in 82% of participants. Preference stability was supported by five influences: the presence of family support; both positive or negative care experiences; preferences being concordant with underlying values; where there was slowness of recovery from illness; and when preferences linked to long term goals. Preference change was related to changes in health awareness, or life events; if preferences were specific to a particular context, or multiple concurrent preferences existed, these were also more liable to change. Conclusions Preferences were largely stable following acute illness. Stability was reinforced by care experiences and the presence of family support. Where preferences were unstable, this usually related to changing health awareness. Consideration of these influences during preference elicitation or advance care planning will support delivery of responsive care to meet preferences. Obtaining longer-term data across diverse ethnic groups is needed in future research.

Dataset Information

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis.

Objectives

Design

Setting

Participants

Measurements

Results

Conclusion

Publications

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis.

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