What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers

Gott, Merryn; Wiles, Janine; Black, Stella; Williams, Lisa; Kerse, Ngaire; Trussardi, Gabriella

doi:10.1177/0269216317735248

Cited by 35 publications

(62 citation statements)

References 19 publications

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“…For example, we found evidence that where cohesive support networks surround a person with dementia,52 53 people are able to live with a sense of purpose52 54 while members of the network are able to advocate for their perceived wishes through the exchange of knowledge with other community members 55–61. Cohesive support networks developed knowledge or ‘expertise’ relating to the person with dementia 48 62.…”

Section: Resultsmentioning

confidence: 96%

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Social networks, social capital and end-of-life care for people with dementia: a realist review

et al. 2019

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Objectives(1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.DesignA realist review.Data sourcesMEDLINE, EMBASE, CINAHL and grey literature.AnalysisWe conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.ResultsWe identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.ConclusionThis review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.PROSPERO registration numberCRD42018084524.

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Section: Resultsmentioning

confidence: 96%

“…This was accumulated through the provision of care and equated to ‘longitudinal monitoring’ 63–65. Knowledge was then conveyed through narrative66 67 to help develop a person’s role as an active citizen 5 44 52–54 67…”

Section: Resultsmentioning

confidence: 99%

Social networks, social capital and end-of-life care for people with dementia: a realist review

et al. 2019

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“…Thus we must be able to identify at‐risk lonely patients near EOL as well as throughout the life continuum. Value‐based repayment models to incentivize screening for loneliness in routine medical care have been proposed, and such tools can be particularly important as individuals near EOL when social networks become scarcer and community engagement wanes . Ultimately, after an initial loneliness screen, an important starting point is a candid conversation between patients and their providers to explore whether and how loneliness impacts their experiences, hopes, fears, and future care preferences, particularly near EOL.…”

Section: Discussionmentioning

confidence: 99%

“…Poor health outcomes related to loneliness are frequently linked with poor quality of life in older adults and may also be associated with suffering at end of life (EOL). Role transitions, shrinking social networks, and mounting multimorbidity are common at EOL and can increase both the risk of loneliness and its downstream health consequences …”

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confidence: 99%

The Relationship of Loneliness to End‐of‐Life Experience in Older Americans: A Cohort Study

Abedini

Choi

Wei

et al. 2020

J American Geriatrics Society

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OBJECTIVES:Little is known about the relationship between loneliness and end-of-life (EOL) experience including symptom burden, intensity of care, and advance care planning among older adults. DESIGN: Secondary analysis of the Health and Retirement Study (HRS). SETTING: Population based. PARTICIPANTS: Decedents older than 50 years who died between 2004 and 2014 (n = 8700). Exclusions included those who were ineligible for surveys assessing loneliness (n = 2932) or had missing or incomplete loneliness or symptom data (n = 2872). MEASUREMENTS: Individuals were characterized as lonely based on responses to the three-item Revised University of California, Los Angeles Loneliness Scale in the most recent HRS survey before death. Outcomes were proxy reports of total EOL symptom burden, intensity of EOL care (eg, late hospice enrollment, place of death, hospitalizations, use of life support), and advance care planning. Results were expressed as adjusted odds ratios (aORs) with 95% confidence intervals (CIs). RESULTS: One-third of 2896 decedents (n = 942) were lonely. After adjusting for demographics, socioeconomic status, multimorbidity, depressive symptoms, family and friends, and social support, loneliness was independently associated with increased total symptom burden at EOL (ß = .13; P = .004). Compared with nonlonely individuals, lonely decedents were more likely to use life support in the last 2 years of life (35.5% vs 29.4%; aOR = 1.36; 95% CI = 1.08-1.71) and more likely to die in a nursing home (18.4% vs 14.2%; aOR = 1.78; 95% CI = 1. 30-2.42). No significant differences in other measures of intense care (late hospice enrollment, number of hospitalizations, or dialysis use) or likelihood of advance care planning were observed. CONCLUSION: Lonely older people may be burdened by more symptoms and may be exposed to more intense EOL care compared with nonlonely people. Interventions aiming to screen for, prevent, and mitigate loneliness during the vulnerable EOL period are necessary.

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“…Além disso, na assistência humanizada, a família deve ser parte integrante do cuidado. Estudo mostra que as relações de afeto positivas com familiares são fundamentais para a qualidade de vida do idoso e evitam o isolamento, que pode causar angústia e solidão 22 .…”

Section: àS Vezes Quando Eles São Muito Teimosos Fica Complicado (unclassified

Cuidado ao paciente idoso hospitalizado: implicações para a equipe de enfermagem [Care for hospitalized elderly patients: implications for nursing team] [El cuidado de los ancianos hospitalizados: implicaciones para el personal de enfermería]

2017

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Objetivos: apreender a percepção dos profissionais de enfermagem acerca do significado de ser idoso e identificar facilidades e dificuldades enfrentadas na assistência prestada ao idoso hospitalizado. Método: pesquisa qualitativa, com 34 profissionais de enfermagem, atuantes em enfermaria de clínica médica, de hospital público do interior paulista. Os dados foram coletados através de entrevista semiestruturada, e submetidos à técnica de análise de conteúdo. Resultados: a percepção de idoso foi atrelada à idade, aparência física, grau de dependência, carência e insegurança. As facilidades relacionaram-se à aceitação da doença, ao tratamento, à passividade e confiança na equipe. Dependência, hábitos, relacionamento com os acompanhantes, convivência com o abandono e tempo insuficiente para o cuidado foram considerados fatores limitantes para o cuidado. Conclusão: os participantes do estudo têm percepção estereotipada do idoso; dificuldades e facilidades no cuidado estão atreladas ao processo de envelhecimento, adoecimento e institucionalização.ABSTRACTObjectives: to apprehend the perception of nursing professionals about the meaning of being elderly and to identify the facilities and difficulties faced in caring for hospitalized elderly patients. Method: qualitative research, with 34 nursing professionals, working in a medical clinic ward, at a public hospital in São Paulo State, Brazil. Data were collected through a semi-structured interview, and submitted to the content analysis. Results: the perception of the elderly was related to age, physical appearance, degree of dependence, lack of affection and insecurity. Facilities were related to disease acceptance, treatment, passivity and trustiness in the team. Dependence, habits, relationship with the companions, coexistence with the abandonment and insufficient time for the care were considered limiting factors for the care. Conclusion: the study participants have stereotyped perception of the elderly; difficulties and facilities in care are associated to the aging process, illness and institutionalization. RESUMENObjetivos: aprehender la percepción de los profesionales de enfermería sobre el significado de ser anciano y identificar las facilidades y las dificultades que se enfrentan en el cuidado a los pacientes ancianos hospitalizados. Método: investigación cualitativa, con 34 profesionales de enfermería, trabajando en servicio de clínica médica, en un hospital público en São Paulo, Brasil. Los datos se recolectaron a través de entrevistas semiestructuradas y se sometieron al análisis de contenido. Resultados: la percepción de los profesionales sobre ancianos se relacionó con la edad, la apariencia física, el grado de dependencia, la falta de afecto y la inseguridad. Las facilidades se relacionaron con la aceptación de la enfermedad, el tratamiento, la pasividad y la confianza en el equipo. La dependencia, los hábitos, la relación con los compañeros, la convivencia con el abandono y el tiempo insuficiente para la atención fueron considerados factores limitantes para el cuidado. Conclusión: los participantes del estudio tienen percepción estereotipada de los ancianos; las dificultades y las facilidades en el cuidado están asociadas al proceso de envejecimiento, a la enfermedad y a la institucionalización. DOI: http://dx.doi.org/10.12957/reuerj.2017.16107

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What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers

Cited by 35 publications

References 19 publications

Social networks, social capital and end-of-life care for people with dementia: a realist review

Social networks, social capital and end-of-life care for people with dementia: a realist review

The Relationship of Loneliness to End‐of‐Life Experience in Older Americans: A Cohort Study

Cuidado ao paciente idoso hospitalizado: implicações para a equipe de enfermagem [Care for hospitalized elderly patients: implications for nursing team] [El cuidado de los ancianos hospitalizados: implicaciones para el personal de enfermería]

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