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Can a single question about family members' sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death.

ABSTRACT: BACKGROUND:It has been recognised that more evidence about important aspects of family members' sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members' sense of security during palliative care, and iii) to evaluate if family members' sense of security during ongoing palliative care predicts well-being during bereavement. METHODS:Between September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patient's death (70%). They answered a single question regarding the family members' sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link). RESULTS:Sixteen variables were positively related to family members' sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members' mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members' perceived quality of life. Moreover, the family members' sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patient's death, e.g. psychological well-being, complicated grief symptoms, health related quality of life. CONCLUSIONS:The findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.

SUBMITTER: Milberg A

PROVIDER: S-EPMC6657130 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Can a single question about family members' sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death.

Milberg Anna A Liljeroos Maria M Krevers Barbro B

BMC palliative care 20190725 1

<h4>Background</h4>It has been recognised that more evidence about important aspects of family members' sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members' sense of security during palliative care, and iii) to evaluate if family members' sense of security during ongoing palliative care predicts well-being during bereave ...[more]

PMID: 31345200

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Project description:BackgroundBereavement support is a core part of palliative care. However, the evidence base is limited by a lack of consistency in the outcomes used to evaluate services and models of support, which makes it difficult to compare approaches. Core Outcome Sets (COS) represent the minimum that should be measured in research into specific conditions or services. The aim of this study was to use a stakeholders' perspective to develop a COS for evaluating bereavement support for adults in adult palliative care settings.MethodsA list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey (n = 240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items (n = 23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions.Results'Ability to cope with grief' and 'Quality of life and mental wellbeing' were selected as two core outcomes. Twenty-one different dimensions to explore when assessing these outcomes were also identified. The coping related dimensions have been categorised as: Negative and overwhelming grief; Communication and connectedness; Understanding, accepting and finding meaning in grief; Finding balance between grief and life going forwards; Accessing appropriate support. Those relating to quality of life and wellbeing have been categorised as; Participation in work and/or regular activities; Relationships and social functioning; Positive mental wellbeing and Negative mental and emotional state.ConclusionThis COS outlines a more consistent way forward for bereavement researchers and practitioners, whilst also orientating towards public health and resilience-based approaches to bereavement care. Further work is planned to identify and develop measures which are specific to this core outcome set, and which will facilitate the future comparability of bereavement services and interventions.

Dataset Information

Can a single question about family members' sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death.

Publications

Can a single question about family members' sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death.

Similar Datasets

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