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Appears in Collections:Faculty of Health Sciences and Sport eTheses
Title: The experience of emotional distress and help-seeking for distress in families living with advanced cancer and receiving palliative care: a multi-perspective case study approach
Author(s): Carolan, Clare
Supervisor(s): Smith, Annetta
Forbat, Liz
Keywords: Cancer
Palliative care
Issue Date: 31-Jul-2018
Publisher: University of Stirling
Citation: Carolan, C.M., Smith, A. and Forbat, L. (2015) Conceptualising psychological distress in families in palliative care: findings from a systematic review. Palliative Medicine, 29(7), pp. 605-632.
Carolan, C.M., Smith, A., Davies, G.R. and Forbat, L. (2018) Seeking, Accepting and Declining Help for Emotional Distress in Cancer: Findings from a Systematic Review and Thematic Synthesis of Qualitative Evidence. European Journal of Cancer Care, 27(2): e12720.
Carolan, C.M., Forbat, L. and Smith, A. (2016) Developing the DESCARTE Model: The Design of Case Study Research in Healthcare. Qualitative Health Research, 26(5), pp. 626-639.
Carolan C.M. (2017) Researching Emotional Distress and Help-Seeking for Distress in Families in Palliative Care Using Multi-Perspective Interviewing. In SAGE Research Methods Cases, SAGE Publications Ltd.
Abstract: The emotional impact of serious illness in families is recognised. To enhance well-being in families living we must understand how distress is experienced within families; from this, evidenced-based systemic distress interventions can be derived. However, the success of systemic intervention programmes is reliant on whether families will seek help (or not) for distress. This PhD by publication explores emotional distress and help-seeking in families living with advanced cancer. Papers one and two used systematic review techniques. Paper one evidenced distress as a systemic construct and proposes the tiered model of distress to convey current understandings. Paper two offers the attaining normality model to convey why some people seek help for distress to achieve a new normality whereas some choose not to seek help to maintain normality. Together, these papers evidence gaps in systemic understandings of distress and help-seeking; from this an exploratory cross-sectional multiple case study of families was proposed. Papers three and four provided methodological underpinning to this research through the development of the DESCARTE model: The Design of Case Study Research in Healthcare (paper three) used in the case study design; paper four reflects on multi-perspective interviewing methods used. Distress and help-seeking are conceived as systemic relational phenomena, occurring within the family system and arising from relational interaction with healthcare. Distress is conveyed through four themes: interdependent distress, living in uncertainty, unnecessary distress and oscillatory distress; from this, possible systemic intervention designs are offered (paper five). Non-help-seeking for distress was the predominant response in families. The mutuality model of help-seeking is proposed to synthesise current understandings (paper six). Families describe how healthcare interactions cause unnecessary distress and shapes families’ help-seeking behaviours. Findings indicate significant gaps between the rhetoric of palliative care policy and families’ experience. To improve families’ wellbeing, relational care must be embedded in policy and practice.
Type: Thesis or Dissertation

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FINAL_22_10_18 CAROLAN word.pdfClare Carolan PhD Thesis 201842.37 MBAdobe PDFUnder Permanent Embargo    Request a copy
FINAL_22_10_18 CAROLAN NarrativeOnly.pdfThesis with narrative only - published papers redacted6.55 MBAdobe PDFView/Open
Paper1PalliativeMedicine2015.pdfPaper 1 from Palliative Medicine14.32 MBAdobe PDFUnder Permanent Embargo    Request a copy
Paper2EuropeanJournalOfCancerCare2018.pdfPaper 2 from European Journal Of Cancer Care12.38 MBAdobe PDFUnder Permanent Embargo    Request a copy
Paper3QualitativeHealthResearch2016.pdfPaper 3 from Qualitative Health Research21.56 MBAdobe PDFUnder Permanent Embargo    Request a copy
Paper4SAGEResearchMethodsCases2017.pdfPaper 4 from SAGE Research Methods Cases476.43 kBAdobe PDFUnder Permanent Embargo    Request a copy
Paper5Psycho-OncologySubmitted.pdfPaper 5 submitted833.19 kBAdobe PDFUnder Permanent Embargo    Request a copy
Paper6BMCPalliativeCareSubmitted.pdfPaper 6 submitted1.17 MBAdobe PDFUnder Permanent Embargo    Request a copy

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