The bereavement experiences and support needs of family carers: a supplementary qualitative analysis of free text data from the peolcpsp research priority setting exercise

IntroductionPalliative and end-of-life care is under-researched (Higginson 2016) with stakeholders likely to have a range of unmet communication information and support needs. The James Lind Alliance (JLA) Priority Setting Partnership (PeolcPSP) identified the pertinent ‘treatment uncertainties’ for palliative and end-of-life care focusing on interventional based research (JLA PeolcPSP Survey 2015). Respondents also submitted comments that were out of scope of the JLA methodology.AimTo undertake a supplementary analysis of JLA PeolcPSP survey free text data focusing on communication information and support needs.MethodsA supplementary thematic qualitative analysis of the JLA PeolcPSP free-text data was undertaken in the final dataset of 1403 responses. The original coding framework was reviewed and refined until agreement was reached (Nelson 2016).ResultsApproximately one third of respondents (n=444; 31.65%) were included in this analysis; four overarching themes were identified:Availability accessibility and improving information: focusing on support and guidance as well as improving and finding information.Effectiveness of communication between stakeholders: openness and transparency between stakeholders; improving the communication of diagnosis and prognosis; exploring decision–making responsibilities.Eliciting preferences and values: treatment decisions Advance Care Planning and preferred place of care.Spiritual and psychosocial needs: providing emotional and psychological support for patients carers and professionals.ConclusionsWe identified a wide range of communication and decision-making concerns as well as psychosocial support adding further insight to the survey results. Both quantitative and qualitative approaches are recommended if we are to meet all stakeholders’ needs in palliative and end-of-life care.References. Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care2016;6:2–4.. Nelson A. Between the lines/beyond the questions; Shared experiences of palliative and end of life care. Summary ReportJuly 2016. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beyond-the-questions-esrc-report.pdf. Palliative and end of life care Priority Setting Partnership (PeolcPSP). (2015). Final Report15 January 2015. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf (Accessed: 30 May 2018)

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“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

BMC Palliative Care ◽

10.1186/s12904-016-0165-9 ◽

2016 ◽

Vol 15 (1) ◽

Cited By ~ 23

Author(s):

Emily Harrop ◽

Fiona Morgan ◽

Anthony Byrne ◽

Annmarie Nelson

Keyword(s):

Qualitative Analysis ◽

Family Caregivers ◽

Survey Data ◽

Support Needs ◽

Free Text ◽

The Right

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National Institute of Academic Anaesthesia research priority setting exercise

British Journal of Anaesthesia ◽

10.1093/bja/aer418 ◽

2012 ◽

Vol 108 (1) ◽

pp. 42-52 ◽

Cited By ~ 16

Author(s):

S.J. Howell ◽

J.J. Pandit ◽

D.J. Rowbotham

Keyword(s):

Priority Setting ◽

Research Priority ◽

Priority Setting Exercise

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Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2021-003438 ◽

2021 ◽

pp. bmjspcare-2021-003438

Author(s):

Miriam J Johnson ◽

Chao Huang ◽

Hong Chen ◽

Lesley Jones ◽

Maureen Twiddy

Keyword(s):

Prostate Cancer ◽

Palliative Care ◽

Health Status ◽

Needs Assessment ◽

Unmet Needs ◽

Advanced Disease ◽

Free Text ◽

Family Carers ◽

Care Needs ◽

Text Data

ObjectivesMen living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.MethodsMixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.Results216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men’s health status was worse with active vs remitted disease (mean difference −11; 95% CI −17 to −5; p<0.001). 85 (88%) carers reported at least one unmet need relating to ‘enabling them to care’ and 83 (86%) relating to ‘their own well-being’. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.ConclusionsMany living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.

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Supporting ageing well research: Findings from a research priority setting exercise

Australasian Journal on Ageing ◽

10.1111/ajag.12615 ◽

2019 ◽

Vol 38 (2) ◽

pp. 136-143 ◽

Cited By ~ 1

Author(s):

Fiona Doolan‐Noble ◽

Poonam Mehta ◽

Debra Waters ◽

George David Baxter

Keyword(s):

Priority Setting ◽

Research Priority ◽

Research Findings ◽

Priority Setting Exercise

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Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic

10.1101/2021.06.11.21258575 ◽

2021 ◽

Author(s):

Emily J Harrop ◽

Silvia Goss ◽

Damian JJ Farnell ◽

Mirella Longo ◽

Anthony Byrne ◽

...

Keyword(s):

Emotional Support ◽

Support Needs ◽

Free Text ◽

Bereavement Support ◽

Text Data ◽

Face To Face ◽

The Uk ◽

High Level ◽

Levels Of Support ◽

Access Services

Background: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. Aim: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. Design: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. Setting/Participants: 711 adults bereaved in the UK between March-December 2020, recruited via media, social media, national associations and community/charitable organisations. Results: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n=422) or their GP (60%, n=428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n=149)/GP support (52%, n=135). 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help, and not knowing how to access services. 39% (n=279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact, and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. Conclusions: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options, and social/educational initiatives to bolster informal support and ameliorate isolation.

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