Hospice volunteers as facilitators of public engagement in palliative care priority setting research

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. Design: Qualitative evidence synthesis using an integrative review approach and thematic analysis. Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

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“…5,50,57,66 Carers too found that being involved eased difficult feelings regarding their experiences. 111…”

Section: Resultsmentioning

confidence: 99%

“…5,50,57,66 Carers too found that being involved eased difficult feelings regarding their experiences. 111 Other psychological benefits included increased selfconfidence and feelings of empowerment. Involvement was seen as a positive way to keep active and combat depression and loneliness.…”

Section: Thematic Findingsmentioning

confidence: 99%

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

et al. 2019

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“…Below are few statements regarding the process of becoming a palliative volunteer in this study context. It started from May 11, 2008 This study finding was supported by a study towards nine volunteers in England which showed that how events can be used as networking and discussion between volunteers that may not usually have such opportunities to communicate with one another [38]. Hospice volunteer could be a key facilitator of public engagement in palliative care services, but approaches to their involvement require further development.…”

Section: Influencing Factors and Decision-making Stepsmentioning

confidence: 86%

“…This study finding was supported by a study towards nine palliative volunteers in England. They found that the initial workshop/training for volunteers was really important for them to improve understanding and confidence to approach public [38]. The community nurse needs to ensure recruitment materials are explicit about the expectations on volunteers, and to explore ways of gauging whether volunteers are confident in the approach being taken to public engagement prior to commencing volunteering activities.…”

Section: Volunteer Education Program / Trainingmentioning

confidence: 99%

The decision making process of being palliative volunteer

Sari¹,

Sari²

2019

IJPHS

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Palliative care delivery in Surabaya community, Indonesia, is in collaboration with palliative volunteers. The decision to be palliative volunteer was not easy, mainly because of financial matter, time limitation, and role conflict. This study aimed to analyze the decision making process of being a palliative volunteer in Surabaya. This qualitative study involved 13 female palliative volunteers under the supervision of Public Health Center (PHC) of Rangkah. In-depth-interview was used for data collection. Instruments used were interview guideline, observation sheet, and voice recorder. Collaizi method was used for data analysis. The majority was 40-50 years old, married, housewife, and high school graduated. Each participant manages 5-8 patients to be home-visited regularly. The driving force and the reason to persistently be a palliative volunteer was the willingness to help others in need. The major entry point acting as stimulus was health care professional in the Rangkah PHC. The decision making model applied was descriptive model, because despite of insufficient information through various entry points but the decision made was fast and persistent.

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“…Nevertheless, public engagement is increasing ( 13–17 ), including Death Cafes and festivals ( 18 , 19 ) and via traditional ( 20 ), and social media ( 21 ). These engagement examples can be highly participatory in nature and build significantly on the lived experience.…”

Section: Introductionmentioning

confidence: 99%

Is there a role for citizen science in death and dying research?

Wilkinson,

Llewellyn,

McCabe

2023

Front. Public Health

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The COVID-19 pandemic has brought conversations about death and dying to the fore in a way not experienced for generations. This raises questions around perceptions of death and dying; the role of healthcare and the community in care; and the use of digital media for information and support. Public engagement can provoke a two-way conversation between researchers and the public and includes techniques that can engage the community not only with the topic but also in research. This perspective article considers the potential role of citizen science in death and dying research, including considerations around its potential benefits and constraints.

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Hospice volunteers as facilitators of public engagement in palliative care priority setting research

Cited by 3 publications

References 3 publications

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

The decision making process of being palliative volunteer

Is there a role for citizen science in death and dying research?

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