ArticleHealth expectations : an international journal of public participation in health care and health policy2015
The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 2 of them syntheses that pooled it.
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Who cites it
9 citing papers in PubMed, 2 syntheses or guidelines pooled it, 20 citations in OpenAlex.
- Consumers' and health providers' views and perceptions of partnering to improve health services design, delivery and evaluation: a co-produced qualitative evidence synthesis.The Cochrane database of systematic reviews · 2023Pooled it
- Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.Health research policy and systems · 2023Pooled it
- Developing and testing guidance to support researchers engaging patient partners in health-related research.Research involvement and engagement · 2022Article
- Development and implementation of a transmural palliative care consultation service: a multiple case study in the Netherlands.BMC palliative care · 2021Article
- Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.Palliative medicine · 2021Article
- Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review.Palliative medicine · 2019Review
- Article
- Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research.Health expectations : an international journal of public participation in health care and health policy · 2018Article
- Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.BMC health services research · 2017Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
objectivePublic involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. SETTING AND SAMPLE: The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals.
methodThis study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. FINDINGS AND
conclusionThe perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.