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Please use this identifier to cite or link to this item: https://doi.org/10.21256/zhaw-20725
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dc.contributor.authorJohnson, Halle-
dc.contributor.authorOgden, Margaret-
dc.contributor.authorBrighton, Lisa Jane-
dc.contributor.authorEtkind, Simon Noah-
dc.contributor.authorOluyase, Adejoke O-
dc.contributor.authorChukwusa, Emeka-
dc.contributor.authorYu, Peihan-
dc.contributor.authorde Wolf-Linder, Susanne-
dc.contributor.authorSmith, Pam-
dc.contributor.authorBailey, Sylvia-
dc.contributor.authorKoffman, Jonathan-
dc.contributor.authorEvans, Catherine J-
dc.date.accessioned2020-10-29T13:29:47Z-
dc.date.available2020-10-29T13:29:47Z-
dc.date.issued2020-09-11-
dc.identifier.issn0269-2163de_CH
dc.identifier.issn1477-030Xde_CH
dc.identifier.urihttps://digitalcollection.zhaw.ch/handle/11475/20725-
dc.description.abstractBackground: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement.Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK. Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the ‘right’ people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the ‘right’ people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.de_CH
dc.language.isoende_CH
dc.publisherSagede_CH
dc.relation.ispartofPalliative Medicinede_CH
dc.rightshttp://creativecommons.org/licenses/by/4.0/de_CH
dc.subjectPalliative carede_CH
dc.subjectConsumer involvementde_CH
dc.subjectEvaluation researchde_CH
dc.subjectPatient involvementde_CH
dc.subject.ddc610.73: Pflegede_CH
dc.titlePatient and public involvement in palliative care research : what works, and why? A qualitative evaluationde_CH
dc.typeBeitrag in wissenschaftlicher Zeitschriftde_CH
dcterms.typeTextde_CH
zhaw.departementGesundheitde_CH
zhaw.organisationalunitInstitut für Pflege (IPF)de_CH
dc.identifier.doi10.1177/0269216320956819de_CH
dc.identifier.doi10.21256/zhaw-20725-
dc.identifier.pmid32912087de_CH
zhaw.funding.euNode_CH
zhaw.issue1de_CH
zhaw.originated.zhawYesde_CH
zhaw.pages.end160de_CH
zhaw.pages.start151de_CH
zhaw.publication.statuspublishedVersionde_CH
zhaw.volume35de_CH
zhaw.publication.reviewPeer review (Publikation)de_CH
zhaw.author.additionalNode_CH
zhaw.display.portraitYesde_CH
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Johnson, H., Ogden, M., Brighton, L. J., Etkind, S. N., Oluyase, A. O., Chukwusa, E., Yu, P., de Wolf-Linder, S., Smith, P., Bailey, S., Koffman, J., & Evans, C. J. (2020). Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation. Palliative Medicine, 35(1), 151–160. https://doi.org/10.1177/0269216320956819
Johnson, H. et al. (2020) ‘Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation’, Palliative Medicine, 35(1), pp. 151–160. Available at: https://doi.org/10.1177/0269216320956819.
H. Johnson et al., “Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation,” Palliative Medicine, vol. 35, no. 1, pp. 151–160, Sep. 2020, doi: 10.1177/0269216320956819.
JOHNSON, Halle, Margaret OGDEN, Lisa Jane BRIGHTON, Simon Noah ETKIND, Adejoke O OLUYASE, Emeka CHUKWUSA, Peihan YU, Susanne DE WOLF-LINDER, Pam SMITH, Sylvia BAILEY, Jonathan KOFFMAN und Catherine J EVANS, 2020. Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation. Palliative Medicine. 11 September 2020. Bd. 35, Nr. 1, S. 151–160. DOI 10.1177/0269216320956819
Johnson, Halle, Margaret Ogden, Lisa Jane Brighton, Simon Noah Etkind, Adejoke O Oluyase, Emeka Chukwusa, Peihan Yu, et al. 2020. “Patient and Public Involvement in Palliative Care Research : What Works, and Why? A Qualitative Evaluation.” Palliative Medicine 35 (1): 151–60. https://doi.org/10.1177/0269216320956819.
Johnson, Halle, et al. “Patient and Public Involvement in Palliative Care Research : What Works, and Why? A Qualitative Evaluation.” Palliative Medicine, vol. 35, no. 1, Sept. 2020, pp. 151–60, https://doi.org/10.1177/0269216320956819.


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