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Bereaved parents' experiences of research participation.
BMC Palliat Care. 2018 Nov 07; 17(1):122.BP

Abstract

BACKGROUND

As understandings of the impacts of end-of-life experiences on parents' grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents' experiences of the research process are limited within the current literature.

METHODS

We aimed to explore bereaved parents' experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents' responses were analysed using descriptive content analysis.

RESULTS

Our findings demonstrate that despite being emotionally difficult, parents' overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12-24 months after their child's death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial.

CONCLUSIONS

Findings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research.

Authors+Show Affiliations

The Louis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK. Ashleigh.butler@ucl.ac.uk. School of Nursing and Midwifery, Monash University, Melbourne, Australia. Ashleigh.butler@ucl.ac.uk.School of Nursing and Midwifery, Monash University, Melbourne, Australia.School of Nursing and Midwifery, La Trobe University, Melbourne, Australia.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

30404631

Citation

Butler, Ashleigh E., et al. "Bereaved Parents' Experiences of Research Participation." BMC Palliative Care, vol. 17, no. 1, 2018, p. 122.
Butler AE, Hall H, Copnell B. Bereaved parents' experiences of research participation. BMC Palliat Care. 2018;17(1):122.
Butler, A. E., Hall, H., & Copnell, B. (2018). Bereaved parents' experiences of research participation. BMC Palliative Care, 17(1), 122. https://doi.org/10.1186/s12904-018-0375-4
Butler AE, Hall H, Copnell B. Bereaved Parents' Experiences of Research Participation. BMC Palliat Care. 2018 Nov 7;17(1):122. PubMed PMID: 30404631.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Bereaved parents' experiences of research participation. AU - Butler,Ashleigh E, AU - Hall,Helen, AU - Copnell,Beverley, Y1 - 2018/11/07/ PY - 2018/07/05/received PY - 2018/10/26/accepted PY - 2018/11/9/entrez PY - 2018/11/9/pubmed PY - 2019/4/24/medline KW - Bereavement KW - Child KW - Death KW - Experience KW - Parent KW - Research SP - 122 EP - 122 JF - BMC palliative care JO - BMC Palliat Care VL - 17 IS - 1 N2 - BACKGROUND: As understandings of the impacts of end-of-life experiences on parents' grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents' experiences of the research process are limited within the current literature. METHODS: We aimed to explore bereaved parents' experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents' responses were analysed using descriptive content analysis. RESULTS: Our findings demonstrate that despite being emotionally difficult, parents' overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12-24 months after their child's death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial. CONCLUSIONS: Findings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research. SN - 1472-684X UR - https://www.unboundmedicine.com/medline/citation/30404631/Bereaved_parents'_experiences_of_research_participation_ L2 - https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-018-0375-4 DB - PRIME DP - Unbound Medicine ER -