Patient and Public Involvement Work With Parents of Children With Life‐Limiting Conditions and Bereaved Parents: A Rapid Systematic Review

Background

Guidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents.

Aim

Review the evidence on involving parents of children with life-limiting conditions and bereaved parents in research, service planning and advocacy, and use this to develop best practice guidance.

Methods

Rapid review following the Cochrane Rapid Reviews Methods Group Guidance. MEDLINE and EMBASE were searched for primary studies of any design and literature/systematic reviews, and grey literature searching was conducted. Sources reporting on involving parents of children with life-limiting conditions or bereaved parents in healthcare, research, or charity work in any setting, were included. Data were charted using the UK standards for public involvement in research (PPI). Two PPI consultation workshops were conducted with parents (n = 13) and healthcare professionals/charity representatives (n = 7).

Results

Six sources were included. Four reported benefits of parental involvement and two reported burdens. In relation to best practice, two reported on the importance of inclusive opportunities, three on working together, four on support and learning, three on communications, one on impact, and one on governance. PPI consultation workshops highlighted new factors which were not present in the literature around communication and understanding the impact of involvement.

Conclusion

Organisations working with this group should consider offering inclusive approaches to improve diversity, levelling power imbalances, ensuring flexibility of approach, and appropriate communication and impact.

Patient or Public Contribution

The study was conducted in collaboration with 13 parents of children with life-limiting conditions and bereaved parents, and seven palliative care professionals. The group were involved at key stages of the review and contributed to the development of the findings and conduct of the review.