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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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: Increasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home., Methods: We conducted a thematic analysis of eleven in-depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life., Results: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life-threatening), co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal., Discussion: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health-care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others., (© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Introduction: Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. The aim of this study was to evaluate a library of videos, coproduced with parents and healthcare professionals, to support and educate families caring for a child with a gastrostomy. Methods: A mixed‐methods online survey evaluating the videos was completed by 43 family carers who care for children with gastrostomies and 33 healthcare professionals (community‐based nurses [n = 16], paediatricians [n = 6], dieticians [n = 6], hospital‐based nurses [n = 4], paediatric surgeon [n = 1]) from the United Kingdom. Participants watched a sample of videos, rated statements on the videos and reflected on how the videos could be best used in practice. Results: Both family carers and healthcare professionals perceived the video library as a valuable resource for parents and strongly supported the use of videos in practice. All healthcare professionals and 98% (n = 42) of family carers agreed they would recommend the videos to other families. Family carers found the videos empowering and easy to follow and valued the mixture of healthcare professionals and families featured in the videos. Participants gave clear recommendations for how different video topics should fit within the existing patient pathway. Discussion: Families and healthcare professionals perceived the videos to be an extremely useful resource for parents, supporting them practically and emotionally. Similar coproduced educational materials are needed to support families who perform other medical procedures at home. Patient or Public Contribution: Two parent representatives attended the research meetings from conception of the project and were involved in the design, conduct and dissemination of the surveys. The videos themselves were coproduced with several different families. [ABSTRACT FROM AUTHOR]