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Aim: To assess the risks, benefits, and resource implications of home‐blended food for children with gastrostomy tubes compared with a formula diet. Method: This prospective cohort study of children (aged 0–18 years) collected baseline data on gastrointestinal symptoms, nutritional intake, anthropometric outcomes, parent and child quality of life, and resource use. A propensity score‐weighted generalized linear mixed model was used to compare children receiving a home‐blended versus formula diet. Results: Baseline data were obtained for 180 children (2019–2021; 107 males, 73 females; mean age 9 years 7 months [SD 4 years 5 months]). Children receiving a home‐blended diet (n = 104) had similar diagnoses and age but more lived in areas of lower deprivation and parental education was higher compared to the parents of children receiving a formula diet (n = 76). Children receiving home‐blended diets had significantly better gastrointestinal scores than those receiving formula diets (B = 13.8, p < 0.001). The number of gut infections and tube blockages were similar between the two groups but with fewer stoma site infections in the group receiving home‐blended food. Children receiving a home‐blended diet had more fibre in their diet compared to children receiving a formula diet. Interpretation: Home‐blended diets should be seen as a safe option for children who are gastrostomy‐fed unless clinically contraindicated. Equality of access to home‐blended diets for children with gastrostomy should be assessed by local clinical teams. What this paper adds: Children with gastrostomy receiving a home‐blended diet had fewer gastrointestinal symptoms compared to children receiving a formula diet.Children with gastrostomy receiving a home‐blended diet had no more complications than children receiving a formula diet. What this paper adds: Children with gastrostomy receiving a home‐blended diet had fewer gastrointestinal symptoms compared to children receiving a formula diet.Children with gastrostomy receiving a home‐blended diet had no more complications than children receiving a formula diet. [ABSTRACT FROM AUTHOR]

Background: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. Aim: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. Design: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). Data sources: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). Results: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. Conclusion: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes. [ABSTRACT FROM AUTHOR]

Background: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. Aim: To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child. Design: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. Results: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. Conclusions: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life. [ABSTRACT FROM AUTHOR]

Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important.To evaluate a paediatric palliative care research centre’s PPI activity to determine what went well, or less well; and how future activities can be improved.Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically.Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre.The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre’s approach to PPI and the opportunities to improve.To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a ‘route map’ for establishing an impactful PPI group for paediatric palliative care research. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods: Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results: Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process. [ABSTRACT FROM AUTHOR]