Participant and caregiver perspectives on health feedback from a healthy lifestyle check.

INTRODUCTION: The usual output following health consultations from paediatric services is a clinical letter to the referring professional or primary care provider, with a copy sent to the patient's caregiver. There is little research on how patients and caregivers perceive the letter content. We aimed to: first understand child, young people and caregiver experiences of and preferences for receiving a health feedback letter about the child/young person's health measures within a healthy lifestyle programme; and second to provide a set of recommendations for designing letters to children, young people and their families within a healthy lifestyle programme. METHODS: This qualitative study, informed by Kaupapa Maori principles, included focus groups of children aged 5-11 years and young people aged 12-18 years who were participants in a healthy lifestyle programme in Taranaki, Aotearoa New Zealand and of their respective caregivers (total n = 47). Discussions were audio-recorded, transcribed and analysed using thematic analysis. FINDINGS: Key themes were identified: letters sometimes acted as 'discourses of disempowerment'-some participants experienced a lack of safety, depersonalisation with medical jargon and 'feeling like a number'. Participants described the need for acknowledgement and affirmation in written communication-health feedback should include validation, choice regarding content, respectful tone and a strengths-based approach to health messages. INTERPRETATION: Letters to referrers, copied to families, can be perceived as disempowering, and participant and caregiver perspectives of content should be considered. This study challenges conventional practice in communicating health feedback with broader implications for written communication in healthcare. We propose separate letters aimed at the child/young person and their caregiver that offer choice in the information they receive. The administrative burden of multiple letters can be mitigated by advances in digital health. PATIENT CONTRIBUTION: This study originated in response to feedback from service users that current health feedback was not meeting their needs or expectations. Patient perspectives, especially from children, are rarely considered in the generation of clinic letters from health professionals. Participants were child participants in the community-based clinical service and their caregivers, and care was taken to represent the demographic backgrounds of service users. Collection and interpretation of Maori data were led by researchers who were local community members to ensure prioritisation and preservation of participant voice. Where possible, results are illustrated in the text by direct quotes from participants, whose identities are protected with a pseudonym.

Participants' and caregivers' experiences of a multidisciplinary programme for healthy lifestyle change in Aotearoa/New Zealand: a qualitative, focus group study.

OBJECTIVE: Child and adolescent obesity continues to be a major health issue internationally. This study aims to understand the views and experiences of caregivers and participants in a child and adolescent multidisciplinary programme for healthy lifestyle change. DESIGN: Qualitative focus group study. SETTING: Community-based healthy lifestyle intervention programme in a mixed urban-rural region of Aotearoa/New Zealand. PARTICIPANTS: Parents/caregivers (n=6) and children/adolescents (n=8) who participated in at least 6 months of an assessment and weekly session, family-based community intervention programme for children and adolescents affected by obesity. RESULTS: Findings covered participant experiences, healthy lifestyle changes due to participating in the programme, the delivery team, barriers to engagement and improvements. Across these domains, four key themes emerged from the focus groups for participants and their caregivers relating to their experience: knowledge-sharing, enabling a family to become self-determining in their process to achieve healthy lifestyle change; the importance of connectedness and a family-based programme; the sense of a collective journey and the importance of a nonjudgemental, respectful welcoming environment. Logistical challenges and recommendations for improvement were also identified. CONCLUSIONS: Policymakers need to consider the experiences of participants alongside quantitative outcomes when informing multidisciplinary intervention programmes for children and adolescents affected by obesity.Trial registration number Australian New Zealand Clinical Trials Registry (ANZCTR):12611000862943; Post-results.