Objective Many women choose to have breast reconstruction after mastectomy; however, decision‐making can be difficult and expectations are often unmet. The PEGASUS intervention (Patient Expectations and Goals: Assisting Shared Understanding of Surgery) was developed to support shared decision‐making by helping women and healthcare professionals to clarify and discuss their individual expectations around surgery. This study aimed to explore patients’ and health professionals’ experiences of using the intervention and its implementation. Methods Forty interviews were conducted with participants in a large scale, multi‐site trial of the effectiveness of PEGASUS, from ‘intervention’ (n=16) and ‘usual care’ groups (n=11), and healthcare professionals (n=13). Data were analysed using thematic analysis. Results ‘Usual care’ participants described feeling overwhelmed in decision‐making (‘bombarded’), often using their own research to break down information (‘process of elimination’). In contrast, intervention group participants described PEGASUS providing focus (‘focus amongst the frenetic’), and increased connection with clinicians (‘more than a number’). Healthcare professionals described increased focus on patient priorities (‘shifting focus’), but stressed the need for whole team buy‐in (‘collective commitment’). Conclusions The PEGASUS intervention offered a qualitatively different experience to individuals considering breast reconstruction, with potential to enhance patients’ and healthcare professionals’ feelings of shared decision‐making and patient‐centred care. Trial registration: ISRCTN 18000391 (https://doi.org/10.1186/ISRCTN18000391) 27/01/2016.

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The CARe Burn Scales are a portfolio of burn-specific PROMs for people affected by burns, including a Child Form (for children < 8 years (parent-proxy)), a Young Person Form (for young people aged 8–17 years), an Adult Form, and a Parent Form (for parents/carers of children aged 0–17 years). This study aimed to determine the responsiveness and minimal important difference (MID) values of the three scales developed for use in paediatric burn services and research. Participants were recruited by 15 UK Burn Services. Participants completed the appropriate CARe Burn Scale and a set of appropriate comparison validated measures, at three time points: 4 weeks (T1), 3 months (T2) and 6 months (T3) post-burn injury. Spearman’s correlation analysis and effect sizes based on Cohen’s d thresholds were reported and MID values were calculated. At baseline, 250 participants completed the Child Form, 69 completed the Young Person Form, and 320 completed the Parent Form. A total of 85–92% of participants were retained at follow up. The tested CARe Burn Scales were all responsive to change over time. MID values were created for all subscales and ranged from 2 to 11 for the Child Form, 3 to 14 for the Young Person Form and 3 to 10 for the Parent Form. The CARe Burn Scales for children, young people and parents are responsive to change over time. The scales are freely available for clinical and research use.

Objectives. Adolescent chronic pain exists within a social context, affecting the lives of adolescents, parents, peers, and wider family members. Typically, parental research has focussed on the negative impact on parents associated with parenting an adolescent with chronic pain. However, a small number of studies have identified positive parental outcomes and functioning, with a focus on parental resilience. This study sought to extend existing knowledge by providing a detailed and contextualized understanding of how parental dyads experience and demonstrate resilience in response to parenting an adolescent with Complex Regional Pain Syndrome (CRPS) and the meaning that parents ascribe to these shared experiences.Design. An Interpretative Phenomenological Analysis (IPA) was used to conduct an indepth qualitative interview study of parents of an adolescent with CRPS.Methods. Semi-structured interviews were conducted via Skype with eight motherfather parental dyads of an adolescent aged 11-25 years with CRPS.Results. A single prominent theme 'masking reality in the face of pain' dominated the parental discourse and experience of resilience. Resilience was experienced as an incongruence between private distress and the perceived obligation to display socially desirable resilience behaviours to protect their child from their own distress.Conclusions. Study findings highlight the benefits of strength-based interventions to enhance parental resilience. This is particularly important since parental behaviours have been shown to influence child pain outcomes. Future research should seek to explore resilience in different populations such as lone parents, siblings, and those parenting an adolescent with pain conditions other than CRPS.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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