"It felt like I had an old fashioned telephone ringing in my breasts": An online survey of UK Autistic birthing parents' experiences of infant feeding.

Around 3% of people are Autistic. Autistic people communicate differently from non-Autistic people and experience the sensory world differently. There is limited evidence that Autistic people can face additional barriers to breastfeeding. We are an Autistic-led research team that developed an online survey following consultation with the Autistic community. Autistic people from the UK who had been pregnant were eligible to take part in the survey, which focused on the entire maternity journey. A total of 193 people participated, of whom 152 had experiences of infant feeding (137 breastfeeding, 82 formula feeding). Participants were highly motivated to breastfeed, and almost half of those who breastfed found it positive always or most of the time. However, breastfeeding-and in particular the milk let-down reflex-could result in pain and sensory difficulties, including 'feeling odd'. Expressing breastmilk always or most of the time was reported by 10% of breastfeeding participants. The intensity and unpredictability of both breast and formula feeding were challenging to manage. Parents reported that it was easy to understand how to prepare infant formula, but that it could also be a negative and anxiety-inducing experience. Support for breast and formula feeding was often considered inadequate. When parents did access breastfeeding support, this significantly improved a range of breastfeeding experiences. However, participants recommended more tailored support and continuity of carer. To meet the needs of Autistic birthing parents, those providing infant feeding support should receive training on Autism through a neurodiversity-affirming lens, which should be delivered by Autistic people.

How effective are psychosocial interventions at improving body image and reducing disordered eating in adult men? A systematic review.

Disordered eating and body image concerns significantly impact a growing number of men. This systematic review assessed the evidence of the effectiveness of psychosocial interventions to improve body image and eating pathology in men. Searches were conducted in December 2022 in 13 databases (PsycINFO, MEDLINE, CINAHL Plus, AMED, PubMed, Scopus, Cochrane, EMBASE, ASSIA, British Nursing Index, Wiley and OpenGrey). Studies that quantitatively evaluated psychosocial interventions and reported pre-post body image or disordered eating outcomes in men aged 18 years and over were eligible. Articles including boys, uncontrolled designs, or not in English were excluded. Findings were narratively synthesised and presented according to intervention approach. Quality was assessed using EPHPP. Eight studies including six RCTs were reviewed. Five were assessed as being moderate quality and three as weak. Evidence from moderate quality studies suggested that dissonance-based interventions showed promising improvements in body image and disordered eating for up to six months post-intervention in men with and without body dissatisfaction. Evidence for media literacy and psychoeducational interventions was limited. Findings were limited by heterogeneity in outcome measures and homogeneity of participants preventing generalisability. Robust research with longer follow-ups is needed to confirm effectiveness.

The CARe Burn Scale-Adult Form: Translation and linguistic validation into Finnish.

BACKGROUND: Burn injury can dramatically deteriorate health-related quality of life. Effective burn care may minimize the impact of the burn injury and ensure optimal functional outcome. This requires continuous improvement in burn care and assessment of treatment results. The aim of this study was to translate, culturally adapt and linguistically validate the CARe Burn Scale-Adult Form, a burn-specific patient-reported outcome measure, into Finnish. METHODS: The translation process followed the International Society for Pharmacoeconomics and Outcomes Research guidelines consisting of forward and backward translations, pilot-testing and cognitive debriefing interviews of five burn patients, and proofreading before finalizing. The process involved expert panel meetings and continuous discussion between the developers of the Scale and the research group. RESULTS: In the forward translation 10 amendments were required. After the backward translation, 12 items were reworded. Cognitive debriefing interviews led to three alterations enhancing the comprehensiveness and accuracy of the translation. The translation was reviewed by burn occupational therapists for practicality, resulting in 12 modifications. Minor grammatical changes were made after proofreading. CONCLUSION: The Finnish version is the first foreign translation of the CARe Burn Scale. It is equivalent to the original Scale and ready for psychometric validation with burn patients in Finland.

The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury.

PURPOSE: Patient-reported outcome measures (PROMs) identify patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale: Child Form, a parent-proxy-reported outcome measure that assesses quality of life in children aged 8 and under living with a burn injury. METHODS: A literature review and interviews with 12 parents of children with a burn and seven health professionals informed the development of a conceptual framework and draft PROM. Cognitive debriefing interviews with 18 parents and eight health professionals provided feedback to ascertain content validity, and 311 parents took part in field testing. Rasch and traditional psychometric analyses were conducted to create a shortened version. Further psychometric analyses with 133 parents tested the shortened CARe Burn Scale in relation to other parent-proxy measures. RESULTS: The final conceptual framework included 5 domains: Social and Emotional Difficulties, Social and Emotional Well-Being, Wound/Scar Discomfort, Wound/Scar Treatment and Physical Abilities. Two scales fulfilled Rasch and traditional psychometric analyses, providing evidence of construct validity, acceptability, and reliability. Three scales did not fulfil the Rasch criteria and were retained as checklists. Compared to other parent-proxy measures, individual CARe Burn Scales correlated moderately with similar constructs and had low correlations with dissimilar constructs, indicating evidence of criterion validity (concurrent and discriminant). CONCLUSIONS: The CARe Burn Scale: Child Form can be used to measure children's quality of life after having a burn injury which can inform rehabilitation and surgical decision-making.

The Development and Validation of the CARe Burn Scale-Adult Form: A Patient-Reported Outcome Measure (PROM) to Assess Quality of Life for Adults Living with a Burn Injury.

Patient-Reported Outcome Measures (PROMs) identify vital information about patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale-Adult Form: a PROM that assesses quality of life in adults living with a burn injury. Eleven patients, 10 family members and 4 health professional interviews, and a systematic review informed the development of a conceptual framework and a draft measure. Cognitive debriefing interviews conducted with three adult burn patients, one family member, and eight health professionals provided feedback to ascertain content validity of the measure. The measure was then field tested with 304 adult burn patients. Rasch psychometric analysis was conducted for scale reduction, and traditional psychometric analyses provided a comparison with other measures. Further psychometric testing with an additional 118 adult burn patients tested the shortened CARe Burn Scale in relation to other quality of life PROMs. The conceptual framework outlined 14 domains; 12 of which fulfilled Rasch and traditional psychometric analyses. Two individual scales did not fulfill the Rasch criteria and were retained as checklists. Individual CARe Burn Scales correlated moderately-to-highly with other quality of life scales measuring similar constructs, and had low-to-no correlations with dissimilar constructs and the majority of sociodemographic factors, indicating evidence of concurrent and divergent validity. The CARe Burn Scale-Adult Form can help identify patient needs and provides burns-specialist health professionals with a tool to assess quality of life and therapeutic progress after a burn event and related treatment.

A Systematic Review of the Effectiveness of Acceptance and Commitment Therapy (ACT) for Body Image Dissatisfaction and Weight Self-Stigma in Adults.

Body image dissatisfaction (BID) and weight self-stigma are prevalent and associated with physical and psychological ill-health. Acceptance and Commitment Therapy (ACT) is increasingly employed for both, yet little is known about its effectiveness. Searches of 12 databases identified six studies using online, face-to-face or self-help ACT interventions for BID or weight self-stigma, of varying duration and intensity. Their effectiveness and quality were evaluated. Two reported improved BID, three improved weight self-stigma, and one reported no impact on weight self-stigma. Methodological issues (small sample sizes, lack of allocation concealment, attention control and long-term follow up) impacted the validity of findings. Due to the small number of studies and poor study quality, the effectiveness of ACT for BID and weight self-stigma remains unclear. Nonetheless findings suggest psychological flexibility may facilitate reduction in BID and weight self-stigma and indicate that brief online as well as lengthy face-to-face delivery may be useful. Suggestions for further research are made.

A qualitative exploration of psychosocial specialists' experiences of providing support in UK burn care services.

INTRODUCTION: A burn can have a significant and long-lasting psychosocial impact on a patient and their family. The National Burn Care Standards (2013) recommend psychosocial support should be available in all UK burn services; however, little is known about how it is provided. The current study aimed to explore experiences of psychosocial specialists working in UK burn care, with a focus on the challenges they experience in their role. METHODS: Semi-structured telephone interviews with eight psychosocial specialists (two psychotherapists and six clinical psychologists) who worked within UK burn care explored their experiences of providing support to patients and their families. RESULTS AND DISCUSSION: Thematic analysis revealed two main themes: burn service-related experiences and challenges reflected health professionals having little time and resources to support all patients; reduced patient attendance due to them living large distances from service; psychosocial appointments being prioritised below wound-related treatments; and difficulties detecting patient needs with current outcome measures. Therapy-related experiences and challenges outlined the sociocultural and familial factors affecting engagement with support, difficulties treating patients with pre-existing mental health conditions within the burn service and individual differences in the stage at which patients are amenable to support. CONCLUSION: Findings provide an insight into the experiences of psychosocial specialists working in UK burn care and suggest a number of ways in which psychosocial provision in the NHS burn service could be developed.

A Systematic Review of Patient-Reported Outcome Measures Used in Adult Burn Research.

Patient-reported outcome measures (PROMs) are vital for evaluating patient needs and therapeutic progress. This review aimed to identify the PROMs used in adult burn care and establish their quality. Computerized bibliographic searches of Psychinfo, Social Sciences Citation Index, Cinahl, Psycharticles, AMED, Medline, and HAPI were used to find English-language articles using English-language PROMs from January 2001 to September 2016. Psychometric quality assessment of the PROMs was conducted. A total of 117 studies achieved the entry criteria and reported using 77 different PROMs (71 generic and 6 burn-specific). Overall, the psychometric quality of the PROMs was low; only 17 (13 generic and 4 burn-specific) had psychometric evidence appropriate to adults with burn injuries completing an English language version of the PROM. Although this review identified a number of generic and burn-specific PROMs that have some psychometric evidence with adult burn patients, research is still needed to further examine these preexisting measures and validate them in different languages. This will enable researchers and clinicians to better understand the potential impact of a burn injury on adults, and evaluate the effectiveness of therapeutic interventions.

The acceptability of PEGASUS: an intervention to facilitate shared decision-making with women contemplating breast reconstruction.

Good practice guidelines recommend that women who undergo mastectomy are offered reconstructive surgery. However, many who choose this option report a degree of decisional regret and dissatisfaction because their pre-surgical expectations were not met. This paper reports an acceptability study of a new intervention (PEGASUS) that aims to support shared decision-making by eliciting women's pre-surgical expectations and setting patient-centred goals. Eighteen women contemplating breast reconstruction completed the PEGASUS intervention. Semi-structured interviews were conducted with 12 women and 3 health professionals to explore their experiences of using PEGASUS. Interview transcripts were subjected to a thematic analysis, and a content analysis was conducted on 79 goals that the 18 women identified. Feedback was extremely positive--women found that completing PEGASUS alongside a discussion with a specially trained health professional helped them prepare for the surgical consultation and increased their trust in their surgeon. Staff reported that PEGASUS facilitated patient-centred discussions and informed the decisions made about potential surgery. This preliminary study suggests that this novel intervention is acceptable to patients and health professionals alike. Further work is needed to evaluate its efficacy and then its effectiveness with a larger sample of women, and its potential use with other patient groups.

Developing young person's Face IT: Online psychosocial support for adolescents struggling with conditions or injuries affecting their appearance.

A participatory action approach with potential users and clinical experts was employed to design and evaluate the acceptability of young person's Face IT (YP Face IT), an online intervention incorporating cognitive behavioural therapy and social skills training for adolescents with appearance-related anxiety as a result of a visible difference. Workshops with adolescents and clinicians informed a prototype YP Face IT which underwent a usability analysis by 28 multidisciplinary health professionals and 18 adolescents, before 10 adolescents completed it at home. Acceptability data obtained online and via interview were analysed using content analysis. Participants found YP Face IT acceptable and believed it would provide much needed and easy access to psychosocial support. They requested that it should be made widely available either as a self-management tool requiring minimal supervision from a health professional or to compliment therapist-led care.

Designing and evaluating the acceptability of Realshare: An online support community for teenagers and young adults with cancer.

A participatory action approach was used to design and evaluate the acceptability of the Realshare online community. Pre and post-intervention focus groups were conducted and participants were asked to test out Realshare during two intervention periods: when a facilitator was present and when one was not. Focus group data and forum messages were thematically analysed. The themes identified related to participants' website design requirements, how they used the community and the evaluation of Realshare after having used it. Amendments were made to Realshare throughout the project. Realshare is available to young oncology patients in the South West of England.

The romantic experiences of adolescents with a visible difference: exploring concerns, protective factors and support needs.

Injuries or conditions that affect appearance can increase adolescents' risk of psychosocial and interpersonal difficulties and may also impact on romantic relationships - an important aspect of adolescent development. A mixed method online approach explored the romantic experiences of 40 adolescents with a variety of visible differences. Young people identified appearance-related romantic concerns that cause distress, and impede the development and enjoyment of romantic relations. In contrast, some shared positive experiences and evidence of attitudes and behaviours that appear to protect against these concerns. Adolescents requested online peer support specific to their appearance-related needs. These findings can inform intervention development.