Cross-condition risk and protective factors for psychosocial distress in parents and carers of children and young people with appearance-affecting conditions and injuries.

Alongside typical parenting challenges, initial condition-specific research suggests thadifferent experiences and support needs.t parents of children with different visible differences may experience similar psychosocial difficulties. Despite this, large-scale cross-condition research to identify risk and protective factors for parental distress and psychosocial adjustment has been lacking. Two hundred and nine parents and carers of children with a range of visible differences completed an online survey comprised of standardised outcome measures, study-specific measures, and open-ended questions. Multiple regression modelling identified possible risk and protective factors, and data collected via open-ended questions were analysed using content analysis. Findings support themes previously identified in small-scale cross-condition qualitative research with parents of children with visible differences. Risk factors for parental negative affect and stress included parental reports of the noticeability of their child's visible difference and teasing. Protective factors included good parent-child communication, self-compassion, knowledge of their child's condition and satisfaction with treatment. The risk and protective factors identified provide important insight into the experiences of this parent population and indicate possible avenues for psychosocial intervention.

'Plan Z and then off the edge of a cliff': An interpretative phenomenological analysis of mothers' experience of living with a slow-to-heal Caesarean wound.

BACKGROUND: Studies indicate that complex postsurgical wound healing can significantly alter biopsychological markers responsible for recovery. Yet, there is a lack of research investigating women's experience of living with slow-to-heal Caesarean birth wounds. This is an important area of investigation considering the increase of factors associated with surgical births and poor wound healing in the UK and globally. AIM: The aim of this study was to explore women's experiences of living with a slow-to-heal Caesarean wound. METHOD: Semi-structured interviews were conducted with seven women who had lived experience of slow-to-heal Caesarean wounds. Narratives were analysed using Interpretative Phenomenological Analysis (IPA) approach. RESULTS: Analysis of women's narratives revealed three interlinking superordinate themes of 1) 'Tied to that event': healing physical and emotional wounds, 2) The 'good mother' and the 'good patient': negotiating being a carer and being cared for, and 3) 'Adjusting to a new normality'. Overall, slow-to-heal wounds embodied women's perceptions of agency over their Caesarean birth experience and achievement of a new motherhood identity. Wherein, successful healing would encompass a sense of normality defined by subjective notions of regaining expected roles and daily activities, previous bodily functions, and maternal status within their families that became disrupted due to delayed wound healing. CONCLUSION: Women's narratives support discourse surrounding Caesarean birth and recovery as a biopsychosocial phenomenon. This has important ramifications regarding research and treatment programmes for postnatal women with complex healing that are largely described as 'invisible'.

More than my appearance: a pilot evaluation of the expand your Horizon Online functionality-based writing programme for adults with visible differences.

Background: Adults with conditions that affect their appearance, known as visible differences, can experience appearance concerns, social anxiety, and depression. Interventions have been developed for this population to facilitate adjustment and coping skills; however, they have limited evidence of efficacy. The Expand Your Horizon [Alleva, J. M., Martijn, C., Van Breukelen, G. J., Jansen, A., & Karos, K. (2015). Expand Your Horizon: A programme that improves body image and reduces self-objectification by training women to focus on body functionality. Body Image, 15, 81-89. https://doi.org/10.1016/j.bodyim.2015.07.001] online functionality-based writing programme was adapted for adults with visible differences. Method: A pilot randomised controlled trial with a wait-list control group was carried out to assess preliminary intervention efficacy and gain information about the acceptability and feasibility of the programme. Forty-four adults aged 21-63 years (M = 40.21; SD = 12.05) with visible differences took part. Various facets of body image (i.e. functionality appreciation and body appreciation) as well as depression and anxiety were assessed immediately pre- and post-intervention and at three-months. Results: Participants reported enjoying the programme, felt that the format was acceptable, and it significantly increased functionality appreciation, which was maintained at three-months. However, there were no improvements in body appreciation, depression, and anxiety. Conclusions: In future, a full trial should be carried out with an active control group.

Parental concerns about genital differences in children with congenital adrenal hyperplasia persist regardless of the selected intervention.

BACKGROUND: Congenital Adrenal Hyperplasia (CAH) due to 21-hydroxylase deficiency (21HD) can affect the in utero development of the genital anatomy of people with the 46XX karyotype. Health professionals engage parents in decision-making regarding managing genitals with this difference, including genital surgery options and patient communication. AIM: We sought to investigate parental communication with their daughters regarding clitoral size variation related to neonatal CAH. METHODS: Semistructured in-person interviews of 24 parents of chromosomal XX children with clitoral size variation attributable to a neonatal CAH diagnosis comprised 3 management categories: (1) clitoral reduction surgery (RS) (7 parents, 9 children), (2) clitoral concealment surgery (CS) (8 parents, 8 children), and no surgery on or around the clitoris (NS) (9 parents, 7 children). OUTCOMES: Four representative themes, Obvious Choice, Still Different, Parental Burden, and Ignorance Is Bliss, were common across all 3 treatment groups. RESULTS: For most parents, none of the 3 options of genital appearance alteration via clitoral reduction, clitoral concealment surgery, or avoidance of clitoral surgery ameliorated concerns, with most parents expressing an aversion to educating their child on the topic of genital differences, past treatment, or future function. CLINICAL IMPLICATIONS: Reliance on surgical treatment pathways to manage this psychosocial concern is ineffective in alleviating parental uncertainty without the application of psychosocial interventions. STRENGTHS AND LIMITATIONS: This was a qualitative study but was limited to parents of children with a specific genital difference, without direct exploration of parental values regarding the clitoris or the application of adequate psychosocial care. CONCLUSION: Healthcare services must have an impact on parental ability to engage in essential communication with their children in cases such as clitoral size variation related to neonatal CAH. Improved communication skills allow parents to engage in more genuine decision-making and adapt to enduring genital reality, including possible future sexual challenges for their adult child, without resorting to burdensome strategies focused on attempts to perpetuate a benevolent ignorance.