Perspectives of health professionals on the psychosocial impact of an altered appearance among adolescents treated for cancer and how to improve appearance-related care

Williamson, Heidi; Rumsey, Nichola

doi:10.1080/07347332.2016.1247407

Cited by 11 publications

(10 citation statements)

References 31 publications

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“…They adopted strategies such as only broaching the subject if appearance-related concerns were the reason for the consultation, which is problematic as young people rarely initiate a request for psychological support (YMCA, 2016), often waiting for the GP to raise the topic (Mauerhofer et al ., 2009). If health professionals struggle to normalise and validate appearance-related concerns (an aim of current societal interventions, eg, Stice et al ., 2000), this ‘conspiracy of silence’ may reinforce young people’s beliefs that appearance concerns are inconsequential (Williamson et al ., 2010). This serves to further stigmatise the topic and prevent young people seeking support.…”

Section: Discussionmentioning

confidence: 99%

Recruiting young people with a visible difference to the YP Face IT feasibility trial: a qualitative exploration of primary care staff experiences

Hamlet

Williamson

Harcourt

2017

Prim Health Care Res Dev

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During the recruitment period, a focus group with participating GPs and nurses explored recruitment challenges. In addition, at the end of the recruitment period, telephone interviews were conducted with eight GPs and nurses involved in recruiting to the study, in order to inform a definitive trial of YP Face IT. Transcripts were subjected to thematic analysis. Findings Despite reporting that the study was valuable and interesting, interviewees struggled to recruit in-consultation. They appeared to lack confidence in raising the sensitive issue of a visible difference and adopted strategies to avoid mentioning the topic. Participants felt the nature of the target population, as well as pressures of the primary care environment presented challenges to recruitment, but welcomed YP Face IT as an intervention that could address unmet support needs. Primary care staff may benefit from training to help them raise the subject of a visible difference with young people in order to identify those that require additional support.

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Section: Discussionmentioning

confidence: 99%

Recruiting young people with a visible difference to the YP Face IT feasibility trial: a qualitative exploration of primary care staff experiences

Hamlet

Williamson

Harcourt

2017

Prim Health Care Res Dev

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“…Individualized support and information can empower parents to fulfill their parental role with more confidence and reduce feelings of helplessness (Bull & Grogan, 2010). In parallel, unrealistic expectations of treatment outcomes have been shown to be associated with parental distress (Rumsey & Harcourt, 2004;Williamson & Rumsey, 2017), underlining the importance of communication in health care settings. Parents should be informed about post-surgical bruising and swelling, how long recovery could be expected to take, as well as longer term changes in appearance.…”

Section: A Change In Appearance: Surgical Interventionsmentioning

confidence: 99%

“Will You Still Feel Beautiful When You Find Out You Are Different?”: Parents’ Experiences, Reflections, and Appearance-Focused Conversations About Their Child’s Visible Difference

2021

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To investigate parents’ reflections and experiences of having a child born with an appearance-altering condition, interviews with 33 parents of children born with rare craniofacial conditions were analyzed using inductive thematic analysis. Three themes emerged: “Managing emotions: A dynamic process,” “Through another lens: External reminders of difference,” and “Awareness of difference: Approaching the child.” Findings suggest that although parents learned to accept and love their child’s visible difference, external factors such as appearance-altering surgery and other people’s reactions activated difficult emotions in parents. Parents struggled to decipher whether and when to raise appearance-related issues with their child, and how this could be done without distressing the child. Anticipatory guidance that facilitates positive appearance-focused conversations both within and outside the home seems to be needed. Parenting skills could also be strengthened by preparing parents for social reactions to the child’s visible difference, and their child’s changed appearance following surgery.

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“…Research [16] points to a dearth of evidence-based, cost-effective, and appearance-specific interventions for YP. Within UK primary health care, these YP rarely meet criteria for referral to Child and Adolescent Mental Health Services or waiting lists are long, and those receiving secondary health care for their condition often have no/limited access to psychological support [17]. Stakeholders (eg, clinicians and parents) also report barriers preventing YP from seeking or accepting psychological, particularly face-to-face, support around such a sensitive issue.…”

Section: Introductionmentioning

confidence: 99%

A Web-Based Self-Help Psychosocial Intervention for Adolescents Distressed by Appearance-Affecting Conditions and Injuries (Young Persons’ Face IT): Feasibility Study for a Parallel Randomized Controlled Trial

Williamson¹,

Hamlet²,

White³

et al. 2019

JMIR Ment Health

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BackgroundDisfigurement (visible difference) from wide-ranging congenital or acquired conditions, injuries, or treatments can negatively impact adolescents’ psychological well-being, education and health behaviours. Alongside medical interventions, appearance-specific cognitive behavioural and social skills training to manage stigma and appearance anxiety may improve psychosocial outcomes. YP Face IT (YPF), is a Web-based seven session self-help program plus booster quiz, utilising cognitive behavioural and social skills training for young people (YP) struggling with a visible difference. Co-designed by adolescents and psychologists, it includes interactive multimedia and automated reminders to complete sessions/homework. Adolescents access YPF via a health professional who determines its suitability and remotely monitors clients’ usage.ObjectiveTo establish the feasibility of evaluating YPF for 12-17 year olds self-reporting appearance-related distress and/or bullying associated with a visible difference.MethodsRandomized controlled trial with nested qualitative and economic study evaluating YPF compared with usual care (UC). Feasibility outcomes included: viability of recruiting via general practitioner (GP) practices (face to face and via patient databases) and charity advertisements; intervention acceptability and adherence; feasibility of study and data collection methods; and health professionals’ ability to monitor users’ online data for safeguarding issues. Primary psychosocial self-reported outcomes collected online at baseline, 13, 26, and 52 weeks were as follows: appearance satisfaction (Appearance Subscale from Mendleson et al’s (2001) Body Esteem Scale); social anxiety (La Greca’s (1999) Social Anxiety Scale for Adolescents). Secondary outcomes were; self-esteem; romantic concerns; perceived stigmatization; social skills and healthcare usage. Participants were randomised using remote Web-based allocation.ResultsThirteen charities advertised the study yielding 11 recruits, 13 primary care practices sent 687 invitations to patients on their databases with a known visible difference yielding 17 recruits (2.5% response rate), 4 recruits came from GP consultations. Recruitment was challenging, therefore four additional practices mass-mailed 3,306 generic invitations to all 12-17 year old patients yielding a further 15 participants (0.5% response rate). Forty-seven YP with a range of socioeconomic backgrounds and conditions were randomised (26% male, 91% white, mean age 14 years (SD 1.7)); 23 to YPF, 24 to UC). At 52 weeks, 16 (70%) in the intervention and 20 (83%) in UC groups completed assessments. There were no intervention-related adverse events; most found YPF acceptable with three withdrawing because they judged it was for higher-level concerns; 12 (52%) completed seven sessions. The study design was acceptable and feasible, with multiple recruitment strategies. Preliminary findings indicate no changes from baseline in outcome measures among the UC group and positive changes in appearance satisfactio...

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Perspectives of health professionals on the psychosocial impact of an altered appearance among adolescents treated for cancer and how to improve appearance-related care

Cited by 11 publications

References 31 publications

Recruiting young people with a visible difference to the YP Face IT feasibility trial: a qualitative exploration of primary care staff experiences

Recruiting young people with a visible difference to the YP Face IT feasibility trial: a qualitative exploration of primary care staff experiences

“Will You Still Feel Beautiful When You Find Out You Are Different?”: Parents’ Experiences, Reflections, and Appearance-Focused Conversations About Their Child’s Visible Difference

A Web-Based Self-Help Psychosocial Intervention for Adolescents Distressed by Appearance-Affecting Conditions and Injuries (Young Persons’ Face IT): Feasibility Study for a Parallel Randomized Controlled Trial

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