Heidi Williamson

Adolescents’ and Parents’ Experiences of Managing the Psychosocial Impact of Appearance Change During Cancer Treatment

Using combined qualitative data from multiple case study interviews and an online survey, this study explored the impact of appearance change on 22 adolescents receiving cancer treatment aged 13 to 18 years and six of their parents. Data were analyzed using template analysis. Appearance changes were a major concern. Adolescents typically struggled to adapt to new experiences and concerns related to this highly sensitive issue. Many felt anxious and self-conscious and were reluctant to reveal appearance changes in public. These feelings were compounded by the negative reactions of others (e.g., staring, teasing, and inappropriate questioning), which sometimes lead to avoidance of social activity and threats of noncompliance. Parents of these children felt ill-prepared to manage appearance-related anxieties. Adolescents wanted support to develop the practical and social skills necessary to maintain a “normal” appearance and manage the negative responses of others. However, some adolescents showed resilience and, with support from friends and family, developed strategies to manage their altered appearance and its social consequences. These strategies are explored, which can inform interventions to support adolescents and parents.

Looking age-appropriate while growing old gracefully: A qualitative study of ageing and body image among older adults

Body dissatisfaction can be significantly detrimental to wellbeing. Little is known about older adults’ body image, despite the fact that ageing causes unique bodily changes and that sociocultural pressures to resist these changes abound. We conducted six focus groups with a UK community sample of White British and South Asian older adults aged 65–92 years. Thematic analysis highlighted four themes: appearance indicates capability and identity; physical ability trumps appearance; felt pressures to age ‘gracefully’ while resisting appearance changes; and gender and cultural differences. These findings suggest that older adults’ body image can have important implications for their wellbeing and merits researchers’ attention.

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.

Systematic Review: Psychosocial Interventions for Children and Young People With Visible Differences Resulting From Appearance Altering Conditions, Injury, or Treatment Effects

OBJECTIVE Evaluate critically the evidence of the effectiveness of psychosocial interventions for children/young people (<18 years old) with visible differences in improving self-esteem, social experiences, psychological well-being, and behavioral outcomes. METHODS Studies were systematically identified using electronic databases, appraised according to eligibility criteria and evaluated for risk of bias. Findings were reported using the PRISMA checklist. RESULTS Studies were identified that evaluated residential social camps, exercise with counseling, social skills training (SIST), behavioral therapy (BT), and cognitive behavioral therapy (CBT). Risk of bias within studies was high. Camp studies and exercise with counseling showed little or no effect postintervention on self-esteem, social experiences, and psychological well-being. The five studies evaluating SIST, CBT, and BT provided limited support for their effectiveness. CONCLUSIONS Evidence base is inconclusive. Further rigorous research using appropriate outcome measures to evaluate the effectiveness of interventions for young people with visible differences is required.

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.

Study protocol of the YP Face IT feasibility study: comparing an online psychosocial intervention versus treatment as usual for adolescents distressed by appearance-altering conditions/injuries

Introduction A significant number of adolescents suffer extensive and enduring difficulties such as social anxiety, body image dissatisfaction, low self-esteem and bullying as a result of conditions or injuries that affect their appearance (eg, craniofacial and skin conditions, treatment side effects and scarring). Evidence-based psychosocial interventions to meet their specific needs are currently lacking. YP Face IT, developed by the UKs Centre for Appearance Research in collaboration with clinical experts and young people, is an innovative online psychosocial intervention designed to offer this group immediate support, advice and coping strategies. It has been endorsed by young people, their parents/carers, GPs, clinical psychologists and health professionals working with those affected by appearance-related conditions. Methods and analysis Young people aged 12–17 with an appearance-altering condition/injury that self-identify as experiencing appearance-related distress, teasing or bullying will be invited to participate via GP practices and UK charities. Consenting participants will be randomised to the intervention (YP Face IT) or the treatment as usual (TAU) control group. Outcome measures will be completed by young people and their parents/carers at baseline, 13, 26 and 52 weeks. Primary outcome measures will be the Body Esteem Scale and the Social Anxiety Scale for Adolescents. Participants will complete other health-related outcome measures and resource use questionnaires for health economic analysis. We will assess recruitment rates, acceptability of the YP Face IT programme, adherence and retention to treatment, questionnaire completion rates, variation of TAU in Primary Care and the feasibility of GP practice staff supervising young peoples use of YP Face IT. Ethics and dissemination This feasibility trial protocol (V.1, 3 March 2014), received a favourable ethical opinion from the NRES Committee South West-Frenchay (reference number 14/SW/0058). Findings will be disseminated through academic peer-reviewed publications, conferences and to participating GP practices and charities supporting those with conditions affecting appearance. Trial registration number ISRCTN40650639; Pre-results.

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.

Parent-perceived isolation and barriers to psychosocial support: A qualitative study to investigate how peer support might help parents of burn-injured children

Introduction: Burn injuries can be traumatic and distressing for the affected child and family, with a prolonged period of recovery. This research explores parents’ experiences of support following their child’s injury and their thoughts on peer support specifically. Methods: Thirteen semi-structured interviews were conducted with parents/caregivers, a mean of three years after their child’s injury, either face-to-face or remotely. Responses were analysed using thematic analysis. Results: Analysis produced four themes and 11 sub-themes. These described parents’ experiences of loss, change, isolation and access to psychosocial support. This paper focuses on themes of isolation and parents’ access to psychosocial support. Discussion: Findings indicate that parents access psychosocial support following their child’s injury and often find it helpful; however, there is a prevailing sense of isolation. Parents often seek information online and find that this is lacking. Many parents reported that peer support would be valuable to them, particularly the sharing of experiential knowledge. Conclusion: An online resource may be beneficial for parents, but further research is needed to confirm the exploratory data gained to date, ensuring that any resource developed would meet the identified needs of parents. Lay Summary Burn injuries can be traumatic and distressing for the affected child and family. This article describes research exploring parents’ experiences of support following their child’s injury and their thoughts on peer support specifically. Peer support is support from another parent who has also had experience of having a child with a burn injury. Thirteen parents were interviewed either face-to-face, over the telephone, via Skype or by email. The findings suggest that parents do access psychosocial support following their child’s injury and often find it helpful. However, parents continue to feel isolated following the accident. This experience of isolation can be emotional or physical in nature. The hospital environment can cut parents off from the outside world in the early stages post-burn. Later, the experience of isolation can be maintained by poor communication. In an attempt to overcome this feeling of isolation, parents often seek information online but find that this is lacking. Many parents reported that peer support would be valuable to them, particularly learning from the knowledge of other parents who have been in similar circumstances before. An online resource may be beneficial for parents and aid sharing of this information. However, further research is needed to confirm these findings in order to ensure that any resource developed would meet the needs expressed by parents.

Challenges of recruiting adolescents for appearance-related research in a specialist tertiary hospital: Adolescents and appearance research

Aim: To discuss the experiences and specific challenges of recruiting adolescents with appearance-altering conditions or injuries for qualitative interviews exploring appearance worry and an acceptability study testing a new online intervention designed to target appearance-related distress. Methods: Between August 2016 and January 2017, 88 families were invited to take part in the studies. Patients were approached in outpatient consultations at Australia’s largest paediatric tertiary hospital. A final 25 participants were recruited to at least one of the studies. Results: Successfully recruiting adolescents for research that explored appearance worry was challenging. Environmental barriers in the clinic environment and reluctance discussing appearance-related subject matter impacted clinical staff involvement and participant engagement. Misconceptions about resolving and managing appearance distress also influenced consent. Conclusions: This paper illustrates the complexities of recruiting young people for appearance-based research in a paediatric tertiary hospital and important considerations for successful recruitment. Recommendations highlight the important of early participant involvement, maximising the support of clinicians with study-specific training, being mindful of first impressions and adopting novel, non-traditional methodology and advertising strategies. Knowledge gained from this paper aims to assist future researchers conduct more successful appearance-based research in paediatric tertiary centres.

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.