Catrin Griffiths

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.

A systematic review of patient reported outcome measures (PROMs) used in child and adolescent burn research

INTRODUCTION Patient reported outcome measures (PROMs) can identify important information about patient needs and therapeutic progress. The aim of this review was to identify the PROMs that are being used in child and adolescent burn care and to determine the quality of such scales. METHODS Computerised and manual bibliographic searches of Medline, Social Sciences Index, Cinahl, Psychinfo, Psycharticles, AMED, and HAPI, were used to identify English-language articles using English-language PROMs from January 2001 to March 2013. The psychometric quality of the PROMs was assessed. RESULTS 23 studies met the entry criteria and identified 32 different PROMs (31 generic, 1 burns-specific). Overall, the psychometric quality of the PROMs was low; only two generic scales (the Perceived Stigmatisation Questionnaire and the Social Comfort Scale) and only one burns-specific scale (the Children Burn Outcomes Questionnaire for children aged 5-18) had psychometric evidence relevant to this population. CONCLUSIONS The majority of PROMs did not have psychometric evidence for their use with child or adolescent burn patients. To appropriately identify the needs and treatment progress of child and adolescent burn patients, new burns-specific PROMs need to be developed and validated to reflect issues that are of importance to this population.

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.

Response to letter to the editor: 'The burn outcome questionnaires: patient and family reported outcome metrics for children of all ages'

We thank Ryan et al. for their response to our systematic review of patient reported outcome measures (PROMs) in child and adolescent burn care [1]. Our review identified 32 PROMs currently being used in this field, of which only one burnspecific measure (the Children’s Burn Outcome Questionnaire for children aged 11-18 [2] and two generic PROMs (the Perceived Stigmatization Questionnaire [3,4] and the Social Comfort Scale [3,4]) had appropriate psychometric evidence for use with children and adolescents with burns. These findings can guide clinicians and researchers seeking the most appropriate PROMs for use with patients and/or research participants. Ryan et al.’s burn-specific measure (the Children’s Burn Outcome Questionnaire for children aged 11–18) was included in our review (see above), whilst the other PROMs in their portfolio (the Young Adult Burn Outcome Questionnaire (for adult burn survivors aged 19–30) [5] and the parent proxy measures (for children aged 0–5 [6] and for young people aged 5–18 [2] fell out of the scope of our review which aimed to identify only the reported outcome measures currently being used with 8 to 17 year olds. By the time children reach the age of 8 they are considered to have the skills needed to reliably report more complex concepts such as their own thoughts and feelings [7]. This was why our systematic review only included papers in which PROM data was provided by children (aged 8–11) or adolescents (aged 12–17), or where the mean age of participants was between aged 8 and 17. Patients aged 18 and over are deemed to be adults, and we have conducted a separate systematic review of PROMs used in adult burn care research [8]. Measures reported by anyone other than the person who sustained the burn injury, for example parents, teachers or clinicians, were not included in our review since although their reports are important for understanding young people’s experiences, they should be treated as different perspectives on the same topic and scores from different sources should not be aggregated or treated interchangeably [9].

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. Lay Summary Background: As well as the physical implications of sustaining a burn injury, individuals and their families often face a range of psychological and social difficulties, which can be long-lasting and have a significant impact on their wellbeing. Within UK burn services, health professionals provide psychosocial support for a wide range of difficulties, including anxieties about treatment or social reengagement, depression, coming to terms with appearance chances as a result of scarring, post-traumatic stress and bereavement. However, although psychosocial support is available, little is known about how it is provided. Therefore, the current study aimed to explore the views of health professionals who provide psychosocial support in UK burn care. Method: Telephone interviews were carried out with eight health professionals who provide psychosocial support to patients and families affected by burns. The interviews revealed that the health professionals provide a variety of support to individuals and their families, for a wide range of psychological and social issues. Results: Analysis identified two key themes: Burn service-related experiences and challenges included health professionals not having enough time to provide support to all patients; patients being unable to attend appointments because they live a large distance from their nearest burn service; patients and families viewing medical appointments as more important than therapy sessions; and difficulties assessing patients with the tools which are currently available. Therapy-related experiences and challenges related to sociocultural and familial factors influencing how patients engage with support, pre-existing mental health difficulties interfering with recovery and a variation in how soon patients feel able to engage with support. Findings: The findings provide initial insight into the experiences of psychosocial health professionals in UK burn care and provide directions for future research.

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.