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

OBJECTIVE: Children and young people with visible differences can experience psychosocial difficulties, such as anxiety and teasing by others. Interventions targeting difficulties have previously been reviewed by Jenkinson et al. This review aimed to identify and critically assess recent studies evaluating the effectiveness of psychosocial interventions for children and young people with visible differences on psychosocial wellbeing, self-esteem, and social experiences and compare the findings with Jenkinson et al. using a replacement review process. METHODS: Inclusion criteria are as follows: studies with participants aged 0-18 years with visible differences; investigating a psychosocial intervention; including comparison with an alternative intervention, control group, or pre- and post-intervention; and including a quantitative measure assessed pre- and post-intervention. Exclusion criteria are as follows: participants with body dysmorphic disorder or appearance changes due to eating disorders or obesity and studies not written in English. MEDLINE, AMED, and PsycInfo were searched and grey literature was included. Results were reviewed against eligibility criteria, data were extracted, and studies were evaluated using the Cochrane Risk of Bias 2 tool. RESULTS: Using Jenkinson et al. as one source of studies, 24 studies were included evaluating a range of interventions such as social interaction skills training, residential social camps, and cognitive behavioral therapy. Risk of bias was high in 20 studies and of some concern in four studies. CONCLUSION: There is some evidence of the effectiveness of hypnotherapy, a relaxation response resiliency program, integrative body-mind-spirit group, and therapeutic patient education, but more rigorous research is needed to confirm their impact on psychosocial outcomes.

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 effectiveness of interventions to improve psychosocial outcomes in parents of children with appearance-affecting health conditions: A systematic review.

BACKGROUND: Although many cope well, the impact of supporting a child with an Appearance-Affecting Health Condition (AAHC) can place a significant demand on parents. As such, it is vital that families have access to appropriate psychosocial support to reduce any potential difficulties. Although previous reviews have explored the effectiveness of psychosocial interventions for parents of Children and Young People (CYP) with general health conditions, the evidence of effectiveness remains limited. Further, little is known about the effectiveness of such interventions specifically among parents of CYP with AAHCs. This review aimed to identify and assess the evidence of effectiveness of psychosocial interventions among parents of CYP with AAHCs. METHODS: Database searches were conducted using MEDLINE, PsychARTICLES, PsychINFO, CINAHL Plus, the British Nursing Database and the Cochrane Library. Results were reviewed against the inclusion criteria and data were extracted. Methodological quality was assessed using the Effective Public Health Practice Project Quality Assessment Tool, and a narrative synthesis was conducted. RESULTS: Fifteen studies, evaluating 10 interventions, were included and overall seven interventions were found to be effective (effect sizes and methodological quality varied). CONCLUSIONS: This review finds moderate to strong evidence of effectiveness of the Triple P Positive Parenting Program, the Early Family Intervention Program and general parent education/training interventions. These findings offer useful insights relating to the delivery of current support, as well as for the development of future parent and family interventions. Finally, recommendations for future intervention evaluation studies in this area are made.

The Contribution of a Charitable Organization to Regional Cleft Lip and Palate Services in England and Scotland.

BACKGROUND: From diagnosis through to adulthood, a cleft lip and/or palate (CL/P) poses a number of challenges for those affected. Alongside the care provided by clinical teams, complementary information and support is offered by charitable organizations. In 2011, the Cleft Lip and Palate Association received funding to implement a new regional service across England and Scotland, with the aim of increasing support at a local level. The Centre for Appearance Research at the University of the West of England were commissioned to conduct an independent evaluation of the service over 7 years. METHODS: A pragmatic, mixed-methods approach was utilized to assess the impact of the service from the perspective of charity volunteers; children, young people, and adults with CL/P; caregivers; and clinicians. Feedback forms were distributed to stakeholders at a variety of events, and qualitative feedback was collected via focus groups and an online survey. RESULTS: The majority of participants indicated they had gained access to a local support network, felt more able to cope with CL/P-related challenges, and felt more confident in themselves. Qualitative investigation provided further support for these findings and highlighted additional benefits of the regional service for clinical teams. CONCLUSIONS: The evaluation provides encouraging evidence toward the contribution of a relatively small charitable organization in the context of cleft care. The importance of a pragmatic approach to community-based evaluation and the benefits of collaborative working between researchers and the charitable sector were also highlighted.

Teachers' Perspectives on the Impact of Cleft Lip and/or Palate During the School Years.

BACKGROUND: Cleft lip and/or palate (CL/P) poses many challenges for those affected throughout the school years, with recent studies pointing to a trend in poor educational outcomes. Previous research has highlighted the important role that teachers play in supporting young people with chronic health conditions yet studies in the field of CL/P suggest that teachers may lack knowledge of the condition, and underestimate pupils' academic ability. Qualitative investigation of the impact of CL/P from the teacher's perspective may provide additional insight as well as potential suggestions for improving the school experience for affected pupils. METHODS: Twenty UK preschool, primary, and secondary school teachers with experience of teaching pupils with CL/P completed an open-ended survey, eliciting qualitative data. RESULTS: Qualitative content analysis was performed. Data were presented under 5 key headings: Knowledge of CL/P and its effects, perceived impact of CL/P on education, teachers' training needs, delivery of training, and impact of CL/P on teachers. Teachers were able to identify a number of potential social, emotional, and treatment-related challenges within the school setting, yet did not believe that CL/P would have a long-term impact on pupils' educational achievement. Participating teachers reported that cleft-specific training and access to relevant resources would be highly beneficial. CONCLUSIONS: Acting as a platform for future research, this exploratory study provides insight into the challenges faced by teachers and offers suggestions for how to improve teachers' understanding of CL/P, and their confidence in dealing with cleft-related issues.

The Experiences and Support Needs of Grandparents of Children Born With Cleft Lip and/or Palate.

OBJECTIVE: The birth of a child with a cleft lip and/or palate (CL/P) can have a significant emotional and social impact on parents. Yet, the impact on the wider family is rarely investigated. Grandparents are becoming increasingly involved in the care of their grandchildren and may therefore have support needs of their own. The aim of the current study was to explore the experiences and support needs of grandparents of children born with CL/P. DESIGN: Individual semistructured telephone interviews were carried out with 12 grandparents of children born with CL/P and were analyzed using inductive thematic analysis. RESULTS: Five themes were identified (1) emotional impact of CL/P on grandparents, (2) grandparents' social experiences, (3) grandparents' involvement, (4) grandparents' information needs, and (5) grandparents' support needs. Participants experienced difficult emotions around the time of diagnosis and were concerned about the child's treatment and future experiences. Participants played a significant role in supporting the whole family, but received little information or support themselves. CONCLUSIONS: Grandparents reported experiences comparable to published literature on parents. Clinicians and charitable organizations could consider how existing resources could be made more accessible to and/or adapted for wider family members, including grandparents.

Congenital melanocytic naevus (CMN) through the lens: Using photo-elicitation interviews to explore adjustment in adolescents with a rare birthmark condition.

Adolescents with the rare birthmarks congenital melanocytic naevi (CMN) experience physical and psychosocial challenges, many of which stem from looking different from the 'norm'. However, some adjust and have positive experiences. Understanding the lived experiences of adolescents who have adjusted to CMN can provide a holistic picture of adjustment and inform the development of support and interventions for others with the condition. Open, participant-driven photo-elicitation interviews were conducted with four White females (15-17 years) who self-identified as having adjusted to CMN. Participants chose five photographs which were used to guide the interviews (47-80 min). Interpretative phenomenological analysis (IPA) was used to analyse the transcribed interview data. Three superordinate themes were identified: 'Accepting My 'True' Self' (1), 'I am Not Alone in This' (2), and 'Developing as a Person' (3). The themes related to accepting CMN as part of their identity, developing a positive body image (e.g., body appreciation, broad conceptualisations of beauty, body image flexibility), feeling supported and accepted by family, friends, and others with CMN, and developing adaptive coping skills. Findings suggest positive body image may be important for adjustment and can be determined by an individual. The benefits of using photo-elicitation within appearance research are discussed.

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.

Imagery versus captions: The effect of body positive Instagram content on young women's mood and body image.

Body positive social media content aims to positively impact young women's body image and mood by challenging traditionally narrow beauty ideals. This online experiment investigated the effect of viewing body positive Instagram posts on young women's body image and mood, whilst focusing on understanding the impact of the images and captions in the posts. Overall, 195 young women (18-30 years old) were randomly assigned to view either body positive (consisting of images and captions), body positive captions only, body positive images only, or thin-ideal Instagram posts. Positive mood increased in all conditions pre to post exposure. Further, body satisfaction and negative mood improved pre-post exposure for all body positive conditions. However, when controlling for trait body appreciation significant effects only remained for the combined image and caption body positive condition. There were no significant differences in positive mood, state body appreciation, self-objectification, or broad conceptualisations of beauty between the three body positive exposure conditions. Therefore, to improve body satisfaction and mood, body positive content should include a combination of images and captions.

A systematic review of interventions aiming to promote positive body image in children and adolescents.

Evidence shows interventions can improve positive body image in adult women. This systematic review examined the evidence of efficacy of interventions that aimed to increase positive body image in children and young people aged under 18 years. The authors followed PRISMA guidelines for the review. Searches of CINAHL Plus, Medline, PsychINFO, Wiley Online Library, SCOPUS and grey literature were conducted up to February 2021 and identified 4171 papers. Thirteen studies evaluating 12 interventions, designed for children/adolescents aged 9-18 years, were eligible and evaluated using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool. The studies evaluated body appreciation, body-esteem, and embodiment. Studies using cognitive dissonance, peer support, and psychoeducation had evidence of improving body appreciation and body-esteem in adolescent girls. However, evidence of efficacy for younger children and boys was lacking and the studies ranged in methodological quality. Further research should rigorously evaluate positive body image interventions using second-generation measures that assess specific components of positive body image and consider how to promote positive body image in young children and boys.

A Rapid Systematic Review of Public Responses to Health Messages Encouraging Vaccination against Infectious Diseases in a Pandemic or Epidemic.

Public health teams need to understand how the public responds to vaccination messages in a pandemic or epidemic to inform successful campaigns encouraging the uptake of new vaccines as they become available. A rapid systematic review was performed by searching PsycINFO, MEDLINE, healthevidence.org, OSF Preprints and PsyArXiv Preprints in May 2020 for studies including at least one health message promoting vaccine uptake of airborne-, droplet- and fomite-spread viruses. Included studies were assessed for quality using the Mixed Methods Appraisal Tool (MMAT) or the Assessment of Multiple Systematic Reviews (AMSTAR), and for patient and public involvement (PPI) in the research. Thirty-five articles were included. Most reported messages for seasonal influenza (n = 11; 31%) or H1N1 (n = 11; 31%). Evidence from moderate to high quality studies for improving vaccine uptake included providing information about virus risks and vaccination safety, as well as addressing vaccine misunderstandings, offering vaccination reminders, including vaccination clinic details, and delivering mixed media campaigns across hospitals or communities. Behavioural influences (beliefs and intentions) were improved when: shorter, risk-reducing or relative risk framing messages were used; the benefits of vaccination to society were emphasised; and beliefs about capability and concerns among target populations (e.g., vaccine safety) were addressed. Clear, credible, messages in a language target groups can understand were associated with higher acceptability. Two studies (6%) described PPI in the research process. Future campaigns should consider the beliefs and information needs of target populations in their design, including ensuring that vaccine eligibility and availability is clear, and messages are accessible. More high quality research is needed to demonstrate the effects of messaging interventions on actual vaccine uptake.

What influences people's responses to public health messages for managing risks and preventing infectious diseases? A rapid systematic review of the evidence and recommendations.

BACKGROUND: Individual behaviour changes, such as hand hygiene and physical distancing, are required on a population scale to reduce transmission of infectious diseases such as COVID-19. However, little is known about effective methods of communicating risk reducing information, and how populations might respond. OBJECTIVE: To synthesise evidence relating to what (1) characterises effective public health messages for managing risk and preventing infectious disease and (2) influences people's responses to messages. DESIGN: A rapid systematic review was conducted. Protocol is published on Prospero CRD42020188704. DATA SOURCES: Electronic databases were searched: Ovid Medline, Ovid PsycINFO and Healthevidence.org, and grey literature (PsyarXiv, OSF Preprints) up to May 2020. STUDY SELECTION: All study designs that (1) evaluated public health messaging interventions targeted at adults and (2) concerned a communicable disease spread via primary route of transmission of respiratory and/or touch were included. Outcomes included preventative behaviours, perceptions/awareness and intentions. Non-English language papers were excluded. SYNTHESIS: Due to high heterogeneity studies were synthesised narratively focusing on determinants of intentions in the absence of measured adherence/preventative behaviours. Themes were developed independently by two researchers and discussed within team to reach consensus. Recommendations were translated from narrative synthesis to provide evidence-based methods in providing effective messaging. RESULTS: Sixty-eight eligible papers were identified. Characteristics of effective messaging include delivery by credible sources, community engagement, increasing awareness/knowledge, mapping to stage of epidemic/pandemic. To influence intent effectively, public health messages need to be acceptable, increase understanding/perceptions of health threat and perceived susceptibility. DISCUSSION: There are four key recommendations: (1) engage communities in development of messaging, (2) address uncertainty immediately and with transparency, (3) focus on unifying messages from sources and (4) frame messages aimed at increasing understanding, social responsibility and personal control. Embedding principles of behavioural science into public health messaging is an important step towards more effective health-risk communication during epidemics/pandemics.

The effectiveness of interventions aiming to promote positive body image in adults: A systematic review.

Theory suggests promoting positive body image (PBI) through interventions would have a significant impact on health and well-being. However, little is known about the effectiveness of existing interventions. This review aimed to identify and assess the evidence of effectiveness of interventions to increase PBI in adults. Database searches were conducted using CINAHL Plus, Medline, PsychINFO, Wiley Online Library, and SCOPUS. Application of inclusion criteria and data extraction were conducted by two reviewers. Methodological quality was assessed using the Effective Public Health Practice Project Quality Assessment Tool, and narrative synthesis was conducted. Fifteen studies, evaluating 13 interventions, were included. Three studies, evaluating one online writing-based functionality intervention, were judged to have strong methodological quality and had evidence of improving body appreciation, body esteem, and functionality satisfaction. Six moderate quality studies found interventions using intuitive eating, CBT, self-compassion, and exercise improved PBI. There was limited evidence of effectiveness of interventions for men, suggesting future research is needed to better understand PBI mechanisms in men. Lack of heterogeneity of outcome measures is discussed as a limitation. Findings suggest existing interventions are effective at increasing aspects of PBI among women and support the development of interventions that target multiple components of PBI.

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 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.

Assessing the effectiveness of interventions to support patient decision making about breast reconstruction: A systematic review.

BACKGROUND: Decision making about breast reconstruction (BR) following a diagnosis of breast cancer, Ductal Carcinoma in Situ (DCIS), or to reduce future breast cancer risk, is difficult and complex. This paper systematically reviews interventions aiming to support patients facing the option of BR, and assesses their effectiveness in improving a range of patient outcomes. METHODS: Ten databases were searched for articles published up to October 2017 that evaluated interventions to support patient decision making about BR within controlled trials. All included studies were assessed for methodological quality. Descriptive analyses of patient outcomes within included studies were performed. RESULTS: The search yielded 3291 articles. Eight studies met the inclusion criteria resulting in the evaluation of seven distinct interventions (n = 1212). Six studies were assessed to be of weak methodological quality, with one of moderate and one of strong quality. Three out of five interventions demonstrated a reduction in decisional conflict (ds = 0.26-0.69) and two out of three interventions resulted in reductions in decisional regret (ds = 0.27-3.69) at various time points. Treatment choice was altered in two of five studies. There were no changes in patient-reported anxiety levels, whilst the impact on depression was mixed. In all studies which reported on it, improvements in patient satisfaction and involvement in decision making were found. CONCLUSIONS: Few interventions are currently available. Whilst some findings are encouraging, improvements on patient outcomes are mixed. Further research should focus on the development and evaluation of effective interventions.

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.