Psychosocial interventions for children and young people with visible differences resulting from appearance-altering conditions, injury, or treatment effects: An updated systematic review

AbstractObjectiveChildren 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.MethodsInclusion 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.ResultsUsing 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.ConclusionThere 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

Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population

BackgroundThe Chalder Fatigue Scale, also known as the Chalder Fatigue Questionnaire (CFQ) is a Patient Reported Outcome Measure (PROM) comprising 11 items designed to measure physical and cognitive fatigue. It is widely used with people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There is no published evaluation of the content validity of the CFQ.ObjectivesTo elicit information regarding the cognitive processes undertaken by people living with ME/CFS, when completing the CFQ to allow examination of the CFQ’s content validity.MethodsA qualitative study utilising semi-structured cognitive interviewing. All data were collated according to the CFQ item but some general criticisms of the content validity of the CFQ were also identified.ResultsThe CFQ currently consists of one item clearly related to physical symptoms (1.6), four items clearly related to cognitive function (1.8, 1.9, 1.10, 1.11) and one item relating to fatigue (1.5) which could be interpreted as cognitive and/or physical fatigue. The other five items have been identified by participants as lacking clarity (1.1, 1.7), relating to behaviour not symptoms (1.2, 1.4), or relating to sleepiness not fatigue (1.3).ConclusionParticipants provided a wealth of insight into the challenges related to relevance, comprehensiveness, and comprehensibility of the CFQ, indicating that revision is required. This strengthens the case for participation of people with lived experience at all stages of PROM development. There is a need for an assessment tool/PROM for clinical and research use ME/CFS which has undergone content validation involving people living with ME/CFS

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. (2015). 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 (2015) using a replacement review process. Methods: Inclusion criteria: 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; including a quantitative measure assessed pre- and post-intervention. Exclusion criteria: 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. (2015) as one source of studies, twenty-four studies were included evaluating a range of interventions such as social interaction skills training, residential social camps, and cognitive behavioural therapy. Risk of bias was high in twenty studies and of some concern in four studies. Conclusions: 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