Four Steps To My Future (4STMF): acceptability, feasibility and exploratory outcomes of a universal school-based mental health and well-being programme, delivered to young adolescents in South Africa.

OBJECTIVE: Mental health disorders affect many children in South Africa, where vulnerability is high, and treatment is limited. We sought to determine the feasibility and acceptability of a universally delivered classroom-based programme for the promotion of mental health in young adolescents. METHOD: We pilot tested an 8 session, cognitive-behavioural therapy-based programme, 4 Steps To My Future (4STMF) in two schools. Participants were grade 5 learners (n = 222; Meanage = 10.62 (Standard deviation = 0.69)). 4STMF was delivered in class time by trained psychology postgraduates. Feasibility (rates of parental opt-out, child assent, assessment completion at baseline and follow-up, programme completion, session attendance and programme fidelity), acceptability (teacher feedback and focus groups with learners), as well as demographic data and data on a battery of a psychological measures were collected at baseline, postintervention and at one-month follow-up. RESULTS: Most eligible learners at both schools agreed to participate (85% - school 1; 91% - school 2) with more than 80% completing postintervention measures. Learner session attendance and programme fidelity were high. Teachers rated facilitators highly on confidence, preparedness, enthusiasm and classroom management and observed children to be enjoying the programme. Focus group data suggest that learners liked the programme, could recall the content and had shared some of the content with their family. An exploratory analysis of outcomes showed significant pre-post differences on self-esteem at school 1 and on emotion regulation at school 1 and school 2, maintained at follow-up. CONCLUSIONS: This pilot study has shown that 4STMF can acceptably and feasibly be delivered, at classroom level, as a universal school-based prevention programme to young adolescent learners in South African primary schools. The programme could fit in with school context, could be delivered by nonspecialists, showed significant improvements on self-esteem and emotion regulation and was liked by the learners.

"I'm always going to be tired": a qualitative exploration of adolescents' experiences of fatigue in depression.

Adolescent depression is a prevalent and disabling condition, but current psychological treatments are only moderately effective. One way to enhance outcomes is to further our understanding of adolescent depression and improve our capacity to target the most frequently reported and problematic symptoms. A common but often neglected symptom of depression is fatigue, which is associated with considerable impairment and has the potential to interfere with adolescents' engagement in psychological therapies. Despite this, the experience of fatigue in adolescent depression and how we target it in treatment is currently poorly understood. Therefore, we aimed to explore adolescents' experiences and understandings of fatigue in depression, recruiting from clinical and community settings. Semi-structured interviews were conducted with 19 UK-based adolescents aged 14-18 years old with elevated symptoms of depression. Using reflexive thematic analysis, three themes were generated. Fatigue is a complex concept explored adolescents' understanding of fatigue as a dynamic, multifaceted symptom which had mental and physical components. Trapped in a cycle of fatigue considered the complex and reciprocal relationship between fatigue and other depressive symptoms, and the subsequent impact of limited energy on engagement with everyday activities. Finally, stigma as a barrier to help-seeking highlighted how adolescents were reluctant to seek help due to experienced stigma and the perception that fatigue was not a serious enough symptom. Findings from this study suggest that fatigue should be viewed as a psychological as well as somatic symptom of depression, with implications regarding the identification and treatment of fatigue in depression in routine clinical practice.

Technology Matters: Online, self-help single session interventions could expand current provision, improving early access to help for young people with depression symptoms, including minority groups.

Current mental health service provision for young people was primarily designed based on an assumption of repeat attendance to enable access to interventions. This applies to in-person therapy and, in recent years, digitally provided apps and programmes. Yet, discontinuation after only one or two attendances or uses is a common problem. However, there is a different model, which is intentionally designing provision without assuming repeat attendance, that is, single session interventions. Evidence from the United States, where a suite of digital, self-help single session interventions, accessible anonymously, have been designed, indicates that these are helpful to young people with reductions in depression symptoms at up to 9 months later. These interventions also have had better reach into currently underserved populations (e.g. LGBTQ+ and ethnic minority adolescents). Therefore, these may be a potentially helpful way to expand existing provision at scale, enabling all young people to access evidence-based help quickly.

Parental Experiences of Adolescent Cancer-Related Pain: A Qualitative Study.

OBJECTIVE: Despite advancing medical treatments, pain remains a significant outcome of adolescent cancer, as both a problematic and distressing symptom. With adolescents spending substantial periods of time at home during cancer treatment, parents perceive themselves as central to the experience and management of adolescents' pain. The present study aimed to explore parental experiences of adolescent cancer-related pain during, and recently after, completing cancer treatment. METHODS: We interviewed 21 parents of adolescents (aged 12-18 years) with cancer, recruited through a hospital in South West England. Interviews were analyzed using reflexive inductive thematic analysis. RESULTS: Two themes were generated. The first theme, "Parental perceptions of being at the heart of pain management," focused on the role of parents in adolescents' pain journeys, and the vast knowledge they gained. The second, "Adapting and readjusting expectations," captured parents' journeys in learning to adjust their lives according to adolescents' pain and difficulties they faced throughout this process. CONCLUSIONS: Findings highlighted parents' crucial role throughout adolescents' pain experiences; learning how to manage adolescents' pain, and supporting them with the detrimental impact on their lives. The findings emphasize the importance of a multidisciplinary approach to supporting families to manage pain. They also indicate a need for targeted research studies investigating parental experiences of adolescent cancer-related pain. This will help professionals understand how best to support parents and adolescents throughout the cancer journey and ultimately improve the physical and psychological outcomes of young people in the longer term.

Loneliness and mental health in children and adolescents with pre-existing mental health problems: A rapid systematic review.

OBJECTIVES: Periods of social isolation are associated with loneliness in children and young people, and loneliness is associated with poor mental and physical health. Children and young people with pre-existing mental health difficulties may be prone to loneliness. Containment of COVID-19 has necessitated widespread social isolation, with unprecedented school closures and restrictions imposed on social interactions. This rapid review aimed to establish what is known about the relationship between loneliness and mental health problems in children and young people with pre-existing mental health problems. METHODS: We sought to identify all primary research that examined the cross-sectional and longitudinal associations between loneliness/perceived social isolation and mental health in children and young people with pre-existing mental health problems. We also aimed to identify effective interventions that reduce the adverse impact of loneliness. A rapid systematic search was conducted using MEDLINE, PsycINFO, and Web of Science. RESULTS: Of 4,531 papers screened, 15 included children and young people with pre-existing mental health conditions. These 15 studies included 1,536 children and young people aged between 6 and 23 years with social phobia, anxiety and/or depression, and neurodevelopmental disorders. Loneliness was associated with anxiety and depression both cross-sectionally and prospectively in children and young people with mental health problems and neurodevelopmental conditions. We found preliminary evidence that psychological treatments can help to reduce feelings of loneliness in this population. CONCLUSIONS: Loneliness is associated with depression and anxiety in children and young people with pre-existing mental health conditions, and this relationship may be bidirectional. Existing interventions to address loneliness and/or mental health difficulties in other contexts may be applied to this population, although they may need adaptation and testing in younger children and adolescents. PRACTITIONER POINTS: Loneliness is common in children and young people, and during periods of enforced social isolation such as during COVID-19, children and young people report high levels of loneliness (or increased rates of loneliness). The review showed that loneliness is associated, both cross-sectionally and prospectively, in children and young people with mental health problems and also in children and young people with neurodevelopmental conditions, such as autism spectrum disorder. Thus, loneliness is a possible risk factor of which mental health providers should be aware. Maintaining social contact both by direct and by indirect means, especially through the Internet, could be important in mitigating loneliness. Interventions to address loneliness should be further developed and tested to help children and young people with pre-existing mental health problems who are lonely by preventing exacerbation of their mental health difficulties, in particular anxiety and depression.

South African youth's understanding of feelings, thoughts and behaviours: Implications for the development of CBT-based mental health interventions.

BACKGROUND: Mental health problems are common in youth in low- and middle-income countries (LMICs), including South Africa. Preventative interventions, based on cognitive behaviour therapy (CBT), delivered in schools, have been found to alleviate symptoms of depression and anxiety in high income countries (HICs). However, less is known about whether youth in LMICs are able to engage with the core concepts of CBT. AIMS: To explore how young people in the Western Cape, South Africa, understand key CBT concepts, such as feelings, thoughts and behaviours. METHOD: We interviewed 22 young people (10-15 years of age; mean age 11.6 years; SD = 1.0) recruited from two public primary schools in the Western Cape, South Africa. Interviews were audio-recorded, transcribed verbatim, translated from Afrikaans into English where necessary and analysed thematically using a deductive approach. RESULTS: Young people described feelings as internal, private, and should only be shared with trusted others. They also described how feelings varied, depending on the situation. They found the concept of thoughts more challenging to describe. Youth were able to say what they do when they experience unpleasant feelings, and they linked their behaviours to their feelings and thoughts. CONCLUSIONS: In this cultural context, our qualitative investigation found evidence that young people were able to engage with abstract concepts including feelings and to some degree, thoughts. To ensure that CBT-based interventions are developmentally appropriate and accessible, psychoeducation may help youth distinguish between thoughts, feelings and behaviours, and a focus on identifying and naming feelings may be beneficial.

Depression symptom clusters in adolescents: A latent class analysis in a clinical sample.

BACKGROUND: Major depression is clinically heterogeneous. We aimed to identify classes of depressed adolescents with different symptom presentations and examine if these were differentially associated with illness severity, functioning, engagement with treatment, and clinical outcomes. METHOD: Baseline depression symptoms of 454 depressed adolescents (age 11-17) from the IMPACT trial were subjected to latent class analysis. We compared classes on self-reported symptoms and social impairment at baseline and follow-up and their engagement in treatment. RESULTS: We identified three classes of participants which differed in the number and pattern of depression symptoms; Class 1-Severe- (37.2%)-endorsed almost all symptoms and were most functionally impaired; Class 2-Moderate- (41.9%)-endorsed fewer symptoms with high suicidal ideation, self-harm, and worthlessness; Class 3-Somatic (20.9%)-endorsed fewest symptoms, with high somatic symptoms. Groups did not differ on engagement, therapeutic alliance, or post-treatment symptom reduction. Adolescents in the severe and moderate subgroups reported symptom reductions after treatment ended, whilst those in the somatic subgroup did not. CONCLUSIONS: At presentation, high somatic features in depressed adolescents, rather than severity, or impairment levels, may indicate lower liability for responding to psychological treatment.

Universal school-based mental health programmes in low- and middle-income countries: A systematic review and narrative synthesis.

Depression and anxiety pose a significant burden during adolescence, which may have consequences for adulthood and future generations. The mental health needs of children and adolescents in low- and middle-income countries are not adequately addressed due to a lack of availability and access to services, and limited intervention research in these contexts. Universal school-based interventions provide a unique and potentially scalable opportunity to prevent and address mental health concerns amongst children and adolescents in low- and middle-income countries. This systematic review aimed to identify and provide a narrative synthesis of universal school-based programmes delivered to children (aged 6-18 years) in low- and middle-income countries reporting on anxiety and/or depression outcomes. We searched Academic Search Premier, ERIC, PsycINFO, PubMed, Scopus, Web of Science, and ProQuest Dissertations using a pre-specified search strategy. Of the 12,478 articles identified, 12 studies met our inclusion criteria and were included in this review. The included studies report on a variety of interventions differing in approach, format and content. Given the small number of studies and concerns with study quality, we are unable to conclude that universal school-based interventions may reduce symptoms of anxiety and depression in children in low- and middle-income countries.

Cancer-related fatigue in teenage and young adult cancer patients: Clinicians' perspectives, practice and challenges.

OBJECTIVE: Cancer-related fatigue (CRF) is a common and distressing symptom experienced by teenage and young adult cancer patients (TYAs). This study aimed to explore clinicians' perspectives, practices and challenges in supporting TYAs with CRF. METHOD: Ten clinicians from a TYA multidisciplinary team (MDT) participated in semi-structured interviews which were thematically analysed. RESULTS: Clinicians perceived CRF as a common, but individual experience for TYAs and framed the broad impact of CRF in the context of TYAs' development. Clinicians' assessment and management of CRF for TYAs varied. Clinicians described a range of challenges affecting their practice in supporting TYAs with CRF, including limited knowledge, difficulties engaging TYAs, inadequate time in consultations and a lack of age-appropriate resources. CONCLUSIONS: Despite clinicians' good insight into TYAs' unique experiences of CRF, the assessment and management of CRF for TYAs are complicated by numerous challenges. The development of evidence-based interventions and guidelines, clear pathways of care, and TYA-friendly resources, measures and programmes, is vital to support clinicians, and TYAs, in managing CRF.

Parental experiences of adolescent cancer-related distress: A qualitative study.

OBJECTIVE: Adolescents' cancer-related distress is more complex, severe, and long-lasting than that of children and adults. Parents adopt an active role in supporting their adolescent, reporting that adolescent cancer-related distress is the most problematic symptom parents experience. Research has predominantly focused on exploring adolescents' experiences of cancer-related distress, with little attention to how their parents experience their adolescent's cancer-related distress. Therefore, we aimed to explore parents' experiences of distress within the context of parenting an adolescent with cancer-related distress during or immediately subsequent to active treatment. METHODS: A total of 21 semi-structured interviews were conducted face-to-face or via telephone, with parents of adolescents aged 12-18 years from south-west England. Inductive reflexive thematic analysis was used to analyse the data. RESULTS: Three themes were generated: "The contagion of distress", "Navigating breaking point" and "Developmental disruption". Parental distress transcended from adolescent cancer-related distress, eliciting uncertainty and challenging parenting limits. Parental distress was perpetuated by feelings that their adolescent had missed out on "normal" adolescence during and just after active treatment. CONCLUSION: Parental distress reflected the multi-faceted nature of their adolescent's cancer-related distress. Findings advocate the importance of providing a parental voice within adolescent oncology populations. Developing tailored interventions to address parental distress are suggested.

How common are depression and anxiety in adolescents with chronic fatigue syndrome (CFS) and how should we screen for these mental health co-morbidities? A clinical cohort study.

Adolescents with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) appear to be more likely to experience anxiety and/or depression using Patient Reported Outcome Measures (PROMs). However, we do not know how accurate these are at detecting problems in this patient group given the primary symptom of fatigue. We aimed to accurately determine the prevalence of anxiety/depression using gold-standard diagnostic interviews and evaluate the accuracy of PROMs measuring mood disorders in this patient group. We conducted a cross-sectional epidemiological study in a specialist tertiary paediatric CFS/ME service, England. The participants were164 12-18-year olds with clinician confirmed CFS/ME and their parents. The measures were a semi-structured diagnostic interview, the Kiddie Schedule for Affective Disorders and Schizophrenia, K-SADS, and questionnaires (Revised Children's Anxiety and Depression Scale, RCADS; Spence Children's Anxiety Scale, SCAS; Hospital Anxiety and Depression Scale, HADS). Parents completed the RCADS-P. 35% met the criteria for at least one common mental health problem. 20% had major depressive disorder, and 27% an anxiety disorder, with social anxiety and generalised anxiety being the most common. There was high co-morbidity, with 61% of those who were depressed also having at least one anxiety disorder. The questionnaires were moderately accurate (AUC > 0.7) at detecting clinically significant anxiety/depression, although only the RCADS-anxiety reached the predefined 0.8 sensitivity, 0.7 specificity target. Mental health problems are particularly common amongst adolescents with CFS/ME. Most screening tools were not sufficiently accurate in detecting clinically significant anxiety and depression, so these should be used with care in combination with thorough psychological/psychiatric assessment.

Review: How has cognitive behaviour therapy been adapted for adolescents with comorbid depression and chronic illness? A scoping review.

BACKGROUND: Depression becomes increasingly common in adolescence. Around 10%-20% of adolescents have a chronic illness, and they are more likely to experience depression. There is emerging evidence for cognitive behaviour therapy (CBT) interventions to treat depression in adolescents with chronic illnesses, yet no review has been undertaken of how these CBT interventions are delivered in practice. METHODS: We conducted a scoping review to summarise how CBT has been delivered in adolescents with chronic illness and depression. We included studies that evaluated CBT aimed at treating depression/depressive symptoms in adolescents with chronic illness. Searches were carried out across Embase and PsycNET. RESULTS: Twelve studies met our inclusion criteria. These included diabetes (n = 3), inflammatory bowel disease (n = 3), polycystic ovary syndrome (n = 2), chronic headache (n = 1), chronic pain (n = 1), chronic fatigue syndrome (n = 1) and Fanconi anaemia (n = 1). Adaptations made to the delivery of CBT included cognitive restructuring of illness-related thoughts, behavioural activation balancing illness-related and enjoyable activities, psychoeducation of the comorbidity and link between the chronic illness and depression, relationship building, skill building and parental or familial involvement. CBT was typically delivered by trained professionals with expertise in working with adolescents, who worked under supervision. CONCLUSIONS: CBT for depression is commonly adapted for this population, and the nature of cognitions and behaviours targeted in CBT may typically depend on how the chronic illness presents. There is relatively little evidence to date, and a need for more research into the efficacy and effectiveness of treatments for adolescent depression in this vulnerable population specifically.

The impact of COVID-19 on the cancer care of adolescents and young adults and their well-being: Results from an online survey conducted in the early stages of the pandemic.

BACKGROUND: Because of the global spread of coronavirus disease 2019 (COVID-19), oncology departments across the world have rapidly adapted their cancer care protocols to balance the risk of delaying cancer treatments and the risk of COVID-19 exposure. COVID-19 and associated changes may have an impact on the psychosocial functioning of patients with cancer and survivors. This study was designed to determine the impact of the COVID-19 pandemic on young people living with and beyond cancer. METHODS: In this cross-sectional study, 177 individuals, aged 18 to 39 years, were surveyed about the impact of COVID-19 on their cancer care and psychological well-being. Participants also reported their information needs with respect to COVID-19. Responses were summarized with a content analysis approach. RESULTS: This was the first study to examine the psychological functioning of young patients and survivors during the first weeks of the COVID-19 pandemic. A third of the respondents reported increased levels of psychological distress, and as many as 60% reported feeling more anxious than they did before COVID-19. More than half also wanted more information tailored to them as young patients with cancer. CONCLUSIONS: The COVID-19 pandemic is rapidly evolving and changing the landscape of cancer care. Young people living with cancer are a unique population and might be more vulnerable during this time in comparison with their healthy peers. There is a need to screen for psychological distress and attend to young people whose cancer care has been delayed. As the lockdown begins to ease, the guidelines about cancer care should be updated according to this population's needs.

Parental Experiences of Adolescent Cancer-Related Fatigue: A Qualitative Study.

OBJECTIVE: Cancer-related fatigue is common, disabling, and chronic, but professional help is not necessarily sought. Parents can support symptom management and facilitate help-seeking. This study explored parental experiences of their adolescent's cancer-related fatigue and what they do to help. METHODS: Qualitative semi-structured interviews were conducted with 21 parents of 17 adolescents aged 12-18 who were previously diagnosed with cancer. Reflexive thematic analysis was used to analyze the data. RESULTS: Three high-order themes were generated. Firstly, "fatigue is inevitable and unpredictable." This encompassed parental perceptions of fatigue as variable, distinct from normal tiredness, and linked to sleep and mood. Fatigue was seen as arising from cancer, which rendered parents helpless. Secondly, "fatigue is disruptive to normal life" beyond cancer treatment, which is contrary to expectations. Thirdly, parents managed fatigue by trying to balance the adolescent's desires for normality and their own perception of what is realistic with encouraging activities, and by seeking support from others. CONCLUSIONS: Parents see adolescent cancer-related fatigue as multi-faceted and experience it as unpredictable and attributed to cancer. They struggle to distinguish normal adolescent behavior from problematic fatigue, and to balance supporting and empowering the adolescent to live life to the fullest whilst also being realistic about the limitations imposed by fatigue and the benefits of activity. Parents try to manage fatigue practically but want more information about adolescent cancer-related fatigue to help establish their own and their adolescent's expectations.

Digital Behavior Change Interventions for Younger Children With Chronic Health Conditions: Systematic Review.

BACKGROUND: The prevalence of chronic health conditions in childhood is increasing, and behavioral interventions can support the management of these conditions. Compared with face-to-face treatment, the use of digital interventions may be more cost-effective, appealing, and accessible, but there has been inadequate attention to their use with younger populations (children aged 5-12 years). OBJECTIVE: This systematic review aims to (1) identify effective digital interventions, (2) report the characteristics of promising interventions, and (3) describe the user's experience of the digital intervention. METHODS: A total of 4 databases were searched (Excerpta Medica Database [EMBASE], PsycINFO, Medical Literature Analysis and Retrieval System Online [MEDLINE], and the Cochrane Library) between January 2014 and January 2019. The inclusion criteria for studies were as follows: (1) children aged between 5 and 12 years, (2) interventions for behavior change, (3) randomized controlled trials, (4) digital interventions, and (5) chronic health conditions. Two researchers independently double reviewed papers to assess eligibility, extract data, and assess quality. RESULTS: Searches run in the databases identified 2643 papers. We identified 17 eligible interventions. The most promising interventions (having a beneficial effect and low risk of bias) were 3 targeting overweight or obesity, using exergaming or social media, and 2 for anxiety, using web-based cognitive behavioral therapy (CBT). Characteristics of promising interventions included gaming features, therapist support, and parental involvement. Most were purely behavioral interventions (rather than CBT or third wave), typically using the behavior change techniques (BCTs) feedback and monitoring, shaping knowledge, repetition and substitution, and reward. Three papers included qualitative data on the user's experience. We developed the following themes: parental involvement, connection with a health professional is important for engagement, technological affordances and barriers, and child-centered design. CONCLUSIONS: Of the 17 eligible interventions, digital interventions for anxiety and overweight or obesity had the greatest promise. Using qualitative methods during digital intervention development and evaluation may lead to more meaningful, usable, feasible, and engaging interventions, especially for this underresearched younger population. The following characteristics could be considered when developing digital interventions for younger children: involvement of parents, gaming features, additional therapist support, behavioral (rather than cognitive) approaches, and particular BCTs (feedback and monitoring, shaping knowledge, repetition and substitution, and reward). This review suggests a model for improving the conceptualization and reporting of behavioral interventions involving children and parents.

Can linguistic analysis be used to identify whether adolescents with a chronic illness are depressed?

Comorbid depression is common in adolescents with chronic illness. We aimed to design and test a linguistic coding scheme for identifying depression in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), by exploring features of e-consultations within online cognitive behavioural therapy treatment. E-consultations of 16 adolescents (aged 11-17) receiving FITNET-NHS (Fatigue in teenagers on the interNET in the National Health Service) treatment in a national randomized controlled trial were examined. A theoretically driven linguistic coding scheme was developed and used to categorize comorbid depression in e-consultations using computerized content analysis. Linguistic coding scheme categorization was subsequently compared with classification of depression using the Revised Children's Anxiety and Depression Scale published cut-offs (t-scores ≥65, ≥70). Extra linguistic elements identified deductively and inductively were compared with self-reported depressive symptoms after unblinding. The linguistic coding scheme categorized three (19%) of our sample consistently with self-report assessment. Of all 12 identified linguistic features, differences in language use by categorization of self-report assessment were found for "past focus" words (mean rank frequencies: 1.50 for no depression, 5.50 for possible depression, and 10.70 for probable depression; p < .05) and "discrepancy" words (mean rank frequencies: 16.00 for no depression, 11.20 for possible depression, and 6.40 for probable depression; p < .05). The linguistic coding profile developed as a potential tool to support clinicians in identifying comorbid depression in e-consultations showed poor value in this sample of adolescents with CFS/ME. Some promising linguistic features were identified, warranting further research with larger samples.

Obstacles to recruitment in paediatric studies focusing on mental health in a physical health context: the experiences of clinical gatekeepers in an observational cohort study.

BACKGROUND: Studies in both paediatric and psychiatric settings often experience problems in recruitment. This can compromise the ability of the study to recruit to target, meaning studies are potentially underpowered. It can also result in a biased sample if a non-representative group are selectively recruited. Recruitment to studies in health contexts often depends on healthcare professionals, who act as gatekeepers by screening patients for eligibility and obtaining consent for the research team to contact them. The experience of health professionals as gatekeepers in paediatric studies is poorly understood and may affect whether recruitment is successful or not. METHODS: Six out of seven eligible healthcare professionals from a specialist paediatric chronic fatigue syndrome (CFS) team were interviewed. All participants were undertaking initial clinical assessments within which they were asked to identify eligible patients for an observational study of co-morbid mental health problems in adolescents with confirmed CFS/ME. This study had experienced particular recruitment problems, more so than other studies in the same service. Interview questions were designed to explore perceptions of research, and barriers and facilitators of recruitment. Interviews were audio recorded and transcribed verbatim. Thematic analysis was used. RESULTS: Participants espoused their commitment to the value of research. However, they perceived there to be a number of barriers to recruitment. Barriers within the clinical context included time pressures and the emotional nature of initial clinical assessments. Barriers posed by the wider research context included recruiting to multiple studies at the same time. Factors specific to the observational study of mental health in CFS/ME included aspects of the study design, such as the name and nature of the study, as well as the focus of the study itself. Participants made a number of recommendations about how recruitment barriers could be overcome. CONCLUSIONS: The current study highlights the need to carefully consider, at design stage, how to overcome potential barriers to recruitment. Gatekeepers should be actively involved at this stage to ensure that the study is set up in such a way to best enable recruitment activities within the clinical setting.

Correlates of Fatigue Among South African Adolescents Living with HIV and Receiving Antiretroviral Therapy.

Fatigue among adolescents living with HIV is poorly understood. In this study, we examined the relationships between fatigue and demographic and psychosocial variables to further the understanding of the symptom experience and associated factors. We recruited consecutive attenders at ART clinics in the Western Cape, South Africa (N = 134, age 11-18 years). Participants completed a battery of questionnaires including measures of fatigue, insomnia and mood disturbance. Just under a quarter (24.6%) of adolescents reported elevated levels of fatigue that affected their functioning. The linear combination of age, depression, and insomnia explained 40.6% of the variance in fatigue. Amongst adolescents with HIV, fatigue seems a problematic symptom associated with poor sleep and mood disturbance. Timely identification and management of these potentially disabling symptoms are needed to attain better health outcomes and retention in care in this group. Interventions aimed at ameliorating these symptoms are needed.

Depressive symptoms at age 9-13 and chronic disabling fatigue at age 16: A longitudinal study.

INTRODUCTION: We investigated whether depressive symptoms at ages 9-13 years were associated with chronic disabling fatigue (CDF) at age 16 among children in the Avon Longitudinal Study of Parents & Children (ALSPAC) birth cohort. METHODS: Depressive symptoms at ages 9, 10, 11, 12, and 13 years were defined as a child- or parent-completed Short Mood and Feelings Questionnaire (SMFQ) score ≥11 (range 0-26). SMFQ score was also analysed as a continuous exposure. Chronic disabling fatigue at 16 was defined as fatigue of ≥6 months' but <5 years' duration which prevented school attendance or activities, for which other causes were not identified, and with a Chalder Fatigue Questionnaire score ≥19. Logistic regression was used with multiple imputation to correct for missing data bias. We performed sensitivity analyses in which children who had CDF and depressive symptoms at age 16 were reclassified as not having CDF. RESULTS: In fully adjusted models using imputed data (N = 13,978), depressive symptoms at ages 9, 11, and 13 years were associated with 2- to 3-fold higher odds of CDF at age 16. Each one-point increase in SMFQ score at ages 9, 10, 11, 12, and 13 years was associated with 6-11% higher odds of CDF at age 16. Depressive symptoms and continuous SMFQ scores at each age were not associated with CDF if the outcome was reclassified to exclude children with comorbid depressive symptoms at age 16. CONCLUSIONS: Depressive symptoms at ages 9-13 were associated with chronic disabling fatigue at age 16, but causality is not certain.

Does fatigue and distress in a clinical cohort of adolescents with chronic fatigue syndrome correlate with fatigue and distress in their parents?

OBJECTIVES: Previous studies have found that parents of children with chronic fatigue syndrome (CFS) are more fatigued, and mothers are more distressed than healthy controls. Managing the disabling symptoms of CFS can result in disruption and burden for the family. Most research has focused on mothers. This study sought to further explore the associations between adolescent fatigue and distress and parental fatigue and distress, as well as family functioning, including both mothers and fathers. DESIGN: Cross-sectional study of a clinical cohort of consecutive attenders at a specialist chronic fatigue unit. METHODS: Questionnaires were completed by adolescents (N = 115, age 11-18) with a confirmed diagnosis of CFS and their mothers (N = 100) and fathers (N = 65). RESULTS: Maternal fatigue was significantly correlated with maternal distress, but not with adolescent fatigue, depression, anxiety, or functioning. This pattern held true for paternal fatigue. Maternal and paternal anxiety and depression were significantly correlated with family functioning. Paternal and maternal distress were correlated with each other. Mothers and fathers tended to have a consistent view of family functioning. Family functioning, specifically being overwhelmed by difficulties and scoring lower on strengths and adaptability, was positively associated with adolescent depression. Unexpectedly, higher levels of adolescent fatigue and poorer physical functioning were associated with better family functioning as rated by the mother. CONCLUSIONS: Parents of adolescents with fatigue scored near to or within normative range for non-clinical samples on distress, fatigue, and family functioning. Parental distress may contribute to or result from poorer family functioning. Family functioning, particularly building strengths and adaptability, may be clinically important in CFS, as well as attending to parental (particularly paternal) distress in families where adolescents are low in mood.