Children with long-term physical health conditions (pLTCs) are at increased risk of developing mental health comorbidities, although most do not access services for their mental health. No previous studies have examined the determinants of contact with services for mental health concerns among this group of children. This 3-year longitudinal study involved a population-based sample of children aged 5–16 years from the British Child and Adolescent Mental Health Surveys conducted in 1999 and 2004. In children with comorbid pLTCs and mental health disorders at baseline (N = 397), we examined associations between several child-, family- and service-related factors and (a) contact with primary health care, (b) contact with paediatrics and (c) contact with child and adolescent mental health services over 3-year follow-up (2002 and 2007). Separate multivariable binary logistic regressions were conducted for each service. The impact of mental health difficulties on the child and contact with the teacher predicted contact with all three services. Adolescent age, female gender, larger family size, some or marked academic difficulties, and having parents with educational qualification(s) were specific predictors of contact with primary health care. Male gender, stressful life events, and contact with primary health care were specific predictors of contact with child and adolescent mental health services. No other factors predicted contact with paediatrics. Our findings highlight the role of child-, family-, and service-related factors in accessing mental health care in children with comorbid pLTCs and mental health disorders which could inform planning and provision of services to reduce unmet mental health needs.
BACKGROUND Incidence of stroke in children is low and pediatric stroke rehabilitation services are less developed than adult ones. Young stroke survivors may suffer from long-term impairments and encounter barriers to recovery, as they have a long post-stroke life expectancy. However, there are relatively few studies characterising these impairments, and what factors facilitate or counteract recovery. OBJECTIVE To identify short-term and long-term factors that impact recovery from pediatric stroke. METHODS This qualitative thematic analysis is based on posts from a population of participants from a UK-based online stroke community, active between 2004-2011. The analysis focused on users who talked about experiences of pediatric stroke, identified by a previous study. The posts were read by three authors and factors influencing recovery from pediatric stroke mapped into four areas: medical, physical, emotional and social, according to the framework proposed by the UK Clinical Guidelines for Stroke in Childhood, using a data driven approach. Factors influencing recovery were divided into short term and long term. RESULTS There were 425 posts relating to 52 paediatric stroke survivors. Some stroke survivors posted for themselves whilst others were talked about by a third party (mostly parents, 31/35 mothers). 41 stroke survivors were ≤18 years old and 11 were >18 years old at the time of posting. Medical factors included co-morbidities as a barrier to recovery. Exercise, particularly swimming, was reported to be beneficial in stroke recovery. Speech and language therapy and physiotherapy were also deemed useful, despite the current lack of evidence of their effectiveness in paediatric stroke. Among physical factors, fatigue and chronic pain could persist decades post-stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion and dizziness. In terms of emotional factors, fear and uncertainty surrounding the future was a short term barrier, while positivity was cited as a major facilitator in recovery both short and long term. Playing and listening to music were facilitators to recovery. Social restrictions (i.e. keeping children at home) were associated with negative emotional effects. Grief and behavioral problems also hindered recovery. Social barriers were loneliness, exclusion, anxiety-triggering events and hidden disabilities not acknowledged by third-parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances and difficulties in obtaining travel insurance and driving licenses impacted recovery. CONCLUSIONS The lived experience of survivors of pediatric stroke includes long term hidden disabilities and barriers to rehabilitation. These present in different settings such as healthcare, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them. CLINICALTRIAL n/a
BACKGROUND Pediatric stroke is relatively rare, under researched and there is little awareness of its occurrence in wider society. There is a paucity of literature on effectiveness of interventions to improve rehabilitation and services available to survivors. Access to online health communities through the internet may be a means of support for pediatric stroke patients and their families during recovery, however little research has been done in this area. OBJECTIVE To identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS Qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004-2011. The population was split into two groups, based upon whether stroke survivors were 18 and under ( 18y) or over 18 (>18y) at the time of posting. The posts were read by two authors who used the adapted Social Support Behaviour Code to analyze the types of social support exchanged. RESULTS 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. 41 survivors were 18y at the time of posting and written about by others (31/35 mothers), while 11 were >18y and writing about themselves. Survivors and their familes joined together in discussion threads . Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least one instance of social support. All five types of social support were identified: informational, emotional, network, esteem support and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants 18y at the time of posting, this finding was reversed in the >18y group. Network support and esteem support were less commonly exchanged. Notably, no access support (a sub-category of network support) was exchanged on the community. Tangible aid was the least commonly type of support offered. CONCLUSIONS We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities. CLINICALTRIAL n/a
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