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23 result(s) for "Satherley, Rose-Marie"
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Fraudulent participants in qualitative child health research: identifying and reducing bot activity
Said participants have attempted to bypass screening measures designed to prevent such activity (eg, asking specific questions to check for genuine, consistent responses; a known method of detecting fraudulent participants or ‘bots’). Financial incentives can increase the rate of response from participants3 but may also motivate ineligible participants to deceive about their eligibility for study enrolment to secure payment.4 To mitigate the risk of fraudulent activity, we recommend that any financial incentives are omitted from advertisements shared on social media.Table 1 Red flag Example Prestudy communications with research team Emails/contact from potential participants which do not include a preamble. The effectiveness of incentives for research participation: a systematic review and meta-analysis of randomized controlled trials.
Implementation of the children and young people’s health partnership model of paediatric integrated care: a mixed-methods process evaluation
ObjectiveA process evaluation of the Children and Young People’s Health Partnership (CYPHP) model of integrated care for the interpretation of trial findings and building evidence on the implementation of integrated care for children.DesignA mixed-methods process evaluation.SettingCYPHP was implemented at scale across two inner-city London boroughs in South London, England, as a pragmatic cluster-randomised controlled trial involving nearly 98 000 children, with a nested process evaluation.ParticipantsLinked data were available from 73 000 participants. Qualitative data collection was through 102 interviews (group and 1:1) and observations.InterventionsLocal child health clinics delivered by paediatricians and general practitioners and a nurse-led early intervention service for children with tracer conditions (asthma, eczema and constipation), decision support, a primary care hotline, self-management support and health promotion.Main outcome measuresFive domains of the RE-AIM implementation framework: Reach, Effectiveness, Adoption, Implementation and Maintenance.ResultsImplementation varied depending on resource availability, competing priorities and natural changes over time. Successful implementation drivers included cohesive interprofessional and partnership collaboration.ConclusionsIntegrated care for children can be implemented at scale, but variability, particularly low reach, may limit measurable impact at the population level. Significant health system strengthening, implementation plasticity and contextual tailoring are crucial for ensuring the efficacy and sustainability of impactful integrated care for children.Trial registration number NCT03461848.
Integrated health Services for Children: a qualitative study of family perspectives
Background There is increasing evidence that integrated care improves child related quality of life and reduces health service use. However, there is limited evidence on family perspectives about the quality of integrated care for children’s services. This study aimed to understand children, young people, and caregivers’ perceptions of a new integrated care service, and to identify essential components of integrated care for children and young people with ongoing conditions. Methods A qualitative analysis of in-depth interviews with caregivers and children included families ( N  = 37) with children with one of four ongoing conditions (asthma, eczema, epilepsy, constipation) who had experienced a new integrated care service delivered in South London, UK. Results Four key components of integrated services identified were: that the key health-worker understood the health needs of the family in context; that professionals involved children and caregivers in treatment; that holistic care that supported the family unit was provided; and that families experienced coordination across health, social, and education systems. Conclusions Children and families identify care navigation and a holistic approach as key components that make high quality integrated care services. Service developments strengthening these aspects will align well with family perspectives on what works and what matters.
Changing contexts of child health: an assessment of unmet physical, psychological and social needs of children with common chronic childhood illness
BackgroundWe assessed the biopsychosocial needs and key health drivers among children living with a common chronic illness, as baseline for a cluster randomised controlled trial of a child health system strengthening intervention.MethodsCross-sectional data were analysed from a large population sample of children from South London with asthma, eczema or constipation, as exemplar tracer conditions of a new integrated care service. Descriptive and regression analyses, accounting for sociodemographic factors, investigated social needs, psychosocial outcomes and quality of life associated with poor symptom control.ResultsAmong 7779 children, 4371 children (56%) had at least one uncontrolled physical health condition. Across the three domains of physical health, mental health and social needs, 77.5% of children (n=4304 of 5554) aged 4–15 years had at least one unmet need, while 16.3% of children had three unmet needs. Children from the most socioeconomically disadvantaged quintile had a 20% increased risk of at least one poorly controlled physical condition (risk ratio (RR)=1.20, 95% CI: 1.11 to 1.31, p<0.001) compared with those from the least disadvantaged quintile. There was an 85% increased risk of clinically important mental health needs among children with uncontrolled asthma (RR=1.85, 95% CI: 1.65 to 2.07, p<0.001), 57% for active constipation (RR=1.57, 95% CI: 1.12 to 2.20, p<0.01) and 39% for uncontrolled eczema (RR=1.39, 95% CI: 1.24 to 1.56, p<0.001). Health-related quality of life was associated with poor symptom control.ConclusionsThere is a large burden of unmet biopsychosocial needs among children with chronic illness, signalling an urgent need for prevention, early intervention and integrated biopsychosocial care.
Celiac disease symptom profiles and their relationship to gluten-free diet adherence, mental health, and quality of life
Background A subgroup of adults with celiac disease experience persistent gastrointestinal and extraintestinal symptoms, which vary between individuals and the cause(s) for which are often unclear. Methods The present observational study sought to elucidate patterns of persistent symptoms and the relationship between those patterns and gluten-free diet adherence, psychiatric symptoms, and various aspects of quality of life (QOL) in an online sample of adults with celiac disease. U.S. adults with self-reported, biopsy-confirmed celiac disease ( N  = 523; M age = 40.3 years; 88% women; 93.5% White) voluntarily completed questionnaires as part of the iCureCeliac® research network: (a) Celiac Symptoms Index (CSI) for physical symptoms and subjective health; (b) Celiac Dietary Adherence Test for gluten-free diet adherence; (c) PROMIS-29, SF-36, and Celiac Disease Quality of Life Survey for psychiatric symptoms and QOL. Symptom profiles were derived using latent profile analysis and profile differences were examined using auxiliary analyses. Results Latent profile analysis of CSI items determined a four-profile solution fit best. Profiles were characterized by: (1) little to no symptoms and excellent subjective health (37% of sample); (2) infrequent symptoms and good subjective health (33%); (3) occasional symptoms and fair to poor subjective health (24%); (4) frequent to constant symptoms and fair to poor subjective health (6%). Profiles 2 and 3 reported moderate overall symptomology though Profile 2 reported relatively greater extraintestinal symptoms and Profile 3 reported relatively greater gastrointestinal symptoms, physical pain, and worse subjective health. Profiles differed on anxiety and depression symptoms, limitations due to physical and emotional health, social functioning, and sleep, but not clinical characteristics, gluten-free diet adherence, or QOL. Despite Profile 3’s moderate symptom burden and low subjective health as reported on the CSI, Profile 3 reported the lowest psychiatric symptoms and highest quality of life on standardized measures. Conclusions Adults with celiac disease reported variable patterns of persistent symptoms, symptom severity, and subjective health. Lack of profile differences in gluten-free diet adherence suggests that adjunctive dietary or medical assessment and intervention may be warranted. Lower persistent symptom burden did not necessarily translate to better mental health and QOL, suggesting that behavioral intervention may be helpful even for those with lower celiac symptom burden.
“No one was coming to save us”: an interpretative phenomenological analysis exploring the experience of parents supporting their autistic daughter through anorexia nervosa
Background Caring for someone with anorexia nervosa is associated with high levels of carer burden and burnout, however, there is a lack of research into caring for individuals who have anorexia nervosa and are also autistic, despite high levels of co-occurrence. This study aimed to offer an in-depth exploration of experiences for this group of caregivers. Methods Semi-structured interviews were conducted with six parents with an autistic daughter who had experienced anorexia nervosa. Data was analysed using Interpretative Phenomenological Analysis which enabled in-depth exploration of carers’ lived experience. Results Three themes and seven sub-themes were identified. These explored the experience of eating disorders services as largely unprepared to work with dual diagnosis; the impact of their daughter being autistic on carers’ experience of anorexia nervosa treatment and recovery, with variation depending on several factors; the journey of parenting through anorexia nervosa, and changes to parenting as a result. Conclusions This adds to our understanding of the lived experience of this group of carers, highlighting a need for early detection of autism spectrum conditions, enhanced staff understanding of autism spectrum conditions, tailored treatment, and specific carer support for this group. Plain language summary Parents of a young person who is autistic and also has anorexia nervosa face unique challenges because of the needs that come with both conditions. The study looked at the experience of parents supporting their autistic child through Anorexia Nervosa. Parents told us that eating disorders services did not feel prepared to meet their child’s needs. In response to this, many felt that they had to change or even stop treatments because they didn’t work well for their child. Parents also spoke about the impact this had on their own wellbeing and their family. They described how they often had to step into unexpected roles, such as advocating for their child with professionals. The findings suggest that treatment for anorexia nervosa may be more helpful if it included adaptations for autistic people, and that providing support for carers could make a big difference for both parents and their children.
How acceptable do parents experiencing mental health challenges find e-Health interventions for mental health in the postnatal period: a systematic review
Poor mental health in the postnatal period is experienced by high numbers of parents, with a high associated cost to society, however accessing therapeutic support during this time is complicated by parenting commitments. This has been further compounded by the covid-19 pandemic, where access to traditional therapy has been impacted. A lack of access to support for poor mental health in this period can have long term impacts on both the parents and their child. E-Health provides a potential solution to parents accessing support during this period by providing a convenient and flexible intervention which overcomes the barriers of traditional face-to-face therapy. However, without investigating the acceptability of such support for parents, it is not possible to predict uptake and consequent effectiveness. The current review synthesizes data available on acceptability of e-Health interventions in the post-natal period, finding that parents valued e-Health interventions however considerations must be made to certain, key areas impacting the acceptability of these interventions for parents. An element of therapist support and individualised content was preferred, along with a smooth user experience. Parents valued that e-Health fit into their routines and provided anonymity in their interactions. Further research needs to be completed into acceptability for minority social and ethnic groups where access and preference may differ.
An interpretative phenomenological analysis of the experience of couples’ recovery from the psychological symptoms of trauma following traumatic childbirth
Globally, a large proportion of birthing mothers, and a to a lesser extent their partners, experience birth trauma each year, and yet access to adequate post-natal trauma support is rarely available. Untreated birth trauma has been shown to negatively impact the family in terms of the parents’ relationship with one another, and long-term negative consequences for the child. Despite a drive towards integrating mental health support into maternity services and a call to provide mental health support for couples rather than solely the birthing mother, there is little research exploring what birthing couples find helpful in recovery from birth trauma. The current research interviewed six couples using an Interpretative Phenomenological Approach in order to explore their understanding of what supported their recovery from birth trauma. Four themes were identified: ‘We need validation’, ‘Feeling paper thin’, ‘This is a system failure’ and ‘Birth trauma is always going to be a part of you’. The data describes an understanding of parents’ feelings of vulnerability and loss of trust in services to provide support following birth trauma. Further, parents’ need for validation and repositioning of control away from healthcare professionals when considering the availability and knowledge of the support options available is discussed. Clinical implications for supporting parents following birth trauma are explored, including an identified need for trauma informed care communication training for all healthcare professionals involved in maternity care, and the requirement for sources of therapeutic support external from the parent dyad in order to maintain the couples’ interpersonal relationship.
The Effectiveness of Psychological Interventions for Families of Children With Type 1 Diabetes on Caregiver and Child Functioning: A Systematic Review and Meta‐Analysis
Background Research suggests that the wellbeing of caregivers of children with Type 1 Diabetes can influence child health outcomes. Therefore, the aim was to conduct a systematic review and meta‐analysis to estimate the effect of psychological interventions for families of children with Type 1 Diabetes on caregiver and child functioning. Methods A systematic search of the literature identified 58 randomized controlled trials (RCTs) that met inclusion. Study quality was assessed using the Cochrane Risk‐of‐Bias Tool. Results Fifty‐one trials had sufficient data to be included in the meta‐analysis, analyzing nine variables (caregiver and child psychological distress, diabetes distress, family conflict and child quality of life (QoL), diabetes QoL and blood glucose) over three timepoints (post‐intervention, short‐term and long‐term follow‐up). Results from 10 (n = 550), three (n = 347) and 16 RCTs (n = 1631) respectively indicated that psychological interventions significantly reduced caregiver psychological distress post‐intervention (SMD = −0.64, 95% CI = −1.15, −0.12), child psychological distress post‐intervention (SMD = −0.34, 95% CI = −0.55, −0.31) and child blood glucose at short‐term follow‐up (SMD = −0.11, 95% CI = −0.21, −0.01), relative to controls. Conclusions Participants allocated to controls showed greater reductions in caregiver diabetes family conflict at short‐and long‐term follow−up than those assigned to psychological interventions. This was explained by significant baseline differences influencing a small number of studies. Studies were highly heterogenous regarding outcome measures, follow‐ups, and interventions, with high concerns of bias often observed, reflecting the complexity of real−world clinical practice. Findings are promising. Appropriately powered RCTs with robust randomization are recommended to investigate the significance of effects, whilst considering dose response. The systematic review and meta‐analysis of psychological interventions for families of children with Type 1 Diabetes on caregiver and child functioning found psychological interventions significantly reduced parent and child psychological distress post‐intervention and improved child blood glucose at short‐term follow‐up, relative to controls.
Development and Validation of the Coeliac Disease Food Attitudes and Behaviours Scale
Objectives. Previous studies on coeliac disease suggest that attitudes towards the gluten-free diet may contribute to the development of disordered eating. This study describes the development and validation of the Coeliac Disease Food Attitudes and Behaviours scale (CD-FAB) to measure these behaviours in coeliac disease. Research Methods and Procedures. Focus groups were used to develop 33 potential questionnaire items. These items were reviewed by service users and then distributed online to 157 adults with coeliac disease. Items were removed based on ceiling/floor effects, high interitem correlations (>0.7) and factor analysis. 11 items were retained. Exploratory factor analysis was then conducted. The psychometric properties of the final version of the CD-FAB were assessed via using an online platform. Results. The CD-FAB had 11 items distributed across one factor assessing attitudes and behaviours towards food. These factors explained 44.1% of the variance in responding. The CD-FAB and its subscales had high internal consistency (Cronbach’s alpha > 0.7) and psychometric validation indicated good convergent and discriminant validity. High scores on the CD-FAB are associated with psychological distress and an impaired quality of life. Conclusions. The CD-FAB is a reliable and valid measure of food attitudes and behaviours in coeliac disease. As a new disease-specific instrument, it may be a useful tool for evaluating food concerns in individuals with coeliac disease in a clinical setting and for further exploring the development of disordered eating patterns in coeliac disease. Further research is required to assess the full potential of the CD-FAB.