15 research outputs found

    Caregiver burden in paediatric chronic kidney disease

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    Section A provides an overview of the role of family caregivers of individuals with chronic illness, and describes key conceptualisations and theories posited in the caregiver literature. This is followed by an overview of research conducted with caregivers of children with chronic kidney disease (CKD), a summary of the limitations of this research, and suggestions for future research. Section B Despite a recognised need to monitor caregiver burden in caregivers of children with CKD, there is no measurement tool currently available to meet this aim. The present research documents the development of a measure of caregiver burden specific to family caregivers of children with CKD. Methods: Interviews were conducted with 16 caregivers of children with CKD and 10 healthcare professionals in order to generate measure items. A provisional version of the measure was developed and piloted with 18 caregivers of children with CKD and five healthcare professionals. Results: An initial pool of 97 items was generated from the content of interviews, which was reduced to 60 items following review for item redundancy. A piloting exercise provided preliminary evidence for the usability, readability, and relevance of measure items; adaptations further to piloting resulted in the 51-item ‘Paediatric Renal Caregiver Burden Scale’ (PR-CBS). Conclusions: It is hoped that the PR-CBS will serve to identify areas of need amongst caregivers of children with CKD, and in turn improve outcomes for this caregiver population and children with CKD. Section C is a critical appraisal of the conducted research study, and includes an overview of research abilities acquired during its completion, reflections on how the research may have been conducted differently, implications for future clinical practice, and ideas for future research.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

    Profiling patient attitudes to phosphate binding medication: A route to personalising treatment and adherence support

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    © 2014 Taylor & Francis.Results: Low adherence to PBM was predicted by reduced beliefs in personal need for PBM (OR =.34; 95% CI:.14–.83;

    Radically open dialectical behaviour therapy adapted for adolescents:a case series

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    BACKGROUND: Overcontrol is a transdiagnostic cluster of traits associated with excessive psychological, behavioural and social inhibitory control. It is associated with psychiatric diagnoses of depression, restrictive eating disorders and/or obsessive-compulsive personality disorder. Radically Open Dialectical Behaviour Therapy is a transdiagnostic treatment for maladaptive overcontrol. This case series evaluates an adolescent adaption (RO-A) for a transdiagnostic group of adolescents identified as overcontrolled. METHODS: Twenty-eight adolescents were consecutively referred for RO-A from two different National and Specialist Child and Adolescent Mental Health Services between June 2017 and February 2020. Baseline self-report measures assessed overcontrol characteristics, relationship and attachment quality and mental health symptoms of depression and eating disorders, which were repeated at discharge. RESULTS: Adolescents in this case series reported high rates of depression (78.6%), self-harm (64.3%) and eating disorders (78.6%). Most (85.7%) had two or more mental health diagnoses and all had previous mental health treatments before starting RO-A. The mean number of RO-A sessions attended was 18 group-based skills classes and 21 individual sessions over a mean period of 34 weeks. Significant improvements with medium and large effect sizes were reported in cognitive flexibility (d = 1.63), risk aversion (d = 1.17), increased reward processing (d = .79) and reduced suppression of emotional expression (d = .72). Adolescents also reported feeling less socially withdrawn (d = .97), more connected to others (d = 1.03), as well as more confident (d = 1.10) and comfortable (d = .85) in attachment relationships. Symptoms of depression (d = .71), eating disorders (d = 1.06) and rates of self-harm (V = .39) also significantly improved. Exploratory correlation analyses suggest improvements in overcontrol are moderately to strongly correlated with improvements in symptoms of depression and eating disorders. CONCLUSIONS: This case series provides preliminary data that RO-A may be an effective new treatment for adolescents with overcontrol and moderate to severe mental health disorders like depression and eating disorders. RO-A led to improved management of overcontrol, improved relationship quality and reduced mental health symptoms. Further evaluation is indicated by this case series, particularly for underweight young people with eating disorders. More rigorous testing of the model is required as conclusions are only tentative due to the small sample size and methodological limitations

    Adolescent experience of radically open dialectical behaviour therapy: a qualitative study

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    Abstract Background Radically Open Dialectical Behaviour Therapy (RO DBT) is a novel transdiagnostic treatment that targets ‘maladaptive overcontrol’; a transdiagnostic cluster of traits associated with excessive emotional and behavioural inhibitory control. Outcomes are promising for adults with a range of psychiatric disorders. No study to date has explored the adolescent experience of RO DBT. Methods Of the 25 eligible adolescents who received RO DBT between March 2015 and April 2017, 15 (14–17 years) consented and completed a semi-structured interview about their experience of treatment within 1 month of discharge. Interviews were recorded and then transcribed manually. Free text responses were analysed using reflexive thematic analysis. Results The majority (n = 13) had a primary diagnosis of anorexia nervosa, although comorbidity was the norm, with 80.0% having two or more predicted comorbid psychiatric diagnoses. All had received some prior psychological treatment. Four themes were identified from analysis of transcripts: 1) Broadening Horizons, 2) Building Connections, 3) Flexibility, 4) Information Overload. Generally, RO DBT was perceived as helpful in both content and process. The focus on social and broader well-being, rather than specific mental health symptoms, was considered beneficial by many. Adolescents appreciated the group-based format of skills classes and reported benefiting from learning and practicing skills each week. The fourth theme, Information Overload, highlighted that for some, the amount of content felt overwhelming and that it was hard to remember and digest all the information, suggesting that adaptations, or simplifications, may be required to ensure accessibility for adolescents. Conclusions RO DBT is perceived as a relevant and beneficial new treatment for adolescents with maladaptive overcontrol. The broad treatment focus is perceived as unique and of particular benefit. It is reported to help with general and social functioning and foster cognitive and behavioural flexibility. Nevertheless, the amount and complexity of material was felt to be very large by some and may suggest the need for modified adolescent-specific materials

    Summary Data for Included Studies.

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    <p><i>Note.</i> NZ = New Zealand; IRE = Ireland; NTL = Netherlands; CAN = Canada; FRA = France; SWE = Sweden; IRN = Iran; SWZ = Switzerland; ESP = Spain; DMK = Denmark; EGT = Egypt; SGP = Singapore; JPN = Japan; EST = Estonia; GMY = Germany; AUS = Australia; IBD = inflammatory bowel disorder; TIA = Transient Ischemic Attack; MARS is the Medication Adherence Rating Scale from Thompson, Kulkarni, & Sergejew (2000); MEMS is Medication Event Monitoring System; CQ-R is the Compliance Questionnaire-Rheumatology from de Klerk, van der Heijde, Landewé, van der Tempel, & van der Linden (2003); MMAS is the Morisky Medication Adherence Scale from Morisky, Green, & Levine (1986); TxEQ is the Transplant Effects Questionnaire from Ziegelmann et al. (2002); ACTG is the Adherence to Combination Therapy Guide from Chesney et al., 2000; RAM is the Reported Adherence to Medication Scale from Horne et al., (1999), renamed MARS (Medication Adherence Report Scale); VAS = visual analogue scale.</p>a<p>Adherence result selected for use in meta-analysis;</p>b<p>Adherence measure dichotomised into adherent and nonadherent groups;</p>c<p>Relationship between adherence measure and BMQ scales not reported.</p

    Analyses Stratified by Adherence Measure.

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    <p><i>Note</i>. CQ-R = Compliance Questionnaire- Rheumatology from de Klerk, van der Heijde, Landewé, van der Tempel, & van der Linden (2003), MARS = Medication Adherence Report Scale Scale from Horne et al., (1999), MASRI = Medication Adherence Self-Report Index from Walsh et al., 2002, MMAS = Morisky Medication Adherence Scale from Morisky, Green, & Levine (1986).</p
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