Understanding the support needs of parents of children with obsessive-compulsive disorder: a qualitative descriptive study in the UK.

INTRODUCTION: Caring for a child with obsessive-compulsive disorder (OCD) can be extremely difficult, yet evidence-based support strategies for parents/carers are limited. A detailed understanding of parent support needs is an important first step in intervention development and qualitative research with this focus is currently lacking. In this study, the viewpoints of parents and professionals were used to understand support needs and preferences when caring for a child with OCD. This qualitative descriptive study formed part of a wider UK-based project aimed at developing better support for parents of children with OCD. METHOD: Individual semi-structured interviews (and an optional one-week journal) with a purposive sample of parents of children and young people (CYP) with OCD, aged 8-18, and focus groups (or individual interviews where preferred) with a purposive sample of professionals supporting CYP with OCD. Data comprised transcripts of audio-recorded interviews and focus groups, and text from journals. Analysis was informed by the Framework approach involving inductive and deductive coding, supported by NVivo 12.0 software. Co-production methods were adopted throughout the research process, including the involvement of a parent co-researcher and charity collaborators. RESULTS: Interviews were undertaken with 20 parents, of which 16 completed a journal. Twenty-five professionals took part in a focus group or interview. Five key themes relating to parent support challenges and support needs/preferences were identified (1) Coping with the impact of OCD; (2) Getting help for my child; (3) Understanding parents' role; (4) Making sense of OCD; (5) Joined-up care. CONCLUSION: Parents caring for children with OCD have clear caregiver support needs which are currently not being met. Through triangulation of parent and professional accounts, this study has identified parent support challenges (e.g., emotional impact of OCD, visibility of caring role, misunderstanding about OCD) and support needs/ preferences (e.g., headspace/respite, compassion/sensitivity, guidance on accommodation) to lay the vital foundations for the development of effective parent support interventions. There is now an urgent need to develop and test an intervention to support parents in their caregiving role, with the aim of preventing and/or reducing their levels of burden and distress and ultimately, improving their quality of life.

Using routine outcome measures as clinical process tools: Maximising the therapeutic yield in the IAPT programme when working remotely.

OBJECTIVES: The objective of the study was to investigate the administration and use of routine outcome monitoring session by session in the context of improving guided-self-help interventions when delivered remotely at Step 2 care in the English Improving Access to Psychological Therapies (IAPT) services. DESIGN: Qualitative research using recordings of telephone-treatment sessions. METHOD: Participants (11 patients and 11 practitioners) were recruited from four nationally funded IAPT services and one-third sector organisation commissioned to deliver Step 2 IAPT services, in England. Data collection took place prior to the COVID-19 pandemic. Transcripts of telephone-treatment sessions were analysed using thematic analysis. RESULTS: Four themes were identified: (1) lack of consistency in the administration of outcome measures (e.g. inconsistent wording); (2) outcome measures administered as a stand-alone inflexible task (e.g. mechanical administration); (3) outcome measures as impersonal numbers (e.g. summarising, categorising and comparing total scores); and (4) missed opportunities to use outcome measures therapeutically (e.g. lack of therapeutic use of item and total scores). CONCLUSIONS: The administration of outcome measures needs to ensure validity and reliability. Therapeutic yield from session-by-session outcome measures could be enhanced by focusing on three main areas: (1) adopting a collaborative conversational approach, (2) maximising the use of total and items scores and (3) integrating outcome measures with in-session treatment decisions. Shifting the perception of outcome measures as impersonal numbers to being process clinical tools ensures a personalised delivery of psychological interventions and has the potential to enhance engagement from practitioners and patients what may reduce drop-out rates and improve clinical outcomes.