Victoria Edwards - Thesis submitted in partial fulfilment of the degree of Doctor of Clinical Psychology (DClinPsych)
Keywords: hoarding
obsessive compulsive disorder
chronic pelvic pain syndrome

Critical Review of the Literature
Background: Chronic pelvic pain syndrome (CPPS) is a common condition that can reduce quality of life. To explore the psychosocial impact of CPPS, this review provided an up-to-date synthesis and assessment of qualitative papers. The review aimed to i) synthesise results from recent qualitative studies to identify themes regarding the lived experience and psychosocial impact of CPPS; ii) analyse the quality of the synthesised papers; iii) consider implications for clinical practice and research.
Method: The electronic databases Medline, Embase, PsycInfo, CINAHL, Web of Science, and Scopus were searched in June 2021 and updated in April 2022. Inclusion criteria consisted of qualitative results published in English from 2014 onwards in peer-reviewed journals that explored the psychosocial impact of urological and gynaecological CPPS in adults. Risk of bias was assessed using the CASP Qualitative Studies Checklist. A thematic approach described by Thomas and Harden (2008) was used for the meta-synthesis.
Results: Thirty-seven papers were identified; all were rated as medium or high quality. Greater reporting around participants’ demographics and researchers’ reflexive accounts would strengthen the evidence base. Only one paper with male participants was found, thus synthesis focused on women’s experiences from 36 papers describing 34 datasets. Themes included: dominance of CPPS (impacting multiple aspects of life, disrupting life trajectories, unpredictability of symptoms); lack of understanding (lack of CPPS awareness, stigma); isolation (reduced social life, impact on sex and intimate relationships); negative sense of self (lost identity, self-blame) and psychosocial strategies (unhelpful and helpful). There were relatively consistent experiences across different CPPS subtypes and initial insights into differences depending on age, sexuality, and culture.
Conclusions: CPPS can have a significant impact on multiple life domains, supporting research on the significant impact of chronic pain conditions on quality of life. CPPS can be exacerbated by a lack of understanding (individual and societal), and misunderstanding. Stigma concerning pain associated with menstruation, genitalia, sex, and infertility can lead to isolation, shame, guilt, disrupted sense of identity, and reduced self-worth. Further research is required to facilitate the safe disclosure of ‘embarrassing’ symptoms, the potential underreporting of difficulties with incontinence and toileting, and the experiences of men and LGBTQ+ individuals. Multidisciplinary services, long-term management plans, access to peer support and psychological strategies are recommended. Overall, this paper highlights the significant psychosocial impact of CPPS and the need for greater awareness, education, and support to enable individuals to manage its multifaceted complexities.
Service Improvement Project
Background: Chronic pelvic pain syndrome (CPPS) can reduce quality of life and increase healthcare utilisation. The John Radcliffe Hospital Gynaecology Department can find supporting CPPS patients particularly challenging due to prolonged and repeated admissions and limited treatment options. Patients have made formal complaints when discharged without medical treatments and staff can be unsure how to best provide care. This project aimed to gain a greater understanding of these challenges and generate user-informed service recommendations.
Method: Two staff focus groups were conducted using opportune sampling. Patients were interviewed individually if they were 18 years and above, had been an inpatient within the past three years, remained under the department and were able to provide informed consent. Exclusion criteria included pregnancy, upcoming or ongoing surgery or safeguarding concerns. Staff and patient data were gathered using semi-structured interviews and analysed separately using inductive thematic analysis.
Results: Eleven nurses formed the staff focus groups. Themes included a) difficulties understanding chronic pain, b) working with a condition with no clear fix and c) what helps the service respond well. Nineteen patients were sent information packs with eight interviewed (42% response rate). Themes included a) never knowing what is going to happen, b) feeling medically safe, and c) being sent home unequipped.
Conclusions: Staff and patients described uncertainties about how to understand and manage pain and the nature and purpose of admissions. Some differences in how staff and patients conceptualised admissions are noted. This study supports and builds upon research into invalidating discourses around ‘women’s problems’ and ‘hidden’ chronic pain conditions and highlights the need for collaborative, multidisciplinary approaches. Key recommendations include staff training about CPPS, facilitating conversations with patients to provide holistic care, reducing uncertainties, and re-framing admissions as support through a crisis rather than a ‘fix’.
Theoretically Driven Research Paper
Background: Unmet interpersonal needs may play a role in excessive emotional attachments to objects for people with hoarding difficulties (HD). Evidence of attachment difficulties stemming from childhood have been noted in HD and may be reflected in the extent of social networks. Previous research indicates that attachment difficulties may not be specific to HD but there are preliminary indications that the extent of social support may be specific.
Aims: To evaluate social networks and support in HD relative to clinical controls with obsessive compulsive disorder (OCD) and healthy controls (HC). The secondary aim was to explore the extent of loneliness and thwarted belongingness. Potential mechanisms for deficits in social support were also examined. Method: A cross-sectional between-groups design was used to compare scores on measures in those with HD (n = 37); OCD (n = 31); and HCs (n = 45).
Results: Whilst individuals with HD and OCD both report smaller social networks than HC, lower levels of social support appear to be specific to HD. The HD group also showed higher levels of loneliness and thwarted belonging compared to OCD and HC. No differences were found between groups for perceived criticism or trauma.
Conclusions: These results support the previous finding of lower levels of self-reported social support within HD. Loneliness and thwarted belongingness also appear significantly elevated within HD compared with OCD and HC. Further research is required to explore the nature of felt support and belonging, direction of effect and to identify potential mechanisms. Clinical implications include the importance of advocating and promoting support systems for individuals with HD and consideration of the role of personal supporters and professionals with healthcare, social care, and charitable sectors.