The role of patient support groups in adapting to life with an Implantable Cardioverter Defibrillator

Sanders, Katie Hannah (2023) The role of patient support groups in adapting to life with an Implantable Cardioverter Defibrillator. Doctoral thesis (DClinSci), Manchester Metropolitan University.

Preview

Available under License Creative Commons Attribution Non-commercial No Derivatives. Download (3MB) | Preview

Abstract

Background: Patients with implantable cardioverter defibrillators (ICD) experience anxiety, depression and reduced quality of life (QoL). Patient groups offer a low-resource option for supporting these patients; however, it is not known how support groups can meet patients’ needs nor what format they should take. Aim: This thesis aimed to explore the role of support groups in helping patients to adapt to life with an ICD by evaluating the evidence base and exploring ICD recipients attitudes and perceptions of attending a support group. Methods: Three studies were conducted. These comprised of a mixed-methods systematic (MMS) review, a qualitative study using semi-structured interviews and thematic analysis, and finally development and use of a Likert-style questionnaire. For the MMS review, eligible studies investigated patient-led support groups for ICD patients using any quantitative or qualitative design. Meta-analysis of quantitative measures of mental well-being was conducted whilst thematic synthesis was used to generate analytic themes from the qualitative data. The data were integrated and presented using the Pillar Integration Process. For the qualitative study, 14 ICD recipients were interviewed using a semi-structured interview guide. Reflexive thematic analysis methods were employed to code and analyse the transcripts before generating themes. Finally, 28 statements were generated from the qualitative findings for use in a purpose-designed Likert-style questionnaire. 17 questionnaires were returned and agreement with the qualitative findings was assessed using the mean score for each statement. A Patient and Public Involvement group was consulted with throughout the project. Results: No clear evidence was found that patient support groups for ICD recipients have a significant effect on quantitative measures of anxiety and QoL. The qualitative findings of this thesis, however, showed that attendees perceived the group as beneficial. Analysis generated themes which suggest support groups may provide ICD recipients with the opportunity to learn and utilise coping skills and complete tasks towards adapting to their life with an ICD. The questionnaire results demonstrated overall agreement that in order to provide this perceived benefit support groups should include opportunities for healthcare professional (HCP)-led education as well peer support and sharing of experiences. Conclusion: The lack of ethnic diversity in the study samples and the contextual impact of research being undertaken during the Covid-19 pandemic limit the generalisability of the findings, however, this thesis provides new insight into how patient support groups may confer benefit through improving adaptation to life with an ICD by addressing patients’ concerns and increasing acceptance. The findings of this thesis suggest that the current lack of significant quantitative evidence in favour of support groups may be attributable to the choice of outcome measures, which focus on anxiety and QoL rather than adaptation or acceptance. Further research is needed to address the limitations and confirm the findings of this thesis before undertaking larger-scale experimental research using appropriate outcome measures.