Developing and Assessing the Feasibility of a Psychosocial Intervention for Persistent Fatigue for Women with Endometriosis
Date
2024-12
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Stellenbosch : Stellenbosch University
Abstract
Endometriosis is a complex, poorly understood disease that affects approximately 2% to 10% of women globally. Persistent fatigue renders many endometriosis patients unable to engage in daily life, yet has not received much attention in the academic literature and treatment protocols are almost non-existent. Persistent fatigue is a common symptom of other long-term diseases and the evidence for cognitive behavioural therapy (CBT)-based treatment is strong. This study involved the development of a CBT-based intervention for endometriosis-related persistent fatigue and investigated its feasibility among a group of South African patients. Phase I of the study aimed to describe the lived experiences of fatigued endometriosis patients, utilising existing data attained from a prior qualitative study involving semi-structured interviews with 25 participants. A deductive analytical approach was used to code the data according to five research questions to inform the development of the intervention, namely what it was like for participants to live with persistent fatigue, the impact that endometriosis had in their lives, what they knew about the cause and treatment of fatigue, how they coped with fatigue, and how the people in their lives reacted to their fatigue. The second aim was to develop a psychosocial intervention using the existing evidence base from other diseases for which fatigue is a common symptom and informed by the qualitative findings. An interventionist manual and workbook were created for the Managing Fatigue in Endometriosis (MEND) programme, based on key CBT principles. The intervention was originally intended to be offered face-to-face but given the COVID-19 pandemic, it was adapted to be offered online. The draft programme manuals underwent a review process by expert stakeholders, including my doctoral supervisors, specialised health and mental health professionals, as well as several endometriosis patients, to ensure the relevance and appropriateness of the content. Phase II of the study involved an exploratory, single arm within-subjects evaluation of the MEND intervention utilising mixed methods. The study assessed the feasibility, acceptability, and preliminary indications of effectiveness of MEND among 21 participants. The intervention was offered virtually by trained Registered Counsellors. The study findings demonstrate that the appropriate participants could be recruited from the target group and that the eligibility criteria were feasible, with a high recruitment rate (83%). A lower enrolment rate (49%) was noted, which was mostly due to non-response to communication about the study. Session attendance was relatively low (between 43% to 76% per session), with a 57% completion rate and 28% drop out rate, which was predominantly due to crippling countrywide power outages during implementation. The intervention was well received and found to be acceptable by participants and interventionists alike. While not sufficiently powered to determine effectiveness, the study findings indicate preliminary improvements in fatigue severity, depressive symptomology, quality of life, and cognitive and behavioural responses to symptoms, many of which can be considered to be clinically meaningful, although the improvements were not fully sustained at follow-up. A randomised controlled trial is required to assess the outcomes and treatment gains more definitively, with several recommendations for improvement made.
Description
Thesis (PhD)--Stellenbosch University, 2024.