AbstractBackground: People with learning disabilities (PwLD) have increased vulnerabilities to experiencing pain whilst also experiencing inequalities within the healthcare system. The topic of pain within this population remains under-researched, and there has been limited qualitative research conducted directly with PwLD. Factors which may impact on whether PwLD choose to disclose pain are discussed within the available literature. However, it is not well understood which of these factors are perceived as a help or hindrance to seeking support for pain, or the processes by which PwLD seek support when in pain.
Method: A constructivist grounded theory method was planned, focusing on the iterative process of data collection and analysis, with the aim of developing a comprehensive end theory capturing the support seeking process for pain by PwLD. A sample of two PwLD were interviewed for the study. Initial and focused coding, and a constant comparative method were utilised to develop initial categories and sub-categories. Owing to the small sample size the study was unable to align fully to all aspects of a grounded theory study, and results were instead conceptualised as a cross-case analysis informed by grounded theory methods. A systematic review of the qualitative literature examining the phenomenological experience of pain for PwLD was also conducted using a meta-ethnographic approach.
Results: Three main categories were developed from the cross-case analysis: ‘relinquishing and regaining control’, ‘others need to understand my pain’, and ‘discovering what helps’. The findings of the systematic review include the development of a conceptual model, highlighting factors which influence the understanding, recognition and management of pain by PwLD, their families, and health professionals.
Conclusion: The study has provided a cross-case analysis which offers further conceptual insights and initial categories regarding the process of support-seeking by PwLD when they are in pain. The systematic review findings offer further conceptual insight into the phenomenological experience of pain for PwLD, their families and health professionals. Implications for practice are discussed, and future research is emphasised as a necessity in identifying and addressing barriers to PwLD accessing high-quality care and support for pain.
|Date of Award
|Ash Summers (Supervisor) & Alan Robert Bowman (Supervisor)