| dc.description.abstract | Systematic Review Abstract
Background: Multiple Sclerosis (MS) is a complex neurodegenerative condition.
People with MS (pwMS) frequently encounter healthcare professionals (HCPs) and
healthcare services. Understanding the healthcare experiences of pwMS is
essential, as often, their needs are unmet. This can impact the management of
disease, long-term health outcomes, and future healthcare access.
Objectives: This qualitative systematic review aimed to understand pwMS’
healthcare experiences across an international context.
Method: A systematic search of Embase, MEDLINE, and CINAHL was conducted,
followed by a forward citation search. Twenty-five papers met the full-text screening
criteria. The papers were summarised and critically evaluated, and a thematic
synthesis was conducted.
Results: Six main themes were generated; pwMS felt there was a lack of person centred information from HCPs, holistic care options, and attention to inclusion and
diversity. PwMS felt dismissed and abandoned by HCPs and experienced a range of
difficult emotions both due to their MS and healthcare experiences. PwMS highly
valued peer support.
Conclusions: The findings from the review indicate that pwMS would like increased
person-centred information about their MS, attention to inclusion and diversity, and a
comprehensive range of care options. The findings highlight the emotional impact of
living with MS, the healthcare experience, and the importance of peer support.
Based on these findings, clinical implications for HCPs and clinical psychologists are
suggested.
Empirical Paper Abstract
Objective: I aimed to explore people with Multiple Sclerosis’s (pwMS) narrative
experiences of outpatient neurology appointments, particularly concerning their
relationships with their neurologists.
Design: I interviewed twelve participants with Multiple Sclerosis (MS). Participants'
interviews were analysed using narrative analysis. I identified story summaries,
subject positions, turning points. I used positioning theory to consider the patient doctor relationship.
Results: Three main narrative types were identified: processing, frustration, and
acceptance. The analysis identified participants’ differing positions as both a person
with MS and their peers with MS. Within their narratives participants positioned their
neurologists as either ‘heroes’ or ‘villains’. Analysis of turning points highlighted that
for participants, the COVID-19 pandemic and having something they could
practically do for their MS changed how participants spoke about their MS and their
neurology appointments.
Conclusion: The findings indicated the different experiences of pwMS in outpatient
neurology appointments and how their needs change across the care pathway. The
findings also tell us about the importance of the patient-doctor relationship and the
impact this relationship can have on a person’s experience of MS. Practical
suggestions are made for clinical psychologists working with neurologists in multi disciplinary teams (MDTs). | en_GB |
