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Bridges, Gary (2024) "It really kind of like cuts my existence into two": an interpretative phenomenological analysis of the experience of adults with sickle cell disease receiving curative Haematopoietic Stem Cell Transplantation (HSCT). Doctoral thesis, London Metropolitan University.
Background:
Sickle cell disease (SCD) is the most common single gene disorder in England. At present, Haematopoietic Stem Cell Transplantation (HSCT) is the only cure, and as of 2020, these have been funded for adults with SCD by the National Health Service (NHS) in England.
Rationale:
The provision of psychology support is deemed important for patients undergoing HSCT, as studies have found a high prevalence of psychological distress is reported (Amonoo et al., 2019). Most research into HSCT have been in relation to haematological malignancies. I reasoned that further research adopting an explicitly psychological focus would be valuable in understanding the lived experiences of HSCT recipients with SCD and how they can be supported psychologically through this major life transition.
Methodology:
Six adults with SCD participated in semi-structured interviews regarding their experience of HSCT. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis (Smith et al., 2022).
Findings:
The analysis resulted in three Group Experiential Themes: (1) ‘Leaving the Inferno’ – details how the worsening burden of SCD over time influenced participants in making the decision to proceed with HSCT, despite the risks, with all hoping for a more ‘normal life’; (2) ‘Travelling through Purgatorio’ – documents the challenging experiences participants had, how they coped, and their attitudes towards psychological therapy as a way of supporting them through HSCT; (3) ‘Journeying towards Paradiso’ – focuses on participants’ progress towards the more ‘normal’ life they had hoped for after HSCT and ongoing adjustment to life without SCD. Crystal Park’s Meaning-Making model (2010) was selected as a theory that could help in understanding the way in which participants’ beliefs and goals developed through a life lived with SCD guided their interpretation of their HSCT experience.
Implications:
Psychological therapies that can facilitate the process of meaning-making would appear potentially helpful in supporting people with SCD through HSCT and adjusting to life afterwards. The importance of making therapy culturally sensitive is emphasised, with African Psychology being a strengths-based approach that may be particularly relevant. Finally, a relational approach to supporting people with SCD through HSCT at the level of the healthcare system as a whole is argued for, extending the principles of Trauma-Informed Care towards building genuine trust with recipients who may have experienced health and race-based stigma and discrimination.
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