The use of Acceptance and Commitment Therapy to address psychological distress experienced by caregivers: a randomised controlled feasibility trial

Background: An extensive research literature has documented the impact of caring for an individual with acquired brain injury (ABI) on caregivers and family members, including role adjustment, psychological distress, social isolation, family tension and coping with the cognitive and behavioural difficulties of the injured person. Given these findings it is important this population have access to services and supports. Acceptance and Commitment Therapy (ACT) is an intervention that helps individuals to accept difficult experiences and commit to behaviour that is consistent with their values. Research into the effectiveness of ACT to support caregivers is at a preliminary stage. Aim: To investigate the feasibility of using ACT to reduce psychological distress and increase psychological flexibility in ABI caregivers. A secondary aim was to gain an understanding of the experience of caregivers in this context and how this can inform the development and delivery of interventions for this population. Method: Phase one was a randomised controlled feasibility trial of an ACT intervention for use with ABI caregivers. The parameters of this study were formulated around the PICO (population, intervention, control, and outcome) framework. Eighteen carers were recruited and randomised to ACT or an enhanced treatment as usual (ETAU) group. ACT was implemented over 3 sessions; and ETAU was implemented over 2 sessions. The General Health Questionnaire, Valuing Questionnaire, Acceptance and Action Questionnaire, Experiential Avoidance of Caregiving Questionnaire and the Flexibility of Responses to Self-Critical Thoughts Scale were administered to both groups at baseline and following the final session. Phase two used a retrospective qualitative design that involved conducting semi-structured interviews with four participants from phase one. Results: ACT and control participants were successfully recruited. Positive feedback was obtained from ACT participants suggesting that the intervention was acceptable. There were no significant differences between the ACT and ETAU groups on outcome measures. However, there were challenges retaining participants and the overall attrition rate was high (44.44%). Therefore a number of participants did not complete the full complement of sessions, which may have impacted on this result. Qualitative results illustrated the challenges this population face including significant adjustments in their life, the emotional impact of having a loved one with a brain injury and trying to adapt to the changes in the injured person. In addition, findings elucidated the types of support that this population would find helpful and the barriers to accessing same. Conclusions: Findings from this study highlight factors that will help the development of this intervention further for a caring population. Recommendations for future implementation include completing some preparatory work with carers before beginning the intervention, consideration of a larger sample and wider recruitment strategy from local services, barriers to attending interventions and the possibility of holding groups in local venues.

Caregivers' experiences and coping strategies relating to patient's subjective treatment-related cognitive impairment following Haematopoietic Stem Cell Transplant (HSCT)

The treatments involved in cancers of the blood and bone marrow can be physically and psychologically challenging and be associated with adverse secondary effects, including cognitive impairment. The incidence and severity of treatment-related cognitive impairment varies widely, however it can significantly impact quality of life by interfering with patients’ activities of daily living, relationships and future plans. It can also pose challenges for the patients’ caregivers, an area which has received comparatively less research attention. The aim of this study was to investigate caregivers’ experiences of treatment-related cognitive impairment in patients who have undergone Haematopoietic Stem Cell Transplant (HSCT); how they coped, both practically and emotionally, and what supports they believe could help them. Participants were caregivers to individuals who had undergone HSCT within the past 20 years and who had reported cognitive changes at the HSCT Late Effects Clinic, Beatson West of Scotland Cancer Centre. Five participants completed a single semi-structured interview. The data was then analysed using Interpretative Phenomenological Analysis (IPA). Results of this analysis illustrated four super-ordinate themes: noticing change; managing expectations, managing personal feelings and commitment. Findings from the current study highlighted the importance of caregiver education regarding post HSCT cognitive and behavioural changes and providing caregiver emotional support. Future research should explore the mutual needs of both care recipient and caregiver.

Tracing outsideness: young women's institutional journeys and the geographies of closed space

Understanding confinement and its complex workings between individuals and society has been the stated aim of carceral geography and wider studies on detention. This project contributes ethnographic insights from multiple sites of incarceration, working with an under-researched group within confined populations. Focussing on young female detainees in Scotland, this project seeks to understand their experiences of different types of ‘closed’ space. Secure care, prison and closed psychiatric facilities all impact on the complex geographies of these young women’s lives. The fluid but always situated relations of control and care provide the backdrop for their journeys in/out and beyond institutional spaces. Understanding institutional journeys with reference to age and gender allows an insight into the highly mobile, often precarious, and unfamiliar lives of these young women who live on the margins. This thesis employs a mixed-method qualitative approach and explores what Goffman calls the ‘tissue and fabric’ of detention as a complex multi-institutional practice. In order to be able to understand the young women’s gendered, emotional and often repetitive experiences of confinement, analysis of the constitution of ‘closed space’ represents a first step for inquiry. The underlying nature of inner regimes, rules and discipline in closed spaces, provide the background on which confinement is lived, perceived and processed. The second part of the analysis is the exploration of individual experiences ‘on the inside’, ranging from young women’s views on entering a closed institution, the ways in which they adapt or resist the regime, and how they cope with embodied aspects of detention. The third and final step considers the wider context of incarceration by recovering the young women’s journeys through different types of institutional spaces and beyond. The exploration of these journeys challenges and re-develops understandings of mobility and inertia by engaging the relative power of carceral archipelagos and the figure of femina sacra. This project sits comfortably within the field of carceral geography while also pushing at its boundaries. On a conceptual level, a re-engagement with Goffman’s micro-analysis challenges current carceral-geographic theory development. Perhaps more importantly, this project pushes for an engagement with different institutions under the umbrella of carceral geography, thus creating new dialogues on issues like ‘care’ and ‘control’. Finally, an engagement with young women addresses an under-represented population within carceral geography in ways that raise distinctly problematic concerns for academic research and penal policy. Overall, this project aims to show the value of fine grained micro-level research in institutional geographies for extending thinking and understanding about society’s responses to a group of people who live on the margins of social and legal norms.