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.

Investigating assistive technology to support memory for people with cognitive impairments

Technologies such as automobiles or mobile phones allow us to perform beyond our physical capabilities and travel faster or communicate over long distances. Technologies such as computers and calculators can also help us perform beyond our mental capabilities by storing and manipulating information that we would be unable to process or remember. In recent years there has been a growing interest in assistive technology for cognition (ATC) which can help people compensate for cognitive impairments. The aim of this thesis was to investigate ATC for memory to help people with memory difficulties which impacts independent functioning during everyday life. Chapter one argues that using both neuropsychological and human computing interaction theory and approaches is crucial when developing and researching ATC. Chapter two describes a systematic review and meta-analysis of studies which tested technology to aid memory for groups with ABI, stroke or degenerative disease. Good evidence was found supporting the efficacy of prompting devices which remind the user about a future intention at a set time. Chapter three looks at the prevalence of technologies and memory aids in current use by people with ABI and dementia and the factors that predicted this use. Pre-morbid use of technology, current use of non-tech aids and strategies and age (ABI group only) were the best predictors of this use. Based on the results, chapter four focuses on mobile phone based reminders for people with ABI. Focus groups were held with people with memory impairments after ABI and ABI caregivers (N=12) which discussed the barriers to uptake of mobile phone based reminding. Thematic analysis revealed six key themes that impact uptake of reminder apps; Perceived Need, Social Acceptability, Experience/Expectation, Desired Content and Functions, Cognitive Accessibility and Sensory/Motor Accessibility. The Perceived need theme described the difficulties with insight, motivation and memory which can prevent people from initially setting reminders on a smartphone. Chapter five investigates the efficacy and acceptability of unsolicited prompts (UPs) from a smartphone app (ForgetMeNot) to encourage people with ABI to set reminders. A single-case experimental design study evaluated use of the app over four weeks by three people with severe ABI living in a post-acute rehabilitation hospital. When six UPs were presented through the day from ForgetMeNot, daily reminder-setting and daily memory task completion increased compared to when using the app without the UPs. Chapter six investigates another barrier from chapter 4 – cognitive and sensory accessibility. A study is reported which shows that an app with ‘decision tree’ interface design (ApplTree) leads to more accurate reminder setting performance with no compromise of speed or independence (amount of guidance required) for people with ABI (n=14) compared to a calendar based interface. Chapter seven investigates the efficacy of a wearable reminding device (smartwatch) as a tool for delivering reminders set on a smartphone. Four community dwelling participants with memory difficulties following ABI were included in an ABA single case experimental design study. Three of the participants successfully used the smartwatch throughout the intervention weeks and these participants gave positive usability ratings. Two participants showed improved memory performance when using the smartwatch and all participants had marked decline in memory performance when the technology was removed. Chapter eight is a discussion which highlights the implications of these results for clinicians, researchers and designers.

Africans in Scotland: heterogeneity and sensitivities to HIV

Aim: To investigate how diversity within the African migrant population in Scotland affects their understandings of HIV and uptake of HIV testing and treatment, in order to improve HIV-related outcomes. Background: In the UK, Africans have the worst outcomes for HIV infection, primarily due to late diagnosis. Improvement requires better understanding of the barriers to healthcare engagement. This PhD study investigates how diversity among first generation African migrants in Scotland could affect engagement with general healthcare and HIV related interventions and services. Methods: I conducted qualitative research, involving participant observation at two sites (an African religious group and an asylum seeker/refugee drop-in centre) and interviews with African migrants attending these and three additional sites (two advocacy charities and a student association). Data were collected in two cities (Glasgow and Edinburgh) and two smaller towns (Paisley and Kirkcaldy). I interviewed 27 Africans, including economic migrants (n=8), students (n=9) and asylum seeker/refugees (n=10) and 14 representatives from organisations with high levels of African attendees (e.g., country associations, community organisations, advocacy groups, commercial establishments and religious based organisations). Thematic data analysis was carried out. Results: Diversity of the population and related issues of identity: Participants were highly diverse and reported considerable heterogeneity in the African diaspora in Scotland. The identity of “African” was bound with various negative stereotypes and appeals to this identity did not necessarily have relevance for participants. Nature of African affiliated organisations in Scotland: There were a wide range of organisations that advertised their remit as catering for the African diaspora. They varied in consistency and sustainability and contributed towards healthcare engagement to different degrees. Engagement with healthcare: There were multiple experiences and understandings of the healthcare system within the sample as a whole, and to an extent by migrant type. Whilst the majority reported successful and satisfactory service use, distinct barriers emerged. These included: understandings of rights and access to care based on African models of healthcare; the interplay of religious based understandings with ideas about access to healthcare; and assumptions and anxiety about the connections between visa status and health status. Knowledge of HIV and engagement with HIV related services: Participants had good knowledge about HIV, with some notable exceptions, but there was no patterning by migrant type. They had diverse views about risk of HIV infection, most of which did not align with the HIV epidemiology that identifies African migrants as an at risk group. Most of the sample did not think targeting African migrants for HIV interventions would be successful and were hostile to the proposal for various reasons, especially because they believed it would perpetuate stigma and prejudice towards the African diaspora. There were mixed experiences of HIV related services, and prompts to test for HIV had elicited a range of reactions, the majority negative. Conclusion: Diversity within the African diaspora in Scotland should be taken into account to improve the salience and relevance of future HIV interventions. Attitudes towards current HIV testing promotion suggest that a more cooperative approach could be taken with African communities to build on existing relationships of trust and understandings of HIV.