Exploring systemic therapeutic approaches for individuals with intellectual disabilities using a narrative synthesis of existing research and interpretive phenomenological analysis: a portfolio thesis
BACKGROUND: This thesis portfolio comprises two main sections. The first involves a systematic review exploring the outcomes of systemic approaches used for individuals with intellectual disabilities with additional mental health or behavioural needs, and their support systems. Intellectual disability in one member of a system can have an extensive impact on those around them, and often leads to greater dependence on support systems. It is therefore important that we understand how to adequately support the system and sustain this resource. This systematic review sought to explore and synthesise the outcomes of various systemic approaches used in this context. The second section takes the form of an empirical study to explore a specific systemic intervention. The impact of intellectual disability often leaves their carers at greater risk of stress and mental health difficulties. Behavioural Family Therapy (BFT) is a form of psychoeducational family intervention that was developed to reduce stress and improve communication within families. This study aimed to explore the experiences of primary caregivers for an individual with intellectual disabilities and additional mental health or behaviour difficulties, related to being a BFT participant. METHOD: The systematic review involved a thorough search of online databases and reference lists to identify relevant articles, as defined by predetermined eligibility criteria. 12 articles were identified, which were synthesised and evaluated using an adapted quality rating scale recommended by CASP and SIGN guidelines checklists. The empirical study involved engaging eight primary caregivers in semi-structured interviews about their experiences of being a BFT participant. Interviews were transcribed and analysed using interpretive phenomenological analysis. RESULTS: The systematic review highlighted the potential benefit of using systemic approaches with individuals with intellectual disabilities and their support systems. Several articles reported on improvements in the behaviours of multiple family members, not just the individual with the intellectual disability. Many also noted improvements in the communication and interactions of system members as well as overall improvements in relationships. However, uncertainty regarding authors' definition of 'systematic approach' made it difficult to ascertain the degree of true systemic influence within evaluated interventions. Furthermore, the overall quality of the reviewed articles was poor. Three superordinate themes emerged from the empirical study analysis; 'journey to acceptance and engagement in BFT', 'sense of progression and change', and 'caregiving in a challenging system'. A fear of judgement permeated caregiver narratives, which made openness challenging. They felt that trust, empathy and validation were essential elements in fostering a sense of safety and comfort during disclosure. Caregivers also speculated on the timing of intervention, some feeling that crisis enabled engagement, whilst others felt crisis disabled their ability to attend to and engage in intervention. Caregivers all reflected on their sense of adjustment and benefit from BFT, with many reporting increased confidence in their caregiving abilities. Lastly, all caregivers referred to the current, consuming stress, and worry they were experiencing. This stress demanded vast amounts of their attention, making it difficult to engage in day-to-day tasks. This also led to difficulties in reflecting during interview. Several reported increased cynicisms about the world and the people in it, as a result of their experiences and their sense of duty to protect the individual with intellectual disability. These considerations were conceptualised in light of their expectation to engage in and facilitate change in BFT. DISCUSSION: The evident paucity of quality literature in this area indicates the need for more research to build upon the limited evidence base. Poor study quality often resulted from the study design, their use of outcome measures (not validated for the appropriate population) or lack thereof, and ambiguities relating to defining systemic approaches. More methodologically sound research would help to resolve these issues and may aid a better understanding of the useful 'active ingredients' of systematic intervention for use with individuals with intellectual disabilities and their support systems. The empirical study also highlights the benefit of further research into the use of BFT in this population, though the results do indicate that caregivers found elements of this intervention helpful. Results are discussed in relation to existing research and current policy. Limitations are acknowledged and clinical implications are discussed, which include the importance of developing therapeutic trust, the benefit of engaging the whole system as opposed to just two members, and the need to acknowledge the severity of stresses impacting the system's ability to accept and engage in BFT. Future research exploring the experiences of individuals with intellectual disabilities of being a BFT participant, would nicely complement this study. Larger quantitative research may help to determine whether objective changes, as postulated by caregivers in this study, may occur at group level.