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

Evaluation of the Reducing Reoffending Change Fund

The aim of this evaluation was to assess the extent to which the Public Social Partnerships model delivers effective mentoring services that reduce the risk of reoffending. It was carried out by Ciaran Mulholland, Jane Eunson, Lorraine Murray and Louise Bowen (Ipsos MORI Scotland) in collaboration with Professor Gill McIvor, Dr Margaret Malloch, Professor Bill Whyte, Dr Steve Kirkwood and Professor Fergus McNeill

Review of the Aberdeen Problem-Solving Approach

Presentation delivered by Lorraine Murray, Hannah Graham and Jane Eunson, with co-authors and fellow researchers Gill McIvor and Margaret Malloch, at the Scottish Government launch event, 'Problem Solving Approaches' of this research on 5th September 2018 in Edinburgh

Evaluation of the 'You First' programme for young parents

You First was developed by Barnardo’s and funded by the Scottish Government. It targets vulnerable parents aged 21 and under, with a child under the age of one, who live in the 15% most deprived areas in Scotland. It aims to provide a boost for young, first time parents by increasing the support that they receive from their peers, the community and existing local services. The evaluation explored the benefits of the You First programme and the ways in which these could be maximised through effective delivery

Review of the Aberdeen Problem Solving Approach - Summary Briefing

A 6 page summary briefing of the full report, 'Review of the Aberdeen Problem-Solving Approach' (2018) by Jane Eunson, Lorraine Murray, Hannah Graham, Margaret Malloch and Gill McIvor. The Scottish Government commissioned Ipsos MORI Scotland and the Scottish Centre for Crime and Justice Research/University of Stirling to conduct an independent Review of the PSA between August 2017 and January 2018

Public acceptability of financial incentives for smoking cessation in pregnancy and breastfeeding: a survey of the British public

Objective: To survey public attitudes about incentives for smoking cessation in pregnancy and for breast feeding to inform trial design. Design: Cross-sectional survey. Setting and participants: British general public. Methods: Seven promising incentive strategies had been identified from evidence syntheses and qualitative interview data from service users and providers. These were shopping vouchers for: (1) validated smoking cessation in pregnancy and (2) after birth; (3) for a smoke-free home; (4) for proven breast feeding; (5) a free breast pump; (6) payments to health services for reaching smoking cessation in pregnancy targets and (7) breastfeeding targets. Ipsos MORI used area quota sampling and home-administered computer-assisted questionnaires, with randomised question order to assess agreement with different incentives (measured on a five-point scale). Demographic data and target behaviour experience were recorded. Analysis used multivariable ordered logit models. Results: Agreement with incentives was mixed (ranging from 34% to 46%) among a representative sample of 1144 British adults. Mean agreement score was highest for a free breast pump, and lowest for incentives for smoking abstinence after birth. More women disagreed with shopping vouchers than men. Those with lower levels of education disagreed more with smoking cessation incentives and a breast pump. Those aged 44 or under agreed more with all incentive strategies compared with those aged 65 and over, particularly provider targets for smoking cessation. Non-white ethnic groups agreed particularly with breastfeeding incentives. Current smokers with previous stop attempts and respondents who had breast fed children agreed with providing vouchers for the respective behaviours. Up to £40/month vouchers for behaviour change were acceptable (>85%). Conclusions: Women and the less educated were more likely to disagree, but men and women of childbearing age to agree, with incentives designed for their benefit. Trials evaluating reach, impact on health inequalities and ethnic groups are required prior to implementing incentive interventions

Evaluation of protective effect of cyclodextrin glucanotransferase-treated Gastrodia elata Blume extract on ultraviolet B-induced premature skin aging

Purpose: To investigate the protective effect of Gastrodia elata Blume (G. elata, GE) and cyclodextrin glucanotransferase (CGTase) enzyme-treated G. elata extract (EGE) against premature skin aging using ultraviolet B (UVB)-exposed normal human dermal fibroblasts (NHDFs).Methods: The extract was characterized by liquid chromatography with tandem mass spectrometry (LC-MS/MS), ultra-high performance liquid chromatography-quadrupole time-of-flight mass spectrometry (UPLC–QToF–MS) and nuclear magnetic resonance spectroscopy (NMR). The expression of matrix  metalloproteinases (MMP-1,3), interleukin-6 (IL-6), transforming growth factor (TGF-β1) and procollagen type I was assayed using ELISA kits. Safety evaluation of EGE’s dietary administration and topical application was performed by in vivo acute oral toxicity and local lymph node tests.Results: Lower MMP-1 and IL-6 and higher procollagen type I and TGF-β1 levels were observed after treatment with EGE than with GE, indicating that EGE was more effective than GE in treating UVBinduced photoaging. With respect to phenolic composition, EGE had lower 4-hydroxybenzaldehyde (4- HBA) level and higher α-gastrodin level than GE. In UVB-irradiated NHDFs, α-gastrodin exhibited higher anti-aging activity than 4-HBA and β-gastrodin based on the expression of MMP-1, MMP-3, and procollagen type I. The in vivo data indicate that EGE was safe at concentrations of up to 2000 mg/kg for dietary administration and 0.1 % for topical application.Conclusion: EGE protects UVB-induced photoaged human skin better than GE owing to its higher α- gastrodin content. Thus, EGE may be potentially useful agent in anti-aging cosmetic products.Keywords: Gastrodia elata, α-Gastrodin, Anti-aging, CGTase, Ultraviolet B (UVB) irradiation, Matrix metalloproteinase, Procollagen, Normal human dermal fibroblast