A qualitative exploration of the barriers and facilitators to self-managing multiple long-term conditions amongst people experiencing socioeconomic deprivation.

BACKGROUND: Globally, it is estimated that one in three adults live with two or more long-term conditions (multiple long-term conditions, MLTCs), that require self-management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient-healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self-managing MLTCs, amongst people who experience socioeconomic deprivation. METHODS: Semistructured one-to-one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. FINDINGS: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self-management, including social isolation, area-based and economic exclusion, and health-related stigma and (4) adapting self-management strategies, including cost-effective, and culturally/lifestyle appropriate strategies. CONCLUSIONS: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self-management of MLTCs are of great importa. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data.

Clinical and cost-effectiveness of 'Live Well with Parkinson's' self-management intervention versus treatment as usual for improving quality of life for people with Parkinson's: study protocol for a randomised controlled trial.

BACKGROUND: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions. METHODS: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. DISCUSSION: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's. TRIAL REGISTRATION: ISRCTN92831552. Registered on 26th Oct 2021.

Type of goals set and progress towards these goals, as part of a behaviour change intervention, in people with mild cognitive impairment: a secondary analysis.

BACKGROUND: Mild cognitive impairment (MCI) affects 5-20% of older people in the UK, but often goes undiagnosed and is associated with increased risk of dementia. Targeting risk factors such as physical inactivity and social isolation through behaviour-change interventions could reduce this risk. However, it is unclear how MCI impacts engagement with these interventions. We aimed to explore how MCI affects goal-setting priorities and progress towards these goals in a behaviour-change intervention (HomeHealth). METHODS: This was a secondary analysis of a completed randomised controlled trial, HomeHealth, which started in January 2021 and recruited 386 participants aged 65 years and older with mild frailty according to the Clinical Frailty Scale from general practices and the community in England. Participants were randomly assigned (1:1) to receive either the HomeHealth intervention (n=195) or treatment as usual (n=191) for 6 months. An evidence-based behaviour change intervention supported older people to work on goals to maintain independence, addressing factors affecting capability, opportunity, and motivation. Goal setting and progress information was available for 167 (86%) of 195 participants who received the intervention. The type of goal set and goal progress (scale 0-2) were compared between participants with healthy cognition, those with potential MCI, and those with probable dementia (rated with Montreal Cognitive Assessment [MoCA]). Qualitative semi-structured interviews were conducted between Aug 16, 2022, and May 18, 2023, with 29 people with MCI who received the intervention, to explore the perceived impact of MCI on goal setting, progress, and maintenance. Data were analysed using codebook thematic analysis. FINDINGS: The mean age of participants was 80·8 years, 105 (63%) of 167 were women and 158 (95%) were white. 54 (32%) of 167 participants had healthy cognition, 94 (56%) had potential MCI, and 19 (11%) probable dementia. Distribution of goal type was similar across the three groups, with most participants setting mobility goals. Progress towards goals (scale 0-2) was similar in people with healthy cognition and potential MCI (1·24 and 1·18, respectively) but lower in those with probable dementia (0·76). However, all met the moderate progress cutoff (0·66-1·32). People with MCI recognised their cognition was getting worse but did not feel the HomeHealth intervention could help. Rather than setting new goals, people with MCI built on existing behaviours. Many did not initially understand the intervention and felt they would have benefitted from contact in between sessions or from more sessions to help goal progress. Once the sessions ended, less than a quarter of participants maintained the goal progress. INTERPRETATION: Interventions to help older adults age well can be successfully delivered in people with MCI, to help them set and make progress towards goals. However, to maintain changes, more intense support is needed. FUNDING: National Institute for Health and Care Research (NIHR) School for Primary Care Research, NIHR Health Technology Assessment.

Effectiveness of self-management interventions for long-term conditions in people experiencing socio-economic deprivation in high-income countries: a systematic review and meta-analysis.

BACKGROUND: Long-term conditions (LTCs) are prevalent in socio-economically deprived populations. Self-management interventions can improve health outcomes, but socio-economically deprived groups have lower participation in them, with potentially lower effectiveness. This review explored whether self-management interventions delivered to people experiencing socio-economic deprivation improve outcomes. METHODS: We searched databases up to November 2022 for randomized trials. We screened, extracted data and assessed the quality of these studies using Cochrane Risk of Bias 2 (RoB2). We narratively synthesized all studies and performed a meta-analysis on eligible articles. We assessed the certainty of evidence using GRADE for articles included in the meta-analysis. RESULTS: The 51 studies included in this review had mixed findings. For the diabetes meta-analysis, there was a statistically significant pooled reduction in haemoglobin A1c (-0.29%). We had moderate certainty in the evidence. Thirty-eight of the study interventions had specific tailoring for socio-economically deprived populations, including adaptions for low literacy and financial incentives. Each intervention had an average of four self-management components. CONCLUSIONS: Self-management interventions for socio-economically deprived populations show promise, though more evidence is needed. Our review suggests that the number of self-management components may not be important. With the increasing emphasis on self-management, to avoid exacerbating health inequalities, interventions should include tailoring for socio-economically deprived individuals.

Self-management of multiple long-term conditions: A systematic review of the barriers and facilitators amongst people experiencing socioeconomic deprivation.

BACKGROUND: Multiple long-term conditions are rising across all groups but people experiencing socioeconomic deprivation are found to have a higher prevalence. Self-management strategies are a vital part of healthcare for people with long-term conditions and effective strategies are associated with improved health outcomes in a variety of health conditions. The management of multiple long-term conditions are, however, less effective in people experiencing socioeconomic deprivation, leaving them more at risk of health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self-management on long-term conditions in those experiencing socioeconomic deprivation. METHODS: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self-management of multiple long-term conditions among socioeconomically disadvantaged populations. Data were coded and thematically synthesised using NVivo. FINDINGS: From the search results, 79 relevant qualitative studies were identified after the full text screening and 11 studies were included in the final thematic synthesis. Three overarching analytical themes were identified alongside a set of sub-themes: (1) Challenges of having multiple long-term conditions; prioritisation of conditions, impact of multiple long-term conditions on mental health and wellbeing, polypharmacy, (2) Socioeconomic barriers to self-management; financial, health literacy, compounding impact of multiple long-term conditions and socioeconomic deprivation, (3) Facilitators of self-management in people experiencing socioeconomic deprivation; maintaining independence, 'meaningful' activities, support networks. DISCUSSION: Self-management of multiple long-term conditions is challenging for people experiencing socioeconomic deprivation due to barriers around financial constraints and health literacy, which can lead to poor mental health and wellbeing. To support targeted interventions, greater awareness is needed among health professionals of the barriers/challenges of self-management among these populations.

Talking control sessions in people with advanced cancer: a qualitative analysis of sessions.

BACKGROUND: Talking control (TC) was developed to control for the common factors in therapy so that the specific effects of therapy can be tested. A TC was recently used in a pilot study of Acceptance and Commitment therapy for dysfunction in people with advanced cancer. This work explores the audio recording of the sessions in a TC to explore how they were utilised by people with advanced cancer. METHODS: This is a qualitative study nested in larger feasibility randomised control trial. The trial participants were recruited from three London hospices. The study examined data for 5 participants who received weekly sessions of a TC. Fifteen sessions, three per participant, were transcribed and analysed using a thematic approach. RESULTS: Individuals with advanced cancer used TC sessions as a safe place in which they could express their feelings-from smaller daily concerns to deeper-rooted difficulties. Many participants also engaged in emotional and cognitive avoidance regarding some topics, particularly those pertaining to their cancer. The TC sessions were also used as an opportunity to focus on the more positive aspects of their lives. Lastly, they served to reflect on ways to overcome difficulties. CONCLUSIONS: This study suggests the TC can have beneficial, albeit varying uses for people with advanced cancer, that may even be considered therapeutic.

Acceptance and commitment therapy for adults with advanced cancer (CanACT): A feasibility randomised controlled trial.

OBJECTIVE: To understand the feasibility of recruiting people with advanced cancer into a randomised controlled trial of acceptance and commitment therapy (ACT) vs a standardised talking control (TC) and delivering ACT to this population; to explore the acceptability of outcome measures and generate normative data. METHODS: This was a feasibility two-arm randomised controlled trial. Participants were attendees with advanced cancer at one of three hospice-based day-therapy units in London, United Kingdom, who demonstrated low scores on the Functional Assessment of Cancer Therapies-General (FACT-G). The primary end point was 3 months. RESULTS: The recruitment target was 54 participants; 42 people were recruited and randomised to up to eight individual sessions of ACT (n = 20) or TC (n = 22). Eighteen out of 42 (43%) of participants completed the primary outcome at 3 months, and at least one follow-up was available in 30/42 (71%) participants. An exploratory analysis revealed a non-significant adjusted mean difference after 3 months in the main outcome FACT-G of -3.41 (CI = -18.61-11.79) with TC having better functioning. Over 6 months, the adjusted mean difference between trial arms was 2.25 (CI = -6.03-10.52) in favour of ACT. CONCLUSIONS: It is feasible to recruit people with advanced cancer in a trial of ACT versus TC. Future research should test the effectiveness of ACT in a fully powered trial.