Mental health and service use of parents with and without borderline intellectual functioning

Background People with borderline intellectual functioning (BIF) encounter greater social adversities than the general population and have an increased prevalence of mental illness. However, little is known about the socio-demographic characteristics and mental health of parents with BIF. Methods A secondary data analysis of the Adult Psychiatric Morbidity Survey 2014 was conducted. Logistic regression models were fitted to compare differences in socio-demographic, mental health and service-use characteristics between parents and non-parents with and without BIF, and to investigate if the relationship between parent status and mental health outcomes was modified by BIF status, sex, and employment. Results Data from 6872 participants was analyzed; 69.1% were parents. BIF parents had higher odds of common mental disorder, severe mental illness, post-traumatic stress disorder, self-harm/suicide and were more likely to see their General Practitioner (GP) and to receive mental health treatment than non-BIF parents. BIF parents did not have a higher prevalence of mental health problems than BIF non-parents. Being a parent, after adjusting for BIF status and other confounders, was associated with increased odds of having a common mental disorder, visits to see a GP and treatment for mental health. Female parents had higher odds of treatment for mental health problems. Conclusions Being a parent is associated with elevated rates of common mental disorders. There is a higher burden of mental health problems and service use in people with BIF. A greater provision of specialist support services including ascertainment is indicated for this group

Piloting a manualised weight management programme (Shape Up-LD) for overweight and obese persons with mild-moderate learning disabilities: study protocol for a pilot randomised controlled trial

National obesity rates have dramatically risen over the last decade. Being obese significantly reduces life expectancy, increases the risk of a range of diseases, and compromises quality of life. Costs to both the National Health Service and society are high. An increased prevalence of obesity in people with learning disabilities has been demonstrated. The consequences of obesity are particularly relevant to people with learning disabilities who are already confronted by health and social inequalities. In order to provide healthcare for all, and ensure equality of treatment for people with learning disabilities, services must be developed specifically with this population in mind. The aim of this project is to pilot the evaluation of a manualised weight management programme for overweight and obese persons with mild-moderate learning disabilities (Shape Up-LD)

Inequalities in Health and Service Use among People with Borderline Intellectual Impairment

This report, produced in collaboration with Professor Angela Hassiotis and others, sets out the extent to which people with borderline intellectual impairment face inequalities in health and use of services compared with the rest of the population, and seeks to improve awareness of these inequalities. Findings - Borderline intellectual impairment is common, affecting at least one adult in ten in England. The term is used here to refer to people with good verbal skills and living in private households, but who may experience cognitive impairments. - The findings in this report are consistent with previous research: people with borderline intellectual impairment are a disadvantaged group and their needs are not well understood. - Such adults face high levels of poor mental health, poorer general health, and many limitations in their daily lives. - Their level of use of mental health treatment and services does not appear to be commensurate with their higher level of need. This indicates that they are underserved compared with the rest of the population. - This may be due to a lack of professional awareness of their needs, to services not adapting enough to meet those needs, or to difficulties the individual faces in seeking treatment and support. - Adults with borderline intellectual impairment constitute key users of primary and secondary health care, and employment, education and welfare support. Improving awareness of the needs of this group should form part of wider plans to reduce inequalities in health and service use in England. Methods Secondary analysis of data from the Adult Psychiatric Morbidity Survey (APMS) was conducted to profile the circumstances of people with borderline intellectual impairment. APMS is one of the most authoritative and comprehensive national household surveys to assess both intellectual functioning and mental health in adults in England

Individual Cognitive Stimulation Therapy (iCST) for people with intellectual disability and dementia: a feasibility randomised controlled trial

Objectives: To examine the feasibility, acceptability and fidelity of individual Cognitive Stimulation Therapy (iCST) in people with intellectual disability (ID) and dementia. Method: We aimed to recruit forty dyads (carer and individual with dementia and ID) who were randomised to iCST or a waiting list control group. Both groups received treatment as usual. Family and paid carers delivered the manualised intervention (40 sessions over 20 weeks). Recruitment and retention of participants, intervention adherence, fidelity and acceptability were assessed. Outcome measures of cognition, adaptive functioning, quality of life (QoL) and carer outcomes were collected at baseline, midpoint (11 weeks) and at 21 weeks. Qualitative interviews were conducted with six carers about their experience of iCST. Results: Forty dyads were recruited over 10 months from 12 National Health Service trusts. One dyad dropped out and 87.5% and 97.5% completed the midpoint and end-point assessments respectively. Assessment of fidelity indicated that the correct session structure was not followed; 70% completed at least 20 sessions and there was a high level of satisfaction with iCST. QoL was significantly higher in the iCST arm at 21 weeks (adjusted mean difference: 3.11; 95% CI: 0.64 to 5.58). There were no differences in the other outcome measures. Conclusion: The intervention was feasible and acceptable. A full-scale trial is warranted but some modifications are needed, including improved training and supervision for carers to improve fidelity

Mental health and service use of parents with and without borderline intellectual functioning

Background People with borderline intellectual functioning (BIF) encounter greater social adversities than the general population and have an increased prevalence of mental illness. However, little is known about the socio-demographic characteristics and mental health of parents with BIF. Methods A secondary data analysis of the Adult Psychiatric Morbidity Survey 2014 was conducted. Logistic regression models were fitted to compare differences in socio-demographic, mental health and service-use characteristics between parents and non-parents with and without BIF, and to investigate if the relationship between parent status and mental health outcomes was modified by BIF status, sex, and employment. Results Data from 6872 participants was analyzed; 69.1% were parents. BIF parents had higher odds of common mental disorder, severe mental illness, post-traumatic stress disorder, self-harm/suicide and were more likely to see their General Practitioner (GP) and to receive mental health treatment than non-BIF parents. BIF parents did not have a higher prevalence of mental health problems than BIF non-parents. Being a parent, after adjusting for BIF status and other confounders, was associated with increased odds of having a common mental disorder, visits to see a GP and treatment for mental health. Female parents had higher odds of treatment for mental health problems. Conclusions Being a parent is associated with elevated rates of common mental disorders. There is a higher burden of mental health problems and service use in people with BIF. A greater provision of specialist support services including ascertainment is indicated for this group

Cognitive behaviour therapy (CBT) for anxiety and depression in adults with mild intellectual disabilities (ID): a pilot randomised controlled trial

Background: Several studies have showed that people with intellectual disabilities (ID) have suitable skills to undergo cognitive behavioural therapy (CBT). Case studies have reported successful use of cognitive behavioural therapy techniques (with adaptations) in people with ID. Modified cognitive behavioural therapy may be a feasible and effective approach for the treatment of depression, anxiety, and other mood disorders in ID. To date, two studies have reported group-based manaulised cognitive behavioural treatment programs for depression in people with mild ID. However, there is no individual manualised programme for anxiety or depression in people with intellectual disabilities. The aims of the study are to determine the feasibility of conducting a randomised controlled trial for CBT in people with ID. The data will inform the power calculation and other aspects of carrying out a definitive randomised controlled trial.Methods: Thirty participants with mild ID will be allocated randomly to either CBT or treatment as usual (TAU). The CBT group will receive up to 20 hourly individual CBT over a period of 4 months. TAU is the standard treatment which is available to any adult with an intellectual disability who is referred to the intellectual disability service (including care management, community support, medical, nursing or social support). Beck Youth Inventories (Beck Anxiety Inventory & Beck Depression Inventory) will be administered at baseline; end of treatment (4 months) and at six months to evaluate the changes in depression and anxiety. Client satisfaction, quality of life and the health economics will be secondary outcomes.Discussion: The broad outcome of the study will be to produce clear guidance for therapists to apply an established psychological intervention and identify how and whether it works with people with intellectual disabilities

A pilot randomised controlled trial of befriending by volunteers in people with intellectual disability and depressive symptoms

Background: People with intellectual disability (ID) are more likely to experience chronic depression compared with the general population, which may be compounded by loneliness and lower levels of social support. Befriending aims to provide social support and promote engagement in community activities. No randomised controlled trials have examined whether befriending improves symptoms of depression and social outcomes in people with ID. The aim of this pilot trial was to assess the feasibility and acceptability of a future larger trial of one-to-one befriending by volunteers in people with ID and depressive symptoms. Methods: Participants were adults with mild or moderate ID with a score of 5 or more on the Glasgow Depression Scale for People with Learning Disabilities (GDS-LD). They were randomised to the intervention arm (matched to a volunteer befriender for 6 months) or the control arm (usual care). Volunteers received training and supervision provided by two community befriending schemes. The main outcomes were feasibility of recruitment (minimum target n = 35), retention rate of participants, adherence (minimum 10 meetings), acceptability of the intervention, changes in depressive symptoms (assessed at baseline and 6 months) and feasibility of collecting data for a health economic analysis. Results: Recruitment was challenging, and only 16 participants with ID and 10 volunteers were recruited. Six participants were matched with a volunteer and no participants dropped out (except for two volunteers). Four participants completed 10 meetings (mean 11.8). Befriending was thought to be acceptable, but modifications were suggested. An exploratory analysis suggested that GDS-LD score was lower in the intervention group compared with the control group after adjusting for baseline scores, but not significant (adjusted mean difference: −4.0; 95% confidence interval: −11.2 to 3.2). Conclusions: A large trial would not be feasible based on the recruitment strategies employed in this study. A further feasibility study addressing these challenges or the use of other study designs should be considered

A manualised weight management programme for adults with mild-moderate intellectual disabilities affected by excess weight: A randomised controlled feasibility trial (Shape Up-LD).

BACKGROUND: The aim was to pilot an adapted manualised weight management programme for persons with mild-moderate intellectual disabilities affected by overweight or obesity ('Shape Up-LD'). METHOD: Adults with intellectual disabilities were enrolled in a 6-month trial (3-month active intervention and 3-month follow-up) and were individually randomised to Shape Up-LD or a usual care control. Feasibility outcomes included recruitment, retention, initial effectiveness and cost. RESULTS: Fifty people were enrolled. Follow-up rates were 78% at 3 months and 74% at 6 months. At 3 and 6 months, controlling for baseline weight, no difference was observed between groups (3 months: β: -0.34, 95% confidence interval [CI]: -2.38, 1.69, 6 months: β: -0.55, 95%CI -4.34, 3.24). CONCLUSION: It may be possible to carry out a trial of Shape Up-LD, although barriers to recruitment, carer engagement and questionnaire completion need to be addressed, alongside refinements to the intervention

One-to-one volunteer befriending to reduce symptoms of depression in people with intellectual disability: a feasibility RCT

BACKGROUND: Little is known about the effectiveness of befriending for people with intellectual disability and whether or not befriending improves depressive symptoms and social outcomes. OBJECTIVE: This pilot trial aimed to assess the feasibility and acceptability of conducting a future full-scale randomised controlled trial of one-to-one befriending for people with intellectual disability who had depressive symptoms. DESIGN: This was a parallel-group, two-armed randomised controlled trial incorporating an exploratory economic analysis and a mixed-methods process evaluation. Outcome assessments were conducted at baseline and at 6 months post randomisation by a research assistant who was blind to allocation. We aimed to approach 50 participants, with a view to recruiting 40. SETTING: Participants with intellectual disability were recruited from one NHS trust and from referrals to two community befriending services. The intervention was delivered by community befriending services. PARTICIPANTS: Adults with mild or moderate intellectual disability with a score on the Glasgow Depression Scale for people with a Learning Disability of ≥ 5 were included. Those attending a day service/college for ≥ 3 days a week were excluded. Volunteers were aged ≥ 18 years and had no history of prior convictions. INTERVENTION: Participants in the intervention group were matched with a volunteer befriender and were expected to meet once per week for 1 hour, over 6 months. Volunteers recorded activities in a logbook. Volunteers received training and regular supervision. Both groups received usual care and a resource booklet of local activities. MAIN OUTCOME MEASURES: The feasibility outcomes and progression criteria were recruitment of at least 70% of participants approached; matching of at least 70% of participants in the intervention group to a volunteer; a dropout rate of < 30% of participants and volunteers; adherence to the intervention (10 meetings between pairs); acceptability of the intervention; and feasibility of collecting data on costs and resource use for an economic evaluation. Changes in depressive symptoms (primary clinical outcome: Glasgow Depression Scale) and self-esteem, quality of life, social participation, social support, health-related quality of life and service use were recorded at 6 months. Outcomes in volunteers were also assessed. RESULTS: We recruited only 16 participants with intellectual disability (40% of target) and 10 volunteers. Six of the eight (75%) participants in the intervention group were matched with a befriender and there was good adherence (mean number of meetings attended 11.8; range 1–21 meetings). Going to a cafe/restaurant and having a conversation were the most frequent activities. All participants were retained at follow-up, but two volunteers dropped out. Trial procedures and the intervention might be acceptable, but modifications were suggested. Data on costs and resource use were obtained, but there were discrepancies in the health-related quality-of-life data. LIMITATIONS: Delays to the study prevented the use of alternative recruitment strategies and the planned 12-month follow-up could not be completed. CONCLUSIONS: Recruitment was not feasible, but other feasibility outcomes were more positive. FUTURE WORK: Evaluating befriending for people with intellectual disability could be explored through alternative study designs, such as observational studies. TRIAL REGISTRATION: Current Controlled Trials ISRCTN63779614. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Public Health Research programme and will be published in full in Public Health Research; Vol. 9, No. 10. See the NIHR Journals Library website for further project information