Family and community in the lives of UK Bangladeshi parents with intellectual disabilities

Background: Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England. / Method: Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes. / Results: Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated. / Conclusions: Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent

Self-Disclosure and Social Media Use among Younger and Older People with Dementia: An Internet-Mediated Mixed-Methods Study

Social media can facilitate self-disclosure of a stigmatized identity. This mixed-methods study explores self-disclosure by people with dementia on social media, comparing patterns and purpose of use by those aged 65 and above versus those aged under 65. Of 143 internet-using respondents of an online survey, 77 (aged between 44 and 88 years) were users of social media. Facebook was the most commonly used platform (95%), followed by Twitter, Instagram, LinkedIn, YouTube, and TikTok. People with dementia aged under 65 used more platforms and used social media more frequently than older counterparts [χ2 = 5.58, p = .031]. Content analysis of open-ended questions, validated and extended through qualitative interview data, showed younger users shared dementia-related information for purposes of advocacy and awareness whereas older users prioritized the dementia journey. Social media gives people with dementia a voice to share their experiences, raise awareness, and support themselves and other individuals affected by the condition

The experiences of high intensity therapists delivering cognitive behavioural therapy to people with intellectual disabilities

Background People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies (IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy (CBT) to individuals experiencing mental health problems, although its effectiveness for people with ID, when delivered within IAPT, is unclear. Method Ten high-intensity therapists took part in semi-structured interviews, analysed using thematic analysis, regarding their experiences of delivering CBT to people with ID in IAPT. Results The rigidity of the IAPT model appears to offer a poor fit with the needs of people with ID. Therapists appeared uncertain about how to modify CBT and highlighted training and service development needs. Conclusions Findings suggest barriers to accessing IAPT largely remain unaddressed where people with ID are concerned. Services may need to reconsider what constitutes appropriate reasonable adjustments to ensure equitable access

Development of stigma-related support for autistic adults: insights from the autism community

Many autistic adults experience public stigma and some internalise this stigma with negative effects on their mental health. While efforts to reduce public stigma are paramount, change can be slow, and interventions to prevent internalised stigma may also be needed. Using a mixed methods online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the UK on whether a stigma-related support programme for autistic adults is needed and, if so, what it should ‘look’ like. Quantitative data (summarised descriptively) showed that most participants felt it was important for autistic adults to have support in managing stigma and revealed diverse preferences in terms of programme delivery, underscoring the need for flexibility. Using reflexive thematic analysis, four main themes were identified from the qualitative data: (1) ‘We need to change society not autistic people’; (2) ‘Stigma is difficult to manage alone’; (3) ‘Focus on positive, practical support’; and (4) ‘There is no one size fits all approach’. We discuss the important implications our findings have for how future interventions in this area are framed and delivered

Stigma among UK family carers of people living with dementia

Background Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia. Aims To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia. Method The FAMSI was tested with 70 carers of people living with dementia. They also completed a measure of self-esteem. Results The FAMSI demonstrated some good preliminary psychometric properties. Carers endorsed stigma by association more so than affiliate stigma constructs, suggesting that carers were aware that others viewed or treated them in a stigmatising fashion but did not endorse internalised consequences of this as much (e.g. behavioural or affective affiliate stigma). Conclusions The FAMSI offers new avenues for understanding the contribution of stigma to caregiver burden in dementia. It also captures the positive aspects of caregiving, which may mitigate internalised stigma in family carers, and has good potential for evaluating stigma-neutralising interventions in dementia care

'Who, When, How to Share':Pilot study of a new disclosure decision-making programme for autistic adults

'Who, When, How to Share' is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further.</p

Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia

OBJECTIVES: People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure. METHODS: Community-dwelling adults living with dementia in the Netherlands (n = 40) and England (n = 40) completed either the English versions or the Dutch translations of the Comfort with Disclosure scale and three stigma measures (Stigma Impact, Stigma Stress, and Secrecy Scale). We established the psychometric properties of the stigma measures and conducted correlation and regression analyses. RESULTS: Internal consistency was good to excellent for all measures in the Dutch sample. Small but significant differences were found between the Dutch and English samples on the total score of the Stigma Impact Scale and its subscale social isolation. Age was negatively associated with comfort disclosing to family, and desire for secrecy was negatively associated with comfort disclosing to both family and friends. CONCLUSIONS: The psychometric properties of the Dutch scales were satisfactory. Many people living with dementia would feel comfortable disclosing their diagnosis to family and friends, but stigma experiences can greatly affect this decision. Cross-cultural differences in stigma experiences in persons with dementia require further investigation

The nature of decision-making in people living with dementia: a systematic review

The objectives of this systematic review were to: 1) understand how people living with dementia are involved in making decisions; 2) explore the different decisional styles and domains of decision-making that people living with dementia experience and 3) identify what influences the level of decisional involvement of people living with dementia. A systematic review of literature identified studies from Medline, PsycINFO, HAPI and CINAHL databases. Search terms related to decision-making and dementia. Qualitative and quantitative research designs were included. Appraisal of included studies was done using quality ratings. All studies focused on how decision-making took place. Extracted findings were synthesised narratively with concept mapping, conceptualisation and an exploration of connections between studies to develop an overall model of decision-making involvement Fifteen studies fully met the eligibility criteria (thirteen qualitative and two quantitative). All studies had moderate ( = 10) to high ( = 5) quality ratings. Participants were predominantly people living with dementia ( = 13), Parkinson's disease and stroke. The model of decision-making encompasses four decisional styles (managed autonomy, mutual, reductive and delegated) determined by different degrees of involvement from the person living with dementia and their supporter. The decisional style implemented was influenced by the presence or absence of background (the Freedom of Choice framework) and contextual factors (risk, relationships and resources). Decision-making in dementia is complex and influenced by many factors beyond cognitive impairment alone. This review indicates that decision-making in dementia takes place through decisional styles, determined by unique levels of involvement from people living with dementia and their carers

Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers

Background People with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years. Method and Main Findings Twenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented. Conclusion Despite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability