"They don't think I can cope, because I have got a learning disability ": Experiences of stigma in the lives of parents with learning disabilities.

BACKGROUND: Parents with learning disabilities report facing a widely held 'presumption of incompetence', placing them under pressure to prove their parenting competence. In collaboration with a learning disability theatre company, an inclusive research methodology explored experiences of parenting with learning disabilities, with a specific focus on the operation of stigma in parents' lives. METHOD: Interviews with 17 mothers and 5 fathers who self-identified as having learning disabilities were co-facilitated by learning-disabled co-researchers, and analysed using thematic analysis, with input from people with learning disabilities. RESULTS: Thematic analysis generated four key themes; (1) positions of powerlessness, (2) assumptions of incompetence, (3) challenging assumptions and proving competence and (4) claiming power. CONCLUSION: Parents reported experiencing stigma and disempowerment within their networks, yet continued to embrace their valued parental identity and drew strength from involvement with self-advocacy organisations. The research informed arts-based performance pieces and resources aimed at training professionals and raising public awareness.

Fatigue, executive function and psychological effects in children with immune thrombocytopenia: a cross-sectional study.

Childhood ITP is often considered to be a relatively mild haematological disorder, with only a minority of patients requiring treatment for troublesome bleeding. Over recent years, wider effects of the condition have been identified in some adults, particularly relating to fatigue and cognitive impairment. In this study, we sought to investigate such effects in a group of children with ITP and further our understanding of their psychological profile. Children attending routine haematology outpatient clinics and their parents were asked to complete standardised questionnaires designed to assess a range of psychological and cognitive factors. Although the majority of children had some scores within the normal range, a significantly high proportion had difficulties with fatigue (70·6%), emotional and behavioural symptoms (25·7%) or executive functioning (19·4%). Quality of life and subjective evaluation of the illness (appraisal) correlated significantly with each of these domains, but bleeding severity and platelet count did not. Our findings provide valuable insight into the broader impact of childhood ITP, which could aid in providing holistic care, potentially contribute to decisions regarding medical treatment, and guide future research.

An initial validation of a new quality of life measure for adults with intellectual disability: The Mini-MANS-LD.

There is an appropriate increasing focus on the need to ensure the voices of people with intellectual disability are captured as part of assessing individuals' quality of life; however, there remains a lack of a consensus on ways to achieve this. This article describes the development of a self-report measure of quality of life for people with intellectual disability, the 'Mini-MANS-LD', based on the concepts of Maslow's hierarchy of needs. Following use with 33 individuals with intellectual disability, the Mini-MANS-LD was found to have acceptable psychometric properties, including moderate congruent validity and acceptable internal consistency. Administrators' feedback suggested good acceptability and feasibility, and the measure was relatively quick to administer, easy to use and acceptable to service users. Despite a small sample size, this initial study suggests that the Mini-MANS-LD may present a conceptually relevant, feasible and acceptable self-report measure of quality of life for people with intellectual disability.

'We want to be parents like everybody else': stories of parents with learning disabilities.

OBJECTIVES: This project represents a unique collaboration between creative and research processes using an inclusive qualitative methodology. METHOD: Semi-structured interviews with five mothers and three fathers with learning disabilities were led by learning disabled researchers, and thematic analysis conducted with input from people with learning disabilities. RESULTS: Five main themes are presented; (1) subjective experiences of becoming parents, (2) perceptions that other people assume people with learning disabilities are incompetent parents, resulting in a need to prove worthiness, (3) experiences of services, (4) overcoming 'knock-backs' and (5) support for the rights of other parents. An additional subgroup analysis is presented: fathers feel 'left out'. CONCLUSION: Parents felt criticized by others, who they felt questioned their competence as parents unfairly by comparison to those without learning disabilities. The collaboration between academic research and an inclusive theater group allowed dissemination of parents' stories to wider public, and professional, audiences through creative performances.

Becoming a mother: Supported decision-making in context.

Little is known about how women with intellectual disabilities make decisions in relation to pregnancy. Social support is important for mothers with intellectual disabilities in many areas. This study explored how the support network influenced the decision-making of women with intellectual disabilities in relation to pregnancy. The study extended previous research to include the multiple perspectives of mothers, personal and professional support network. A model of decision-making was constructed, with implications of how services approach working with mothers with intellectual disabilities. Using a grounded theory methodology, three mothers with intellectual disabilities, two of their family members and six professionals were interviewed about their experiences of decision-making in relation to pregnancy. The results suggested that the quality of a woman's relationships were key to facilitating decision-making. The results highlighted the need for services to focus on creating supportive working relationships with mothers and other services involved in the parenting assessment process.

British Attitudes Towards Sexuality in Men and Women with Intellectual Disabilities: A Comparison Between White Westerners and South Asians.

Although sexuality is a fundamental aspect of human existence, public attitudes towards the sexuality of people with intellectual disabilities may vary. In particular, different ethnic communities may have different perspectives. These differing perspectives may impact on the opportunities and support available for people with intellectual disabilities to express sexuality within 'normalized' life experiences. Despite the South Asian population being one of the largest minority ethnic groups residing within the UK, few studies have aimed to understand how South Asian attitudes towards the sexuality of people with intellectual disabilities may differ from White Western perspectives. This study used an online questionnaire to investigate public attitudes towards the sexuality of people with intellectual disabilities within a UK sample (n = 331). Attitudes between people from White Western (n = 184) and South Asian backgrounds (n = 147) were compared with the use of five scales measuring attitudes towards sexuality. Whilst overall attitudes appeared to be generally positive, South Asian participants were found to have significantly more negative attitudes towards the sexual control and sexual rights of people with intellectual disabilities compared to White Westerners. These differences remained significant even after factors known to influence such attitudes were taken into consideration. These findings implicate the need to develop culturally sensitive interventions to improve knowledge and awareness of sexual needs of people with intellectual disabilities. This paper discusses these implications further, the limitations of the present study and suggested directions for future research.

Quality of life and illness beliefs in individuals with early psychosis.

PURPOSE: Quality of life (QoL) has become an important outcome measure in early psychosis. This study examined associations between illness beliefs (how individuals perceive their mental health problems), symptom factors and QoL in an early psychosis population. METHODS: Eighty-one individuals with early psychosis completed a battery of questionnaires measuring QoL, illness perceptions, psychotic and affective symptoms. RESULTS: QoL was significantly associated with certain illness beliefs, namely treatment control and consequences of psychosis. Lower levels of QoL were associated with higher depression, anxiety and general psychopathology. QoL was found to be predicted by key illness beliefs. CONCLUSIONS: Causality has not been fully established, but these results suggest that beliefs about mental health problems may have a direct impact on outcome, and point towards possible targets for intervention, such as challenging illness-related appraisals. This is consistent with both general cognitive models of psychosis, and Cognitive Behaviour Therapy for this client group.

Routine evaluation in first episode psychosis services: feasibility and results from the MiData project.

BACKGROUND: Early intervention services (EIS) for psychosis are becoming widespread. Structured methods of assessment are advocated in these services, but a consensus is still needed on a package of measures with good psychometric properties that is feasible and reliable for routine use in this setting. METHODS: A computerised assessment package (MiData) was designed to provide clinicians with easy-to-understand feedback about clients' progress and to allow evaluation of the whole service for both audit and research purposes. Core areas include symptoms, duration of untreated psychosis (DUP), pathways into care, social functioning, and substance misuse at initial intake and annually thereafter. RESULTS: MiData has been adopted by EIS throughout London and in some other centres. Baseline data are now available regarding 533 first-episode psychosis patients who presented to 8 London teams. The completeness of the data varied across teams and measures, with fullest completion for sociodemographic data (99% on some measures) and poorest for DUP. The average London EIS client is male, single, unemployed and comes from Black or Minority Ethnic group. Most (70%) demonstrated poor social functioning at intake, over a third (38%) reported substance abuse problems and 23% had harmed themselves or others in the previous 6 months. CONCLUSIONS: MiData provides a clinician-friendly system of evaluating first-episode psychosis services but requires further refinement and dedicated resources to improve completion rates. This method of collecting routine data is of use to clinicians, managers, health service researchers and commissioners and potentially it may enable naturalistic comparisons between different models of care.