Perceptions about psychosis and psychiatric services: a qualitative study from Vellore, India

Each culture influences the perceptions of illness and pathways to health care that its members follow. Non-biomedical beliefs about psychosis and treatment are reported from the developing world. This study explored people’s perceptions on psychosis to understand local perceptions of the condition. Focus group discussions were conducted with people who have relatives with psychosis (in five focus groups), with members of the general public (in four focus groups), and with patients who had recovered from psychosis (one group) in Vellore, South India. These discussions were recorded, transcribed and analyzed. Participants recognized psychosis as an illness category, and viewed indigenous healing methods as complementary to allopathic treatments. Multiple and apparently contradictory beliefs on different aspects of psychosis were often simultaneously held by participants. People in the community were more likely to express negative views about mental illness. Relatives of patients with psychosis wanted more support from mental health professionals and community in combating stigma against mental illness. Results of this study reveal the complex nature of illness perspectives among patients with psychosis, their relatives and community. Bio-medical and indigenous beliefs are simultaneously held by a significant number of people who often seek help from both modern and traditional health systems at the same time. The results indicate the need for better understanding of local perceptions of psychosis.     

Recruitment to intellectual disability research: a qualitative study

Background Difficulties in the recruitment of adults with intellectual disability (ID) to research studies are well described but little studied. The aim of this study was to investigate the difficulties in recruiting to a specific research project, in order to inform future recruitment to ID research. Methods Individual semi‐structured interviews were held between September 2009 and May 2010 with people who had been involved as intermediaries in recruitment to the research project. These were transcribed verbatim and were independently analysed by two researchers using the Framework approach, who then agreed upon the key emerging themes. Results Ten interviews were analysed. A number of themes arose, including participant factors (interview anxiety, difficulties in understanding the concept of research, worry about negative feedback), the importance of the researcher (using a personal approach, meeting potential participants prior to recruitment) and motivators [enjoyment of the research interview (participant), obtaining a medical assessment (carer)]. The themes were then used to generate strategies to improve recruitment to ID research: these include the research team applying a more personal approach, developing the recruitment process to allow for multiple meetings with potential participants, and considering motivators for both participants and carers. Conclusions This study has used the experiences of intermediaries to identify strategies for improving recruitment to future ID research. This has implications in terms of both time and money. However, successful recruitment is essential to ID research, and we hope that the study will be used by ID researchers to review and improve their recruitment processes.     

Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives

Background   Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and also examined their perceptions of impediments to achieving sexual autonomy.
Method   Thirty-two participants (20 male, 12 female) attending an ID service participated in focus groups delineated by gender and age group (13–17 years; 18–30 years; 31+ years).
Results   Analysis of the focus groups showed that service users, especially those over the age of 18 years, had an understanding of their sexual rights but also identified a number of social and cultural barriers that they felt prevent them from achieving sexual autonomy. Those under the age of 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy and sexual anatomy, but aspired to relationships and marriage similar to those over the age of 18 years. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits of such education appeared most enduring for those over 18 years.
Conclusion   Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID.     

Offenders with intellectual disability: a prospective comparative study

BACKGROUND: Intellectually disabled offenders (IDO) are a poorly served and under-recognized group, who are likely to require long-term specialist treatments and interventions. METHOD: This prospective study investigated the characteristics and factors that influence outcome in this group, with particular reference to therapeutic interventions. Sixty-one individuals were identified from contact with either (1) specialist health and social services for people with intellectual disability (ID) or (2) nonspecialist services in the criminal justice or (forensic) mental health/social service systems. The participants were assessed at baseline and after a mean of 10 months in order to compare recidivism rates and the impact of therapeutic interventions. RESULTS: The findings suggest that IDO start offending at an early age, that they frequently have a history of multiple offences, and that sex offending and arson are over-represented offence types. Those participants recruited from nonspecialist ID services had significantly higher IQs and were less likely to have had contact with community social and health support agencies. Despite the high rates of psychopathology, there was little evidence for efficacy of therapeutic interventions, which, where offered, appeared to be of a nonspecific nature. At second interview, approximately half of the sample had re-offended.     

Children with intellectual disability in rural South Africa: prevalence and associated disability

Background The objective of the present study was to determine the prevalence of intellectual disability (ID) and its associated disabilities in rural South African children aged 2–9 years. It was undertaken in eight villages in the district of Bushbuckridge, Northern Province, South Africa. Methods A two‐phase design was utilized. The first phase involved screening children on a house‐to‐house basis by interviewing mothers or caregivers using an internationally validated questionnaire for detecting childhood disability in developing countries. The second phase consisted of a paediatric/neurodevelopmental assessment of the children who screened positive. Results A total of 6692 children were screened; 722 (10.8%) had a paediatric evaluation and 238 children were diagnosed with ID, giving a minimum observed prevalence of 35.6 per 1000 children in this population. The prevalence of severe and mild ID was 0.64 per 1000 and 29.1 per 1000 children, respectively. The male:female ratio of children with ID was 3:2. In the affected children, a congenital aetiology for the ID was determined in 49 subjects (20.6%), an acquired aetiology in 15 (6.3%) and the aetiology was undetermined in 174 children (73.1%). Epilepsy (15.5%) and cerebral palsy (8.4%) were the commonest associated disabilities. Conclusion The present study represents the first data on the prevalence of ID and associated disabilities in rural South African children. The prevalence of ID was comparable with results from a study performed in one other African country (Zambia) as well as those from other developing countries. The data provide an initial factual insight into ID and its associated disabilities for healthcare, social service and educational policy planners. This study provides a basis for the initiation and development of appropriate and integrated services for the best possible care of individuals affected with these disabilities, and for their possible prevention.     

Epilepsy and intellectual disability

A Medline and Psychline literature review of epilepsy in people with intellectual disability was performed. The review has highlighted the importance of the impact of epilepsy on the lives of individuals and their families, affecting physical morbidity, leading to an increased mortality and increasing the care‐giving burden. Interventions with a strong evidence base are mainly pharmacological with an increasing body of work on the novel antiepileptic drugs. Surprisingly little research exists into the quality of service provision for this population. The authors suggest three areas for future work: (1) an increasing application of research methodologies such as direct observation and qualitative studies into this field; (2) an exploration of the broad impact of treatment and (3) the possibility that epilepsy is a barrier to care provision.     

Perspectives of patients and relatives about electroconvulsive therapy: a qualitative study from Vellore, India

BACKGROUND: There has been little systematic study from developing countries on the perspectives of patients and their relatives about electroconvulsive therapy (ECT). This study attempted to ascertain the views of patients and their relatives on the possible benefits and adverse effects of ECT. METHOD: Qualitative methodology using semistructured interviews, with the Short Explanatory Model Interview as the basis, was used to interview 52 patients who received ECT and their relatives before and after a course of the treatment. The most eloquent 10 among them were chosen for further in-depth interviews. Professional perception of efficacy and cognitive adverse effects were obtained from the patients' medical records. RESULTS: More than half of the recipients were not aware of the details of ECT even at the end of the course but were not unhappy about receiving ECT. Most relatives believed in the disease model, considered the illness serious, felt that enough information about the treatment was provided, knew about its benefits and memory problems, and felt that they were offered an alternative choice of treatment, but also admitted to perceiving coercion. All relatives had signed the consent for treatment, and most were not unhappy with ECT. There were significant differences in perception between patients and relatives and between the perceptions of patients admitted to the hospital involuntarily and of those who agreed for admission. The difference between the clinicians' and the relatives' perceptions of benefits and cognitive adverse effects was not statistically significant. CONCLUSIONS: The results of the study highlight the complex issues and contradictions in the process of providing information and obtaining consent for ECT.     

Prevalence of intellectual disability: a comprehensive study based on national registers

Background Based on standard social benefit registers, the prevalence of intellectual disability (ID) in Finland is estimated to be 0.6%, while epidemiological surveys yield 1.1%. Combining several registers, our aim was to find a more reliable estimate of the prevalence of ID, especially among children and adolescents. This is important when special or inclusive general services are planned to meet the various needs of people with ID. Method A survey based on eight national health and social benefit registers. Results Combining different registers yielded a mean ID prevalence of 0.70% (95% CI 0.69–0.70%), with marked differences according to sex and age group (range 0.38–0.96%). Capture–recapture analysis gave higher prevalence estimates (range 0.57–1.08%). Conclusions When several health and social benefit registers are surveyed, the estimated prevalence of ID increases, approaching that obtained in epidemiological surveys.     

Perspectives on pain and intellectual disability

Historically, individuals with intellectual disability (ID) have been excluded from pain research and assumed to be insensitive or indifferent to pain. The weight of the evidence suggests that individuals with ID have been subject to practices and procedures with little regard for their ability to experience or express pain. A number of issues central to improving understanding of pain in ID will be introduced and current research related to the definition of pain and its social context, underlying sensory and metabolic systems and factors influencing judgments about the ability to experience pain will be reviewed. Accumulating evidence from interdisciplinary research designed to improve assessment, understand individual differences, and evaluate bias and beliefs about pain suggests that new perspectives are emerging and beginning to shape an innovative frontier of research that will ultimately pay tremendous dividends for improving the quality of life of individuals with ID.     

Psychiatric diagnosis in persons with intellectual disability in India

BACKGROUND: This study examines the rate of psychiatric diagnosis as per ICD-10 and Reiss Screen for Maladaptive Behaviours (RSMB), and distribution of psychiatric diagnosis with regard to the severity of intellectual disability (ID). It also explores the degree of agreement between Reiss screen and clinical diagnosis (ICD-10) in relation to dual diagnosis. METHODS: In this study Intelligence (IQ) and Social Quotient (SQ) were estimated on Indian adaptation of Binet's scale and Vineland Social Maturity Scales, respectively, in 60 consecutive persons with ID. Both ICD-10 and RSMB were used independently to determine the presence of psychiatric diagnosis. RESULTS: Clinically, according to ICD-10, about 60% of the sample was found to have dual diagnosis as compared to 48% on RSMB. Agreement between ICD-10 and RSMB about psychiatric comorbidity was 82%. Commonest psychiatric diagnosis was unspecified psychosis followed by bipolar affective disorders. CONCLUSION: Persons with ID do suffer from various psychiatric disorders. RSMB is a useful tool for differentiating between psychiatric problems and maladaptive behaviours. Hence RSMB can be used in the Indian context.     

Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability

Background   Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and integration. However, previous studies have shown that this does not always lead to the formation of social relationships. To date few studies have looked at how having an ID leads to impoverished social networks. This study aimed to do this by contrasting the social relationships of people with physical disabilities (PD) and people with ID.
Methods   Two groups of participants were recruited; 30 people with mild ID and 17 people with PD. Social and functional support networks were assessed, in addition to life experiences. Between and within group differences were then explored statistically.
Results   Adults with ID had more restricted social networks than PD, despite being involved in more activities. Social support for adults with ID was mainly provided by family and carers and few relationships with non-disabled people were identified. In contrast adults with PD had larger social networks than had been reported in the mainstream literature and had a balance of relationships with disabled and non-disabled people.
Conclusions   The results suggest that there are additional processes attached to having an ID, which lead to continued impoverished lifestyles. The findings also endorse other work that suggests being physically integrated and engaged in a wide range of activities does not guarantee good social and emotional support.     

Autism and intellectual disability: a study of prevalence on a sample of the Italian population

Background In 1994, the American Association on Mental Retardation with the DSM‐IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD‐10. Prevalence of PDD in the general population is 0.1–0.15% according to the DSM‐IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments. Method Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD‐MRS) seems to be a very good instrument for classifying and diagnosing PDD. Results The application of the PDD‐MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%. Conclusions The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID.