This narrative review of the research literature presents a summary about the key issues facing people with intellectual disability (ID) who identify as lesbian, gay, bisexual, transgender, intersex or questioning (LGBTIQ). The aim of this review was to consolidate research of the topic; to identify whether any pilot studies reporting social/sexual/educational interventions had been published; and to offer some perspective on the type of future research required to better inform policy, practice and theory that may lead to better outcomes for people with ID who identify as LGBTIQ. Almost all of the research literature on the topic is either exploratory or descriptive which serves to outline the range of issues faced by people with ID who identify as LGBTIQ. Urgently needed as the next step, however, is a concerted effort to conduct a range of innovative educational and social interventions with collection of targeted and appropriate outcomes data.
The aim of this study was to explore how public health policy in the United Kingdom was reflected in community intellectual disability nurses’ (CIDNs)’ job descriptions and person’s specifications. The role of CIDNs has evolved due to policy changes. As these roles evolve, job descriptions and person specifications are important in highlighting employer’s expectations staff, priorities, and professional values of their employees. This study involved an exploratory documentary analysis of n = 203 CIDNs’ job descriptions and person specifications in the context of role theory. The CIDNs’ public health roles identified in this study are health education, health protection, health prevention, health surveillance, and health promotion. Key policies themes were intellectual disability health access, public health strategies, policy evaluation/redesign, and public health policy. There is a lack of public health role clarity and inconsistency in role expectations across organizational boundaries in the United Kingdom.
A natural experiment contrasted the self-rated well-being of people with intellectual disabilities (n = 75) and those with enduring mental health problems (n = 44) after they moved to new accommodation and support options, while others remained in congregated settings or living in the family home. Most support staff also provided well-being ratings. In personalized arrangements, personal well-being was significantly higher than in congregated settings; particularly for people with intellectual disability who had higher support needs compared to people with mental health problems. Moving to a group home also brought some improvement in the well-being ratings of people with intellectual disability but only for those with higher support needs. Such moves seemed to lead to a decline in well-being for those with mental health problems. There were marked discrepancies between ratings given by the person with those of staff. The well-being measure shows promise for use in further comparative and longitudinal studies.
This article explores the self-constructions of young adults with mild intellectual disabilities in talk about their everyday living and how parents and professionals construct young adults with disabilities in talk about their involvement in transition processes. The analysis is related to an interpretive tradition and conducted based on individual interviews with four young adults with mild intellectual disability, five parents of young adults with mild intellectual disabilities and five professionals in the adult service system. The findings show that the young adults define themselves as actors in their own lives, while the parents recognize young adults with mild intellectual disabilities as both actors with resources and actors in need of assistance. Professionals in the adult service system, however, appear to rely on an identity perspective that might hamper young adults’ agency positioning and opportunities to define themselves and influence their future lives.
Children with intellectual disabilities (IDs) are frequent users of the healthcare system, yet nurses report they receive little education regarding specialized medical, social and relational needs of this population. Therefore, parents take on a greater burden of care while their child is in hospital than do parents of typically developing children. This article reports findings from a qualitative study that used feminist poststructuralism to examine the hospital experiences of eight children with IDs, 17 mothers and 12 nurses. Nurses and mothers reported a lack of knowledge and education regarding the healthcare of children with ID and identified a need for more education. Participants noted that physical care of children with ID was prioritized as more important than communication and relationships. This unintentional prioritization was socially and institutionally constructed through stigma and stereotypes about people with IDs. Nurses and parents offered suggestions to access and increase ID education for healthcare professionals.
Little research has been carried out on the physical health of people with autism spectrum disorder (ASD). From the studies conducted with both children and adults, few studies have moved beyond retrospective record analysis and survey and conducted health assessment. The majority of the studies are from the United States of America with a small number conducted in Europe. A scoping review was conducted to determine what is known of the physical health of adults with ASD and to identify research gaps. In addition to studies of adults, this review includes studies of children to determine possible health trajectories. From the findings, it can be stated with confidence that people with ASD have a high rate of comorbidity and increased risk for chronic disease.
We examined cognitive deficits in problematic drinkers with and without mild to borderline intellectual disability (MBID). Problematic drinkers were expected to show a significantly lower estimated performance IQ (PIQ), but not a lower estimated verbal IQ (VIQ), compared to light drinkers. Participants (N = 474) were divided into four groups based on IQ and severity of alcohol use-related problems. IQ was estimated using (a short form of) the Wechsler Adult Intelligence Scale third edition. Severity of alcohol use-related problems was assessed using the Alcohol Use Disorder Identification Test. Overall, there were no significant differences between light and problematic drinkers on estimated VIQ. Within the group without MBID, estimated PIQ was significantly lower. Estimated PIQ was not lower in problematic drinkers with MBID compared to light drinkers with MBID. The results are indicative of cognitive deficits in problematic drinkers without MBID. Screening for cognitive deficits with additional instruments is advised.
People with intellectual disabilities are entitled to equitable access to psychological support. Traditional therapeutic approaches often rely on a person’s ability to verbally articulate a description of their life, which can be particularly difficult for emotionally salient information.
A systematic literature review was undertaken to determine the evidence base underpinning the use of participant-produced photography within therapeutic settings. Evidence across a range of specialisms was examined in order to extrapolate areas of best practice and make recommendations for its implementation alongside people with intellectual disabilities.
A systematic search of peer-reviewed journals identified 13 relevant documents. Participant-produced photography showed promise, although evidence pertaining specifically to people with intellectual disabilities was sparse (n = 2).
Participant-produced photography within therapeutic settings shows promise for people with intellectual disabilities. Methodological limitations made it difficult to derive firm conclusions regarding the effectiveness of different approaches. Implications for clinical and research practice are discussed.
We aimed to learn about the value of family placements from the perspective of parent-carers who provide them to nurse students via a Scottish university Family Placement Scheme.
Qualitative interviews were conducted with seven parent-carers who provided a family placement over two academic years. Descriptive data was analysed, organized into themes and subject to content analysis: parents’ descriptions of caring; their perceived value of family placements; and their views and experiences of participation in intellectual disability nurse education.
Family placements are beneficial to nurse students and families with children with an intellectual disability. Description of wider aspects of caring was provided, offering insight into learning experiences of students on placement.
This model of learning provides opportunities for students to appreciate the reality of caring for a relative with an intellectual disability at home. Students develop their practice skills for working in partnership with family carers.
US surveys report higher prevalence of obesity in adults with intellectual disability. Health records of 40 adults with intellectual disability were retrospectively reviewed for data on health status, problem lists with International Classification of Diseases, Ninth Revision codes, medication lists, and health encounters over 18 months. Mean age was 49.5 years, 53% were males. Prevalence of overweight, obese, and morbidly obese was 28%, 58%, and 23%, respectively. Primary diagnosis was intellectual disability (50% mild, 33% moderate, 10% severe, and 8% profound), 85% had mental health disorders (67.5% with affective or mood and 42.5% had anxiety disorders). On average, residents consumed 2.63 psychotropic medications daily with additional 5.75 medications for axis 3 diagnoses and made 39.2 health visits over past 18 months. Our analysis supports increased prevalence of overweight/obesity, higher comorbidities, dual psychiatric diagnosis, substantial medication consumption, and higher utilization of health-care services in adults with intellectual disabilities. Targeted health interventions are therefore essential to improve their health and quality of life.
Respite aims to alleviate the stress and burden of caring for someone with an intellectual disability and/or autism. Respite can take place in a number of different ways, but most commonly occurs in a residential setting. Based on survey and interview data with carers (CAs), service users and stakeholders (STs) in a northern city in England, this article explores some of the perceived or actual barriers to availing ‘non-residential’ respite. A number of barriers to non-residential respite are identified. Residential respite appears to be the default conceptualization of ‘respite’ for carers, service users and stakeholders. Persuading carers, service users and stakeholders to give up the familiarity and safety of residential respite in favour of a non-residential alternative will be challenging unless those involved are more informed. Limitations and directions for future research are suggested.
The prevalence of obesity appears greater in people with intellectual disabilities than those in the general population. This study aimed to examine the nutritional intake and anthropometric status of individuals with intellectual disabilities. Participants aged 16–64 years were recruited from intellectual disability service provider organizations (n = 131). Data were collected using questionnaires; 4-day food dairies and weight, height and waist circumference measurements. Participants’ mean body mass index (BMI) was 29.4 kg/m2 ± 6.1, 2.4% were underweight, 22.6% were normal weight, 28.2% were overweight and 46.8% were obese. Having a diagnosis of Down syndrome (p = 0.03) was associated with increasing BMI. Increasing waist circumference was associated with increasing severity of ID (p = 0.04). The mean-reported energy intake was 1890 kcal/day. Mean energy intakes from sugar, fat and saturated fat were above recommendations and few participants met micronutrient recommended daily amounts. This study highlights the alarming prevalence of overweight and obesity and poor diet quality of individuals with intellectual disabilities.
Although acknowledging the stress of raising their child with intellectual disabilities, parents also report that their child has brought about many positive changes in themselves and family. This study reports what parents perceive to be a positive aspect of parenting their child, as currently what constitutes a ‘positive’ is unclear. Seven key themes were identified; an increased sense of personal strength and confidence, changed priorities, greater appreciation of life, pleasure in the child’s accomplishments, increased faith/spirituality, more meaningful relationships and the positive effect that the child has on the wider community. Interpretive examination of the themes reveals that the positive aspects identified consist mostly of meaning-focused coping strategies. These enable parents to adapt successfully to the stressful experiences of raising their child and therefore could be amenable to meaning-focused therapeutic interventions for parents with newly diagnosed children or for those unable to identify any positive aspects of parenting their child.
Resilience of parents in the context of raising a child with intellectual disability is gaining attention as a mechanism that addresses their inherent strengths to withstand the potential associated strain. Understanding its underlying factors has applications in fostering their resilience. The present study explored the resilience of parents and its relationship with the impact of child’s disability. A total of 121 parents were assessed using Connor Davidson Resilience Scale and National Institute for the Mentally Handicapped Disability Impact Scale. The results revealed that parenting a child with intellectual disability posed them with both positive and negative experiences. Their evaluations about the condition of the child significantly influenced their resilience. The positive perceptions about the child’s disability operated as a protective element, whereas their negative evaluations acted as a risk element of resilience. The findings have specific importance in designing interventions for families of persons with intellectual disability.
Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of people with PIMD. ISPs for 60 persons with PIMD in the Netherlands were inductively coded and illustrated with quotations. It turned out that every ISP contained information about social contacts. Of all the quotations extracted, 71.2% were about current conditions, 6.2% were about the future and less than 1% concerned actual goals. The social contacts of people with PIMD are mentioned in their ISPs, but this is rarely translated into goals. The results of the current study suggest that attention should be paid to ensuring that professionals understand the importance of social contacts and their application in practice.
Project Panther LIFE is an inclusive postsecondary transition program for students with intellectual disabilities providing university access and participation with the primary goal of employment at program completion. Students in the program receive support from their academic mentors and peer coaches during the academic year. This study examines the skills and activities mentors use during their weekly sessions with students with intellectual disabilities and identifies areas in which mentors may require further support or training. Data analysis revealed major themes related to inclusion, self-determination, and adaptive behavior skills. Upon review of the data, we suggest that mentors need ongoing support from transition programs especially in areas related to encouraging self-advocacy and supporting time management.
The aim of this article is to review the literature related to fathers of people who have an intellectual disability (ID). Electronic databases and citation tracking were used to collate data using key terms such as fathers, adults with an ID, learning disability, mental handicap and developmental disability. Relevant articles were analysed and compared for commonality and difference. Eight themes emerged from the literature: response to diagnosis, varied response to ID, concern for the future, work, roles and relationships, impact of fathers upon child development, fathers and service providers, fathers’ needs and coping strategies. This review of the literature presents areas of similarity and divergence and highlights the lack of information that relates specifically to fathers of adults. There are clear messages to service providers to support the inclusion of fathers and the need for further research in this area is indicated.
A sample of 124 service providers (e.g. mental health professionals, educators, administrators) completed a survey about bullying of individuals with disabilities and the use and perceived effectiveness of resources and strategies to address bullying. Providing support and performing an action in response to bullying were reported to be used more often and were perceived as more effective than education and minimizing/ignoring. Service providers who reported that the individuals they worked with experienced cyberbullying more frequently were more likely to take action and use education. Those who attributed victimization to social differences were more likely to provide support.
This article explores the literature on social connectedness and music for young people with disability. It then critically examines the level of congruence between the reported literature to date and current rights-based disability studies discourse.
A critical interpretive synthesis was used to examine 27 articles referencing the use of music for social connectedness. Areas of focus in the review are the nature of connections being fostered in music programs, the use of voice and collaboration.
The majority of music programs reported on closed groups. Outdated ‘expert’ models of working persist. The use of participants’ voice in the literature is growing, although there is a lack of collaboration and negative reporting.
A shift in thinking heralds greater collaboration with participants, although this could be broadened to include decisions on research agendas, planning and evaluation. There is also need for active fostering of broader socio-musical pathways.
No research has examined vitamin D deficiency among inpatients within forensic intellectual disability services, despite their potentially increased risk. Tests of serum 25(OHD) concentration in blood are routinely offered to patients within the service as part of the admission and annual physical health check. Results were classified as deficient <25, insufficient <50, sufficient 50–75 or optimal >75. Deficient or insufficient patients were offered supplement treatment and retested within 6 months. Levels were compared between groups: level of security and gender. At baseline, 87% of patients were deficient or insufficient, whilst 13% were sufficient or optimal. At follow-up, 53% had sufficient or optimal levels. However, some patients remained deficient (13%) or insufficient (34%) due to non-compliance with treatment. Women appeared more likely to be deficient. High levels of vitamin D deficiency were found among this population. Vitamin D screening and treatment is a simple and effective way of improving the physical health of this population.
Aquatics is an under-researched but possibly appropriate form of activity for people with severe to profound intellectual disabilities (SPIDs).
The current pilot study investigates the suitability of an aquatics programme for service users with SPIDs.
Four service users with SPID completed an 8–12-session aquatics programme. Front-line staff (N = 6) were interviewed after the programme to explore its suitability. A thematic analysis of the interviews was utilized.
The thematic analysis unearthed main themes of effects, facilitators, barriers, strengths and needs.
Aquatics can be an appropriate and beneficial form of physical activity for people with SPIDs, but there are many barriers to participation. Tailored programmes are required. Further investigation of the experiences of people with SPIDs in relation to physical activity is recommended.
Interaction between two people may be construed as a continuous process of perception and action within the dyad. A theoretical framework is proposed in this article that explains the concepts and processes which comprise the interaction process. The article explores the transactional nature of interaction, through analysis of narrative data from two dyads, each comprising a person with severe or profound intellectual and multiple disability and a service worker. The novel application of grounded theory to analyse video data of non-verbal communication data in order to develop the theoretical framework is reviewed. Previously, attuning has been identified as the key process that drives interaction. This article explores the other concepts of the theory proposed, namely, setting, being, stimulus, action, attention and engagement. The article concludes by contrasting this theory of the interaction process with other related concepts and suggests how application of the proposed framework may enhance practice.
There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals.
A multiple case study (n = 4) was conducted. Observations were logged for every contact between professionals and parents during 12 months.
The mean number of contacts a month ranged from 1.9 to 16.7 across the cases. Most of the contacts were with the child’s direct support persons (85.2%) and exchanging information (35.5%) was the most common function. Issues concerning health (28.4%) were the most common subjects discussed. The majority of the mothers’ experiences were positive.
Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.
The number of people with intellectual disability living into old age and developing dementia continues to increase. Dementia presents a wide range of challenges for staff due to progressive deterioration. This article presents the findings from a narrative literature review of professional caregivers’ experiences of caring for individuals with intellectual disability and dementia. Seven electronic databases were searched using Boolean operators and truncation to identify relevant literature. Search results were combined and narrowed to articles relevant to staff working with individuals with intellectual disability and dementia, and 14 articles met the criteria for review. Themes outlined in the review include staff knowledge of dementia, staff training in dementia, caregiving, challenging behaviour, pain management, mealtime support and coping strategies. Overall carers must review and adjust their care delivery and support to people with intellectual disability and dementia, not only in terms of identifying and responding to their health needs but also through collaborative team working within and across services.
The impact on full-time carers of children with intellectual disabilities who exhibit challenging behaviour has been well researched (e.g. Lach et al., 2009; Shah et al., 2010; Wodehouse and McGill, 2009), however, there is to date no published research into the impact of behaviour that challenges on seasonal carers. Five participants who had been employed in summer playschemes for children and young people (up to the age of 18) were interviewed about their experiences of behaviour that challenges. The transcripts were analysed using interpretative phenomenological analysis, which revealed six superordinate themes: the belief in and sanctuary of temporary work, emotional impact, personality and gender, strength through knowledge, communication difficulties and the belief in integration. Seasonal workers discussed suppressing their emotions in order to stay in control of a challenging situation, using coping styles developed through experience or based on personal skills; it is suggested that formalized training, particularly regarding non-verbal communication, would support playscheme workers in the management of and adaption to challenging behaviour.
Decision-makers with limited budgets want to know the economic consequences of their decisions. Is there an economic case for positive behavioural support (PBS)? A small before–after study assessing the impact of PBS on challenging behaviours and positive social and communication skills in children and adolescents with intellectual disabilities and behaviours that challenge was followed by an evaluation of costs. Results were compared with the costs of alternative packages of care currently available in England obtained from a Delphi exercise conducted alongside the study. Children and adolescents supported with PBS showed improvement in challenging behaviours and social and communication skills, at a total weekly cost of GBP 1909 (and GBP 1951 including carer-related costs). PBS in schools for children and adolescents with intellectual disabilities and behaviours that challenge may help to support them in the community with potential improvements in outcomes and also cost advantages.
This study examined how adolescents with mild intellectual disabilities define qualities of friendship and discussed the extent to which these definitions adhere to established definitions of close friendship.
The study was based on qualitative interviews with 11 adolescents in secondary school. The interviews were supplemented with information from six parents. A thematic structural analysis was used to identify themes.
Qualities of friendship were categorized as mutual preference, mutual enjoyment, shared interactions, care, mutual trust and bonding. The criteria for close friendship seem to be fulfilled, albeit to a moderate degree. Closeness and reciprocity appear to be significant in this study, although these features have been considered less relevant within this target group in previous research.
Differences in definitions may explain divergent results compared with other studies, and the need to achieve equivalence in friendship may be another.
This article compares the welfare services for adults with an intellectual disability in three European countries: England, Norway and Sweden. The purpose of the comparison is to develop an understanding of the welfare state and institutional contexts of the country-specific policies and to develop a critical analysis through a comparative method based on selected secondary literature. Typological frameworks of European welfare states are applied as analytic frameworks to enable comparison between the countries. It is argued that there are international policy developments but these are shaped at a national level by different types of welfare states and histories. Through a comparison of similarities and differences, the article suggests that international policy ideas that impact on the lives of people with intellectual disabilities are mediated by different types of welfare states and institutions.
Previous research has highlighted that while involvement in Special Olympics can have benefits for athletes and their families, there can also be many barriers to participation. This qualitative study, which was part of a large mixed-method study, examined the experiences and perspectives of people with intellectual disability, their families and staff who work with them, about Special Olympics Ireland (SOI). A total of 47 participants (15 athletes, 6 non-athletes, 18 family members and 8 staff members) participated in focus group and individual interviews. Supplemental data, gathered as part of the larger study extracted from open-ended survey questions completed by 97 family members also informed this element. Findings revealed four main themes: impact of participation on athletes, impact of involvement on families, barriers to participation and how to enhance participation rates. Involvement in Special Olympics impacted positively on the quality of life of athletes and families. Enhanced availability of user-friendly information and service accessibility were important drivers identified for enhancing participation rates in Special Olympics.
This article reports on the results of a pilot study exploring whether and how the meal situations of persons with intellectual disabilities (PWIDs) in need of help and support during meal situations were affected by an eating aid. This article also analyzes how PWIDs and their assistants perceived their experiences of using an eating aid during meal situations. Data for the study were collected in interviews with PWIDs and their assistants. The results are presented in five themes: independence in the meal situation, motivation to use the eating aid, functions of the eating aid, social aspects of using the eating aid, and design corresponding to intellectual disability. The eating aid’s function, user-friendliness, and the assistants’ attitudes appear to be crucial for using the eating aid. Another important aspect is the introductory and training phase, which must be fundamentally adapted to suit the PWIDs ability to learn and understand. When these aspects are controlled, the eating aid can be a tool for increased independence during meal situations for PWIDs who are unable to move their arms or hands.
Healthcare delivery today reflects a history of change, which has responded to lifestyle changes, cultural diversity, population needs and expectations. In today’s health-care environment it is crucial for health-care professionals to be mindful of cultural factors that affect health. These factors include the intricate interdependent biological, intellectual, psychological, social and spiritual needs of the individuals they work with. However, challenges exists for those who provide healthcare to people with intellectual disability. This article presents the transcultural care challenges for people with intellectual disability, through highlighting the biomedical/sociocultural perspectives of healthcare, communication and inequality experienced by those with intellectual disability. As a population group, people with intellectual disability can often be considered part of a larger culture rather than a culture within itself, and this article endeavours to emphasize that intellectual disability is in itself a coterminous culture. By highlighting intellectual disability as a cultural community within a larger community, requiring a transcultural response to care on several levels health-care professionals can provide culturally compatible care to those with intellectual disability within a transcultural framework to augment a person-centred approach to care.
Knowledge and understanding of how eugenics has historically affected the lives of people with intellectual disabilities is vital if professionals are to mount an effective defence against its contemporary influences. An online survey of European providers of health, social care and pedagogical education and training courses was undertaken to find out how the history of eugenics is taught to those wishing to work in services for people with intellectual disabilities. Two hundred and six educational providers were contacted with a response rate of 35.9% (n = 74). Findings showed that the majority of educational providers recognize the importance of including the history of eugenics in their courses, although fewer feel confident that it is sufficiently well covered to prepare future professionals for their role as protector. Course content differs on both the emphasis given to the different components of this history, time dedicated to its delivery and the extent to which it is used to inform legal and ethical debate. Specific recommendations for developing the way in which this subject area is taught are outlined.
Postsecondary education programs have increased opportunities for students with and without intellectual disabilities to study abroad as inclusive classes. Using open-coding qualitative techniques, the authors examined an inclusive study abroad group’s daily reflective journals during a study abroad trip to London and Dublin. Three shared categories emerged from analysis: personal development, bonding/social inclusion, and learning from English and Irish adults with intellectual disabilities. Each group reported two distinct categories as well. Students with intellectual disabilities described the importance of mobility/transportation and fun, while their classmates without intellectual disabilities described the importance of inclusive learning and an increasing awareness of barriers to full participation for people with disabilities. Student-constructed categories are used to describe the benefits of inclusive study abroad and build future inclusive international opportunities.
The role and future of assessment and treatment units for people with intellectual disabilities is once again the focus of debate and government policy. Reviewing the admissions to inpatient services can provide useful information about the characteristics, needs and clinical outcomes of clients. Data were collected retrospectively for all 36 referrals accepted to an inpatient assessment and treatment unit for people with intellectual disability, between January 2013 and April 2014. Clinical and demographic characteristics of service users were identified through descriptive analysis. Male service users, mild intellectual disability and diagnosis of autistic spectrum disorder were frequent, and a high proportion of admissions had complex and multiple needs. The Health of the Nation Outcome Scale–Intellectual Disabilities was used as a clinical outcome measure. We conclude with recommendations for service development following closure of our inpatient service.
There is a general lack of self-report data from service users with an intellectual disability (ID) about their views of psychological interventions. This research explored the views and experiences of female inpatients, with a diagnosis of a personality disorder and an ID, about dialectical behaviour therapy (DBT). Semi-structured interviews were used with 10 women, recruited from two independent mental health hospitals. The interviews were analysed using interpretative phenomenological analysis. Participants showed varying levels of understanding of DBT. Findings highlight the need for a standardized approach with a suitably adapted structure and curriculum to meet the needs of inpatients with an ID. Factors such as the therapeutic relationship were identified as playing a role in participants’ motivation, engagement and participation in DBT.
In working with individuals with intellectual and developmental disabilities (IDDs), it is direct care staff who are often required to collect data on individuals’ behavior which is used as the basis for implementation of empirically based approaches for intervention and treatment. Due to limited resources, indirect and descriptive measures of challenging behaviors are employed to analyze the function of individuals’ behaviors in place of the preferred method of multimodal assessment, which includes experimental functional analysis. To ensure the most effective services and support to individuals with IDDs, accurate and consistent data collection is critical. In this article, we highlight the importance of accurate data collection practices, conduct a comparison of data collection methods, and discuss limitations .... and barriers for staff. The article concludes with recommendations for best practices and future research.
Studies have highlighted successful outcomes of psychological therapies for people with intellectual disabilities. However, processes underlying these outcomes are uncertain. Thematic analysis was used to explore the perceptions of three clinical psychologists, six clients and six carers of barriers and facilitators to therapeutic change for people with intellectual disabilities. Six themes were identified relating to: what the client brings as an individual and with regard to their wider system; therapy factors, including the therapeutic relationship and adaptations; psychologists acting as a ‘mental health GP’ to coordinate care; systemic dependency; and the concept of the revolving door in intellectual disability services. The influence of barriers and facilitators to change is complex, with facilitators overcoming barriers and yet simultaneously creating more barriers. Given their potential impact on the psychologists’ roles and access to therapy for people with intellectual disabilities, findings suggest these factors should be formulated as part of the therapeutic process.
People with profound intellectual disabilities often receive medication through enteral feeding tube (EFT). In a previous study, we found that current guidelines concerning medication preparation and administration through EFT are often not followed in residential care facilities (RCFs) for individuals with intellectual disabilities. The present qualitative study aimed to identify barriers and facilitators experienced by RCF staff members to following guidelines on medication administration via EFT, by conducting focus group interviews. Time constraints, lack of knowledge, lack of clear administration instructions, lack of necessary materials, and limited gastric fluid tolerance in certain residents were identified as barriers to following guidelines. Other influencing factors were the number of staff members, residents, and medications; habits; and the residents’ comfort and well-being. To optimize care for this vulnerable patient population with EFT, an intervention can be set up focusing on improving staff members’ medication-related knowledge and providing clear administration instructions and the necessary materials.
This pilot study is a randomized controlled trial on the effects of relaxation on anxiety, self-esteem, and emotional regulation in adults with intellectual disabilities (ID) working in a center of supported employment in France. We studied 30 adults with mild or moderate ID who were split at random into a relaxation group (RG, 15 subjects), who completed 10 sessions of relaxation therapy, and a control group (CG, 15 subjects), who were on a waiting list. The method used is the pretest and posttest. Variables were assessed by the State-Trait Anxiety Inventory form Y scale, the Rosenberg Self-Esteem scale, and the Emotion Regulation Questionnaire. We found that in the RG, relaxation significantly reduced state anxiety, t(14, 15) = 17.8***, d = –0.72, and improved self-esteem, t(14, 15) = –7.7***, d = 1.03, and cognitive reappraisal, t(14, 15) = –6.3***, d = 1.3, while the CG showed no change for these variables. We conclude that relaxation seems to be an interesting therapeutic option for reducing anxiety in people with ID in a supported employment setting.
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.
Teachers’ interpersonal style is a new field of research in the study of students with intellectual disabilities and challenging behaviors in school context. In the present study, we investigate emotions and causal attributions of three basic types of challenging behaviors: aggression, stereotypy, and self-injury, in relation to teachers’ interpersonal style. One hundred and seventy seven Greek general and special educator teachers participated in the study by completing a three-scaled questionnaire. Statistical analysis revealed that the type of challenging behaviors affected causal attributions. According to regression analysis, emotions, teaching experience, expertise in special education, and gender explained a significant amount of variance in interpersonal style. Emotions were found to have a mediating role in the relationship between causal attributions and interpersonal style of "willingness to support," when challenging behaviors were attributed to stable causes or causes under the control of the individual with intellectual disabilities.
Specialist intellectual disability inpatient units have come under increased scrutiny, leading to questions about the quality of service provision in this sector. A care pathway-based approach was implemented in such a unit and its impact on outcome variables was measured. The care pathway-based approach resulted in the turnover of more patients, increased capacity for admissions to the unit, reduced lengths of stay in hospital, timely assessments and treatments, which resulted in better outcomes in patients. Care pathway-based approach to service provision provides not only better outcomes in patients but also a reliable way of ensuring true multi-agency working and accountability. If used widely, it can reduce the variability in the quality of current service provision.
Transition planning using a person-centred approach has, in the main, failed to shape service provision. We offer an alternative based on an ecological understanding of human development linked to public health approaches that prioritise whole system planning.
A total of 43 young people with intellectual disabilities, in Bradford, England, who were approaching transition from school or college were recruited to a qualitative study. Their ethnic breakdown was as follows: 16 white British, 24 Pakistani, 2 Bangladeshi and 1 Black African. Each young person was interviewed twice, at recruitment and a year later, to observe any changes in their social networks during transition. Interviews were undertaken with a semi-structured interview schedule and with the pictorial approach of Talking Mats.
Both the networks the young people live within, and their sense of what the future might hold for them, are described and linked to Bronfenbrenner’s ecological model of human development. The importance of the family and school is emphasised, as is the absence of engagement in leisure activities and work.
Transition planning needs to start with mapping the systems individuals live within, areas of strength should be supported and parts of the system, which are not fit for purpose for these young people, should be prioritised for interventions.
The article reports the evaluation of a small-scale–supported employment project in a local authority in England. The study examined whether or not the peer support model could be used to deliver supported employment to a group of young people with intellectual disabilities. We utilised a mixed-method approach involving activity data, family interviews and a postal survey with participating employers. Five families took part in the study. Our findings show that families viewed the project positively, although it was insufficiently embedded in the wider transition planning. The study indicates that the peer support model may represent a useful addition to the conventional supported employment efforts for this population. However, more research is needed to demonstrate the benefits of peer support over and above the benefits of conventional supported employment for young people in post-school transition. In particular, producing a better evidence base on the exact impact of peer support on service users’ experiences is recommended.
This study explores Irish fathers’ perceptions of parenting a child with Asperger syndrome (AS). Ethical approval was granted by the service provider, and Husserlian phenomenological approach facilitated the exploration. Data were collected through semi-structured interviews of nine fathers in the West region of Ireland. Data were transcribed and analysed using Colaizzi’s (1978) method. The study highlighted that parenting a child with AS is an arduous task, but while there are difficulties, many positive aspects to their parenting experience were reported. Overall, the study highlights the importance of listening to parents and their initial concerns regarding their child’s development.
The emotional responses to challenging behaviour of direct care staff who support people with intellectual disabilities is thought to be an important mediating factor within the stress experienced by staff and a potential maintaining factor in challenging behaviour. A brief workshop to improve direct care staff resilience was developed and initially evaluated using a measure of emotional reaction to challenging behaviour and a measure of burnout. It was found that negative emotional reactions to challenging behaviour significantly reduced following the workshop, but a measure of burnout did not. This may indicate the usefulness of this intervention with direct care staff in managing their emotional reactions to challenging behaviour. However, further development and evaluation of such interventions with direct care staff is required to explore ways of impacting upon burnout and managing the display of challenging behaviour.
People with intellectual disabilities and their families are increasingly being asked to provide input into the services they receive. Under the aegis of the United Nation Convention of the Rights of Persons with Disabilities, support plans crucially depend on a participant’s articulation of his or her preferences and life goals. Yet, research highlighting the strengths and weaknesses of different methodological approaches has not been published. This study compared the results of a suite of qualitative methods (questionnaire, focus group, semi-structured interview, "case in point" ethnographic observation, photographic images, and carer proxy response) by identifying the advantages and disadvantages of each method employed. It also foregrounds an effective mix of methods that is likely to produce an adequate representation of the views of people with disabilities within the context of open-ended exploratory questions.
This audit was undertaken prospectively to examine the compliance of a group of psychiatrists against guidelines they developed for monitoring the onset of metabolic syndrome, a potential side effect of antipsychotic medication, especially second generation or atypical ones. Phase 1 of the audit was to set standards by a questionnaire survey of participating psychiatrists against Consensus Guidelines on monitoring (American Diabetic Association, 2004), which they favoured. The results led to modifying these guidelines to develop minimum acceptable standards against which their practice was audited in Phase 2. Although in Phase 1, 77% of the psychiatrists felt that they did some baseline recording, Phase 2 finding did not corroborate this – only 53.8% of the notes recorded the assessment of risk factors in personal history; 37.5% risk factors in family history; 31.7% baseline weight and 26.4% baseline blood sugar/lipid levels. In Phase 1, 85% of the psychiatrists thought that they carried out some of the recommended monitoring; our audit found the records of weight monitoring in 69.7% of the notes and blood sugar and lipids monitoring in 44.2%. People with intellectual disability have a shorter life expectancy and increased risk of early death when compared with the general population. Obesity is already a health issue for people with intellectual disability. We discuss the challenges faced by psychiatrists in implementing their own minimum acceptable standards and suggest measures to reduce the metabolic risk associated with antipsychotic medication through increasing awareness – use of information leaflets in accessible format, health promotion and use of side effect checklists and improving access – by working collaboratively with general practitioners utilising the forum of annual health checks.