Qualitative research with people with intellectual disability

Qualitative research methods are gaining popularity in disability research, in particular as a way to explore the personal experience of disability. However, using these methods can be problematic with people traditionally regarded as vulnerable in the research relationship. People with intellectual disability are often so regarded. This paper discusses ethical concerns and issues of research credibility in qualitative research with this group of disabled people. An ethnographic study about the parenting experience of parents with intellectual disability is used to illustrate strategies to achieve credibility in qualitative studies in intellectual disability research.     

Beyond good practice: Issues in working with people with intellectual disability and high support needs

Many more people with an intellectual disability now live in the community as a result of de-institutionalization. Occupational therapy is one service that assists people with intellectual disabilities to participate as fully as possible in their local communities. Despite the potential benefits of occupational therapy, there is little written about the types of interventions used and the effectiveness of their outcomes with people with intellectual disabilities. The present interview study about current occupational therapy practice with people with intellectual disabilities and high support needs was conducted with experienced Australian clinicians. Positive outcomes for clients with high support needs were achieved in two ways: (i) by what therapists do; and (ii) by the features of the therapy relationship. In addition, interventions that indirectly empowered clients and changed others' perceptions were seen to have the most positive effect. The findings are discussed with regard to current occupational therapy literature and implications for occupational practice and education are presented.     

The labelling of people with an intellectual disability

The issue of ‘disablist’ language has been raised by people with disabilities and their supporters. They are concerned that labels such as mental retardation suggest negative stereotypes which dominate a person's social identity. This paper reviews the existing guidelines for intellectual disability-related labels, their historical precedents, the opinions of interested parties and empirical evidence on the impact of labelling. It is concluded that communication about disability-related issues should use terminology which is consistent, least likely to be used as a form of abuse and is most widely acceptable to the people it describes. At the moment, people first terminology best fits those criteria for communication about all people who presently bear labels such as schizophrenic, arthritic or the handicapped.     

An empirical study of the sexual abuse of people with intellectual disability

This study describes a comparison between the level of sexual knowledge and experience of sexual abuse among people with intellectual disability and people without intellectual disability. The Sexual Abuse section of the Sexual Knowledge, Experience, and Needs Scale (SexKen) was completed by 30 people with intellectual disability (18 females, 12 males) and 50 control subjects (32 females, 18 males). The results demonstrated a lower level of sexual knowledge among the people with a disability but no differences between the groups in the level of incest and other unwanted sexual activities. There was a high percentage of people with intellectual disability who believed that someone else decides about the level of their sexual experience. They also expressed less negativity about sexual abuse. These findings are discussed in the context of sex education programs for people with intellectual disability.     

Homelessness—‘It will crumble men’: The views of staff and service users about facilitating the identification and support of people with an intellectual disability in homeless services

People with an intellectual disability (ID) face significant health inequalities and barriers to accessing appropriate support, which are made worse if the person is also homeless. An important barrier is that services may not recognise that the person has ID. This qualitative study explored the views of staff members and service users about the identification and support needs of homeless people with ID and the role of an ID screening questionnaire as a way to help improve service provision. Semi‐structured interviews were conducted with 16 staff members and 8 service users from homeless services in the South East of Scotland between March 2017 and 2018. Thematic analysis identified four themes: ‘not diagnosed or declared’, which explored the barriers to support due to the person's ID not being identified by others or disclosed by the person; ‘It will crumble men’, which reported on the additional challenges faced by homeless people with ID; ‘disabling environment’ which identified the ways in which organisations can make support difficult for people with ID to access; and ‘It's not against them, it's to help them’ which explored the benefits and issues associated with screening for ID in homeless services. The results identified the complex support needs likely to be experienced by many homeless people with ID and suggested a number of implications for practice. First, the screening tool was seen as having a number of benefits, if used where there is a process to provide the person with further specialist assessment and support. Second, staff members identified a need for training in relation to identifying and supporting this group of people. Third, the screening tool was seen as a way to help provide information about the prevalence and needs of people with ID, in order to inform and shape policy, service development, and delivery.     

Creating equitable healthcare quality and safety for children with intellectual disability in hospital

Children with intellectual disability are susceptible to poor experiences of care and treatment outcomes, and this may compound existing health inequities. Evidence to date indicates three priority areas that must be addressed in order to reduce these inequities in the safety and quality of care for children with intellectual disability. Firstly, we need reliable methods to identify children with intellectual disability so that healthcare organizations understand their needs. Secondly, we need to develop quality metrics that can assess care quality and unwarranted care variation for children with intellectual disability in hospital. Finally, for a comprehensive understanding of the safety and quality of care for these children, and how to improve, it is critical that healthcare organizations partner with parents/carers and enable children with intellectual disability to voice their experiences of care. Children with intellectual disability have higher healthcare utilization than their peers; yet, their voice is rarely sought to optimize the safety and quality of their healthcare experience. Patient experience narratives enhance our understanding of the genesis of adverse events. By addressing these priorities, children with intellectual disability will be identified, and health services will measure and understand the problematic and beneficial variations in care delivery and can then effectively partner with children and their parents/carers to address the inequities in care quality and create safer healthcare.     

Parents' experiences in assisting a person with an intellectual disability to achieve optimal dental health

This qualitative study explored the experiences and perceptions of parents in relation to dental care for their son or daughter with an intellectual disability. Six parents were interviewed, each of whom had a school-aged child with an intellectual disability. Themes which emerged include the use of coping strategies and adaptations by parents in assisting with dental care, the priority placed on dental care, trauma in dealing with dental issues, differences in expectations and outcomes for people with a disability compared with non-disabled siblings, and parents' views on dental services. While parents reported satisfaction with current dental services, it was apparent that their expectations may not have been as high for their child with a disability as for their other children. Possible reasons for this are discussed. Areas for further research are suggested.     

Co-occurring intellectual disability and substance use disorders

Individuals with intellectual disabilities (ID) are an expanding population that confronts multiple disadvantages from social and environmental determinants of health. Deinstitutionalization and community integration have improved the lives of individuals with ID in many ways. However, deinstitutionalization may increase their access to alcohol and drugs and the potential for developing Substance Abuse Disorders (SUD). It is estimated that 7–8 million people in the United States with an intellectual disability (ID) suffer disproportionately from substance use problems [1]. There is a lack of empirical evidence to inform prevention and treatment efforts in this population and more research needs to be done in order to address these issues.     

Everyday life when growing up with a mother with an intellectual or developmental disability: Four retrospective life-stories

Abstract

Background: The voices of those who have grown up in a family with maternal intellectual or developmental disability (IDD) are valuable for gaining an understanding of their situation, which is essential in order to be able to support these families and avoid potentially detrimental situations.

Aim: The study aim was to describe the experience of having grown up in a family where the mother has an IDD, with a focus on everyday life and perceived health consequences in adult life.

Method: A qualitative method with retrospective narrative interviews and narrative content analysis was chosen. In-depth interviews were performed with four women who had experiences of a childhood with maternal IDD.

Findings: Four themes emerged: Living under adverse circumstances; Dealing with one’s everyday life situation; Receiving insufficient support and wishing for more; and The echo from childhood into adult life. The findings revealed a distressing childhood, characterized by neglect, abuse, anxiety, and overburdening responsibilities, and also endeavors to keep the family situation a secret, while at the same time wanting the adult world to react.

Discussion: The findings can hopefully stimulate occupational therapists and other professionals to more effectively identify the situation of these children and provide support to prevent adverse future health conditions and poor well-being.     

Supporting the health and well-being of people with intellectual disability and high support needs through networking and resource development

The aim of this paper was to describe an innovative network that supports people with intellectual disability in relation to health and well-being issues. The communication strategies and resources developed by the members of this network are outlined. Occupational therapists have been involved in this network since its inception and some implications for occupational therapists working with people with intellectual disability are identified.     

Effects of occupational therapy intervention on activities of daily living and awareness of disability in persons with intellectual disabilities

Aim:  The purpose of this study was to evaluate the effects of an occupational therapy intervention program on activities of daily living (ADL) ability and awareness of disability.
Methods:  Six persons with intellectual disabilities participated in the study, which was based on a single-case design. Assessment of Motor and Process Skills and Assessment of Awareness of Disability were used as evaluation tools.
Results:  Activities of daily living performance improved in five of the six participants after implementation of the program, with improvement across both motor and process skills. However, no clear improvement in awareness of disability was found following implementation of the program.
Conclusion:  It may be concluded from this study that persons with intellectual disabilities can benefit from occupational therapy interventions to improve ADL ability, even in the absence of any change in their awareness of disability.     

Exploring the role of self-management programmes in caring for people from culturally and linguistically diverse backgrounds in Melbourne, Australia

BACKGROUND: Chronic disease self-management programmes are now an important adjunct to the treatment and care of Australians with chronic illnesses. Most programmes are delivered in English and cater for 'Anglo' views of health and illness. The Peer-Led Self-Management of Chronic Illness Project was funded by the National Health and Medical Research Council (NHMRC) to test the hypothesis that the Stanford University Chronic Disease Self-Management Program would improve health outcomes for people from the Vietnamese, Greek, Chinese and Italian communities in Melbourne's north-eastern suburbs. OBJECTIVE: To examine the extent to which the programme required modification so that the concepts associated with self-management programmes have relevance to the health behaviours of people with chronic illness from the above communities. METHODS: Four focus groups facilitated in English, using interpreters. RESULTS: There was wide understanding of the concepts employed in self-management programmes. Literacy problems emerged as the major obstacle to participating in unmodified programmes. CONCLUSION: The conceptual aspects of the programme require less modification than originally predicted, but the programme requires sensitive modification so that it is accessible to people with low literacy levels.     

Expectations of and reactions to disability and normality experienced by parents of children with intellectual disability in Sweden

Background Much research has been devoted to the emotional burdens of having a child with intellectual disability (ID), but very little of this has focused on the burdens imposed by negative public attitudes towards disability. Adjustment has primarily been thought of as adjustment to the actual disability rather than adjustment to attitudes or prejudices towards disability. Aim The aim of the present study was to study expectations of and reactions to disability and normality experienced by parents of children with ID in their everyday life in Sweden. Research questions Do the parents relate to the tragedy discourse and, if so, how? Do parents relate to other expectations and disability discourses and, if so, how? What subject positions do the discourses offer? Method The analysis was based on 17 semi‐structured interviews with nine fathers and eight mothers of nine children with different IDs. The children were newly diagnosed and were from 6 months to 5 years of age. Results Four discourses (tragedy and the lived experience, tragedy and the outsider perspective, the clinical gaze and the super‐parent ideal) and subject positions relating to these discourses are discussed. Discussion The results of this study show that parents of young children with disabilities relate to a wide range of social processes and practices, which could be thought to affect their emotional well‐being and parental identity negatively.     

Health promotion and intellectual disability: listening to men

Taking responsibility for your own health has been a central tenet of public health policy internationally for a number of decades. Governments in the UK and internationally continue to promote a plethora of health promotion strategies, encouraging individuals and communities to adopt healthy lifestyle choices. Although it is widely recognised that men are not as proactive in seeking out medical help or taking on health promotion advice as women, limited gender‐sensitive research exists in the field of intellectual disability. Despite many health promotion policy and practice strategies targeted at this population, little research exists exploring whether men with intellectual disability acknowledge health promotion advice. The study aimed to explore how men with mild‐to‐moderate intellectual disability understood and perceived their health and what health promotion messages they acted upon. The study was based on a participatory approach which enabled 11 men with intellectual disability to contribute as steering group members and as participants through one‐to‐one interviews. Data were collected between September 2011 and July 2012. Thematic analysis was undertaken. The participants demonstrated a capacity to understand their own health. This was inclusive of a concern about associating being obese with being unhealthy. The participants reported good relationships with their general practitioners (GPs) and felt valued, in particular when the GP was prepared to offer specific intellectual disability and health promotion advice. More gendered research inclusive of the views of this male population is required and the study reiterates the importance of promoting the health of men and women with intellectual disability.     

The impact of personalisation on people from Chinese backgrounds: qualitative accounts of social care experience

The limited research that considers people from black and minority ethnic communities' experiences of personalisation tends to focus on personal budgets rather than personalisation per se. This article provides an opportunity to hear the voices of people from Chinese backgrounds and their experiences of personalisation. The study used individual semi‐structured interviews and focus groups to collect data from physically disabled people from Chinese backgrounds who lived in England, were aged between 18 and 70, and received social care. Data were analysed using an iterative and thematic approach, with early analysis informing the subsequent analytical rounds. The findings reveal that personalisation has the potential to transform the lives of people from Chinese backgrounds, especially when tailored support is available for people to understand and access personal budgets and put them to creative use. However, the impact of personalisation is barely evident because few eligible individuals access personal budgets or participate in co‐production. This is related to a lack of encouragement for service users to become genuine partners in understanding, designing, commissioning and accessing a diverse range of social care services to meet their cultural and social care needs.     

Computer-based working memory training in children with mild intellectual disability

We designed a working memory (WM) training programme in game framework for mild intellectually disabled students. Twenty-four students participated as test and control groups. The auditory and visual–spatial WM were assessed by primary test, which included computerised Wechsler numerical forward and backward sub-tests and secondary tests, which contained three parts: dual visual–spatial test, auditory test and a one-syllable word recalling test. The results showed significant difference between WM capacity in the intellectually disabled children and normal ones (p-value?<?0.00001). Visual–spatial WM, auditory WM and speaking were improved in the trained group. Four tests showed significant differences between pre-test and post-tests. The trained group showed more improvements in forward tasks. The trained participant's processing speed increased with training.

We found that school is the best place for training. More comprehensive human–computer interfaces could be suitable for intellectually disabled students with visual and auditory impairments and problems in motor skills.     

The effectiveness of painting therapy program for the treatment of externalizing behaviors in children with intellectual disability

Externalizing behaviors are prevalent among children with intellectual disability (ID). This study was conducted to identify the effectiveness of painting therapy program in alleviating the externalizing behaviors of male children with ID. In a randomized clinical trial, 60 children with ID were separated into intervention group and control group. The intervention group received the painting therapy program (12 weeks; two sessions per week), while the control group did not receive any program. The questionnaires were completed by their parents in order to evaluate the externalizing behaviors of children at the beginning and at the end of the painting therapy program. A two-way repeated-measure Analysis of Variance showed that the mean levels of externalizing behaviors in the intervention group decreased after the painting therapy program. In addition, the analysis showed that the mean levels of externalizing behaviors between the intervention group and the control group were significantly different. The findings revealed that painting therapy program could alleviate the externalizing behaviors of children with ID.     

Sensory processing and stereotypical and repetitive behaviour in children with autism and intellectual disability

Background: Sensory processing disorders have been linked to stereotypical behaviours in children with intellectual disability (ID) and autism spectrum disorders (ASD) and to anxiety in children with ASD. In earlier phases of this study with the same participants, we found that those with both ASD and ID were more motivated than those with ID alone to engage in stereotypical behaviour to alleviate anxiety. In this phase, we confirmed that children with both ASD and ID and those with ID alone process sensation differently than typically developing children. We asked: Do the sensory processing difficulties of children with ASD and ID differ significantly from those of children with ID alone in a way that would help explain the increased anxiety of the former group? Method: Parents of children with ASD and ID (n = 29; mean age 9.7 years) and with ID alone (n = 23; mean age 9.5 years) completed a Sensory Profile (SP) to provide information about their children's sensory processing abilities. SP quadrant scores for each group were compared with each other and with the published norms of typically developing children. Results: Children with ASD and ID and with ID alone processed sensory information differently than typically developing children (P = 0.0001;d = > 2.00). Children with both ASD and ID were significantly more sensitive (P = 0.007;d = 0.70) and avoidant (P < 0.05;d = 0.47) than the children with ID alone. Conclusion: We conclude that increased sensitivity and the tendency to avoid sensation may help explain anxiety in children with autism.