Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations

Researchers are required to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper reports on one research study inclusive of 12 adults with intellectual disabilities. Ethical and methodological realities of recruiting research participants and obtaining informed consent while enlisting a classic grounded theory methodology are discussed. The findings of this paper focus on building and maintaining trusting relationships with relevant gatekeepers and engaging in reasonable accommodations to support decision-making for and with adults with intellectual disabilities. This paper contributes to an understanding of how to apply for ethical approval, negotiate access to potential participants, enlist reasonable accommodations and obtain informed consent in the context of the methodological strictures of classic grounded theory methodology. Research projects need to be carefully planned making space for the development of empathic relationships with both the potential participants and also with the structures and services supports.     

‘There’s a lot of places I’d like to go and things I’d like to do’: the daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom

Adult social care services in the United Kingdom have undergone a period of transformation over recent years, characterised by a drive towards personalised care. Concurrently, social care budgets have been significantly reduced. This study aimed to explore the daily living experiences of adults with mild/moderate intellectual disabilities, who are at risk of no longer meeting eligibility criteria for statutory support. Focus group discussions, which included both people with intellectual disabilities and support workers, were analysed thematically. Two broad themes are presented: independence and agency; and social capital and well-being. While some participants echoed ideas central to the personalisation narrative, a number of contextual barriers to achieving greater independence and agency were discussed. Moreover, greater independence was not a desired goal for all participants. The findings highlight the potential mismatch between personalised social care, as delivered within significant budget constraints, and the needs of adults with intellectual disabilities.     

Australia's leading social work authors: the devil in the detail

Abstract

Many care leavers with disabilities face difficulties as they transition from out-of-home care (OoHC), and suffer multiple, ongoing forms of disadvantage after they leave care. This paper is drawn from a study comprising six focus groups, involving 21 participants employed in disability and OoHC services in Victoria, Australia. The findings suggest that care leavers with disabilities do not receive the transitional and postcare support and housing they need. Many are transitioned into housing options that are unsuitable for their needs, or unsafe. The argument of this paper is that care leavers with disabilities may benefit from adult guardianship legislation. When appropriate an application for a guardianship order should be made prior to the young person exiting care, to enable a smooth transition between the child and adult systems. Adult protection services with an advocacy function should be given the opportunity to advocate for care leavers with disabilities.     

‘Being friends means helping each other,making coffee for each other’: reciprocity in the friendships of people with intellectual disability

Friendship is an issue of concern for many people with intellectual disability. The aim of the research presented in this paper is to understand how people with intellectual disability experience friendship and what friendship means for them. A focus group was held with seven people with intellectual disability, who are members of a self-advocacy group. An inductive thematic analysis approach was used to analyse the data. The people that the research participants identified as their friends were fellow self-advocates, family members, support workers and co-workers. They also identified behaviours and actions that foster friendship and those that undermine it. The analysis shows how the research participants identified as friendships those relationships which had an element of reciprocity, while linking a lack of reciprocity with the absence of friendship. It is very important for non-disabled people to understand the perspectives of people with intellectual disability they live and work with.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

Political Advocacy in the 1980s

Abstract

Government support for human services programs de creased considerably during the 1980s while defense spending rose dras tically. The shift in spending priorities is thought by some to be due to insufficiently active or incapable social welfare lobbyists. This paper ar gues that human services advocacy groups were as active as supporters of defense programs. Human services advocates were shut out of the de cision-making process primarily due to the lack of public support for their ideas. The implication, that social welfare advocates must build a solid base of public support for their proposals, can be applied to current issues.     

Youth leadership program for changing self-image and attitude toward people with disabilities

Society has a negative attitude toward people with intellectual disabilities or psychiatric disabilities. It is well documented that they are subjected to prejudice, stigma, and negative attitudes (Di Giulio, 2003 ; Finger, 1994 ). Professional literature indicates that information about disabilities and encounters with persons with disabilities can change negative attitudes (Carter, Hughes, Copeland, & Breen, 2001 ; Krajewski & Flaherty, 2000 ). This study accompanied 164 9th-grade students from various junior high schools throughout Israel. Half of the students participated in an integration program for changing attitudes toward persons with disabilities, and the other half served as the control group. The research examined the existence and the degree of relationship between participation in the program, changes in attitudes toward people with disabilities, and self-image. The research findings pointed to a positive change in attitudes of the participants of the program in comparison with the control group, resulting mainly from personal contact with people with disabilities. No relationship was found between levels of self-image of the research group and attitudes toward people with disabilities.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Effective Responses to Offenders with Intellectual Disabilities: Generalist and Specialist Services Working Together

Abstract

Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.     

The “Our Homes,Not Nursing Homes” Project

ABSTRACT

The voices of non-elderly adults with disabilities who currently-or used to-reside in nursing homes are rarely heard. A grassroots disability advocacy organization conducts participatory action research in the form of a writing workshop in collaboration with a local community-college. Participants with disabilities describe their lives and their experiences in nursing homes with the help of volunteer scribes. The information provided in their accounts will help strengthen community-organizing efforts of the disability advocacy organization. And participants have been empowered by the realization that their life stories are helping others to leave nursing homes and join community settings.     

Mobile technology in inclusive research: tools of empowerment

Inclusive research is an accepted approach when conducting research about individuals with disabilities. No studies have been published to date on using mobile technology to support people with intellectual disabilities as researchers. An inclusive research team of researchers with intellectual disabilities and academic researchers used mobile technology to support research skill acquisition. They conducted 15 joint research training sessions, followed by 10 research meetings. In order to discuss the experience of using iPads to support researchers with intellectual disabilities, the authors used a multiple-case study approach. Findings included the challenges and successes of mobile technology implementation. In conclusion, the iPads enhanced participation opportunities for the researchers with intellectual disabilities not only in the research, but also in other areas of their lives. This also brought to light the vulnerability of women with intellectual disabilities and the lack of control they often experience in their lives.     

How do adults with intellectual disabilities use Facebook?

Social networking sites have potential to support social relationships and self-determination of people with intellectual disabilities. However, to date, this issue has received little research attention. To help address this need, we conducted an online research survey to reach adults with intellectual disabilities who use Facebook and to include their voices about their online experiences, challenges, and preferences. We used mixed methods for data collection and analysis. Results from 58 respondents indicated that they use Facebook much as non-disabled users do to connect with family members and real-world friends. At the same time, the respondents reported challenges such as privacy setting and literacy demands. We discuss these findings and how to make social networking sites more accessible for users with intellectual disabilities.     

Grass Roots Promotion of Community Health and Human Rights for People with Disabilities in Post-communist Central Europe: a profile of the Slovak Republic

Individuals living with a disability or chronic illness in post-communist Central and Eastern Europe face significant challenges to quality of life. The government-supported health care infrastructures in the post-communist countries of Central and Eastern Europe remain highly centralised and institutional, which poses particular obstacles to people with disabilities who wish to live independently in their communities. A partial solution to this difficulty has been the development of innovative grass roots organisations that provide community-based support to individuals with disabilities or chronic illness. These disability organisations provide services and advocacy that allow individuals to receive needed support outside of the biomedical institutions, facilitating independent living in the community. They do so, however, in a political and economic environment of immense change, and one with varying degrees of support for non-governmental organisa tions and a Civil Society. The following article profiles this grass roots development in one particularly interesting post-communist Central European country, the Slovak Republic.     

International Ethical Safeguards: genetics and people with learning disabilities

This paper discusses the ethical issues and international standards relating to genetic research on people with learning disabilities. Research protocols must acknowledge the people who are subjects of such research and must reflect emerging disability philosophies. This research provides a brief historical context and considers five issues of fundamental importance to people with learning disabilities through a discussion of participation in the research design, independent advocacy, justice, non-discrimination and autonomy. These concerns have been investigated in England and abroad, and it is therefore valuable to undertake a review of the legal and ethical context of genetic research for vulnerable people who may be deemed unable to provide consent.     

‘The seal of approval’: referring adults with intellectual disabilities and challenging behaviour to community learning disability teams

This article describes a study that involved interviewing eight managers of residential services, who have made referrals to community learning disability teams (CLDTs) for challenging behaviour. Thematic analysis and a critical perspective are combined to analyse and interpret what referrers said about the process of the referral. The study found that managers referred people with intellectual disabilities to the CLDT primarily in order to manage organisational problems rather than to directly manage challenging behaviour. The referrals enlisted the services of professionals to legitimise the residential services, to confirm their practices and to provide credibility to existing decisions by managers. In referring a man or woman with intellectual disabilities to the CLDT, the managers submit themselves, their staff and the person with the intellectual disabilities to the power of the health and psy-complex professionals.     

Special Needs Under Siege: From Classrooms to Incarceration

Several research articles have documented the disproportionate representation of minorities in school discipline and incarceration settings. In the 2009–2010 school year, research shows nationally 17 percent of African‐American, 8 percent of Native American, and 7 percent Latino American students were suspended at least one time (Losen and Gillespie 2012 ). In addition, studies show African‐American and Latino males represent the largest percentage of inmates in correctional facilities (i.e. jails and prisons) throughout the United States (Sakala 2014 ). While research has documented the relationship between race and the school‐to‐prison pipeline, the relationship between race, intellectual and emotional disabilities, and the school‐to‐prison pipeline has been relatively unexplored. According to Losen and Gillespie ( 2012 ), 25 percent of Black students who were labeled with an intellectual or emotional disability were suspended from school in the 2009–2010 school year compared to 9 percent for White students diagnosed with an intellectual or emotional disability. Furthermore, data show 70 percent of juvenile inmates were diagnosed with learning disabilities and 33 percent were reading below a 4th grade level (Hubner and Wolfson 2001 ). The current review seeks to explore the complex relationship between disability, race, and the school‐to‐prison pipeline to highlight how minority students with special needs are placed on a trajectory towards settings of incarceration.     

‘I know,I can,I will try’: youths and adults with intellectual disabilities in Sweden using information and communication technology in their everyday life

This study introduces how technology and humans are part of relationships that influence agency among people with disabilities. It aims to focus attention on the use of, and access to, information and communication technology (ICT), and agency among youths and adults with intellectual disabilities. The study draws on empirical research conducted with youths and adults with intellectual disabilities, as well as staff at a day centre. It shows that by drawing upon interests, previous experiences, and cooperating in ICT activities the participants’ agency changed. Also, it shows how disability is relational and how it can be influenced by ICT. An interdisciplinary approach is adopted to interpret the findings and to explore: How do people of different ages with intellectual disabilities experience the use of ICT in their everyday lives? Are people with intellectual disabilities able to influence their level of activity by using ICT? And if so, in what ways?     

“Where’s the human dignity in that?”: LGBTQIA + people with intellectual disability exploring sexual lives and respectful relationships

Abstract

For people with disabilities, sexuality remains a contested and restricted space. This research investigated how the Sexual Lives & Respectful Relationships (SL&RR) program might be adapted for people with intellectual disabilities who identify as LGBTQIA+. The program included co-developed materials and specifically curated narratives. It was received positively. The facilitators identifying as members of the LGBTQIA+ community was also reported as positive. While an inclusive program might be ideal, participants expressed the view that community attitudes (including those of other people with intellectual disability) might not yet be conducive to integrated human relationships programs.     

A rights-based conceptual framework for the social inclusion of children and young persons with an intellectual disability

There is a basic principle that all children and young persons with intellectual disabilities should be able to enjoy citizenship on an equal basis with others. This includes enjoying personal dignity and exercising choice, control and freedom in social, community and cultural life, in keeping with their individual lifestyle preferences and aspirations. There is a need for a stronger human rights narrative to achieve this. This article identifies a conceptual framework for a rights-based approach to the integration of children and young persons with disabilities. Seven components of such a framework are identified: citizenship and social inclusion; recognition; agency; voice; capabilities; equality; and self-realisation. This framework was developed as part of an Irish case study involving consultation with young persons with intellectual disabilities, their parents or guardians and professional staff delivering support services. The rights of children/young persons with intellectual disabilities are essentially those of children generally. While this principle may be obvious in many respects, its implementation presents significant challenges. The need for a transformative narrative and its components are outlined.     

Looking inside the bag of tools: creating research encounters with parents with an intellectual disability

This paper examines the development of fieldwork methodology in a study that investigated the parenting experiences and parent support needs of a group of parents with an intellectual disability. It considers the ways in which the original planning for the project changed as the fieldwork unfolded, requiring adaptations to our methodological expectations and in the process deepening our understanding of the phenomena we were studying and reinforcing for us the importance of relationships in fieldwork‐based research. Three themes in particular are considered that became central to this research: research relationships; safety for participants/positioning of the researcher; suspending assumptions about impairment and disability and influences on life experiences.