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“Are You Retarded?” “No, I'm Catholic”: Qualitative Methods in the Study of People with Severe Handicaps
Abstract
Qualitative research methods generally depend heavily on good communication between researcher and informant. When qualitative methodologists study informants with severe retardation whose use of language may be limited, what do they do?
If the researchers plan to study the world of the informant, then traditional participant observation guidelines are useful. But when the researcher wants to interview the informant, some modifications need to be made. The authors suggest several guidelines to follow.
... In the initial study, most of the interviews were conducted in real-time while they were working as volunteers and relied heavily on observations as well (Undlien, 2019). According to Biklen and Moseley (1988), researchers who conduct interviews with people with disabilities find that observation is an important part of the process. Although observation was not used as a scientific method here, relevant elements were observed during the interviews that told the interviewer something about the importance of the event in the interviewees' lives. ...
... Such challenges were familiar to the author, given his experience with the interviewees during the previous study. One strategy for overcoming them might be using important people in the interviewees' lives, such as parents (Biklen & Moseley, 1988). ...
... believe he or she wants to hear (Biklen & Moseley, 1988). In this study, a parent would intervene at some points if the youth gave an inaccurate answer to the interviewer's question that made his or her response less relevant to the study. ...
This article serves as a follow up on a previous study and looks at how volunteering at a major sporting event has affected the lives of a group of volunteers with intellectual disabilities two years after volunteering. The aim is to examine how volunteering at an Olympic event may be a source for lasting social value, operationalized as an increase in social capital and quality of life. Qualitative interviews were conducted on a selection of former volunteers with intellectual disabilities. In five of the interviews, parents of the interviewees also functioned as facilitators for the interviews. The same five parents were
also interviewed in brief, semistructured interviews. This study shows that the event had a limited effect on bridging social capital, while having a stronger impact on the group`s
bonding social capital. Moreover, the event has affected the quality of life for the participants to various degrees by being a source for positive memories, enforced by visual reminders such as the volunteer uniform frequently worn by the former volunteers. The volunteer experience also serves as a bridging element, bringing together groups of people with little in common. In some cases, volunteering also led to employment in regular occupations.
... This flexibility is essential when attempting to administer PO to multiply disabled populations. Biklen and Moseley (1988) conducted a study of severely disabled individuals using PO. They confirm thar if the "researchers plan to study the world of the disabled informant then traditional participant observation guidelines are useful. ...
... .ended questioning; the same. . .answer problem; pleasing the interviewer; and the use of significant others to gather information (Biklen & Moseley, 1988). ...
... PO usually involves interviews as one method of data collection and there are inherent difficulties with this method. Biklen and Moseley (1988) offer the possibility that interviews are very dependent on language and effective articulation of thoughts and ideas, and disabled individuals often have difficulty in this capacity. Educators of the disabled individual generally have a better capacity to understand the utterances and gestures because of experi. . . ...
... Qualitative social work researchers experience interesting conundrums gathering data from individuals who have cognitive, physical, and communication difficulties. Varying communication abilities present obstacles for the qualitative researcher in ensuring the authenticity of the information obtained (Biklen & Moseley, 1988). Receptive language issues due to cognitive impairment and expressive language issues due to physical disabilities further impact the interview process (Lloyd, Kalsy, & Gatherer, 2007;Nind, 2008). ...
... Another concern involves the way data collection occurs and its perceived validity related to physical communication barriers (expressive language) and/or comprehension barriers due to lower cognitive functioning (Biklen & Moseley, 1988;Bronken & Kirkevold, 2013;McDonald & Raymaker, 2013). The development of advanced communication technologies has enabled IWDD to participate in their social contexts and now in qualitative research protocols. ...
... Several strategies are identified in the literature for interviewing IWDD who have expressive language difficulties (Bronken & Kirkevold, 2013). These strategies consist of the use of a multipronged approach involving assistive technologies, communication systems (Mitchell, 2010;Welsby & Horsfall, 2011) such as voice output devices, communication boards, picture symbols, and familiar others to interpret their speech (Biklen & Moseley, 1988;Nind, 2008). While an increasing number of qualitative researchers are incorporating IWDD in their studies (Mactavish, Mahon, & Lutfiyya, 2000;Marshall et al., 2012;, scant information is available on research with IWDD with expressive and receptive communication impairments due to physical and cognitive disabilities, respectively, and in combination. ...
This article examines qualitative research dilemmas encountered with participants who have communication, physical and cognitive impairments. A review of the extant literature indicates the importance of identifying and resolving these research conundrums. The author will describe a qualitative study on identity formation in individuals with developmental disabilities (IWDD) as a medium to identify and explore the various dilemmas encountered while utilizing in depth interviews. Issues which arose during the research process include concerns about the potential of participants to be vulnerable to coercion, upholding privacy/
confidentiality, role confusion and expressive language barriers in participating in narrative discourse; access to participants was an additional concern. Findings from this study indicated that IWDD benefit from participation in qualitative research. Three overarching themes were manifested: being heard, helping others, and enjoying the process. Suggestions for addressing the various dilemmas which might inhibit IWDD from participating in qualitative research are discussed and implications for social work practice and social justice initiatives are delineated.
... When conducting research with individuals with disabilities, multiple method case studies have advantages over single method case studies. As Biklen and Moseley (1988) explain, individuals with disabilities possess unique characteristics that may threaten the validity of studies that rely on a single method of data collection such as individual participant interviews. For example, interviewing individuals with significant disabilities who have difficulty with communication may increase the potential for misunderstandings, thus threatening validity. ...
... The ongoing interactions that occur among group members during focus group interviews may encourage respondents to seek clarification to questions. Also, hearing different responses to the questions may lessen a respondent's tendency to provide answers that he or she thinks the moderator wants to hear (Biklen & Moseley, 1988). Additionally, because focus groups do not rely on written language, it enables respondents with limited or no reading skills to fully participate in the investigation (Steward & Shamdasani, 1997). ...
... Finally, strategies identified by Biklen and Moseley (1988) were used to guide the interview process and to ensure that the information gathered was as meaningful and accurate as possible. For example, to correct for misunderstandings, questions focused on one concept at a time and repetition was used, as needed. ...
... When language difficulties were encountered, significant others were asked to serve as a translator, noting, however, they may also filter information. Finally, as recommended by Biklen & Moseley (1988), this study included an observational component using the Job Observation and Behavior Scale (JOBS; Rosenberg & Brady, 2000a), which was completed by the employment consultants. ...
This study measured the quality of life, job satisfaction, functional ability, and job performance of 40 people with developmental disabilities receiving supported employment services from a north Florida provider. Quality of life and job satisfaction were assessed via interviews with supported employees, using the Quality of Life Questionnaire (QOL.Q; Schalock & Keith, 1993a) and the Job Descriptive Index (JDI; Smith, Kendall, & Hulin, 1997), including the Job in General (JIG) scale, respectively. Functional ability and job performance of supported employees were assessed by employment consultants (ECs), who completed the Functional Assessment Inventory (FAI; Crewe & Athelstan, 1981) and the Job Observation and Behavior Scale (JOBS; Rosenberg & Brady, 2000a).
Results of Spearman rank order correlations indicated a significant relationship between overall quality of life and general job satisfaction. Further, significant correlations between the competence/productivity subscale of the QOL.Q and certain aspects of the job (JDI), specifically, work, pay, and supervision were found. Results of Wilcoxon-Mann-Whitney tests of two independent samples according to high and low functional ability revealed a significant difference between groups on quality of job performance, while no significant difference between groups on type of job support or overall quality of life was found. Examination of median scores of job performance, however, revealed that despite functional ability group differences, the majority of supported employees achieved average job performance with intermittent support, when compared to workers who weren’t receiving support and performing the same competitive jobs. Implications for future practice, personnel preparation, policy, and research are suggested.
... The variation in language and communication skills of the informants called for a flexible approach to data gathering, maximizing the individual informants' chance of providing a comprehensible response. Despite a willingness to participate, problems in interviewing people with intellectual disabilities have been reported (Barron, 1999;Biklen & Moseley, 1988). Confirmative answers are too frequent, the last of several known answers is commonly given, and many have general problems with answering at all (Finlay & Lyons, 2001). ...
Background
A first generation of adolescents with Down syndrome have grown up in Norway's inclusive society. This study explored their friendships and social leisure participation, mainly as it is reflected through their subjective experience.
Method
The analysis is based on qualitative interviews and observations of 22 teens aged 17 years.
Results
Generally, the adolescents described their social life as rich and varied, occurring in several contexts with different companions. Their thoughts of friendships were quite extensive, also including less close relationships. Three main contextual patterns of social participation were revealed: (a) the family at home pattern, (b) the peer group pattern and (c) the arranged company pattern. The relationship between the national policy on social inclusion and these findings is discussed.
Conclusion
To understand the barriers and opportunities in the social life of Norwegian adolescents with Down syndrome, it is essential to acknowledge the extent of their experiences with friendship and the characteristics of their social participation patterns.
... Although language may be important within participant observation, there is also an option to study situations from the perspectives of individuals with ID who are nonverbal. The aim is to discover and explore the meaning that the subjects make of their world (Biklen & Moseley, 1988). Throughout the study, the interviews and observations were divided into two main subjects, social entrepreneurship and volunteerism. ...
During the Youth Olympic Winter Games event in Lillehammer, Norway, a group of students with intellectual disabilities worked as volunteers. The teachers of the class functioned in a social entrepreneurial manner, using the event to create social value for this particular group. Qualitative interviews were conducted with the group of students (n=12), and observations were made during the event. The students' teachers (n=3) and the head of volunteers (n=1) from the organizing committee were also interviewed for triangulation, thus verifying the interpretation of the data. This study demonstrated that social value was created through the practical tasks the students with intellectual disabilities were given, especially in relation to the Olympic context of the event, and the job itself was more important than those for whom they were doing it or why. Other important sources of social value were for the students to be outside of the classroom and to be cooperating and learning from each other within the group. Last, the students had the opportunity to aid and assist, instead of being aided and assisted, and to give something back to the local community.
... For the purpose of this synthesis, student input is defined as opinions, beliefs, perspectives, or perceptions. This definition purposefully emphasizes subjective data that has been traditionally challenging for researchers to acquire from students with SIDD (Biklen & Moseley, 1988;Dennis, 2002). If a study contained student input only for social validity and not as a goal of the research, it was excluded. ...
With the long-standing emphasis on self-determination and self-advocacy in the field of transition, it seems logical that the discussion of how best to prepare students with disabilities for adulthood would include the students themselves. The voices of students with significant intellectual and developmental disabilities (SIDD) have historically been sparse in transition research. Grappling with validity and methodological concerns, researcher most often turn to students with milder disabilities, teachers, parents, and other stakeholders for input about transition services. The purpose of this literature review was to highlight articles published about transition topics that included the perspectives of students with SIDD. This review emphasized research questions, topics, methodologies, demographics, tools, and trends in these studies. Between 1990 and 2015, 11 studies were published that sought input from students with SIDD as stated in the purpose or research questions of the articles in the top 22 special education journals. Specifically, the authors identified strategies used by researchers to facilitate the inclusion of the perspectives of students with SIDD. By acknowledging challenges and presenting examples of solutions to understanding the various points of view represented by this
population of students, this review aimed to empower more researchers to design studies to seek their input.
... For the purpose of this synthesis, student input is defined as opinions, beliefs, perspectives, or perceptions. This definition purposefully emphasizes subjective data that has been traditionally challenging for researchers to acquire from students with SIDD (Biklen & Moseley, 1988;Dennis, 2002). If a study contained student input only for social validity and not as a goal of the research, it was excluded. ...
... Naturally it is worth discussing to what extent the participants' hopes and dreams were mixed with their actual experiences. Their intellectual disability also had to be taken into consideration when planning and conducting the interviews (Knopp Biklen & Moseley, 1988;McDonald, Keys, & Henry, 2008). Heal and Sigelman (1995) emphasize that the validity of an interview with participants with limited intelligence depends greatly on the format of the interview questions. ...
The phenomenon of falling in love among people with intellectual disability has not
received much attention in research. In this study, seven Finnish young adults (5 women
and 2 men) with mild intellectual disability (ID) were asked about their experiences of
falling in love. They were interviewed with a qualitative themed interview method. The
data were analyzed with content analysis by searching the participants‘ descriptions of
partner selection, the event of falling in love, and how falling in love has changed their
lives. The study showed that that young adults with ID were familiar with and able to
describe falling in love concretely and in a very positive manner. Love was seen as an
important part of well-being. The findings suggest that people who live or work with
young adults with ID should be prepared to support them in various phases of love in a
way that enhances their cognitive love skills and self-determination in intimate
relationships.
... Flere forskere har rapportert problemer med å intervjue personer med utviklingshemming, til tross for at de er villige til å delta (Barron, 1999;Biklen & Moseley, 1988). Mange kan for eksempel ha lett for å gi bekreftende svar, velge det siste av flere kjente svar, eller ha vansker med å svare i det hele tatt (Finlay & Lyons, 2001). ...
Artikkel 58 Spesialpedagogikk 0116 Forskningsartiklene i Spesialpedagogikk er underlagt strengere form-og innholdskrav enn fagartiklene. Artiklene blir vurdert av to anonyme fagfeller (blind review) i tillegg til redaktør.
... The understanding that there are multiple occasions for male students to perform different masculinities or " do boy " takes on added significance in relation to debates on choosing masculinities and disability (Sparks et al., 1999). This is because a kind of, " hybridised masculinity " exists in British society that " is nothing less than the emergence of a more fluid, bricolage masculinity, the result of " channel hopping " across versions of the masculine (Beynon, 2002, 6, cited in Jones 2002). " This represents the post-modern man, and illustrates that core elements of masculinity are difficult to identify. ...
... On the other hand, the fact the difficulty of questions in {[Child]Adult} and {[Adult]Adult} were statistically comparable suggests that here participants' verbal behavior did confirm stereotyped assumptions about what types of questions one should ask another person on the basis of their physical age and independent of their actual capacity answer such questions. Considering the literature on situational ambiguity and heuristic processing (e.g., Bohner, Chaiken, & Hunyadi, 1994;Chaiken & Maheswaran, 1994) (Biklen & Moseley, 1988;Booth & Booth, 1996). It is perhaps more socially acceptable to flatter a child stranger's intelligence by asking them adult-level questions than it is to imply a middle-aged stranger's lack of intelligence by asking them child-level questions, as doing so would contradict the status usually ascribed to members of their age-group (see Barker, Giles, & Harwood, 2004;Harwood, Giles, Clement, Pierson, & Fox, 1994). ...
ABSTRACT In two studies based on Stanley Milgram's original pilots, we present the first systematic examination of cyranoids as social psychological research tools. A cyranoid is created by cooperatively joining in real-time the body of one person with speech generated by another via covert speech shadowing. The resulting hybrid persona can subsequently interact with third parties face-to-face. We show that naïve interlocutors perceive a cyranoid to be a unified, autonomously communicating person, evidence for a phenomenon Milgram termed the "cyranic illusion." We also show that creating cyranoids composed of contrasting identities (a child speaking adult-generated words and vice versa) can be used to study how stereotyping and person perception are mediated by inner (dispositional) vs. outer (physical) identity. Our results establish the cyranoid method as a unique means of obtaining experimental control over inner and outer identities within social interactions rich in mundane realism.
... Results of the study were expected to expand theoretical knowledge of career development for this population and to formulate a basis for planning career development programs. We used a qualitative inquiry method because of its usefulness for exploring phenomena that are not clearly defined and also to bypass these participants' possible deficient capacities for responding to quantitative inventories (Biklen & Mosely, 1988;Denzin & Lincoln, 1994). The consensual qualitative research method of analysis (Hill, Thompson, & Williams, 1997) was used because of its systematic, rigorous study of the open-ended responses ofa small sample (Pearson & Bieschke, 2001). ...
Semistructured interviews were conducted with 16 Israeli adolescents and young adults with mild mental retardation to examine their perceptions of the world of work. A consensual qualitative strategy of analysis (C. E. Hill, B. J. Thompson, & E. N. Williams, 1997) yielded 4 domains (Definitions of Work, Reasons for Working, Self-Awareness, Knowledge About the World of Work) and 12 categories. Although respondents showed strong willingness to participate in the world of work, they had little information regarding this realm. Implications are discussed for career development programs targeting young persons with mental retardation and community and family involvement in such programs.
... For example, participants in the friends focus group were asked to comment on their own emotional reactions to personal experiences with challenging behavior. The focus-group probes also took into account the cognitive abilities of persons with mental retardation and/or autism using methods described by Biklen and Moseley (1988) such as avoiding open-ended questions and breaking requests for information into parts so that separate questions about each part were asked. Although the three research questions were used as a general guide, participants were encouraged to address the issues they considered to be most important to them. ...
Data from five focus groups, each representing a different stakeholder constituency interested in the challenging behavior of individuals with mental retardation and/or autism, were reported. Emergent themes across administrators and policy makers, families, friends, individuals with disabilities, and teachers and practitioners included current barriers faced; practical, positive solutions found; and preferences for helpful informational products concerning challenging behavior. Key recommendations focus on the implications of this information for research, training, and dissemination activities.
... The use of open-ended questions with people with learning disabilities has generally been discouraged due to a low level of responsiveness (Bell, 1985;Biklen & Moseley, 1988). However, other authors have supported the use of open questions. ...
Much of the discussion of capacity to consent has focused on how capacity can be assessed. However, in focusing on the assessment of capacity of people with learning disabilities, information from studies of human judgement and decision-making in the general population has been ignored. This paper reviews the main factors that affect an individual's capacity to consent and examines the integration of research into these factors in the general population with that of people with learning disabilities. A person's capacity to consent is considered to be affected by three main processes: comprehension (ability to understand and retain information), decision-making (ability to weigh up information and reach a decision) and communication (ability to communicate the decision made). The difficulties people with learning disabilities may have in these processes are discussed, and possible ways of overcoming these limitations are suggested.
... Various data were collected for the research facilitator including students' images and video clips, their narratives and stories, and the research facilitators' field notes and photographs. These methods were adopted because growing evidence in the field of disability perspective research indicates that multiple and intensive data collection strategies are necessary when one presumes that the perspectives of people with ID are credible and valuable (Biklen & Moseley, 1988;Bogdan & Biklen, 1992;Cinamon & Gifsh, 2004;Mactavish et al., 2000;Taylor & Bogdan, 1998) and are revealed over time (Paiewonsky, 2005). Given the amount of data that were collected, identifying a process to organize and examine relationships among concepts that emerged from the study was paramount from the start (Phelps, Fisher, & Ellis, 2007). ...
Students with intellectual disabilities are taking the lead conducting participatory action research (PAR) to chronicle their college experience as part of a national college access initiative.This research currently involves college students with intellectual disabilities documenting their experiences using multimedia tools. These data are then shared via a digital storytelling website, VoiceThread. This article presents an overview of PAR, digital storytelling, and the methodology used to implement PAR with students with intellectual disabilities. Themes from the students’ work highlight their impressions of college, their adjustment to new expectations and responsibilities, and their recommendations to improve this experience.The researcher’s findings and conclusions about facilitating research with young adults with intellectual disabilities are described.
... As Howe (1988) and Gage (1989) suggested, the capacity of both quantitative and qualitative research perspectives to provide complementary rather than competing analyses of the same events can only enrich our ability to both construct an understanding of events and develop some hypotheses that can later be tested in a more positivistic tradition. The applicability of qualitative research procedures in education has been the focus of renewed interest (Biklen & Moseley, 1988;Miles & Huberman, 1988;S. Stainback & W. Stainback, 1984), and it has been suggested that these procedures can be especially useful in the study of issues related to supporting integrated educational services (Stainback & Stainback, 1989b; but also see Gent & Mulhauser, 1988). ...
During this 3-year field study, we examined the experiences of educators and children as they participated in the full educational inclusion of one child with severe disabilities. Data from interviews, sociometric measures, videotapes, and field notes were used to present the perspectives of administrators, general and special educators, students, and Taylor's parents. Benefits to Taylor and her classmates are discussed as well as recommendations for support of schools beginning full inclusion efforts.
p> The delivery of Religious Education to children and adolescents with severe intellectual disabilities is based upon the implicit assumption that such pupils have the cognitive capacity to comprehend religious principles in the first place. Furthermore, the concept of immortality, in its various forms, originates from the cessation of a corporeal existence, although there is little evidence that the intellectually disabled have any understanding of the finality of death. Additionally, while religiosity may be assumed, spirituality is almost completely neglected. This renders the intellectually disabled increasingly vulnerable to medical and judicial ethics in relation to ‘quality of life’ decision-making, as only the neurological and motor functioning of the person is assessed and valued. Furthermore, therapeutic interventions such as bereavement counselling and palliative care should address the totality of the person. However, this is difficult to achieve with existing assumptions and knowledge.
The pedagogy of ‘Special’ religious education’s taxonomy is hierarchical in its exposure to non-Christian religious and spiritual interpretations. Alternative belief systems may be more accessible to the intellectually disabled, enabling the person to make sense of their own and others’ mortality. This thesis presents phenomenological accounts from six intellectually disabled minds: from within such complex but impaired chambers, it represents the search for both gene and genie. </p
Qualitative research comes with its fair share of challenges; however, those challenges are often amplified when interviewing individuals with intellectual and developmental disabilities. A research project, Friendly Housemates, was conducted where people with intellectual and developmental disabilities were matched with post-secondary students to live together as housemates. Drawing on experience gleaned from interviews conducted for the study and earlier research, recommendations are made for collecting, analyzing, and reporting data from participants who are quiet or have expressive language difficulties. These practices will help to ensure that the voices that are so often relegated to the fringes are brought to the disability research discourse.
Background
There is a need for appropriate screening tools for case identification of autism spectrum disorder (ASD) in those with intellectual disabilities (ID) given the high co-occurrence of the two conditions. The AQ-10 is the screening tool recommended by NICE for the identification of ASD in adults with a borderline or mild intellectual disability. However, the AQ-10 was not developed with this population in mind.
Method
A mixed-methods approach was used to investigate the utility of the AQ-10 in its original form as a case identification tool. The AQ-10 was then redesigned and piloted. Qualitative results revealed individuals with a borderline or mild ID found the AQ-10 too inaccessible in its current format.
Results
Following revision, the diagnostic validity of the revised measure (AQ-10-ID) showed good sensitivity (0.85) and specificity (0.77), whereas the diagnostic validity of the original AQ-10 was poor. The internal consistency for the AQ-10-ID was 0.67 and 0.30 for the AQ-10.
Conclusions
These findings indicate that changes may be needed to the AQ-10 before clinicians consider using as a screen tools for adults with an intellectual disability.
This paper outlines three theological stances, rooted in the perspective of social justice, that can form the basis of a pastoral praxis which responds to the circumstances of people with learning disabilities. Listening and responding to the marginalisation of people with learning disabilities challenges the Church to greater wholeness in community and provides a basis for mutual care grounded in interdependence.
This article explores two issues involved in conducting qualitative research: 1) the essentials of data collection and 2) the unique role of the researcher in the data collection process.
Mastery of qualitative research and its methods can be a challenge for doctoral students who often have had more academic course exposure and practical experience with quantitative research. Qualitative courses frequently provide a theoretical preliminary understanding, but it is the rich “on-the-ground” experience of doing research that synthesizes the learning, allowing a student to fully appreciate qualitative research as their own. This article presents the experience of a doctoral advisor and a student in the process of coaching a qualitative dissertation. Individual reflexivity, dialogic meaning making, and meeting notes from the dissertation process comprise the data sources for this inquiry. The instructor’s teaching approach is discussed as well as the student’s knowledge, values, and skills employed during the learning process. Additionally, two ethical dilemmas encountered by the student are examined, as well as use of a newly minted special education PhD as a qualitative research consultant. Technological tools such as Skype and Dropbox were used to bridge the geographical distance between their locations. Both the advisor and student offer insight into the experience, highlighting what worked well for them, lessons learned, and recommendations for future student/instructor dyads. The student finished his dissertation in four semesters, and won an “Outstanding Dissertation” Award, and is now cowriting subsequent journal articles with his dissertation chair. Thus, it is concluded that teaching qualitative research during the dissertation process creates a bridge between graduate course work and the practical application of qualitative methodology, in order to transition doctoral students to early career PhD-level researchers.
People with intellectual disability cannot assume that they can speak up for and represent themselves. A host of socially constructed factors act as barriers to their becoming self-advocates. This book analyses the nature of these factors and investigates how the label 'intellectual disability' is understood and interpreted. It also analyses the power imbalance between people with intellectual disability and non-disabled people, an imbalance which leads to the perpetuation of dependence of the former on the latter. The book proposes self-advocacy as a way of providing an environment in which this power imbalance can be redressed, negative perceptions of the label 'intellectual disability' challenged, and independence and autonomy promoted. In this way, contexts can be created in which the voices of people with intellectual disability are heard and valued. Self-advocacy thus enables people with intellectual disability to become more active agents in their own lives with the necessary support. © Peter Lang AG, International Academic Publishers, Bern 2013. All rights reserved.
This study, based on the experiences and perceptions of two young adults living with disabilities (one with Down Syndrome and the other with Spina Bifida and deafness), examines the notion of disability as a socially constructed phenomenon. Anecdotal observations were made of these two young adults and interviews conducted with them and their mothers. The results found differing social attitudes and reactions experienced by the individuals with disabilities, which in turn led to different consequences in terms of their self-esteem. The implications of re-constructing the definition of disability are discussed, as well as the appropriate education and social services that might be provided for people with disabilities.
This study examined the correspondence of an employment evaluation system, the Job Observation and Behavior Scale (JOBS) and the JOBS: Opportunity for Self-Determination (JOBS: OSD), to establish whether teachers' ratings of students' work performance and support needs match students' self-determined perceptions of these same employment variables. It extends previous research on the correspondence between evaluation ratings by adult employees and their work supervisors. Results showed that JOBS ratings by teachers differed significantly from students' self-determined ratings for all of the JOBS' subscales (Work-Required Daily Living Activities, Work-Required Behavior, and Work-Required Job Duties), with students consistently rating their work performance higher than the teachers. Also, students rated less need for support to produce their performance, relative to their teachers' ratings.
This meta-analysis examines the effectiveness of functional mathematics instruction, specifically purchasing skill instruction, for individuals with disabilities. Twenty-eight intervention studies were identified and reviewed. Because all studies employed single-subject research designs, a nonparametric procedure, the percentage of nonoverlapping data (PND), was used to estimate treatment effects. Results indicated a moderately positive effect for purchasing skill instruction (median PND = 87%). Maintenance (median PND = 100%) and generalization effects (median PND = 86%) revealed large and moderate effects, respectively. Further categorical comparisons indicated that variables such as participants' entry skills, money skill adaptations, type of purchase, error correction procedure, and instructional setting were related to the treatment effectiveness.
Social science researchers are demonstrating a renewed interest in the use of qualitative methods to develop new knowledge and theory. In this chapter we explore this renewed interest by providing a brief overview of the historical preferences and precedents in research methods and by defining qualitative methods. We describe several of the more popular types of qualitative approaches, discuss criteria for evaluating adequacy of qualitative studies, demonstrate the application of qualitative methods in clinical child psychology, and finally, outline some current resources for training opportunities in qualitative methods.
Qualitative research methods were used to conduct an in-depth study of an inclusive elementary school with the intent of characterizing its context and practices. It was reasoned that such detail would provide valuable insights for those involved in systems change efforts. Data were gathered over a period of 30 months and included observational fieldnotes, interviews, shared anecdotes from teaching staff, and an analysis of school publications and products. Multiple methods of triangulation were employed to validate the data collection process and our findings. Descriptive themes emerged from the data that characterize the nature and evolution of this school's reform toward a more inclusive context. These themes are discussed and implications for future research are presented.
Youth with disabilities, compared with their typical peers, have a higher likelihood of dropping out of school and experience poorer transition outcomes. Evidence supports programs and interventions focusing on inclusive education and leadership skills results in successful transition to college and career. This article describes the experiences of six youth with and without disabilities as they participate in the Youth Empowerment Series, a project helping students navigate the path to postsecondary education and/or employment. A phenomenological approach and photoelicitation was used to gather information about participant’s transition experiences. Findings suggest participants valued forming personal connections and friendships as they entered adulthood. Themes included acceptance, leadership, self-advocacy, inclusion, and planning for future goals. Participants were aware of transition needs and goals and had an understanding of the support systems needed to reach their goals. Future research on the role of friendship networks in transition planning as a natural support is warranted.
The present study examined 154 children with mild intellectual disability (MID) attending special schools with regard to their reports of loneliness. Semi-structured interviews revealed that more than half of the students with MID reported feelings of loneliness. They tend to have as friends children from their neighborhood, friends of their siblings, children of their parents' friends and from their school. Lonely children with MID tend to attribute their isolation to interpersonal deficits, lack of contact with peers and physical appearance, while one fourth cannot justify why they do not have any friends. Children with MID report that they withdraw from social interactions, engage in solitary activities and actively look for friends to cope with their feelings of loneliness and rejection, while very few resort to physical or verbal aggression. Moreover, boys and children living in smaller towns reported less feelings of loneliness than girls and children living in the capital.
Researching research is not a common theme in educational drama. Nor is the educa- tional drama process from a participant perspective a typical focus of research, at least not if the participants are disabled. Yet this is the theme of this thesis, a drama in three acts.
The aim of this thesis is to describe, analyse, and discuss both the ways in which research within educational drama can be carried out and represented, and the experiences of the participants of the educational drama process.
The theoretical framework that steers the research process is built up of two pairs of frames, each of them, like Russian nesting dolls, containing further frames. The first frame, relating to the outcomes of conducting research in educational drama, comprises philosophical, representational, and personal theories. As the second question asks what educational drama is, the subject related frame is built up of pedagogical, drama educational, and aesthetic theories.
The study in its entirety follows the structure of the researcher’s hermeneutical learning process and takes the form of a journey starting from what is familiar, stretching towards what is new and different, and finally returning back to the beginning with a new view on what was there at the start.
The thesis consists of two separate but related studies. The first, a familiar study conducted earlier, Alpha in Act I, was carried out among upper secondary school pupils. In the second, the new and therefore unfamiliar study, Omega in Act III, the participants are adult individuals who are physically and communicatively disabled. In between these two Acts an element of “Verfremdung” where the Alpha study is systematically scrutinized as the purpose is to teach and to manage the reader to think. Meta-discussions on the philosophical issues of the study are conducted throughout the text, parallel to the empirical parts.
The outcomes of the first research question show that philosophical, methodical, and representational consistency is crucial for research. While this may sound like stating the obvious, this has nevertheless not always been considered fact, especially not within qualitative research. The outcomes further stress that representational issues are also to be recognized when presenting non-rational aspects of educational drama. By wording the world, through the use of visualising language, the surplus of meanings of educational drama can be, as they are within this study, made visible, sensible, and almost tangible, not only cognitively understandable.
The outcomes of the second question point to the different foci of the studies, with Alpha focusing on the rationally retold experiences and Omega focusing on non- rational experiences. The outcomes expose educational drama as a learning process comprising doing, reflecting, and being. The doing aspect communicates the concrete efforts in creating a piece of theatre, while the being aspect relates experiences of being as situated, embodied and sensuous, reciprocal, empowering, aesthetic and artistic, and existential. Reflection is the twine that runs throughout the process and connects both doing and being.
In summary, the outcomes could be formulated as “learning from learning how to make theatre”.
Adults with cognitive disabilities residing in group homes face special challenges in establishing and maintaining friendships, and in coping when they are disrupted - for example, when a housemate moves to a different level of care, or a staff member quits or is dismissed. On the basis of a small-scale qualitative study, this article raises concerns about the frequency of such disruptions - their psychological and social effects in the lives of people with limited cognitive abilities and limited social support. It also highlights a number of difficulties for participants in telling their stories of loss and suggests steps that agencies, social workers, and family members can take to support significant relationships for people with cognitive disabilities, even when disruptions are unavoidable.
Persons with developmental disabilities are not usually given the opportunity to make meaningful choices concerning career options. There are, however, five types of partial involvement in career decision making they may experience. Counselors have considered client expressions of occupational preferences prior to deciding on appropriate vocational goals, have merely asked workers to sign a prepared rehabilitation plan, or—at the highest level of client participation—have involved workers and their families in team planning meetings. Several recommendations for both systemic and personal interventions to facilitate career decision-making by workers with developmental disabilities are discussed.
Facilitated communication involves hand-over-hand or hand-on-forearm support of students as they communicate through pointing at pictures, letters or other objects. Over time, it is expected that the hand and arm support can be faded back. This observational study describes an effort to introduce facilitated communication to 22 students, ranging in age from 3 years 10 months to 21 years, in several US public schools. The students are all labeled autistic and do not speak or speak only with echolalic phrases. The findings include observations of the students communicating with facilitation, language samples, and conversations by the students. The students reveal unexpected literacy and numeracy skills. The appearance of these abilities raises a number of questions concerning prior assumptions about autism, communication, independence and interdependence, and the education of students with and without disabilities.
This paper contains the results of an eight month qualitative study of a group of young adults called a â–˜circle of friendsâ–™, in Ontario, Canada. The â–˜circle of friendsâ–™ concept has become increasingly popular in the field of disability in the last few years. In it, unrelated age peers are expected to befriend and support a person with a label. Utilizing participant observation and in-depth qualitative interviewing, the researcher gathered data which revealed a group ethos. The group attempted to make their activities seem as â–˜naturalâ–™ and â–˜normalâ–™ as possible. It was also found that the â–˜circleâ–™ meant little or nothing to the supporters involved, but their friendships with the labelled person were quite important to them. The results of the study increase our understanding of how one such group operates, and the meaning participation has to those involved. As well, we can begin to build a theory about the relationship between friendship and support in such groups.
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.
Background
Assessing the perceptions of individuals with intellectual disability ( ID ) and developmental disabilities ( DD ) is an essential part of evaluating and planning services and an important component of respect for self‐direction and autonomy. It can be difficult, however, to assess satisfaction in such a way that individuals with disabilities' actual perceptions of satisfaction are accurately represented because of intellectual and communication difficulties they may have, the restricted range and nature of service systems, and the limitations of strategies used by some researchers.
Method
The purpose of this literature review was to systematically examine research studies designed to solicit personal satisfaction information from individuals with ID and DD . We reviewed 29 studies that met inclusion criteria to determine (1) who were participants in the studies, (2) what processes researchers used to obtain opinions and perspectives of persons with ID and DD , and (3) how researchers ensured the credibility, accuracy and voluntariness of participants' responses.
Results
Findings revealed that most of the research participants had ID with higher IQs and limited needs for supports. Researchers utilised a variety of processes to elicit perceptions of satisfaction. Most studies employed individual interviews; researchers addressed comprehensibility of questions in a number of ways (e.g. use of visuals, adjusting wording of questions, providing clear examples). Few studies reported training interviewers or taking into account participants' primary language or cultural background. No studies reported educating participants about how to understand the satisfaction information data or how to use it in advocating for more appropriate supports.
Conclusions
Assessing the satisfaction with supports and services of individuals with ID and DD is complex particularly for persons with extensive support needs. Continued research using varied conceptual frameworks and new technologies is needed. Also helpful will be teaching persons with disabilities about the assessment process and how to use its results.
The places where people spend time and the experiences they have in these places are critical to the development of a sense of place and community connections. This study, based on individual experiences, reveals that adults with developmental disabilities commonly spend time in places designated for people with disabilities versus the general public, in public versus private places, and in places characterized by business transactions versus social interactions. Within the community, the research participants have a variety of experiences. They range from a sense of vulnerability to a sense of safety, a feeling of being socially anonymous or isolated to a feeling of being known, from disaffiliation to identification, from unfamiliarity to familiarity, from a sense of being rejected to a sense of being liked or accepted, and from a sense of unwillingness/willingness to provide accommodations. The article concludes with strategies that service providers and others can use to increase opportunities for positive community experiences and sense of place.
This article discusses the methodological issues and pragmatic dilemmas confronted by a group of researchers conducting focus groups composed of people with disabilities. As an initial component of a mixed-method, longitudinal research project, the intention was to gather perceptions of the ways in which recent policy initiatives shape the lives and employment experiences of people with disabilities. We present the methodological design issues we encountered in planning and conducting the focus groups with the hope that our reflections inform future qualitative research designs involving people with disabilities.
Virtually absent from the debate surrounding the benefits and setbacks of community living for the developmentally disabled is an understanding of community life from the viewpoint of the clients. This article presents findings from an ethnographic study of seven mildly developmentally disabled adults. The study challenges the assumption that integrated community housing provides an independence similar to that enjoyed by the normal population. It is proposed that although service support focuses on the behavior of developmentally disabled individuals, it needs to go a step further to the state of mind of the clients. Being in control of one's own life, including enjoying the freedom to make mistakes, is presented as a significant prerequisite to the traditional living goals of independence and integration.
This paper describes a participant observation approach to exploring choice making by people with an intellectual disability in three different home settings‐‐a private family home, a community group home and an independent living situation. It identifies some of the factors which affect choice making, including experience at making choices, routines, the role of support people, and communication. The paper illustrates these factors with examples from the different settings. Finally, it provides practical suggestions for service providers to increase the involvement of people with an intellectual disability in choice making situations.
This paper reports on part of a wider study concerned with the collaborative efforts of an inquirer and six people with an intellectual disability, to develop a grounded theory explaining the processes by which these informants manage the relationships within their personal communities. The study was conducted through a series of in-depth interviews with each informant; a process characterised by information sharing, tentative theory development and elaboration, and informants' checking the accuracy of the emerging theory. This inductive approach allowed not only an insight into the lives of each informant, but recognised the informants' expertise in matters concerning their own lives and thus facilitated the emergence of theoretical elements of relevance to the informants themselves. The focus of the paper is on the collaborative or partnership approach adopted. The outcomes of the research partnership are detailed and implications drawn for the role of research in the lifestyles of people with an intellectual disability.
Quality of life issues increasingly have been the focus of research in the field of disabilities. Quality of life has been described by some researchers as encompassing several key factors; many of the descriptions have included the extent to which opportunities for the exercise of choice are present in one's life as a significant element of the construct. A case study was conducted to document the perceptions of two older adults with severe learning difficulties regarding their quality of life and their experience with choice-making in areas of life they identified as significant to them. Interviews, observations and reviews of written documents were conducted. Although the participants expressed overall satisfaction with their lives, they clearly were not content with some significant areas of their lives. Furthermore, in these significant areas, the participants lacked many choice-making opportunities typically available to people without disabilities. The participants did not have a meaningful degree of influence over decisions regarding their residence, the people with whom they lived, their personal finances or their daily routines. The results are discussed in terms of theories proposed in the current literature regarding choice-making and directions for future research are suggested.
While research findings are not necessarily the most potent factors in determining service provisions for people with disabilities, research does play an important role in establishing whether program goals are being met as well as assisting service providers in achieving their goals. In the context of severe intellectual disability the current research leterature is often flawed by the quite imprecise definitions used to identify the people being studied, leading to difficulties in the interpretation of the results. Suggestions are made that may help to reduce these and other methodological deficiencies. A range of pressing research questions relating to service delivery programs are raised. Finally, it is suggested that cooperative research centres of excellence should be established in Australia along similar lines to the North American Research and Training Centres in Mental Retardation and the University Affiliated Programs.
Plans for a national demographic and services study of people born between 1890 and 1939 and categorized as mentally retarded or intellectually handicapped are outlined. So far 1347 persons have been located. The investigation has confirmed the importance of local case finding and an increase in numbers of at least ten per cent is expected. Results from interviews with 91 people in the provinces of Otago and Southland are reported. These indicate a wide range of skills and life experiences in the group. Implications for service planning are noted. The ability of older people with intellectual disabilities to participate in services planning is discussed.
Quotes at length edited transcripts of discussions with a 26-yr-old man who has been labeled mentally retarded, and raises questions about the concepts of intelligence and mental deficiency. The insider’s view offers understanding of how diagnostic categories affect the life of the person categorized. (23 ref)
A number of issues related to conducting ethnographic research in schools are explored under four criterion headings: (1) appropriateness of the problem, (2) appropriateness of the ethnographer, (3) appropriateness of the research "climate," and (4) appropriateness of expectations for the completed study. The purpose of the paper is to air some of the issues that arise between those who do ethnography in educational settings and those who commission it, by examining recent experience and customary expectations. With the express purpose of fostering further dialogue, the author states his own position on many of the issues, but the critical function served by the paper is to work toward explicating problems rather than necessarily resolving them.
The ethnographer's findings are shaped, for good and for bad, by her roles as a researcher and as a person.
If one undertakes naturalistic evaluation without formal training, there are some important considerations and sources of information to keep in mind.
There has been a growing interest in the potential contributions qualitative research could make to “scientific”/scholarly inquiry in special education (Edgerton, 1984; Stainback & Stainback, 1984; Taylor & Bogdan, 1984). The purpose of this paper is to provide an impetus for more widespread familiarity with and use of qualitative research methodology among educators concerned with the education of persons with severe handicaps by drawing together and attempting to clarify the present state of the art in qualitative research methodology.
Based on the author''s participant observation research in a state institution for the mentally retarded, this article deals with moral and ethical dilemmas that occur in research at settings characterized by routine human abuse. After a discussion of the choices posed by these dilemmas, the author presents preferred solutions. The importance of anticipating potential moral and ethical dilemmas prior to entering the field and delineating the relation between professional ethics and personal morality are discussed as implications of this problem.
This paper shows how fieldwork experiences create a situation in which the researcher and the native reveal their characters in the course of requesting and offering information about the study. The personalities of the fieldworker and the natives help to color and may even define the nature of the interaction. It would be a mistake to ignore the effect of character on the content of studies. Researchers learn about their own strengths and weaknesses as fieldworkers by examining that effect.
- McPherson G.
- Becker H.
- Bogdan R.
- Bogdan R.
- English F. W.
Job satisfaction of workers in supported employment. Paper presented at the annual meeting of The Association for Persons with Severe Handicaps
- C Moseley