Coping, quality of life, and hope in adults with primary antibody deficiencies

BACKGROUND: Living with a chronic disease, such as primary antibody deficiency, will often have consequences for quality of life. Previous quality-of-life studies in primary antibody deficiency patients have been limited to different treatment methods. We wanted to study how adults with primary antibody deficiencies manage their conditions and to identify factors that are conducive to coping, good quality of life and hope. METHODS: Questionnaires were sent to all patients ≥20 years of age with primary antibody deficiencies who were served by Rikshospitalet University Hospital. The questionnaires consisted of several standardized scales: Ferrans and Powers Quality of Life Index (QLI), Short Form-36 (SF-36), Jalowiec Coping Scale (JCS), Nowotny Hope Scale (NHS), and one scale we devised with questions about resources and pressures in the past. Of a total of 91, 55 patients (aged 23–76 years) answered the questionnaires. The questionnaire study were supplemented with selected interviews of ten extreme cases, five with low and five with high quality of life scores. RESULTS: Among the 55 patients, low quality of life scores were related to unemployment, infections in more than four organs, more than two additional diseases, or more than two specific occurrences of stress in the last 2–3 months. Persons with selective IgA deficiency had significantly higher QLI scores than those with other antibody deficiencies. An optimistic coping style was most frequent used, and hope values were moderately high. Based on the interviews, the patients could be divided into three groups: 1) low QLI scores, low hope values, and reduced coping, 2) low QLI scores, moderate hope values, and good coping, and 3) high QLI scores, moderate to strong hope values, and good coping. Coping was related to the patients' sense of closeness and competence. CONCLUSION: Low quality of life scores in adults with primary antibody deficiencies were linked to unemployment and disease-related strains. Closeness and competence were preconditions for coping, quality of life and hope. The results are valuable in planning care for this patient group

The role of special education Teachers in facilitating peer relationships among students With mild intellctual disabilities in lower secondary School.

Background: Students with intellectual disabilities may lack sufficiently developed skills to initiate qualitatively good social interactions; thus, they might be in need of assistance. This study examined special education teachers’ role in facilitating peer relationships among students with mild intellectual disabilities in a mainstream school context. Materials and Methods: The study was based on qualitative semi-structured interviews with nine special education teachers who belong to special education groups in lower secondary schools. A thematic structural analysis was used to identify themes. Results: The teachers made substantial efforts to promote social competence and ensure optimal conditions to foster peer interactions. An “academic-oriented” education, divergent attitudes, challenges in teacher collaboration, and organizational constraints may be barriers. Conclusions: In a mainstream school, the role of special education teachers appears to be dependent on the basic values of the school management in terms of real opportunities to foster peer relationships among students with mild intellectual disabilities

Qualities in friendship - Within an outside perspective - Definitions expressed by adolescents with mild intellectual disabilities

Background: This study examined how adolescents with mild intellectual disabilities define qualities of friendship and discussed the extent to which these definitions adhere to established definitions of close friendship. Materials and Methods: The study was based on qualitative interviews with 11 adolescents in secondary school. The interviews were supplemented with information from six parents. A thematic structural analysis was used to identify themes. Results: Qualities of friendship were categorized as mutual preference, mutual enjoyment, shared interactions, care, mutual trust and bonding. The criteria for close friendship seem to be fulfilled, albeit to a moderate degree. Closeness and reciprocity appear to be significant in this study, although these features have been considered less relevant within this target group in previous research. Conclusions: Differences in definitions may explain divergent results compared with other studies, and the need to achieve equivalence in friendship may be another

Motivation for employment in Norwegian adults with mild intellectual disability: The role of competence, autonomy, and relatedness

In Norway, very few people with intellectual disability (ID) are employed, and most of them receive a disability pension. This suggests that they may not face a financial need for employment, but participation in the labor market may provide persons with ID with other benefits, such as social inclusion and self-realization. This article explores what motivates Norwegian adults with ID to participate in the labor market. The study is based on qualitative interviews with use of photovoice with seven employees from sheltered workshops and competitive employment, and their employers. A thematic structural analysis revealed the following themes: experience of self-efficacy, having sufficient workload, personal development, self-determination, salary, social relationships, and meaningful employment. These themes were then structured into three categories based on Ryan and Deci’s (2002) self-determination theory: competence, autonomy, and relatedness. Findings suggest that employees with ID value their work for the sense of self-efficacy that it gives them and for the social contact that the work floor provides. Participants reported to experience little autonomy and self-determination at work

A Semi-Structured Approach to Photo Elicitation Methodology for Research Participants With Intellectual Disability

Using photo elicitation with participants with intellectual disability is a creative approach to inclusive research as the method promotes research participation. Through the photographs that they take, individuals with intellectual disability convey their thoughts and experiences, without the high cognitive demands that are typical of many other data collection methods. People with intellectual disability rely on environmental support to function optimally in everyday life situations. This is also the case for their functioning in research situations. This article provides a novel contribution to photo elicitation methodology, as we share our experiences from using a semi-structured approach, which offers support and guidance to research participants with intellectual disability in the empirical phase of the research process. We discuss the benefits and challenges such a new approach could introduce. The article concludes that provision of adequate support is a prerequisite for successful research participation for individuals with intellectual disability, and our semi-structured approach offers a suggestion on how to deliver this support

Motivation for Employment in Norwegian Adults with Mild Intellectual Disability: The Role of Competence, Autonomy, and Relatedness

In Norway, very few people with intellectual disability (ID) are employed, and most of them receive a disability pension. This suggests that they may not face a financial need for employment, but participation in the labor market may provide persons with ID with other benefits, such as social inclusion and self-realization. This article explores what motivates Norwegian adults with ID to participate in the labor market. The study is based on qualitative interviews with use of photovoice with seven employees from sheltered workshops and competitive employment, and their employers. A thematic structural analysis revealed the following themes: experience of self-efficacy, having sufficient workload, personal development, self-determination, salary, social relationships, and meaningful employment. These themes were then structured into three categories based on Ryan and Deci’s (2002) self-determination theory: competence, autonomy, and relatedness. Findings suggest that employees with ID value their work for the sense of self-efficacy that it gives them and for the social contact that the work floor provides. Participants reported to experience little autonomy and self-determination at work

Employment for persons with intellectual disability in the Nordic countries: A scoping review

Background: The Nordic countries are renowned for their inclusive policies, yet persons with intellectual disability remain largely excluded from the labor market. A review of the existing knowledge base may inform policy makers who try to address this challenge. Method: The study uses a scoping review of 23 peer-reviewed journal articles to summarize three decades of research literature on employment for persons with intellectual disability in the Nordic countries. Results: Persons with intellectual disability value employment, but school-related factors may form barriers to their inclusion in the labor market. Support at the workplace is important but variable. There is a paucity of intervention studies in the Nordic research base, and despite the socio-ecological understanding of disability, few studies focus on supports to bridge the gap between personal capacity and environmental demands. Conclusions: A better coordination between the educational system and the labor market may pave the way towards higher levels of employment for persons with intellectual disability. Intervention studies that emphasize individualized supports and follow-up of older employees with intellectual disability are welcomed

Employment for persons with intellectual disability in the Nordic countries: A scoping review

Background: The Nordic countries are renowned for their inclusive policies, yet persons with intellectual disability remain largely excluded from the labor market. A review of the existing knowledge base may inform policy makers who try to address this challenge. Method: The study uses a scoping review of 23 peer-reviewed journal articles to summarize three decades of research literature on employment for persons with intellectual disability in the Nordic countries. Results: Persons with intellectual disability value employment, but school-related factors may form barriers to their inclusion in the labor market. Support at the workplace is important but variable. There is a paucity of intervention studies in the Nordic research base, and despite the socio-ecological understanding of disability, few studies focus on supports to bridge the gap between personal capacity and environmental demands. Conclusions: A better coordination between the educational system and the labor market may pave the way towards higher levels of employment for persons with intellectual disability. Intervention studies that emphasize individualized supports and follow-up of older employees with intellectual disability are welcomed

A Semi-Structured Approach to Photo Elicitation Methodology for Research Participants With Intellectual Disability

Using photo elicitation with participants with intellectual disability is a creative approach to inclusive research as the method promotes research participation. Through the photographs that they take, individuals with intellectual disability convey their thoughts and experiences, without the high cognitive demands that are typical of many other data collection methods. People with intellectual disability rely on environmental support to function optimally in everyday life situations. This is also the case for their functioning in research situations. This article provides a novel contribution to photo elicitation methodology, as we share our experiences from using a semi-structured approach, which offers support and guidance to research participants with intellectual disability in the empirical phase of the research process. We discuss the benefits and challenges such a new approach could introduce. The article concludes that provision of adequate support is a prerequisite for successful research participation for individuals with intellectual disability, and our semi-structured approach offers a suggestion on how to deliver this support

Facilitating qualitative research interviews for respondents with intellectual disability.

Qualitative interviews form an efficient tool when wanting to access the subjective experiences of an individual. For respondents with intellectual disability, facilitation of the interview may be necessary to help them provide rich descriptions. In this article, the authors discuss several communication techniques from counselling practice (silence and encouraging prompts, rephrasing questions; repeating, paraphrasing and summarising responses) as a means to improve the quality of the interviews. Examples to illustrate these techniques are provided. Further, possible threats to validity that may occur as a result of the facilitation are discussed, and ways to counter these threats are suggested. This is an Accepted Manuscript of an article published by Taylor & Francis in European Journal of Special Needs Education on 10 Dec 2017, available online: http://www.tandfonline.com/10.1080/08856257.2017.141380