Exploring the support needs of Pakistani families with disabled children: A participatory action research study

This thesis was submitted for the degree of Doctor of Philosophy and awarded by Brunel University.Pakistani families with disabled children are among the most disadvantaged population groups in the UK. Previous research has indicated difficulties with accessing support services as well as problematic attitudes towards disability within the Pakistani community. As no substantial improvement in their situation was evidenced since early studies in the 1990s, a participatory action research study was undertaken with six Pakistani families to explore how an actionoriented, emancipatory approach could facilitate them to explore their support needs and how these might be met, in further depth. An occupational justice perspective was used to clarify how cultural and familial expectations influenced family members’ occupational balance and well-being. After an exploratory phase in which all family members were interviewed and family interactions observed in their own homes, three action research groups were formed for women, men and children respectively. Each group carried out their own action research around their chosen topic. Through participation in the project the participants gained important skills as well as a better understanding of their situation and how they could be more proactive in improving it. Furthermore, the fact that all family members were actively involved in the project helped them to start implementing changes in behaviour and communication at home. Key findings of the study were that the importance of faith in accepting the disabled child and dealing with negative community attitudes needs to be recognised and fostered; that the social model of disability needs to be more explicit about the influence of religion and culture on the lived experience of disabled people; that the central support need of parents is for practitioners to build up a supportive relationship with them as persons in their own right; and that (the lack of) belongingness had a very significant impact on the disabled child’s and their mothers’ well-being

Environmental adjustment needs of children with special educational needs in Austrian mainstream schools : the child and teacher perspective

Children with special educational needs included in Austrian main stream schools are provided with special educational support, which aim to create learning environments, that meet the children’s needs on an individual level. Little is known about what adjustments children with special educational needs in mainstream school classes require to promote participation in school occupations. This is the first study in Austria exploring the student-environment-fit from self-perceived chil dren’s perspective and comparing this to teachers’ perspective by using the School Setting Interview. In this cross-sectional matched pairs study twenty-five children (mean age 12.5 ± 1.4) with special educational needs and twenty-one teachers from six Austrian second ary schools were interviewed. Participants’ ratings were analyzed descriptively and statistically with Wilcoxon-Sign Rank Test. Reported adjustments from the child and teacher perspectives were analyzed with qualitative content analysis and presented using the occupa tional, social and physical environmental dimensions from the Model of Human Occupation. Results indicate perceived student environment-fit differs between school activities as well as between children and teachers. Three out of 16 school activities showed a statistically significant difference between children and teacher matched-pair analysis. Children perceive more unmet needs then teachers. Most adjustments are reported in the social environment dimension and inform practitioners what adjustments are perceived to be useful for children with Special Educational Needs and their tea chers. Both children’s and teacher’s perspectives provide valuable information. Significantly, children in this study were able to identify required needs and describe adjustments. To increase participation in school occupations, children can and need to be actively included in the decision-making process

Exploring the support needs of Pakistani families with disabled children : a participatory action research study

Pakistani families with disabled children are among the most disadvantaged population groups in the UK. Previous research has indicated difficulties with accessing support services as well as problematic attitudes towards disability within the Pakistani community. As no substantial improvement in their situation was evidenced since early studies in the 1990s, a participatory action research study was undertaken with six Pakistani families to explore how an actionoriented, emancipatory approach could facilitate them to explore their support needs and how these might be met, in further depth. An occupational justice perspective was used to clarify how cultural and familial expectations influenced family members’ occupational balance and well-being. After an exploratory phase in which all family members were interviewed and family interactions observed in their own homes, three action research groups were formed for women, men and children respectively. Each group carried out their own action research around their chosen topic. Through participation in the project the participants gained important skills as well as a better understanding of their situation and how they could be more proactive in improving it. Furthermore, the fact that all family members were actively involved in the project helped them to start implementing changes in behaviour and communication at home. Key findings of the study were that the importance of faith in accepting the disabled child and dealing with negative community attitudes needs to be recognised and fostered; that the social model of disability needs to be more explicit about the influence of religion and culture on the lived experience of disabled people; that the central support need of parents is for practitioners to build up a supportive relationship with them as persons in their own right; and that (the lack of) belongingness had a very significant impact on the disabled child’s and their mothers’ well-being.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be particularly hard for people living with multiple disadvantage, such as disabled people from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participatory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these methods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented

Post-intervention Status in Patients With Refractory Myasthenia Gravis Treated With Eculizumab During REGAIN and Its Open-Label Extension

OBJECTIVE: To evaluate whether eculizumab helps patients with anti-acetylcholine receptor-positive (AChR+) refractory generalized myasthenia gravis (gMG) achieve the Myasthenia Gravis Foundation of America (MGFA) post-intervention status of minimal manifestations (MM), we assessed patients' status throughout REGAIN (Safety and Efficacy of Eculizumab in AChR+ Refractory Generalized Myasthenia Gravis) and its open-label extension. METHODS: Patients who completed the REGAIN randomized controlled trial and continued into the open-label extension were included in this tertiary endpoint analysis. Patients were assessed for the MGFA post-intervention status of improved, unchanged, worse, MM, and pharmacologic remission at defined time points during REGAIN and through week 130 of the open-label study. RESULTS: A total of 117 patients completed REGAIN and continued into the open-label study (eculizumab/eculizumab: 56; placebo/eculizumab: 61). At week 26 of REGAIN, more eculizumab-treated patients than placebo-treated patients achieved a status of improved (60.7% vs 41.7%) or MM (25.0% vs 13.3%; common OR: 2.3; 95% CI: 1.1-4.5). After 130 weeks of eculizumab treatment, 88.0% of patients achieved improved status and 57.3% of patients achieved MM status. The safety profile of eculizumab was consistent with its known profile and no new safety signals were detected. CONCLUSION: Eculizumab led to rapid and sustained achievement of MM in patients with AChR+ refractory gMG. These findings support the use of eculizumab in this previously difficult-to-treat patient population. CLINICALTRIALSGOV IDENTIFIER: REGAIN, NCT01997229; REGAIN open-label extension, NCT02301624. CLASSIFICATION OF EVIDENCE: This study provides Class II evidence that, after 26 weeks of eculizumab treatment, 25.0% of adults with AChR+ refractory gMG achieved MM, compared with 13.3% who received placebo

Minimal Symptom Expression' in Patients With Acetylcholine Receptor Antibody-Positive Refractory Generalized Myasthenia Gravis Treated With Eculizumab

The efficacy and tolerability of eculizumab were assessed in REGAIN, a 26-week, phase 3, randomized, double-blind, placebo-controlled study in anti-acetylcholine receptor antibody-positive (AChR+) refractory generalized myasthenia gravis (gMG), and its open-label extension