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The impact of switching on family caregivers of children with cerebral palsy
- Authors:
- NICOLSON Amy, MOIR LOIS, MILSTEED Jeannine
- Journal article citation:
- Disability and Rehabilitation: Assistive Technology, 8(2), 2013, pp.169-175.
- Publisher:
- Taylor and Francis
- Place of publication:
- London
Purpose: This study aimed to enhance our knowledge and understanding of switching, as assistive technology, and how it impacts on family caregivers of children with cerebral palsy with GMFCS levels four or five. Methods: A qualitative method using a constructivist approach was adopted. Purposive sampling was used to recruit five caregivers to participants in this study. Framework analysis was applied to the data collection of semistructured interviews conducted with each caregiver. Findings: The three main themes identified were an investment in the future, resulting in joy and hope. The learning process of switching is resource intensive, time consuming and effortful for caregivers. If caregivers do not perceive this as an investment, then they may not experience the joy switching can bring to their child, and in turn the joy, hope, and caregiver satisfaction it can offer for the future. Conclusion: This research indicates that caregivers often have the greatest impact on whether switching will be adopted in the home. The greatest impact on caregivers is related to their perception on the competence of therapists and coordination of services provided. (Publisher abstract)
A qualitative study of adult AAC users’ experiences communicating with medical providers
- Authors:
- MORRIS Megan A., DUDGEON Brian J., YORKSTON Kathryn
- Journal article citation:
- Disability and Rehabilitation: Assistive Technology, 8(6), 2013, pp.472-481.
- Publisher:
- Taylor and Francis
- Place of publication:
- London
Purpose: To study the experiences of adults who use augmentative and alternative communication (AAC) systems and methods when interacting with medical providers, specifically primary care providers. Method: Individual face-to-face interviews were conducted with 12 participants, four of whom also participated in an online focus group. Diagnoses of the participants included cerebral palsy, undifferentiated developmental disability, head and neck cancer, amyotrophic lateral sclerosis and primary lateral sclerosis. Transcripts from the interviews and the focus group were analysed to create a list of codes. From these codes themes that captured particular concepts discussed were identified. Results: Participants described multiple frustrations in communicating with medical care providers. Themes that arose included: planning and preparing for the appointment, time barriers, inappropriate assumptions, relationship building and establishing rapport, medical decision making and implementing the plan. All but one participant reported bringing a caregiver with them to their appointments and this person, whether a family member, friend or paid aide, had a substantial role throughout the appointment. Conclusions: The participants’ stories highlight important barriers they experience when communicating with medical providers. These barriers bring attention to the need for education for physicians, caregivers and patients with communication disabilities, along with increased research to improve patient--provider communication. Implications for Rehabilitation: a) Patients with communication disabilities face multiple barriers to communicating with medical care providers.; b) Patients, caregivers, and medical care providers all play a role in effective and ineffective communication during appointments; c) Education for medical care providers, caregivers, and patients with communication disabilities, along with increased research is needed to improve patient-provider communication. (Publisher abstract)
Enablement through provision of assistive technology: case reports of two children with physical disabilities
- Authors:
- DALTON Cherie, HOYT-HALLETT Gillian
- Journal article citation:
- British Journal of Occupational Therapy, 76(2), 2013, pp.108-111.
- Publisher:
- Sage
Using case-reports, this paper explores the occupational deprivation of two 12-year old girls with physical disabilities and the way in which assistive technology was used facilitate occupational engagement and mitigate their experience of occupational deprivation. Prior to receiving their equipment both girls demonstrated a strong desire to connect with others and participate in school, home and the community but were unable do so because of the limitation of their physical skills, The case reports trace their skill development over a period of two years. Once provided with appropriate assistive technology for mobility and communication, each child participated in meaningful occupation, they became more involved at school and their dignity was increased. The authors suggest that these case studies should encourage occupational therapists to consider how occupational deprivation may be reduced through assistive technologies among children with physical disabilities.