Publications (35) View all
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Article: A qualitative study of adult AAC users' experiences communicating with medical providers.
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ABSTRACT: Abstract 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 analyzed 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 Patients with communication disabilities face multiple barriers to communicating with medical care providers. Patients, caregivers, and medical care providers all play a role in effective and ineffective communication during appointments. Education for medical care providers, caregivers, and patients with communication disabilities, along with increased research is needed to improve patient-provider communication.Disability and rehabilitation. Assistive technology 01/2013; -
Article: Development of items that assess physical function in children who use wheelchairs.
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ABSTRACT: : To assess the content, format, and comprehension of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric physical function related to mobility items for children who use wheelchairs (WCs). : During a cognitive interview, 14 children, aged 8 to 12 years, who use WCs, verbalized their thoughts when answering PROMIS items. The Questionnaire Appraisal System was used to code summarized text from the interviews. : The children requested items be more specific and include options for reporting adaptive ways of performing and participating. How they would answer the item depended on the situation and specific environmental supports and constraints they may have experienced. : As rehabilitation professionals develop and use self-reported outcome measures, they should explore what is important to children who use WCs regarding their views on physical functioning, the influences of the environment, and variability in the use of devices to assist with functional mobility.Pediatric physical therapy: the official publication of the Section on Pediatrics of the American Physical Therapy Association 01/2013; 25(2):158-66. -
Article: Ageing with cerebral palsy: psychosocial issues.
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ABSTRACT: although much has been written about biomedical concerns in adults ageing with cerebral palsy (CP), few studies or reviews have addressed psychosocial aspects. the purpose of this narrative review is to critically examine studies that have addressed needs for social support, as well as issues affecting morale, self-efficacy, health attitudes, employment and sense of coherence (SOC) in adults ageing with CP. a systematic and detailed search of the literature was conducted. searches of CINAHL (1982-present), ERIC, PubMed (1950-present), MEDLINE (Ovid) and Web of Science databases, as well as the American Academy of Cerebral Palsy and Developmental Medicine website, were conducted. Key search terms included 'cerebral palsy and ageing', 'adults with cerebral palsy', 'secondary conditions', 'functional loss', 'health' and 'psychosocial'. Nine studies were recovered that described psychosocial consequences of living with a lifespan disability. We used McMaster University's Guidelines for Critical Review Form--Quantitative and Qualitative Studies to evaluate the studies. psychosocial issues of concern to adults ageing with CP include the need for social support, self-acceptance and acceptance by others; the need for accommodations in the workplace and the environment; and SOC of adults ageing with CP. several studies concluded that adults with CP need greater knowledge and understanding to enhance decision-making processes about their health. The studies reviewed also provide knowledge for healthcare and social service providers who care for adults with CP to better understand how psychosocial health can be preserved during the ageing process.Age and Ageing 02/2010; 39(3):294-9. · 3.09 Impact Factor -
Article: Growing older with cerebral palsy: insiders' perspectives.
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ABSTRACT: Research has shown that adults with cerebral palsy (CP) lose functional abilities earlier than persons who are able-bodied. Because CP is a lifespan disability, developmental therapists should be aware of these changes. We used descriptive phenomenology to understand the unique, lived experiences of adults growing older with CP. Data were gathered through in-depth, semistructured interviews. Open-ended questions asked what it was like to age with CP, how these experiences were understood, how strategies were used to cope with changes, and what are the meanings of these experiences. A theme, Awareness, Acceptance, and Action, emerged from the data analysis. Participants were aware that their bodies were deteriorating quicker than those of peers who are able-bodied. They developed acceptance that hastened actions toward improving their quality of life. These findings provide insights for pediatric therapists who work with children with CP about what may be important to their clients as they grow older.Pediatric physical therapy: the official publication of the Section on Pediatrics of the American Physical Therapy Association 01/2010; 22(3):296-303. -
Article: Frequency of purchase and associated costs of assistive technology for Washington State Medicaid program enrollees with spina bifida by age.
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ABSTRACT: Assistive technology (AT) is one strategy to mitigate or eliminate barriers to independence for individuals with disabilities, including those with spina bifida (SB). However, little is known about current use and costs of AT for people with SB, including the cost burden to medical insurance payees. The aim of this study was to evaluate frequency of AT purchases and their associated costs for individuals with SB covered by the Washington State Medicaid program. Additionally, we sought to compare Medicaid reimbursement for AT to the overall Medicaid reimbursement for all medical care for these individuals. Data included all electronic claims and eligibility records of persons covered by the Medicaid program over a 4-year period (2001-2004) who had at least one service with a coded diagnosis of SB. Procedure codes were reviewed and grouped into the following AT categories: manual wheelchairs, powered wheelchairs, wheelchair cushions and seats, wheelchair accessories and repairs, wheelchair rental, ambulatory aids, orthotic and prosthetic devices, positioning aids, bathroom equipment, beds and bed accessories, and communication and hearing aids. Age group analyses were conducted after dividing patients into 3 age groups (0-15, 16-25, and 26+). Further subgroup analyses were done for individuals with dual or capitated medical coverage compared with those who had fee-for-service Medicaid-only coverage. A total of 984 individuals with at least one diagnosis of SB during the 4-year study period were identified. On average, approximately one third of individuals made claims for some type of AT per year; the majority of these AT claims (87%) were for mobility-related AT. Average annual Medicaid cost of AT was $494 per enrollee and AT accounted for 3.3% of all Medicaid costs for these individuals. AT-related costs were highest for those aged 0-15 years and lowest for those aged 16-25 years. Persons with only fee-for-service Medicaid coverage had more than twice the annualized Medicaid AT-related expenditures compared to those with additional coverage or who were covered under a Medicaid capitation plan. Medicaid reimbursement for AT, as classified in this study, is a relatively low percentage of overall medical costs for individuals with SB. Because of the small percentage of non-mobility-related AT paid for in this study, we believe there may be a substantial unmet need for AT in this population and/or that individuals with SB may have significant AT-related out-of-pocket expenses. Given its large potential impact and relatively low cost burden to Medicaid, AT is a "good buy" and coverage for AT should be expanded.Disability and Health Journal 07/2010; 3(3):155-61. · 0.98 Impact Factor
