Health service experiences to address mobility decline in ambulant adults ageing with cerebral palsy

Morgan, Prue; Pogrebnoy, Dina; McDonald, Rachael

doi:10.3109/13668250.2014.927841

Cited by 13 publications

(44 citation statements)

References 21 publications

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“…The interview also explored participants' experiences of health service access and utilisation. This latter data has been reported elsewhere [ 30 ]. A pilot interview was conducted to refine language and trial the interview guide, with these data (Participant 1) included in the final analysis.…”

Section: Methodssupporting

confidence: 89%

Perceived Cause, Environmental Factors, and Consequences of Falls in Adults with Cerebral Palsy: A Preliminary Mixed Methods Study

Morgan

McDonald

McGinley

2015

Rehabilitation Research and Practice

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Objective. Describe perceived cause, environmental influences, and consequences of falls or near-falls in ambulant adults with cerebral palsy (CP). Methods. Adults with CP completed postal surveys and follow-up semistructured interviews. Surveys sought information on demographic data, self-nominated Gross Motor Function Classification Score (GMFCS-E&R), falls, and near-falls. Interviews gathered additional information on falls experiences, near-falls, and physical and psychosocial consequences. Results. Thirty-four adults with CP participated. Thirty-three participants reported at least one fall in the previous year. Twenty-six participants reported near-falls. Most commonly, falls occurred indoors, at home, and whilst engaged in nonhazardous ambulation. Adults with CP experienced adverse falls consequences, lower limb injuries predominant (37%), and descriptions of fear, embarrassment, powerlessness, and isolation. Discussion. Adults with CP may experience injurious falls. Further investigation into the impact of falls on health-related quality of life and effective remediation strategies is warranted to provide comprehensive falls prevention programs for this population.

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Section: Methodssupporting

confidence: 89%

Perceived Cause, Environmental Factors, and Consequences of Falls in Adults with Cerebral Palsy: A Preliminary Mixed Methods Study

Morgan

McDonald

McGinley

2015

Rehabilitation Research and Practice

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“…In contrast to other related health literature, 31 32 participants in this study only infrequently referred to the impairments or symptoms of ageing in relation to the quality of interactions with health professionals. While getting help to relieve pain, treat illness or improve mobility may have been the impetus for the health transaction, what made interactions ‘work’ was less the intervention than how it was carried out.…”

Section: Discussionmentioning

confidence: 83%

Ageing with cerebral palsy; what are the health experiences of adults with cerebral palsy? A qualitative study

et al. 2016

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ObjectiveTo enhance understanding of the experiences of ageing with cerebral palsy (CP) in adulthood with a particular focus on experiences with health services.DesignA qualitative descriptive methodology was applied to capture adults' views of ageing with CP and related interactions with health services. Semistructured interviews were undertaken with data systematically coded and interpreted by grouping information into categories. Themes that encompassed the categories were identified through thematic analysis.SettingAll healthcare settings.Participants28 adults (14 women) with CP, aged 37–70 years.Results5 themes covered the breadth of participants' experiences: (1) acceptance of change; (2) exploring identity: cerebral palsy as only one part of self; (3) taking charge of help; (4) rethinking the future and (5) interacting with health professionals. Being seen and being heard were the features described in positive healthcare interactions. Participants also valued health professionals who reflected on who holds the knowledge?; demonstrated a willingness to learn and respected participants' knowledge and experience.ConclusionsOur findings could, and arguably should, inform more responsive strategies for disabled people in health services and, indeed, all health consumers. Our study supports other findings that impairments related to CP change and, for many, severity of disabling impact increases with age. Increased interactions with health and rehabilitation professionals, as a consequence of these changes, have the potential to impact the person's healthcare experience either positively or negatively. A ‘listening health professional’ may bridge their knowledge gap and, in recognising the person's own expertise, may achieve three things: a more contextualised healthcare intervention; a better healthcare experience for the person with CP and positive impact on the person's sense of autonomy and identity by recognising their expertise. Future research should identify whether this approach improves the healthcare experience for adults living with CP.

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“…11,77 In both the USA and Canada, environmental barriers within the health services contributed to inaccessibility. 11,31,68,69,77,79 This was often related to lack of appropriate equipment such as height-adjustable examination tables or diagnostic equipment, wheelchair-accessible weighing scales, and manual handling equipment for transfers. 11,31,68,69 In addition, several studies highlighted that hospital, physician, diagnostic, and gym services lacked accessible examination rooms, disabled access toilets, wheelchair-accessible entrances, accessible car parking locations, or had only stair access that further limited accessibility.…”

Section: Needs Associated With Ageing In Adults With Cpmentioning

confidence: 99%

Health service use among adults with cerebral palsy: a mixed‐methods systematic review

Manikandan

Kerr²,

Lavelle

et al. 2021

Develop Med Child Neuro

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Aim To determine the proportion of adults with cerebral palsy (CP) using health services and frequency of use, and to explore experiences and perceptions of health services for this population. Method A mixed‐methods systematic review was conducted using the Joanna Briggs Institute methodology. Five databases were searched to September 2020. Observational and qualitative studies were included. Two reviewers screened titles, abstracts, and full texts; extracted data; and assessed the quality of included studies. Separate meta‐analyses were used to pool the proportion of adults using each service and frequency of use. A meta‐aggregation approach was used to synthesize qualitative data. Quantitative and qualitative findings were integrated using the Andersen and Newman Model of health care utilization. Results Fifty‐seven studies (31 quantitative, 26 qualitative) of 14 300 adults with CP were included. The proportion of adults using services ranged from 7% (95% confidence interval [CI]: 2–13%) for urologists to 84% (95% CI: 78–90%) for general practitioners. Incidence of visits ranged from 67 (95% CI: 37–123) hospital admissions to 404 (95% CI: 175–934) general practitioner visits per 100 person‐years. Qualitative themes highlighted issues regarding accessibility, caregivers’ involvement, health workers’ expertise, unmet ageing needs, transition, and health system challenges. Interpretation Adults with CP used a wide range of health services but faced context‐specific challenges in accessing required care. Appropriate service delivery models for adults with CP are required. This review emphasizes a need to develop an appropriate service model for adults with CP to meet their needs.

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Health service experiences to address mobility decline in ambulant adults ageing with cerebral palsy

Cited by 13 publications

References 21 publications

Perceived Cause, Environmental Factors, and Consequences of Falls in Adults with Cerebral Palsy: A Preliminary Mixed Methods Study

Perceived Cause, Environmental Factors, and Consequences of Falls in Adults with Cerebral Palsy: A Preliminary Mixed Methods Study

Ageing with cerebral palsy; what are the health experiences of adults with cerebral palsy? A qualitative study

Health service use among adults with cerebral palsy: a mixed‐methods systematic review

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