Steering towards collaborative assessment: a qualitative study of parents’ experiences of evidence-based assessment practices for their child with cerebral palsy

O’Connor, Bridget; Kerr, Claire; Shields, Nora; Adair, Brooke; Imms, Christine

doi:10.1080/09638288.2019.1629652

Cited by 13 publications

(7 citation statements)

References 43 publications

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“…Qualitative studies are useful for understanding the beliefs, values, and motivations that underlie individual health behaviors [13]. Furthermore, qualitative studies have been used to research the experience of parents of children and youth with CP to identify a list of relevant intervention categories for AT [14], as well as issues regarding their experiences of evidence-based assessment practices [15] and the participation in community-based physical activity [16] or the barriers and facilitators for physical activity in special education [5].…”

Section: Methodsmentioning

confidence: 99%

Influence of Aquatic Therapy in Children and Youth with Cerebral Palsy: A Qualitative Case Study in a Special Education School

Muñoz-Blanco

Merino-Andrés

Aguilar-Soto

et al. 2020

IJERPH

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Cerebral palsy results in the progressive loss of motor functions, with a negative impact on daily activities and participation. Despite the well described benefits of aquatic therapy in children, little is known about the effects of the same in school settings. This study aimed to describe the experience of children and youth with cerebral palsy participating in an aquatic therapy program within a special education school considering their educational and therapeutic perspectives. A qualitative descriptive case study with embedded units was developed, comprising 27 participants. This study employed purposeful sampling to include children and youth with cerebral palsy from the Asociación Ayuda a la Paralisis Cerebral (APACE) special education school, together with their parents, the special education teachers, and health care professionals. Data were collected via non-participant observation, semi-structured and informal interviews, focus groups, and researcher field notes. A thematic analysis was conducted, revealing the following themes: (a) the connection with the environment; (b) postural improvements and mobility; (c) the opportunity to perform tasks; (d) learning and transfer. A motivating environment leads to physical, cognitive and social benefits, both at school and in the home. Aquatic therapy was viewed as a means for learning and participation. These findings may enhance understanding regarding the potential benefits of implementing multidisciplinary aquatic therapy programs in specialist school settings.

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Section: Methodsmentioning

confidence: 99%

Influence of Aquatic Therapy in Children and Youth with Cerebral Palsy: A Qualitative Case Study in a Special Education School

Muñoz-Blanco

Merino-Andrés

Aguilar-Soto

et al. 2020

IJERPH

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“…23 Similarly, for a different patient cohort, a study found that physiotherapists and parents had different views about the use of objective assessment tools for children with cerebral palsy. 24 Our results suggest that there are times when clinicians might not ask a family if they would like to participate in family-assisted therapy, when in fact this might be just what the family is looking for. This calls into question the role of health professionals as 'gatekeepers'.…”

Section: Discussionmentioning

confidence: 78%

“…For example, a study investigating physical activity barriers and enablers found people with dementia and their families often had more optimistic views compared to the critical views of physiotherapists 23 . Similarly, for a different patient cohort, a study found that physiotherapists and parents had different views about the use of objective assessment tools for children with cerebral palsy 24 . Our results suggest that there are times when clinicians might not ask a family if they would like to participate in family‐assisted therapy, when in fact this might be just what the family is looking for.…”

Section: Discussionmentioning

confidence: 99%

Let families decide: Barriers and enablers to participation in family‐assisted therapy for older people in transition care

2022

Self Cite

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ObjectiveTo understand the barriers and enablers to participation in family‐assisted therapy for older people in Transition Care.MethodsA qualitative study, underpinned by interpretive description, was conducted at two public health services in Melbourne, Australia. Participants included patients in Transition Care, or their family members, who either participated in or chose not to participate in a family‐assisted therapy trial. Semi‐structured interviews were conducted, transcribed verbatim and analysed thematically.ResultsForty‐four participants were interviewed (17 patients and 27 family members). The unifying theme was to let families decide about participation in family‐assisted therapy. The unifying theme was illustrated by three subthemes. The first, what is possible for the family now, described practical considerations including geography, paid and unpaid work structure and commitments and the presence of fit and willing social networks. The second, what is important to the family now, recognised the role of family priorities in deciding. Physical rehabilitation and extra therapy were of high importance to some families. For others, emotional support or searching for a residential aged care bed were more important at the time. Finally, how the family functions described the complexity of relationships and family history that impacted the decision to participate.ConclusionsThe decision to participate in family‐assisted therapy is complex and is best made by patients and their families. Clinicians offering family‐assisted therapy are encouraged to avoid assuming what will or will not work for families and instead, to let families decide.

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“…In most families, parents provide the primary care giving to children suffering from this disease. 12 Children with CP depend on their parents for care. As guardians and primary caregivers of children with CP, parents deal with a variety of stressors during their children’s long treatment process, resulting in problems such as mental stress, bad mood, and decline in quality of life.…”

Section: Introductionmentioning

confidence: 99%

Family Caregivers’ Experiences of Caring for Children With Cerebral Palsy in China: A Qualitative Descriptive Study

Ding

et al. 2022

INQUIRY

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This study aimed to investigate family caregivers’ experiences of caring for children with cerebral palsy in China. This study used a descriptive qualitative design. We selected 18 family caregivers from 3 children’s hospitals in Jiangsu Province, China, using a purposive sampling method. The following 5 themes emerged as needs of family caregivers’ experiences of caring for children with cerebral palsy: overall responsibility, being alone, exhaustion from caring, being a prisoner of life, and uncertainty regarding the future. The findings of our research contribute to a better understanding of the life situation of family caregivers of children with cerebral palsy as we identify the difficulties they experience as well as their specific needs.

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Steering towards collaborative assessment: a qualitative study of parents’ experiences of evidence-based assessment practices for their child with cerebral palsy

Abstract: Steering towards collaborative assessment: a qualitative study of parents' experiences of evidence-based assessment practices for their child with cerebral palsy. Disability and Rehabilitation.

Cited by 13 publications

References 43 publications

Influence of Aquatic Therapy in Children and Youth with Cerebral Palsy: A Qualitative Case Study in a Special Education School

Influence of Aquatic Therapy in Children and Youth with Cerebral Palsy: A Qualitative Case Study in a Special Education School

Let families decide: Barriers and enablers to participation in family‐assisted therapy for older people in transition care

Family Caregivers’ Experiences of Caring for Children With Cerebral Palsy in China: A Qualitative Descriptive Study

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