Growing up with cerebral palsy: perceptions of the influence of family

Freeborn, Donna; Knafl, Kathleen A.

doi:10.1111/cch.12113

Cited by 11 publications

(9 citation statements)

References 33 publications

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“…Meanwhile, there is a tendency toward family-centered services, in which the family work together with service providers to make informed decisions about the services and support the child and family receive (Law et al., 2003). This could potentially provide an increasing basis for the co-participation of the family and the therapist and, to a large extent, reduce challenges related to child care at home (Freeborn and Knafl, 2013; Law et al., 2005).…”

Section: Discussionmentioning

confidence: 99%

Co-occupations: The caregiving challenges of mothers of children with cerebral palsy

Dalvand

Hosseini

Rassafiani

et al. 2015

British Journal of Occupational Therapy

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Introduction: This study was conducted in an Iranian context to explore the co-occupations of mothers of children with cerebral palsy as experienced by them. Method: This qualitative study was conducted using content analysis methodology. Sixteen mothers of children with cerebral palsy participated in the study. Data was collected via in-depth, semi-structured interviews. Constant comparative analysis was deployed for data analysis. Results: The results were classified into nine sub-categories and four main categories that were identified as (1) coping with self-care problems, (2) effort to gain treatment follow-up, (3) coping challenges of educational care, and (4) limited parental personal leisure time. Conclusion: Understanding the challenges of caring for a child with cerebral palsy and the experiences of mothers when engaging in co-occupations with their child, provides a broader perspective of the potential impact on participation and engagement of mothers. However, more research is required to understand the various factors influencing participation and co-occupations and interaction effects between these factors.

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Section: Discussionmentioning

confidence: 99%

Co-occupations: The caregiving challenges of mothers of children with cerebral palsy

Dalvand

Hosseini

Rassafiani

et al. 2015

British Journal of Occupational Therapy

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“…In our study, parents with other children reported higher scores in the Autonomy domain of their child with CP. In a qualitative study with female adults with CP that examined families and individual family member's contribution to overall QoL, one emergent theme was the importance of siblings as friends, mentors, instructors, and supporters in interaction during their time together in everyday life situations, including play ( 38 ). This interaction between siblings seems to reflect positively on parents' perceptions of their child autonomy, due to the opportunities to interaction and choices making with others.…”

Section: Discussionmentioning

confidence: 99%

“…A large family can also minimize the burden on parents regarding the care of their child with disabilities in everyday life activities ( 39 ). Healthy relationships with siblings in childhood can extend into adult life, positively influencing the QoL of a person with CP ( 38 ). Engagement of siblings in rehabilitation follow-up may allow us to hear their perceptions about family everyday life situations; questions about the diagnosis, intervention, follow-up; and as other informant about the QoL of the sibling with CP ( 13 , 39 ).…”

Section: Discussionmentioning

confidence: 99%

Parent-report health-related quality of life in school-aged children with cerebral palsy: A cross-sectional study

Vila-Nova

Santos

Oliveira

et al. 2022

Front. Rehabilit. Sci.

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Quality of life is both a goal and an outcome in Cerebral Palsy (CP) rehabilitation. Children with CP may show impaired health-related quality of life (HRQoL) compared to their typical peers. Parents' perceptions of HRQoL of their children could help rehabilitation professionals to identify areas for intervention aiming to improve health and wellbeing. This study aims to compare the proxy HRQoL of Portuguese school-aged children with CP and the general population, and to analyze child and family correlation. Differences were examined using European normative data for children from 8 to 18 years. Correlation and regression analysis examined the association between child and family variables in the CP group with statistically significant low scores. Sixty-eight parents of children and adolescents with CP (12.5 ± 2.91 years) answered the KIDSCREEN-52 parent version. We identified clinically significantly lower HRQoL in four out of ten HRQoL domains (Physical well-being, Autonomy, Moods & Emotions, and Bullying) than the norm peers. Correlations were found between the number of siblings and Autonomy (r = .315), meaning that having more siblings was associated with greater autonomy, and between mobility and Moods & Emotions (r = −.261), where children with impaired mobility shown low scores as perceived by their parents. Age, sex, mobility and cognitive impairment explained 32% of Physical well-being scores (p < .001). Mobility and cognitive impairment explained 16% of Bullying scores (p = .001). Although the family and child variables identified in this study are non-modifiable, they can help in the identification and early intervention aimed at improving HRQoL. Rehabilitation professionals should assess parent perceptions, extending the HRQoL assessment to children who can report and other informants, aiming at fostering wellbeing in children and adolescents with CP.

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“…Selain itu, juga terdapat beberapa penelitian yang membahas tentang universal design, diantaranya penelitian Wahono dkk dalam [14], Wardani dalam [15], Anous dalam [2], Prellwitz dan Skär dalam [11] mengenai penerapan universal design pada produk, arsitektur sebuah bangunan maupun lingkungan. Beberapa penelitian yang membahas cerebral palsy diantaranya adalah penelitian Parkinson dkk dalam [9] mengenai rasa sakit yang diderita anak dengan cerebral palsy, penelitian Redford dalam [12] mengenai analisis kualitatif pengalaman anak-anak hidup dengan kondisi cerebral palsy dan penelitian dan Knalf dalam [5] mengenai pengaruh keluarga terhadap tumbuh kembang anak dengan cerebral palsy.…”

Section: Pendahuluanunclassified

Perancangan Ulang Pediatric Walker untuk Anak-anak dengan Spastic Diplegic Cerebral palsy Menggunakan Metode Universal design

Mustikasari

Herdiman

Susmartini

2019

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Kemampuan berjalan seorang anak dapat dilihat melalui bagaimana masa tumbuh kembangya sejak dini, kemampuan berjalan ini dapat dinilai dari gait performance dan fisiologinya. Pada saat tumbuh kembang anak berlangsung dapat terjadi gangguan-gangguan baik sensorik maupun motorik yang dapat menurunkan kemampuan berjalannya. Cerebral palsy (CP) adalah salah satu gangguan tumbuh kembang motorik yang dapat seorang anak. Salah satu cara yang dapat dilakukan untuk meningkatkan kemampuan berjalan yaitu dengan rehabilitasi menggunakan alat bantu jalan walker, berdasarkan pediatric penggunaanya terdapat dua jenis walker yaitu anterior dan posterior walker. Tujuan utama dari penelitian ini adalah merancang pediatric walker yang dapat bekerja secara optimal pada anak dengan spastic diplegic cerebral palsy, perancangan pediatric walker ini menggunakan prinsip universal design. Pada penelitian ini akan dilakukan percobaan terhadap anak dengan spastic diplegic cerebral palsy ketika menggunakan pediatric walker dan walker selanjutnya akan dibandingkan hasil dari gait performance dan fisiologinya. Dalam pengujian ini diketahui bahwa penggunaan pediatric walker lebih optimal, menghasilkan nilai gait performance yang lebih tinggi dan konsumsi energi lebih rendah dibandingkan menggunakan walker sebelumnya.

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Growing up with cerebral palsy: perceptions of the influence of family

Cited by 11 publications

References 33 publications

Co-occupations: The caregiving challenges of mothers of children with cerebral palsy

Co-occupations: The caregiving challenges of mothers of children with cerebral palsy

Parent-report health-related quality of life in school-aged children with cerebral palsy: A cross-sectional study

Perancangan Ulang Pediatric Walker untuk Anak-anak dengan Spastic Diplegic Cerebral palsy Menggunakan Metode Universal design

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