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Equity among children and youth with cerebral palsy: physical leisure activity, physical education, physiotherapy and quality of life
Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS). Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Section of Physiotherapy.
2023 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Jämlikhet bland barn och unga med cerebral pares : fysisk fritidsaktivitet, skolidrott, fysioterapi och livskvalitet (Swedish)
Abstract [en]

Background & aim: Cerebral palsy (CP) is the most common reason for movement difficulties among children and youth in Sweden. Physiotherapy is usually introduced early in order to develop mobility and prevent further impairment, which in turn facilitates activity and participation. Physiotherapy is closely connected with physical activity, both as a goal and a mean, and physical activity contributes to aspects of health, in turn associated with quality of life (QoL). Physical education in school as well as physical leisure activity are important parts of the total physical activity participation among children and youth. Participation in physical leisure activity and physical education, as well as access to physiotherapeutic interventions, is insufficiently explored from an equity perspective regarding function, gender and ethnicity or birth country. The overall aim of the current thesis is to explore participation in physiotherapeutic interventions, physical leisure activity and physical education, as well as analyze the association between physical activity and quality of life, from an equity perspective for children and adolescents with CP in Sweden.

Methods: The four papers that comprise this thesis are based upon three empirical studies: a National cross-sectional registry study (Papers I and II), based on the National Quality Registry Cerebral Palsy Follow-up Program (CPUP); an interview study with a qualitative approach (Paper III); and a national QoL survey complemented with registry data (IV). Quantitative data were analyzed with multivariable logistic-, linear- or quantile regressions. For the interview study, qualitative content analysis was used.

Results: The number of participants in the registry studies were 2855 aged 0-18 years (Paper I) and 1935 aged 6-18 years (Paper II). The interview study (Paper III) included 11 participants aged 15-18 years, and the survey study (Paper IV) 149 participants, aged 15-18 years. Being born in Sweden entailed higher odds for participating in physiotherapy, physical leisure activity, physical education and physiotherapy, respectively, compared to those born outside Sweden (Paper I) or outside Europe (Paper II). More severe gross motor function difficulties were positively associated with higher odds of receiving physiotherapy, and negatively associated with physical activity participation (Paper II). Participants in the interviews report several examples of exclusion, struggles and (in-) sufficient support and inclusion through the categories ‘Exclusion and lack of support’, ‘Resistance, struggle and guilt’, and ‘Empowerment and support’. Gender as a vector in physical activity is mainly seen through the qualitative results, referring to physical education (Paper III). Frequent participation in physical leisure activity was associated with the domain Communication and physical health. Domains of QoL that referred to participation or function were negatively associated with having greater motor function difficulties, although not significantly associated with domains of social- and school wellbeing. Pain and bother is negatively associated with all five domains of QoL. Low educational level among the caregivers was associated with higher QoL-scores in the domain of social well-being (Paper IV).

Discussion & Conclusions: The results that reveals differences regarding birth country indicates the relevance to raise awareness about possible inequity in participation in physical leisure activity, physical education, and physiotherapy for children and youth who have CP, as a prerequisite for improvement. Physiotherapists, school, and leisure sport leaders, as well as their organizations, need to be attentive to norms and bias in order to prevent inequity and discrimination due to for example birth country, gender or function, and provide support, which is included in the compensatory assignment of the schools and health care. This is emphasized by the experiences of exclusion expressed by participating youth with CP. Frequent physical activity participation is in part associated with higher QoL while Pain and bother is negatively associated with QoL, as is partly gross motor function difficulties. Prevention and treatment of pain and facilitation of physical activity is therefore important for children and youth with CP. Future studies should carefully consider targeting youth with a non-Nordic birth country and with large gross motor function difficulties or associated difficulties to widen knowledge about equity in physical activity- and physiotherapy participation, and QoL.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2023. , p. 75
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2245
Keywords [en]
Birth country, Cerebral palsy, equity, disability, gender, physical activity, physiotherapy, quality of life
National Category
Physiotherapy
Research subject
physiotherapy
Identifiers
URN: urn:nbn:se:umu:diva-208145ISBN: 978-91-8070-075-7 (print)ISBN: 978-91-8070-076-4 (electronic)OAI: oai:DiVA.org:umu-208145DiVA, id: diva2:1756188
Public defence
2023-06-09, Hörsal UB.A.220 - Lindellhallen 2, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Funder
Stiftelsen Sunnerdahls HandikappfondNorrbacka-Eugenia FoundationStiftelsen drottning Silvias jubileumsfondLinnéa och Josef Carlssons stiftelseAvailable from: 2023-05-17 Created: 2023-05-10 Last updated: 2023-05-12Bibliographically approved
List of papers
1. Inequity in physiotherapeutic interventions for children with Cerebral Palsy in Sweden: a national registry study
Open this publication in new window or tab >>Inequity in physiotherapeutic interventions for children with Cerebral Palsy in Sweden: a national registry study
2020 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 109, no 4, p. 774-782Article in journal (Refereed) Published
Abstract [en]

Aim: The aim of this study was to investigate the distribution of physiotherapeutic interventions for children with Cerebral Palsy in Sweden from an equity perspective, considering sex, country of birth and geographical region.

Method: This national cross‐sectional registry study includes children with Cerebral Palsy aged 0‐18 years who participated in 2015 in the Swedish national quality registry, the Cerebral Palsy follow‐up programme, CPUP. Comparisons and associations between physiotherapeutic interventions and sex, country of birth and geographical regions were conducted using chi‐square and logistic regression analysis, controlling for cognitive level, level of motor function, age group and dominating symptom.

Results: Of the 2855 participants, 2201 (79%) had received physiotherapy. Children born in Sweden had 1.60 times higher odds (95% CI 1.10‐2.33) of receiving physiotherapy compared with children born in foreign countries. Distribution of physiotherapeutic interventions differed significantly between geographical regions. No associations between sex and physiotherapeutic interventions were observed.

Conclusion: The results of this study indicate inequity in care in Sweden towards children with Cerebral Palsy born in other counties. Further, physiotherapeutic interventions were not equally distributed in different geographical regions of Sweden. Knowledge of inequity is crucial in order to address the problem.

Place, publisher, year, edition, pages
John Wiley & Sons, 2020
Keywords
adolescents, cerebral palsy, CPUP, inequity, physiotherapy
National Category
Physiotherapy Gender Studies Pediatrics
Identifiers
urn:nbn:se:umu:diva-163637 (URN)10.1111/apa.14980 (DOI)000488167100001 ()31435959 (PubMedID)2-s2.0-85073965380 (Scopus ID)
Available from: 2019-10-01 Created: 2019-10-01 Last updated: 2023-05-10Bibliographically approved
2. Unequal physical activity among children with cerebral palsy in Sweden: A national registry study
Open this publication in new window or tab >>Unequal physical activity among children with cerebral palsy in Sweden: A national registry study
2021 (English)In: Health Science Reports, E-ISSN 2398-8835, Vol. 4, no 3, article id e342Article in journal (Refereed) Published
Abstract [en]

Aim: To examine the extent to which sex, country of birth, and functional aspects influence participation in physical education and physical leisure activity among children with cerebral palsy (CP) in Sweden.

Methods: This national cross-sectional registry study included children with CP aged 6 to 18 years who participated in the Swedish national quality registry, the Cerebral Palsy Follow-up Program, CPUP, in 2015. Comparisons and associations between sex, country of birth, and functional aspects and physical leisure/physical education were examined using chi-squared and multivariable logistic regression analysis.

Results: The study included 1935 children. Of them, 1625 (87%) reported participating in physical education and 989 (53%) reported participating in physical leisure activity. Children born in Sweden had higher odds of participating in physical education (OR: 1.99; 95% CI: 1.20-3.28) and physical leisure activity (OR: 2.51; 95% CI: 1.70-3.72) compared with children born outside Europe. Greater impairment of gross motor function was associated with lower participation levels. Boys participated slightly more frequently in leisure activities than girls.

Conclusion: Enhancing social inclusion with regard to disability, birth country, and sex are important and achievable goals for policymakers and practitioners for promoting participation in physical activity for children and adolescents with CP.

Place, publisher, year, edition, pages
John Wiley & Sons, 2021
Keywords
inequality, leisure, norms, physical education, youth
National Category
Gender Studies Physiotherapy
Research subject
physiotherapy
Identifiers
urn:nbn:se:umu:diva-186647 (URN)10.1002/hsr2.342 (DOI)000700814100054 ()34401523 (PubMedID)2-s2.0-85115821642 (Scopus ID)
Available from: 2021-08-16 Created: 2021-08-16 Last updated: 2023-09-05Bibliographically approved
3. From exclusion to empowerment – An interview study of experiences of physical leisure activity and physical education among youth with cerebral palsy in Sweden
Open this publication in new window or tab >>From exclusion to empowerment – An interview study of experiences of physical leisure activity and physical education among youth with cerebral palsy in Sweden
(English)Manuscript (preprint) (Other academic)
National Category
Physiotherapy
Identifiers
urn:nbn:se:umu:diva-208142 (URN)
Available from: 2023-05-10 Created: 2023-05-10 Last updated: 2023-05-10
4. Physical activity, sociodemographic factors, and pain in quality of life for youth who have Cerebral palsy
Open this publication in new window or tab >>Physical activity, sociodemographic factors, and pain in quality of life for youth who have Cerebral palsy
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Physiotherapy
Identifiers
urn:nbn:se:umu:diva-208144 (URN)
Available from: 2023-05-10 Created: 2023-05-10 Last updated: 2023-05-10

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