Intended for healthcare professionals

Editorials

Childhood disability and social policies

BMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b1020 (Published 24 April 2009) Cite this as: BMJ 2009;338:b1020
  1. Peter Rosenbaum, professor of paediatrics, McMaster University,
  1. 1IAHS Building, Hamilton, ON, L8S 1C7, Canada
  1. rosenbau{at}mcmaster.ca

    Developmental rehabilitation needs to extend beyond the biomedical dimensions of disease

    Participation (people’s engagement in life) is an essential component of the World Health Organization’s International Classification of Functioning, Disability and Health.1 The classification connects body structure and function (including the impairments caused by any disease) with their effects on activity and participation, and it puts them in the context of personal and environmental factors. This biopsychosocial framework reflects a social model of disability in which a person may be disabled by external factors, including environmental and social forces beyond their control.

    Children and young people with disabilities constitute about 4-6.5% of the population in many countries.2 3 4 They are disadvantaged in terms of their participation and engagement in life,5 and the limitations in their activity may be two to three times greater than for typically developing children.2 In the linked study (doi:10.1136/bmj.b1458), Fauconnier and colleagues assess variations in the nature and rates of participation of 8-12 year old children with cerebral palsy in several European countries.6 They found that pain, impaired mobility and limitations in cognitive or communicative function were associated with lower participation. Children’s participation varied significantly across countries, even when analyses controlled for their impairments. The study was part of a wider project from the SPARCLE research group.7 8

    The study raises several important points that require further exploration, such as how we work with disability in children compared with adults who have acquired disabilities. This relates to the fundamental differences between the life circumstances of children and adults. In adults the focus is on rehabilitation to improve the person’s functional status towards its preimpairment level. In children we are not trying to return to some pre-existing state, because that has yet to be defined. Rather, we should support the development of young people who are in the process of “becoming.” Thus, our efforts in childhood disability should be to promote the acquisition and enhancement of life skills in all dimensions, to enable young disabled people to participate in both the instrumental and discretionary opportunities of their lives, as the current study has explored.

    Two findings of this study are particularly compelling. The first is the observation that children’s participation varied substantially across nine European regions. This finding was predicted by the authors, who cited the social model of disability. This emphasises how much the environment contributes to people’s possibilities in life engagement. However, this discovery also points to the powerful role that social, legislative, and other external influences can have on the day to day lives of people with disabilities and their families. For example, some policies in Denmark, such as financial help to poor families and transportation services for children to access recreational programmes, which are also important for children who are not disabled, seem to facilitate integration of children and young people with disabilities. This finding suggests that forward thinking community planners and policy makers can develop programmes that benefit everyone and particularly improve the lives of less advantaged citizens. The study presents a challenge to health professionals to recognise opportunities to improve the wellbeing of young disabled people through advocacy in the sociopolitical arena.

    The second compelling finding is that after controlling for the severity of the children’s impairments, which have a great effect on levels of participation, pain is strongly associated with lower levels of participation in children with cerebral palsy. Although this observation is not surprising, it shows how important it is to assess children’s pain status and manage it effectively, and to be aware of how pain control can potentially improve participation.

    Like other work by the SPARCLE researchers, this study reflects modern thinking about health and function, especially as these problems concern disabled children and their families. If we can broaden our clinical thinking beyond the biomedical dimensions of diseases to include participation, as described by the International Classification of Functioning, Disability and Health, we may help improve the quality of life and long term wellbeing of disabled children and young people along with their families. The challenge is to explore and validate this optimistic notion with high quality prospective longitudinal studies that include participation as an outcome.

    Notes

    Cite this as: BMJ 2009;338:b1020

    Footnotes

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