Lynne Ray

Are family-centred principles, functional goal setting and transition planning evident in therapy services for children with cerebral palsy?

BACKGROUND Family-centred service, functional goal setting and co-ordination of a childs move between programmes are important concepts of rehabilitation services for children with cerebral palsy identified in the literature. We examined whether these three concepts could be objectively identified in programmes providing services to children with cerebral palsy in Alberta, Canada. METHODS Programme managers (n= 37) and occupational and physical therapists (n= 54) representing 59 programmes participated in individual 1-h semi-structured interviews. Thirty-nine parents participated in eleven focus groups or two individual interviews. Evidence of family-centred values in mission statements and advisory boards was evaluated. Therapists were asked to identify three concepts of family-centred service and to complete the Measures of Process of Care for Service Providers. Therapists also identified therapy goals for children based on clinical case scenarios. The goals were coded using the components of the International Classification of Functioning Disability and Health. Programme managers and therapists discussed the processes in their programmes for goal setting and for preparing children and their families for their transition to other programmes. Parents reflected on their experiences with their childs rehabilitation related to family-centredness, goal setting and co-ordination between programmes. RESULTS All respondents expressed commitment to the three concepts, but objective indicators of family-centred processes were lacking in many programmes. In most programmes, the processes to implement the three concepts were informal rather than standardized. Both families and therapists reported limited access to general information regarding community supports. CONCLUSION Lack of formal processes for delivery of family-centred service, goal-setting and co-ordination between childrens programmes may result in inequitable opportunities for families to participate in their childrens rehabilitation despite attending the same programme. Standardized programme processes and policies may provide a starting point to ensure that all families have equitable opportunities to participate in their childs rehabilitation programme.

Brief Report: An Online Support Intervention--Perceptions of Adolescents with Physical Disabilities.

Adolescents with cerebral palsy and spina bifida report restricted interactions with peers and gaps in social support. A pilot online support intervention offered interactions with peers. Five mentors with cerebral palsy or spina bifida and 22 adolescents with the same disabilities met weekly online for 25 group sessions over six months. Participants completed quantitative measures of loneliness, sense of community, self-perceptions, coping, and social support prior to intervention, post-intervention, and delayed post-intervention. Semi-structured qualitative interviews elicited perceptions of the interventions impacts. Participants reported more contact with teens with disabilities, decreased loneliness, and increased social acceptance and confidence. A significant increase in sense of community was reported from post-intervention to delayed post-intervention. Encouraging qualitative findings were supported by trends in the quantitative measures. This pilot study can guide a future community-based intervention trial.

The Social and Political Conditions that Shape Special-Needs Parenting:

This article presents the findings of a secondary analysis of data from 30 interviews with parents who are raising children with chronic health conditions. Using Giddens’s structuration theory, the social and institutional conditions that shape special-needs parenting are examined. The conditions include professional attitudes, categorical allocation of services, lack of information, poor service coordination, school access challenges, societal perceptions of disability, responsibility debates, the feminization of family care giving, public reliance of family care, and the status of everyday parenting. Illustrations of how these issues affect families’everyday lives are provided along with a discussion of the implications for child-and family-friendly services and public policy and for social action.

Information Sharing during Diagnostic Assessments: What Is Relevant for Parents?.

ABSTRACT This descriptive qualitative study facilitates the application of family-centered care within a tertiary care interdisciplinary neurodevelopmental diagnostic assessment clinic by furthering an understanding of parent perceptions of the relevance of diagnostic information provision. An interdisciplinary assessment team completed an open-ended questionnaire to describe parent information provision. Parents from 9 families completed in-depth parent interviews following clinic attendance to discuss perceptions of information received. Interviews were audiotaped, transcribed, and coded by related themes. Parents did not perceive the information in the way professionals expected. Parents acknowledged receipt of comprehensive information relevant to the diagnosis but indicated that not all their needs were met. During the interviews, parents described the assessment process, preassessment information, and “steps in their journey.” They noted that a strength-based approach and a focus on parental competency would support their coping efforts. Results underscore the need for professionals to be attentive to parents’ individualized needs.

Cross-ministerial collaboration related to paediatric rehabilitation for children with disabilities and their families in one Canadian province.

The delivery of paediatric rehabilitation services is complex due to the involvement of different service sectors and diverse models of care. Parents of children with disabilities find it challenging to navigate successfully through complicated service delivery systems. Cross-sectoral collaboration to improve continuity of care for children with disabilities and their families is viewed as ideal in public policies. The purpose of this research was to explore how ministerial cultures, processes and structures influence inter-ministerial collaboration for the purpose of enhancing continuity of care for children with disabilities and their families in a Western Canadian province. Six key informants from three government Ministries that funded paediatric rehabilitation services participated in individual, semi-structured interviews between January and May of 2007. Nineteen provincial public policy documents were reviewed. Halls framework guided the analysis of the key informant interviews and policy documents. Influences of organisational culture, processes and structures on cross-ministerial collaboration were classified into the categories of ideas-values and beliefs that underlie policy development, interests-influence of various policy actors and institutions-structures and processes used to deliver public policy. Fundamental ideological and structural differences were apparent across the three ministries that affected the ease of inter-ministerial collaboration towards ensuring continuity of care for children with disabilities. Variations in ideas (philosophy and values) and institutions (geography and service delivery structure, relationships with regional governance, mission and function, choice of policy instruments and financial processes) are presented and implications for service delivery are explored.