RESUMEN
The greater risk of poor mental health and social isolation, experienced by parents of children with developmental disabilities, is compounded by family circumstances and living in rural settings. Often parents receive little personal support. Family-centred interventions have been recommended internationally for promoting children's development, as well as boosting parental wellbeing. Yet, in many countries, current service provision is predominately child-focused and clinic-centred. An innovative, family-centred support service was designed and evaluated in a rural county of Ireland. Support staff visit the family home every month for around one year with regular check-ins by phone. The service aims included setting developmental goals for the child that were agreed with parents, alongside actions to address the personal needs of parents and siblings. In addition, community activities are identified or created to promote the social inclusion of the child and family in local communities, as well as locating opportunities for social activities for mothers. To date, 96 families with 110 children have been involved and three monthly reviews have been undertaken of each child's progress. Baseline measures on parents' mental health and social isolation were gathered and repeated when parents had completed their involvement with the project, along with qualitative information regarding the parents' experiences. Most children attained their learning targets, alongside those selected as personal goals by parents; in particular, parents reported their child's greater involvement in community activities, increased knowledge and skills, and with more confidence and resilience. Significant increases in parental well-being scores were reported, but there was a limited impact on their social participation and that of their child. This evidence-based model of provision is an example of how current social care provision for families who have a child with developmental disabilities could be cost-effectively re-envisioned even in rural areas.
RESUMEN
Family-centred interventions have long been advocated in paediatric practice and in public health, but their implementation is rarer with children experiencing developmental disabilities. Moreover, the uptake is lower in families from more socially deprived backgrounds. Yet there is robust evidence that such interventions bring benefits to the family caregivers as well as to the affected children. The present study emerged from a support service that had been located in a rural county in Ireland in which nearly 100 families of children with intellectual and developmental disabilities had participated. Using a qualitative research methodology, interviews were conducted with 16 parents who had taken part in the service with the aim of gaining insights into the ways a family-centred service had been of value to them. The themes identified in their responses were validated in two ways. All parents were given the opportunity to provide their perceptions using a self-completion questionnaire, and nearly 50% responded. In addition, seven health and social care staff who had referred families to the project were asked their views through personal interviews. The core theme to emerge was the focus placed on family engagement by the service, with four subthemes emerging: parental confidence boosted; children developed; community connections were made; and supportive staff. These insights should help existing health and social care services to become more family-centred and inform the development of new support services in response to the high levels of unmet needs among marginalized families in even the most affluent countries.
Asunto(s)
Servicios de Salud del Niño , Discapacidades del Desarrollo , Humanos , Niño , Servicio Social , Apoyo Social , Encuestas y CuestionariosRESUMEN
OBJECTIVES: To determine whether a 12-month program of group exercise can improve physical functioning and reduce the rate of falling in frail older people. DESIGN: Cluster randomized, controlled trial of 12 months duration. SETTING: Retirement villages in Sydney and Wollongong, Australia. PARTICIPANTS: Five hundred fifty-one people aged 62 to 95 (mean+/-standard deviation=79.5+/-6.4) who were living in self- and intermediate-care retirement villages. MEASUREMENTS: Accidental falls, choice stepping reaction time, 6-minute walk distance postural sway, leaning balance, simple reaction time, and lower-limb muscle strength. RESULTS: Two hundred eighty subjects were randomized to the weight-bearing group exercise (GE) intervention that was designed to improve the ability of subjects to undertake activities for daily living. Subjects randomized to the control arm (n=271) attended flexibility and relaxation (FR) classes (n=90) or did not participate in a group activity (n=181). In spite of the reduced precision of cluster randomization, there were few differences in the baseline characteristics of the GE and combined control (CC) subjects, although the mean age of the GE group was higher than that of the CC group, and there were fewer men in the GE group. The mean number of classes attended was 39.4+/-28.7 for the GE subjects and 31.5+/-25.2 for the FR subjects. After adjusting for age and sex, there were 22% fewer falls during the trial in the GE group than in the CC group (incident rate ratio=0.78, 95% confidence interval (CI)=0.62-0.99), and 31% fewer falls in the 173 subjects who had fallen in the past year (incident rate ratio=0.69, 95% CI=0.48-0.99). At 6-month retest, the GE group performed significantly better than the CC group in tests of choice stepping reaction time, 6-minute walking distance, and simple reaction time requiring a hand press. The groups did not differ at retest in tests of strength, sway, or leaning balance. CONCLUSION: These findings show that group exercise can prevent falls and maintain physical functioning in frail older people.