Needs of disabled children and their families.

Milner, Judith; Bungay, C; Jellinek, D; Hall, David

doi:10.1136/adc.75.5.399

Cited by 30 publications

(20 citation statements)

References 21 publications

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“…Different models might be more suitable in other settings in the United Kingdom T he time around diagnosis is a key milestone for the parents of children with disabilities or chronic disorders. [1][2][3][4][5][6][7] The potential value of a family "key worker" in promoting information provision, emotional support, and liaisons among different agencies and services has long been discussed, [8][9][10] but such services have not been extensively implemented. We report the effects on the health service experiences of parents and the practices of health care professionals of a novel, hospital-based, key worker service within a tertiarylevel pediatric ophthalmology department.…”

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confidence: 99%

Meeting the Needs of Parents Around the Time of Diagnosis of Disability Among Their Children: Evaluation of a Novel Program for Information, Support, and Liaison by Key Workers

Manaras²,

et al. 2004

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ABSTRACT. Objective. Key worker programs for families of children with disabilities, to promote information provision, emotional support, and liaisons among different agencies, have long been advocated but not extensively implemented. We report the impact on the experiences of parents and the practices of health care professionals of a novel, hospital-based, key worker service (Community Link Team [CLT]), implemented in the pediatric ophthalmology department of Great Ormond Street Hospital (London, United Kingdom).Design, Setting, and Participants. The CLT included 2 members, 1 of whom was present during the first outpatient assessment by the consultant ophthalmologist of any child newly diagnosed as visually impaired (corrected acuity of 6/18 or worse in the better eye) and accompanied the family during other assessments performed during that visit. A dedicated room was used by the CLT members to spend time with each family after completion of the clinical assessments. The CLT members reiterated and/or clarified clinical information already provided, specifically advised the families about visual stimulation programs and the benefits and purpose of visual impairment certification, and provided information about educational and social services. The same CLT member met the family at subsequent visits to the department and acted as the first point of contact for parents. Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at Great Ormond Street Hospital participated in a 2-stage study to assess their needs, their views about the processes of care, and their overall satisfaction. The study included a questionnaire survey with 2 standard instruments, ie, the Measure of Processes of Care, specifically developed and used to assess parents' views of the degree to which health services for a range of childhood disorders are family-centered, and the short form of the Client Satisfaction Questionnaire, used to assess overall parental satisfaction or dissatisfaction with services in the preceding year, as in other studies of parental satisfaction with pediatric services. This was followed by in-depth individual interviews with a subsample of parents who returned completed questionnaires. The views of families with experience with the new service (CLT) were compared with those without. The experiences of health care professionals before and after implementation of the service were elicited through group interviews and were compared. We recognized that any differences would be attributable to both the direct effects of the CLT, ie, actual services provided by the team, and indirect effects, ie, broader changes in approaches or practices within the department resulting from shifting roles and responsibilities regarding specific elements of management. Therefore, both the specific tasks/activities undertaken by the CLT and broader changes in practices within the department were identified.Results. Seventy-nine families from the pre-CLT group and 68 from the post-CLT group (68% and 65% of thos...

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confidence: 99%

Meeting the Needs of Parents Around the Time of Diagnosis of Disability Among Their Children: Evaluation of a Novel Program for Information, Support, and Liaison by Key Workers

Manaras²,

et al. 2004

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“…Caregivers' need for further infor mation has been highlighted in studies in various settings -from Botswana (Brodin and Molosiwa 2000) and Uganda (Hartley et al 2005) to the United Kingdom (Milner et al 1996), and Australia (Dyke et al 2006) and sug gest that this is a universal need and one which therapy services do not always adequately address.…”

Section: Discussionmentioning

confidence: 99%

“…It is a lifelong condition, and the goal of a rehabilitation service is to help the child and family function in the most effective way possible (Milner et al 1996). The value of familycentred principles in guiding the delivery of paediatric reha bilitation services has been advocated in the literature for a number of years, but only recently have paediatric service providers been able to base their prac tices on the evidence for familycentred services (FCS) and not merely on recom mendations (Dyke et al 2006).…”

Section: Introductionmentioning

confidence: 99%

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Using caregivers’ perceptions of rehabilitation services for children with Cerebral Palsy at public sector hospitals to identify the components of an appropriate service

Saloojee

Rosenbaum

Stewart

2011

South African Journal of Physiotherapy

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“…Surveys of both parents and professionals (King, King, & Rosenbaum, 1996;Milner, Bungay, Jellinek, &: Hall, 1996;Rosenbaum, King, &c Cadman, 1992) as well as scholarly writing (Kolobe, 1991;Peterson & Cooper, 1989) have suggested that parental participation is crucial for improving performance in children with physical disabilities.…”

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confidence: 97%

Parental Participation in Intervention Programs for Children with Cerebral Palsy

Ketelaar

Vermeer²,

Helders

et al. 1998

Topics in Early Childhood Special Education

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Parental participation in intervention programs for children with physical disabilities has become an important issue in recent years, often emphasized by both professionals and parents. In this article, recent studies examining parental involvement in intervention programs for children with cerebral palsy are reviewed. Only a few studies were found that were explicitly designed to study the effects of parental involvement. Most of these studies reported positive results, especially regarding child-related outcomes. The effects on the parents were less clear, with positive and negative results reported. One important variable distinguishing programs with positive effects was the degree to which parents were involved in setting goals for their children's programs. Recommendations for practice and future research are given.

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Needs of disabled children and their families.

Cited by 30 publications

References 21 publications

Meeting the Needs of Parents Around the Time of Diagnosis of Disability Among Their Children: Evaluation of a Novel Program for Information, Support, and Liaison by Key Workers

Meeting the Needs of Parents Around the Time of Diagnosis of Disability Among Their Children: Evaluation of a Novel Program for Information, Support, and Liaison by Key Workers

Using caregivers’ perceptions of rehabilitation services for children with Cerebral Palsy at public sector hospitals to identify the components of an appropriate service

Parental Participation in Intervention Programs for Children with Cerebral Palsy

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