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

Jugnoo S Rahi, Irene Manaras, Helena Tuomainen, Gillian Lewando Hundt
Pediatrics 2004, 114 (4): e477-82

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 those invited, respectively) participated in the questionnaire survey, of which 29 and 19 (71% and 79% of those invited), respectively, took part in interviews. The 2 groups were comparable with respect to sociodemographic and clinical characteristics. Parents and health care professionals agreed that the CLT provided important information and facilitated access to specific services, while providing both emotional and social support and facilitating meetings with other families with children with similar conditions. A number of key generic components of the service were identified. First, provision, within the outpatient setting, of a dedicated "quiet room" and office space for key workers was an essential physical requirement. Second, early identification of the key workers as the parents' point of contact was essential; this was achieved in this case by the CLT members attending the first consultation, combined with their detailed debriefing of families at the end of the outpatient visit. Third, the adoption of certain tasks by the key workers, including some previously undertaken by ophthalmologists, helped to define the liaison role of the program. These tasks included discussing the process and benefits of visual impairment certification, contacting the advisory teacher for the visually impaired, and providing written reports to educational and social services; analogous tasks would exist for other disabilities.

CONCLUSIONS: Research on the needs of families of visually impaired children has been limited but indicates that, as with other childhood disabilities, the greatest needs during the critical period around diagnosis are for information, especially about educational and social services, and emotional support from professionals, informal and formal social networks, and support groups. Although not widely implemented or studied, key worker programs for families of visually impaired children, particularly in the context of multidisciplinary visual impairment teams, have been advocated, on the basis of their potential to facilitate coordination of health, educational, and social services. The model of such provision evaluated in this study reflects the fact that it was established as an outpatient service in a tertiary referral center for pediatric ophthalmology in the United Kingdom, with the specific structure and specialized roles for health care professionals that this requires. Different models might be more suitable in other settings in the United Kingdom or elsewhere. However, the important general lessons learned should guide implementation of such services for families of children with other disabilities. The recently launched National Service Framework for Children provides a new context and standards for meeting the needs of disabled children and their families in the United Kingdom and may also guide initiatives elsewhere. The findings of this study support implementation of programs for information provision, support, and liaison by key workers in all specialized centers for the assessment and diagnosis of children with serious visual problems. Implementation of similar services for families with children with other disabilities is likely to be equally valuable.

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