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

Abstract

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...

Knowledge, Attitude And Expectation of Mothers of Children With Neurologic Disorders Attending The Paediatric Neurology Clinic, University Of Benin Teaching Hospital, Benin City, Nigeria

“…Of the 110 mothers studied 42 (38.3%) were referred to the neurology clinic by doctors in private practice while 68 (61.8%) were self referrals to the General Practice Clinic (GPC) of UBTH where they were first evaluated and then subsequently referred by doctors to the paediatric neurology clinic. means of enhancing quality of health care and a prerequisite for the development of optimal coping strategy and informed 13 decision making, less than 24% of mothers in this study knew the cause, diagnosis and prognosis of their children's neurological disorder at referral. Similar findings have 5,12,15 been reported by other workers.…”

“…Group therapy is not a known modality in the management of chronic or disabling neurological disorders such as epilepsy and cerebral palsy in Nigeria either because the need for it has not been previously emphasized or its importance underplayed. However the benefits of group therapy can not be over emphasized as it would provide a forum for mothers to express and share their experiences, frustrations and hope with one 13 another and the healthcare team. This will also help the healthcare team to appreciate the needs of the mothers and children for a holistic approach to management of the family.…”

¿Cómo reciben los padres la noticia del diagnóstico de su hijo con síndrome de Down?: what do the parents think?

“…Estudios previos han destacado la importancia de entregar material impreso y de facilitar el contacto con padres con experiencias similares 1,13,20 ; a pesar de esto, en nuestro estudio sólo una quinta parte de los encuestados refiere haber recibido apoyo de este tipo. Aquellos que recibieron material impreso consideran que este fue adecuado y tendieron a catalogar la experiencia como adecuada, a pesar de que no hubo diferencias estadísticamente significativas con aquellos que no recibieron material impreso.…”

Applying a healthcare model to Huntington's disease: the key worker approach

“…The key worker role has been in place in the community for some time in various forms with application to mental health, learning difficulties, and older people in the community (Challis and Davies 1985;Dant and Gearing 1990;Payne et al 2002). The main application of the role has been to facilitate co-ordinated care of chronic illness and disability in children (Greco and Sloper 2004;Rahi et al 2004). Greco and Sloper (2004) describe many transferable aspects of the key worker role.…”