Communicating a Diagnosis of Cerebral Palsy: Caregiver Satisfaction and Stress

Dagenais, Lynn; Hall, Nicholas R.; Majnemer, Annette; Birnbaum, Rena; Dumas, Francine; Gosselin, Julie; Koclas, Louise; Shevell, Michael

doi:10.1016/j.pediatrneurol.2006.07.006

Cited by 50 publications

(39 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…From the time of diagnosis, parents value honesty and sufficient information (Dagenais et al, 2006). Concepts of listening and communicating and partnership are embodied in family-centered care (Sumsion & Law, 2006), which are reflected in our study.…”

Section: Advocatingmentioning

confidence: 68%

“If I Knew Then What I Know Now”: Parents’ Reflections on Raising a Child with Cerebral Palsy

Reid

Imrie

Brouwer

et al. 2010

Physical & Occupational Therapy In Pediatrics

View full text Add to dashboard Cite

In this study we investigated experiences of parents of children with cerebral palsy (CP) to identify areas in which health care providers and educators could improve practice. A second objective was to create educational material for parents of young children newly diagnosed with CP. A purposive sample of nine parents, who previously participated in the Adolescent Study of Quality of Life, Mobility, and Exercise, was recruited through phone. During an interview, parents reflected on the experience of raising a child with CP from birth to young adulthood. These interviews were audiotaped, transcribed, and coded using the International Classification of Functioning, Disability and Health-informed model and analyzed to identify major themes. Parents elaborated upon what was helpful and what could be changed to improve their children's and families' experiences through supports, advocacy, and education at different levels. The results informed the development of tips for parents and children with CP to enhance their families' experiences and interactions with health care providers, educators, and others.

show abstract

Section: Advocatingmentioning

confidence: 68%

“If I Knew Then What I Know Now”: Parents’ Reflections on Raising a Child with Cerebral Palsy

Reid

Imrie

Brouwer

et al. 2010

Physical & Occupational Therapy In Pediatrics

View full text Add to dashboard Cite

show abstract

“…Not only were children dehumanized, but mothers' feelings and concerns were also ignored. These findings are echoed in the literature on the experiences of parents with a disabled and chronically ill child (Dagenais et al 2006, Graungaard & Skov 2006, Tattersall & Young 2006.…”

Section: Discussionmentioning

confidence: 90%

Cerebral palsy: experiences of mothers after learning their child’s diagnosis

Huang

Kellett

John

2010

Journal of Advanced Nursing

View full text Add to dashboard Cite

show abstract

“…Parents recommend and prefer the following communication strategies when receiving bad news: (1) use of an honest, upfront, specific, and transparent communication style to enable parents to seek their right supports after receiving the news; (2) discussion about the child's strengths to convey hope and reframe the future; (3) person-centered and respectful treatment of the child, so that the news feels personalized; (4) provision of a list of frequently asked questions to help parents prepare their own questions; (5) delivery of news to both parents simultaneously, or to one parent accompanied by a support person, to assist with information recall; (6) provision of a follow-up interview to assist with information recall, understanding, and acceptance; (7) provision of key information in writing; and (8) involvement of an advocate/keyworker/case manager to help with planning after the receipt of news. 5,24,26,27 In light of this parental counsel about preference for a strengths-based approach, professionals could positively reinforce that the level of physical disability associated with cerebral palsy does not predetermine a child's "happiness" and quality of life (high-quality GRADE). 28,29 …”

Section: Discussionmentioning

confidence: 99%

Clinical Prognostic Messages From a Systematic Review on Cerebral Palsy

et al. 2012

View full text Add to dashboard Cite

OBJECTIVE: To summarize evidence on the rates of co-occurring impairments, diseases, and functional limitations with cerebral palsy into succinct clinical messages. METHODS:A search was conducted of the databases PubMed, Medline, CINAHL, and PsycINFO, and the results were supplemented with hand searches. Two independent reviewers determined whether retrieved abstracts met the following inclusion criteria: human subjects; .90% were children or adults with cerebral palsy; published after 1999; and population-based data. Articles were appraised, analyzing design, participants, level of evidence, rates of impairments, and functional implications. Methodologic quality was rated by using a standardized checklist. RESULTS:A total of 1366 papers were identified in the search; 82 were appraised and 30 were included in the meta-analyses. High-level evidence existed, as rated on the Oxford 2011 Levels of Evidence: 97% of prevalence studies were level 1. The data were of a moderate to high quality grade (with the exception of sleep disorders), allowing plain English clinical messages to be developed. CONCLUSIONS:Among children with cerebral palsy, 3 in 4 were in pain; 1 in 2 had an intellectual disability; 1 in 3 could not walk; 1 in 3 had a hip displacement; 1 in 4 could not talk; 1 in 4 had epilepsy; 1 in 4 had a behavior disorder; 1 in 4 had bladder control problems; 1 in 5 had a sleep disorder; 1 in 5 dribbled; 1 in 10 were blind; 1 in 15 were tube-fed; and 1 in 25 were deaf. Pediatrics 2012;130:e1285-e1312

show abstract

Communicating a Diagnosis of Cerebral Palsy: Caregiver Satisfaction and Stress

Cited by 50 publications

References 16 publications

“If I Knew Then What I Know Now”: Parents’ Reflections on Raising a Child with Cerebral Palsy

“If I Knew Then What I Know Now”: Parents’ Reflections on Raising a Child with Cerebral Palsy

Cerebral palsy: experiences of mothers after learning their child’s diagnosis

Clinical Prognostic Messages From a Systematic Review on Cerebral Palsy

Contact Info

Product

Resources

About