[Disclosure of severe development disability: a survey of parents' experiences and preferences at an Israeli child development center].
BACKGROUND
Informing parents of a severe developmental disability (SDD) in their child is a frequent, yet extremely challenging part of care at any child developmental center. In this study, which was the first to address this issue in Israel, we asked parents for feedback on their experiences in receiving such news at our center, in order to help us develop a set of guidelines for improving clinical practice.


OBJECTIVE
To obtain parents' perspectives on the meeting at which they were first informed that their child has a SDD. How satisfied were they with these encounters? What factors are associated with higher and lower levels of satisfaction with these meetings?


METHODS
Mixed-method (quantitative/qualitative) questionnaire survey.


METHODS
Regional HMO Child Developmental Center.


METHODS
Study participants were 33 parents, constituting 62% of all those whose children first received a diagnosis of SDD (mental retardation, autism/PDD, cerebral palsy, or genetic syndromes) at our center over the past seven years.


METHODS
Parents were contacted by the social worker involved in their child's care to obtain initial consent for participation in the study. A 34-item self-report survey questionnaire, containing both closed- and open-ended questions, was sent to them by mail, to be completed anonymously. Questions were based on a survey of the literature and focused on the setting of the meeting, its contents, staff behavior, parents' satisfaction with the meeting and background characteristics of the family and child.


RESULTS
Almost two-thirds (63%) of respondents reported a high or very high level of satisfaction with the meeting at which they first heard the diagnosis of SDD. Both content analysis of open questions and statistical analysis of correlations between satisfaction and a series of potential predictors pointed to three main areas affecting parental satisfaction with the meeting: (1) Amount and type of information conveyed: Parental satisfaction with the meeting was higher when detailed information was provided regarding a number of issues (diagnosis, treatment options, educational settings, rights for benefits and assistance etc.), when parents were referred to additional sources of information, and when the clinician was seen to be knowledgeable and confident. (2) Attitudes conveyed by staff regarding the child's condition: Parental satisfaction with the meeting was higher when the child's strengths were also addressed (and not only problems); when the general tone was not pessimistic and some hope and optimism were also conveyed; and when expected and possible future developments were specified. (3) Staffs approach to the parents: Parental satisfaction was higher when staff was attentive to parents and empathic; when they clearly expressed willingness to accompany and assist the family over time; when they were respectful toward parents and related to them as equal partners; and when parents felt that they had been informed of the diagnosis without delay and that no information had been withheld from them.


CONCLUSIONS
Parents are not inevitably dissatisfied with meetings at which they are informed that their child has a SDD. Our findings point to concrete steps that clinicians can take in order to increase the chances of parental satisfaction with these meetings.
Lavi
Elana
E
Institute for Child Development, Kupat Holim Meuhedet, Rehovot, Israel. nelavi@netvision.net.il
Rosenberg
Jamina
J
D000328:Adult; D002648:Child; D002661:Child Guidance Clinics; D002658:Developmental Disabilities / Q000523:psychology*; D006279:Health Maintenance Organizations; D006801:Humans; D007557:Israel; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction; D011795:Surveys and Questionnaires; D014342:Truth Disclosure