What Parents of Children Born with a Cleft Lip and/or Palate Want to Know About the Care for their Child
What Parents of Children Born with a Cleft Lip and/or Palate Want to Know About the Care for their Child
Objective
Adequate health information that matches the needs of care recipients is a prerequisite for patient-centered care. To facilitate the provision of tailored and timely information, it isimportant to understand the information needs of parents of children and adolescents with cleft lip and/or palate (CL/P) themselves, and in addition they were asked how they experienced the provided care-related information.
Design
A cross-sectional study employing questionnaires and semi-structured interviews.
Setting
Participants were recruited from a cleft palate-craniofacial care unit in a major tertiary hospital in the Netherlands.
Participants
Participants were parents or guardians of children with CL/P, and two adolescents with CLP. They were recruited through the outpatient clinic during multidisciplinary consultation or after clinical admission.
Results
In total, fifty-five questionnaires were completed by parents or guardians and eleven interviews were conducted with nine parents of children with CL/P and two adolescents with CL/P. In general, participants reported to be satisfied with provided information during hospital admission or multidisciplinary cleft team consultations (mean 8.0, scale 0-10). In addition, 25.5% (n = 14) indicated that information to prepare for hospital admission was lacking (eg, practical information). Thematic qualitative analysis yielded five main information needs: 1) Clear communication during the care process, 2) Overview of the care trajectory, 3) Specific care plan information, 4) Presentation of information and 5) Guidance and support.
Conclusions
Our findings emphasize the importance of gaining insights into wishes and information needs from care recipients who can provide insights in their information needs. With these findings, information provision should be redesigned to improve and to foster the further transition to family-centered care.
Keywords
cleft lip and/or palate; communication; digital communication; doctor-patient relationship; experiences; multidisciplinary care; patient information; patient satisfaction; patient-centered care; qualitative.
References
About The Author
Femke van Nassau is a senior researcher at the Amsterdam UMC, VUmc, specializing in human movement science. Her work at the Department of Public and Occupational Health and the Amsterdam Public Health Research Institute focuses on developing, implementing, and scaling up lifestyle interventions to promote physical activity and reduce sedentary behavior. With a PhD in scaling up school-based obesity prevention programs, she continues to lead innovative health promotion projects across various settings.
