TY - JOUR
T1 - What Parents of Children Born with a Cleft Lip and/or Palate Want to Know About the Care for their Child
AU - Heijsters, F. A.C.J.
AU - van Eick, M. D.
AU - van Nassau, F.
AU - Bouman, M.
AU - Breugem, Corstiaan C.
AU - de Bruijne, M. C.
AU - Mullender, M. G.
AU - Don Griot, J. P.W.
N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the ZonMw, (grant number 516006007). Publisher Copyright: © 2024, American Cleft Palate-Craniofacial Association.
PY - 2024
Y1 - 2024
N2 - 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.
AB - 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.
KW - cleft lip and/or palate
KW - communication
KW - digital communication
KW - doctor-patient relationship
KW - experiences
KW - multidisciplinary care
KW - patient information
KW - patient satisfaction
KW - patient-centered care
KW - qualitative
UR - http://www.scopus.com/inward/record.url?scp=85182837824&partnerID=8YFLogxK
U2 - 10.1177/10556656241227355
DO - 10.1177/10556656241227355
M3 - Article
C2 - 38239010
SN - 1055-6656
JO - Cleft Palate Craniofacial Journal
JF - Cleft Palate Craniofacial Journal
ER -