Decision-making process to undergo surgery among adolescent patients with cleft lip and/or palate.

AIM As patients with cleft lip and/or palate grow older, the main decision-making process for treatment is likely to shift from a parent-centered to a patient-centered process. However, many adolescent patients have difficulty in treatment decision-making. This study aimed to clarify the decision-making process regarding undergoing surgery among adolescent patients with cleft lip and/or palate. METHODS Participants were adolescent patients with cleft lip and/or palate aged 14-18 years who were admitted to a hospital in Japan for surgery. Fourteen patients (six boys, eight girls) and their parents agreed to participate in this study. Data were collected in face-to-face semi-structured interviews. Data were analyzed qualitatively with inductive content analysis. RESULTS Fifteen categories were classified into three themes for adolescent patients' decision-making processes regarding undergoing surgery. The three themes were: (a) a doctor's recommendation for surgery, (b) psychological conflict about surgery, and (c) a final decision about surgery. CONCLUSION This study's findings suggest that adolescent patients with cleft lip and/or palate were not adequately involved in the decision-making process before undergoing surgery. Medical staff need to explain other treatment options, the risks and benefits of surgery with materials and methods that adolescent patients can understand as part of "a doctor's recommendation for surgery." Medical staff and parents need to encourage adolescent patients to communicate their preferences and values to reduce patients' "psychological conflict about surgery" and adolescent patients' intentions should be considered in "a final decision about surgery."

[1]  U. Hallberg,et al.  Social life aspects of young adults with cleft lip and palate: Grounded theory approach , 2009, Acta odontologica Scandinavica.

[2]  I. Sharp,et al.  The Continuing Multidisciplinary Needs of Adult Patients with Cleft Lip and/or Palate , 2008, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[3]  Kristin Akerjordet,et al.  Parent participation in decision-making in health-care services for children: an integrative review. , 2014, Journal of nursing management.

[4]  Alice Maraschini,et al.  Prevalence at Birth of Cleft Lip with or without Cleft Palate: Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC) , 2011, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[5]  S. Musa,et al.  Assessment of Patients’ Level of Satisfaction with Cleft Treatment Using the Cleft Evaluation Profile , 2007, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[6]  D. Harcourt,et al.  Older Adults' Experiences of Living with Cleft Lip and Palate: A Qualitative Study Exploring Aging and Appearance , 2015, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[7]  Martin Härter,et al.  The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. , 2010, Patient education and counseling.

[8]  K. Ranganathan,et al.  Health-Related Quality of Life and the Desire for Revision Surgery Among Children With Cleft Lip and Palate , 2016, The Journal of craniofacial surgery.

[9]  N. Stock,et al.  Risk and Protective Factors at Age 16: Psychological Adjustment in Children with a Cleft Lip and/or Palate , 2015, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[10]  M. Sandelowski Focus on Research Methods Whatever Happened to Qualitative Description? , 2022 .

[11]  N. Stock,et al.  “It Doesn't All Just Stop at 18”: Psychological Adjustment and Support Needs of Adults Born with Cleft Lip and/or Palate , 2015, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[12]  F. Watzinger,et al.  Evaluation of Esthetic, Functional, and Quality-of-Life Outcome in Adult Cleft Lip and Palate Patients , 2005, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[13]  N. Pandis,et al.  Facial attractiveness of patients with unilateral cleft lip and palate and of controls assessed by laypersons and professionals. , 2014, European journal of orthodontics.

[14]  B. Devauchelle,et al.  Frequency and socio-psychological impact of taunting in school-age patients with cleft lip-palate surgical repair. , 2015, International journal of pediatric otorhinolaryngology.

[15]  A. Norman,et al.  Treatment Choice in Adolescents With Cleft Lip and/or Palate: The Importance of Shared Decision-Making , 2019, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[16]  M. Barry,et al.  Shared decision making--pinnacle of patient-centered care. , 2012, The New England journal of medicine.

[17]  K. V. van Lierde,et al.  Parent and child ratings of satisfaction with speech and facial appearance in Flemish pre-pubescent boys and girls with unilateral cleft lip and palate. , 2012, International journal of oral and maxillofacial surgery.

[18]  Y. Yamazaki,et al.  The process leading to affirmation of life with cleft lip and cleft palate: the importance of acquiring coherence. , 2012, Japan journal of nursing science : JJNS.

[19]  R. Thomson,et al.  Decision aids for people facing health treatment or screening decisions. , 2003, The Cochrane database of systematic reviews.

[20]  Helvi Kyngäs,et al.  The qualitative content analysis process. , 2008, Journal of advanced nursing.

[21]  A. James,et al.  Children's experiences of participation in the cleft lip and palate care pathway. , 2012, International journal of paediatric dentistry.

[22]  N. Carlozzi,et al.  Decision-Making in Cleft-Related Surgery: A Qualitative Analysis of Patients and Caregivers , 2020, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[23]  I. Bennun,et al.  Face value: an exploration of the psychological impact of orthognathic surgery. , 2011, The British journal of oral & maxillofacial surgery.

[24]  A. Bayat,et al.  Skin scar preconceptions must be challenged: importance of self-perception in skin scarring. , 2010, Journal of plastic, reconstructive & aesthetic surgery : JPRAS.

[25]  N. Stock,et al.  Adults’ Narratives of Growing up with a Cleft Lip and/or Palate: Factors Associated with Psychological Adjustment , 2016, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.