Experiences of Couples Having a Young Child with Cleft Lip and/or Palate, Comparing Prenatal and Postnatal Diagnosis Groups: A Phenomenological Study

This study was designed to describe the experiences of both mothers and fathers who are currently caring for an infant (12 months old) or young child (up to 4 years old) who was born with cleft lip and/or palate (CL/P). The biopsychosocial approach, the Resiliency Model of Family Stress, Adjustment, and Adaptation, and transcendental phenomenology guided this study. A convenience sample consisted of 17 couples (10 prenatal and 7 postnatal) who previously volunteered for an ongoing longitudinal quantitative study at the Children's Hospital of Philadelphia [PI: Dr. Canice E. Crerand, PhD (2008). Psychosocial adjustment in parents of infants with cleft lip and/or palate: The impact of prenatal versus postnatal diagnosis]. Couples completed a consent form, a demographic self-report survey, and the Revised Dyadic Adjustment Scale and then participated in in-depth interviews. The timing of the CLP diagnosis, the birth, and the initial stages after birth were reported as the most challenging periods for both prenatal and postnatal couples, unless their children still had ongoing developmental delays. The initial stages immediately following the birth were reported as more stressful for the postnatal diagnosis group because they had no time to prepare. Course of treatment, feeding, and social stigma were reported as major sources of stress for all 17 couples. Findings suggest that, regardless of the timing of the diagnosis, couples could benefit from (1) health professional's calm demeanor when first delivering the CL/P diagnosis, because it affects how parents perceive the CL/P, which later determines how they cope and problem solve; (2) an initial information session with both parents at the time of the diagnosis; (3) peer support from other couples to reduce their feelings of isolation; (4) help from health professionals to alleviate any self-blame, especially for the mothers; and (5) help for couples who are more distressed at diagnosis and especially during the first year after birth, such as regular screening and referrals for couple-based interventions to promote secure attachment and better coping. Finally, future research should include more racially and economically diverse samples of couples to develop culturally sensitive intervention programs.Ph.D., Couple and Family Therapy -- Drexel University, 201