Academic journal article Journal of Marital and Family Therapy

Experiences of Couples Caring for a Child Born with Cleft Lip And/or Palate: Impact of the Timing of Diagnosis

Academic journal article Journal of Marital and Family Therapy

Experiences of Couples Caring for a Child Born with Cleft Lip And/or Palate: Impact of the Timing of Diagnosis

Article excerpt

Orofacial clefts including cleft lip (CL) with or without cleft palate (CP) are among the most common congenital anomalies in the United States (U.S.) (Parker et al., 2010). The prevalence of orofacial clefts varies by race, occurring most frequently among Asians and Native Americans, followed by Whites, Hispanics, and African Americans (Banales, 2009; Wilkins-Haug, 2012). CL describes when the entire upper lip is divided at birth which can continue up into the nose through the nostril and into the incisive foramen (hard palate immediately behind the incisor teeth). Clefts are classified as unilateral or bilateral based on whether they are located on one or both sides of the cleft lip and/or palate (roof of the mouth). Cleft lip palate involves a gap in both the lip and palate (Friedman, Wang, & Milczuk, 2010).

Cleft lip and/or palate (CL/P) impacts one in every 940 (10.63 per 10,000) live births; one in every 1574 (6.35 per 10,000) babies is born with cleft palate without cleft lip (American Cleft Palate Craniofacial Association, 2009; Parker et al., 2010). Although there is no definitive cause for the development of CL/P, chromosomes, genes, advanced maternal age, proteins, and the environment as well as spontaneous genetic mutation all play a role in the development of CL/P in utero (Bille et al., 2005; Conrad, Richman, Nopoulos, & Dailey, 2009).

CL/P is associated with speech, hearing, feeding, and dental issues as well as irregularities of the bone and soft tissue that may require surgical reconstruction. Some babies born with CL/P will need ongoing surgical, dental, and speech treatment, which can affect their quality of life (Zeytinoglu & Davey, 2012). Children are typically treated by multidisciplinary teams of specialists beginning at birth and continuing through early adulthood (American Cleft Palate Craniofacial Association, 2009). Surgeries to repair the lip and palate are first performed in early infancy and continue through adolescence and young adulthood to correct both the form and function of the head and face. Additionally, some school-age children will experience learning disabilities, poor self-concept, social anxiety, social stigma from peers and consequently may need additional psychosocial support (Berger & Dalton, 2009; Kramer, Baethge, Sinikovic, & Schliephake, 2007; Pope & Snyder, 2005).

Although most researchers have focused on children affected by this condition, it has long been recognized that parents could also experience psychosocial issues (Berger & Dalton, 2009; Hunt, Burden, Hepper, Stevenson, & Johnston, 2006; Kramer et al., 2007; Murray et al., 2010). Yet, to date research with parents has been primarily cross-sectional, quantitative, and focused on the emotional, social, and care experiences of mothers (Baker, Owens, Stern, & Willmot, 2009; Despars et al., 2011; Nelson, Glenny, Kirk, & Caress, 2011; Nelson, Kirk, Caress, & Glenny, 2012; Nusbaum et al., 2008). Couples' experiences have been largely neglected and even more sparse are studies that have examined how the timing of a child's diagnosis (prenatal/in utero or postnatal/at birth) affects how couples cope and adapt. A better understanding of the impact of CL/P on couples is needed because it can expand our understanding and lead to the development of couple-based prevention and intervention programs to support parents and to help them develop better strategies for coping.

To fill this gap, we conducted a descriptive qualitative study (Creswell, 2013). We interviewed 17 couples who have varied experiences in terms of the timing of the CL/P diagnosis (10 prenatal and seven postnatal). In this article, we describe six themes that emerged after using content analysis (Braun & Clarke, 2006) to code the data, clinical implications, and recommendations for future research. First, we review the theory that informed this study.

THEORETICAL FRAMEWORK

The Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin & McCubbin, 1993) informed the development of this study. …

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