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Softas-Nall, Basilia

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The purpose of this qualitative study was to explore the experiences of adolescents born with cleft lip and/or palate and parents of adolescents with the condition. Individuals born with this condition experience extensive medical treatment from birth to late adolescence with impacts on both individuals and families. This study utilized a phenomenological design to explore and describe participants’ experiences of the impact of this condition, its medical treatment, as well as coping mechanisms utilized in adjusting to the condition. Criterion sampling was utilized to recruit adolescents between the ages of 12 and 18 and parents of this age group, all of whom were impacted by this condition. Twelve participants consisting of both individual parents and adolescents as well as parent/adolescent dyads were recruited and interviewed. Interviews were audio-recorded, transcribed, and analyzed according to phenomenological methods. Several themes emerged from participants’ descriptions of living with the condition of cleft lip and/or palate and undergoing treatment for this condition. Previous research noted the medical treatment for the condition is extensive and the findings of the present study noted its impact on identity, adjustment patterns, and emotional experiences of both adolescents and parents. The medical care was viewed with gratitude by most participants despite identified needs for additional communication and support from medical professionals. Parents and adolescents identified coping skills including social support, involvement in community or non-profit groups, and changing perspectives. Adolescents identified aspects of a process of self-acceptance within the context of social interactions and their medical treatment process. Parents identified their role as advocates for their children in social settings as a coping mechanism for social adjustment. The role of support groups in assisting parents and families to cope was key. Theoretical, research, and clinical implications for counseling psychologists and other mental health professionals were discussed. Future researchers are encouraged to consider family systems and feminist and social justice theoretical paradigms. Recruitment difficulties were discussed including the needs for more inclusion of fathers and diverse populations. The results of this research pointed to the need for an increased role for counseling psychologists and other mental health professionals in addressing the needs of children with cleft conditions and their parents. Incorporation of mental health as a discipline within cleft care medical teams would address many of the needs discussed by participants and facilitate successful adaptation and coping. Mental health professionals could provide psycho-education about the treatment process, expectations, and successful coping; screen for at-risk individuals; and provide tailored interventions for individuals, groups, or families. The need for social advocacy is also great among individuals with cleft conditions; mental health providers could work toward decreasingthe stigma and increasing understanding of this population within medical, family, or school systems.Keywords: Cleft lip and/or palate, adolescence, families, resilience, identity, social acceptance, decision making, phenomenology


Cleft palate -- Treatment; Cleft lip -- Treatment; Cleft palate children -- Rehabilitation; Parent and child


319 pages

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