Autism spectrum disorder (ASD) is a lifelong condition characterized by very mild symptoms to severe impairments in communication skills, social interactions, and unusual behaviors that interfere with independent functioning and interactions with others. ASD may cause financial, social, and emotional difficulties that negatively affect the entire family. The main focus of current research in caregivers of children with ASD focuses on the mothers rather than fathers or both parents, and no studies have used the fathers' words to describe their experience with ASD. Fathers have an important role to improve outcomes for their children receiving therapy. With more fathers taking on the primary caregiver role, it is important to understand their experience with ASD and their needs to help them actively engage in their role as fathers. The purpose of this study was to describe fathers' experience with ASD using their own words and identify any resources needed to help them actively engage in their role as a father of a child with ASD.
A single-case, multiple-participant, phenomenological approach case study was conducted to describe the experience of fathers of children with ASD. The case was defined as White non-Hispanic (the population identified as having the highest incidence of ASD) fathers who are living in the same home with their child(ren) who has/have a formal diagnosis of ASD. Fathers answered open-ended questions about their experience with ASD, including the challenges they face, their advice for other fathers of children with ASD, and what they need to overcome the challenges of ASD. The theoretical model for the study was the Resiliency Model of Family Stress, Adjustment, and Adaptation. The model was designed to help health care professionals identify a family's strengths and weaknesses as they face existing and new stressors related to a long-term medical condition and then provide interventions to help the family become resilient so they can meet the challenges.
Fathers in this study had experiences similar to those described in previous studies with regard to mothers of children with ASD. The similarity of the findings in the small sample size of fathers and those in studies with larger sample sizes of mothers supports development of clinical interventions that will benefit both mothers and fathers of children with ASD. Fathers described the adjustments made by each member of the family to face the challenges of ASD. Fathers also explained their needs, including money, teamwork, honesty, information, and time. The fathers experienced stages of grief and loss that are similar to those that occur when experiencing a death.
Nurses are the eyes and ears of the health care team and the voice for the parents, thus creating a critical connection between the parents and health care team. Fathers in the current study and mothers in previous studies described their need for someone to listen to them, educate them and others about ASD, acknowledge their experience and emotions, and direct them to appropriate resources. Nursing implications include taking action to lead the parents through the challenges and helping them develop resiliency and facilitating improved outcomes for the children and the entire family. A resource book or computer file including information about available resources and information about ASD and treatment can be a valuable tool to help overcome challenges related to ASD.
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Linda Frye, Assistant Professor, Clinical Nursing, College of Nursing and Health Innovation, University of Texas at Arlington, Arlington, TX.
Published online: December 16, 2015
Conflicts of interest: None to report.
Copyright © 2015 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.