Abstract
Introduction
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.
Methods
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.
Results
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.
Discussion
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.
Key Words
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Biography
Linda Frye, Assistant Professor, Clinical Nursing, College of Nursing and Health Innovation, University of Texas at Arlington, Arlington, TX.
Article info
Publication history
Published online: December 16, 2015
Footnotes
Conflicts of interest: None to report.
Identification
Copyright
Copyright © 2015 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.
