Elsevier

Journal of Pediatric Health Care

Volume 30, Issue 5, September–October 2016, Pages 453-463
Journal of Pediatric Health Care

Article
Fathers' Experience With Autism Spectrum Disorder: Nursing Implications

https://doi.org/10.1016/j.pedhc.2015.10.012Get rights and content

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.

Section snippets

Significance of Fathers

Children with developmental delays, an early warning sign for ASD, demonstrated initial and sustained improvements in behavior and development of cognitive and language skills when their fathers were actively engaged with the children and their therapies (Bagner, 2013). The families also reported improved family cohesion, stability, and well-being when the fathers were actively engaged (Bagner, 2013). No studies were found examining children with ASD and actively engaged fathers, but because

Method

A single-case, multiple-participant, phenomenological approach case study was conducted to describe the experience of fathers of children with ASD. A phenomenological approach is used when the aim of the study is hearing, understanding, and accurately telling the story of the research participants to gain a better understanding of the phenomenon (Munhall, 2012). Case studies are an appropriate research method to use when very little information exists about the phenomenon and the phenomenon is

Results

The characteristics of fathers and their children in this study are similar to the national characteristics of families and children with ASD. All of the fathers in the study stated that this was the first time they were asked about their experience with ASD. The fathers in the study had eight male and two female children, similar to the incidence of ASD in the general population of 4.5:1 male to female (Baio, 2014). Two fathers identified themselves as the primary caregiver for their children

Discussion

Fathers in this study had experiences similar to those of mothers of children with ASD that were identified in previous studies. Mothers in previous studies reported the adjustments they made related to ASD and the burden of being the caregiver for children with ASD (Bekhet et al., 2012, Hoogsteen and Woodgate, 2013, Khanna et al., 2011, Meirsschaut et al., 2010, Myers et al., 2009). The needs of mothers in previous studies included money, teamwork (social support), honesty, action, and time (

Nursing Implications

Nurses and advance practice nurses are in a unique position to advocate for families of children with ASD as they face challenges, address their needs, and overcome their grief and loss to achieve resiliency. Nurses are the eyes and ears of the health care team and the voice for the parents, making nurses a critical connection between the parents and health care team. The Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin and McCubbin, 1988, McCubbin and McCubbin, 1993) is

Conclusion

Findings from this study of fathers of children with ASD are similar to those of previous studies in mothers of children with ASD. The findings include their adjustment to the challenges of ASD, their needs to overcome the burden of caring for children with ASD, and their feelings of grief and loss. Nurses have an important role as 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. Nurses can

Linda Frye, Assistant Professor, Clinical Nursing, College of Nursing and Health Innovation, University of Texas at Arlington, Arlington, TX.

References (51)

  • M. Beer et al.

    The relationship between mindful parenting and distress in parents of children with an autism spectrum disorder

    Mindfulness

    (2013)
  • R.E. Behrman et al.

    Nelson textbook of pediatrics

    (2004)
  • A.K. Bekhet et al.

    Effects on resilience of caregivers of persons with autism spectrum disorder: The role of positive cognitions

    Journal of the American Psychiatric Nurses Association

    (2012)
  • A.C. Brody et al.

    Family resiliency during childhood cancer: The father's perspective

    Journal of Pediatric Oncology

    (2007)
  • C.J. Buck

    2013 ICD-9-CM for hospitals

    (2012)
  • Centers for Disease Control and Prevention

    Autism spectrum disorder: Data and statistics

    (2015)
  • J.W. Creswell

    Research design: Qualitative, quantitative, and mixed methods approaches

    (2014)
  • J.W. Creswell et al.

    Qualitative research designs: Selection and implementation

    The Counseling Psychologist

    (2007)
  • N.O. Davis et al.

    Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with the child characteristics

    Journal of Autism & Developmental Disorders

    (2008)
  • A. Estes et al.

    Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay

    Autism

    (2009)
  • M. Flippin et al.

    The need for more effective father involvement in early autism intervention: A systematic review and recommendations

    Journal of Early Intervention

    (2011)
  • M. Gibbert et al.

    What passes as a rigorous case study?

    Strategic Management Journal

    (2008)
  • S.K. Grove et al.

    The practice of nursing research: Appraisal, synthesis, and generation of evidence

    (2013)
  • E.G. Guba

    Criteria for assessing trustworthiness of naturalistic inquiries

    Educational Communication and Technology: A Journal of Theory, Research, and Development

    (1981)
  • S.L. Hartley et al.

    The relative risk and timing of divorce in families of children with an autism spectrum disorder

    Journal of Family Psychology

    (2010)
  • Cited by (39)

    View all citing articles on Scopus

    Linda Frye, Assistant Professor, Clinical Nursing, College of Nursing and Health Innovation, University of Texas at Arlington, Arlington, TX.

    Conflicts of interest: None to report.

    View full text