Fathers of young children with disabilities in the United States: current status and implications.
Reported experiences of fathers of children with disabilities are diverse and include 1) "distressed" marital relationships (Risdal & Singer 2004); 2) lack of information about resources (West, 2000); 3) an array of outcomes--both positive and negative--in response to their children's disabilities (Meyer, 1995; Young & Roopnarine, 1994); and 4) varying levels of stress when compared to their partners (Wanamaker & Glenwick, 1998). The remainder of this article examines the extant research knowledge base since 1999, and presents key findings and practitioner recommendations to guide family-centered practice.
OUTCOMES ANTICIPATED FOR FATHERS OF YOUNG CHILDREN WITH DISABILITIES
The professional literature reports mixed findings regarding outcomes for fathers of young children with disabilities (Wang et al., 2006). Risdal and Singer (2004) reviewed studies conducted between 1975 and 2003 and observed that no changes had occurred with regard to the impact of children with disabilities on married couples. Not surprisingly, the researchers noted that "wide variability" exists across families, many of whom report positive benefits to marital relationships associated with the presence of a child with a disability.
In the past decade, however, some studies have emerged to clarify specific paternal issues more generally and issues related to specific groups of young children having disabilities. The studies examined in the following sections are organized by two primary themes: fathers' stress and experiences, and fathers' involvement and needs.
Fathers' Stress and Experiences
The perception that increased levels of stress are associated with the presence of disability in families has persisted over time. Generalization of this assumption, however, has been questioned, given the historical research emphasis on negative aspects of disability presence in the family (Risdal & Singer, 2004). Despite such limitations, studies of fathers having children with specific disabilities and stressors have provided insights for service delivery. For example, Roach, Orsmond, and Barratt (1999) examined parental stress and involvement related to child care issues for mothers and fathers of both typically developing preschool children and those having Down syndrome (DS). Parents of children with DS reported having more stress than parents of typically developing children; although maternal stress predicted paternal stress, the opposite was not true. More recently, fathers of children with DS were reported to have: 1) less depression and stress compared to mothers, 2) better understanding of the nature and cause of DS, and 3) greater access to support provided by parent groups when compared to fathers of children with mixed intellectual disabilities (Stoneman, 2007). Fathers of children with DS also reported less child-related stress related to acceptability, adaptability, and "demandingness" of children, compared to fathers of children with varying intellectual disabilities (Ricci & Hodapp, 2003). It appears that personality, age, and maladaptive behaviors of children with DS may be related to fathers' stress levels, while maladaptive behaviors, gender, and the fathers' education levels are related to stress levels in fathers of children with other intellectual disabilities (Ricci & Hodapp).
While a few studies have examined fathers of children with DS, young children with autism spectrum disorders (ASD) and their fathers have increasingly become the focus of research, given the marked increase of children with this disability. Hastings et al. (2005) found no maternal-paternal differences in stress among parents of children with ASD, and also observed that fathers' stress was unrelated to their children's behavior problems. Mothers tended to hold more positive perceptions of their young children with ASD than fathers, but both parents tended to report a "positive" impact of the child on the family. In contrast, Davis and Carter (2008) found elevated parenting stress in both parents of children with ASD, although paternal stress was consistently lower than that of mothers. Unlike the findings reported by Hastings et al. (2005), children's externalizing behaviors (e.g., aggression, hyperactivity) were found to be associated with stress among fathers. The investigators noted the need for future research with families experiencing clinically significant levels of stress subsequent to diagnosis, with a particular emphasis on understanding the unique experiences of both mothers and fathers.
Fathers' Involvement and Needs
The involvement and needs of fathers are related to the extent to which family needs are met, degree of enjoyment experienced during time spent together, and whether important family issues are addressed (Turnbull et al., 2006; Wang et al., 2006). Elder, Valcante, Won, and Zylis (2005) observed that "the more involved the father is, the less stress seems to be experienced by the rest of the family" (p. 275).
Although stress has been examined among fathers, little is known regarding the nature of their involvement with their children. Certainly, culture exerts a substantive influence on fathers' child-rearing involvement (Elder, Valcante, et al., 2003; Lynch & Hanson, 2004), and variability exists regarding the roles and responsibilities of fathers across cultural groups (Elder, Valcante, et al.). Some evidence indicates that there are more similarities than differences between fathers of typical children and those having disabilities, although there may be a corresponding decrease in paternal involvement over time if a diagnosis is made by nine months of age (Dyer et al., 2009).
Despite the paucity of studies conducted thus far on father involvement, a number of research-based practices have been reported to guide education professionals in family-centered service delivery. For example, Turbiville and Marquis (2001) found that fathers of young children with disabilities tended to prefer "inclusive activities"--ones that involved all family members, both men and women, in planning for the child's future and focusing on being a better parent. To address being a better parent, Elder et al. (2003) examined the needs for interventions that enhance both the confidence and competence of fathers, and identified which result in positive father-child relationships. These researchers noted that fathers "require support systems in their families, health care system, and communities that encourage and reward their involvement and relationships with their children" (p. 292). One family-centered approach of note is home-based professional development provided to mothers and fathers. Using such an approach, Elder, Valcante, Yarandi, White, and Elder (2005) found no differences in targeted parenting behaviors between mothers and fathers after intervention.
Despite decades of family-centered service delivery in the United States, a relatively small knowledge base exists relative to fathers of young children with disabilities, and much remains to be understood. The limitations of the current body of knowledge reviewed includes: 1) a small number of research investigations; 2) lack of diversity in participants (i.e., ethnicity, variations in disabilities, and definition of father); 3) variability in research methodologies employed; and 4) relatively few "best practice" recommendations specifically for this population.
Sensitivity to Experiences/Needs and Facilitating Involvement
Given that fathers have diverse needs related to their young children with disabilities, the importance of communicating with them, and gathering and providing both general and specific information to them, is critical for the delivery of effective family-centered services. To facilitate fathers' involvement, the strategies and activities used by education professionals should be sensitive to and developed for both mothers and fathers, while also considering the specific needs and preferences of fathers (see Table 1). Many fathers may prefer to "be with other men" and to have activities "designed especially for them." Planned activities, such as support groups, should be sensitive to fathers' work schedules, and, when possible, personal invitations should be extended to them to ensure that they recognize their importance as participants and decision-makers in processes involving their children.
To maximize participation, fathers must be encouraged to voice their concerns and to share their experiences in raising their children with disabilities. Additionally, they should be provided specific strategies that can be readily implemented to support their children's development. To ensure the transfer of skills to fathers, such supports as individual and in-home training should be considered.
Use of current information and communication technologies (e.g., listservs, discussion forums, Wikis, blogs) hold great potential to provide support for fathers and have been increasingly used in various service sectors to create connections with, or "communities" of, individuals having shared interests. Given the increasing availability of information and communication technology-based resources that are used by various family-oriented support organizations, education professionals also should: 1) strive to be aware of existing, and create new, family support resources that might be of interest to fathers (and allow them to "tell their stories"); 2) recognize the importance of and create mechanisms for father-to-father communication within such resources; and 3) ensure that information is provided regarding coping strategies, respite care/other services, and effective strategies for accessing social support systems.
Professional Development Implications
Showing sensitivity to fathers' needs and preferences can lead to more effective professional development activities that reflect best practices in family-centered service delivery (see Table 1). Of particular importance is a shared recognition by both developers and recipients of effective professional development that: 1) all fathers have valuable knowledge, skills, and experiences regarding their young children with disabilities; 2) fathers have particular preferences and needs for supports and interactions with others; and 3) a systematic and sustained plan for involving fathers is critical, requiring both father-specific content and communication strategies.
Given the paucity of research that has been conducted with fathers of young children with disabilities, there is a need to increase the collection and dissemination of such information regarding fathers (Meadan, Parette, & Doubet, 2010). In most studies, descriptive information is limited and reflects convenience and self-selecting sampling procedures that limit the generalization of the findings. Demographic limitations also minimize our ability to draw conclusions about how fathers' roles and involvement might vary across demographic contexts (e.g., single fathers, gay fathers, ethnic minorities, low/high SES, types of disability).
Because mothers and fathers may differ in how they perceive their family situations and the manner in which they cope with their children with disabilities (Pelchat, Lefebvre, & Perreault, 2003), it is important to gather information from both mothers and fathers. Additional research is needed regarding specific factors, or combinations of factors (e.g., family demographics), that may predict both potentially negative and potentially positive outcomes, and thus facilitate the development of appropriate family interventions to support fathers.
Surprisingly, little has been done to examine differences among fathers across cultural groups. Such cultural differences among children and their families have been articulated (Hanson & Lynch, 2003; Lynch & Hanson, 2004; Parette, Huer, & Peterson-Karlan, 2008), and the importance of culturally sensitive education practices noted (Kalyanpur & Harry, 1999; National Association for the Education of Young Children, n.d.; Parette & Brotherson, 2004; Parette & Petch-Hogan, 2000). However, whether or not differences exist across cultural groups for fathers of young children with disabilities remains a research topic to be studied. For example, the communication styles of fathers across cultural groups and the specific methods used by education professionals when communicating with families may be quite different. Similarly, technology preferences and use patterns of fathers who employ information and communication tools to get information and communicate with other fathers and families may differ markedly.
An additional concern is the lack of diversity in the literature around the definition of "father." Most, if not all, of the fathers in the reviewed studies were the biological fathers of children with disabilities who lived in two-parent families. This restriction of the definition of fatherhood precludes insights about other fathers (e.g., single fathers, non-resident fathers, step- and adoptive fathers, gay fathers). It is critical to conduct research that includes more diverse participants who mirror current U.S. demographics (Dyer et al., 2009).
Finally, numerous studies have lacked other measures (e.g., direct observation, interviews, focus groups), which limited triangulation of data and thereby prevented in-depth understanding of the "voices" of fathers. Additionally, longitudinal studies are needed to understand transitions in the lives of fathers (e.g., birth to early intervention services to school-based services).
In summary, great challenges remain in trying to better understand, include, and provide family-centered services to fathers of young children with disabilities. The lack of research and research-based strategies for these fathers may result in an ongoing reliance on status quo perceptions and previously employed family strategies, which may have the unintended effect of minimizing fathers' involvement in service delivery. Thus, it is paramount for the field to expand the representation of these fathers in research, enabling us to respond to their voices in sensitive, appropriate ways.
Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism & Developmental Disorders, 38, 1278-1291.
Dyer, W. J., McBride, B. A., Santos, R. M., & Jeans, L. M. (2009). A longitudinal examination of father involvement with children with developmental delays. Does timing of diagnosis matter? Journal of Early Intervention, 31, 265-281.
Elder J. H., Valcante, G., Won, D., & Zylis R. (2003). Effects of in-home training for culturally diverse fathers of children with autism. Issues in Mental Health Nursing, 24, 273-295.
Elder, J. H., Valcante, G., Yarandi, H., White, D., & Elder, T. H. (2005). Evaluating in-home training for fathers of children with autism using single-subject experimentation and group analysis methods. Nursing Research, 54, 22-32.
Fatherhood Institute. (2007). Fatherhood Institute research summary: Fathers and disabled children. Retrieved February 1, 2010, from http://www.fatherhoodinstitute.org/index. php?id=17&cID=706
Hanson, M. J., & Lynch, E. W. (2003). Understanding families. Approaches to diversity, disability, and risk. Baltimore: Brookes.
Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, F. D., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism & Developmental Disorders, 35, 635-644.
Kalyanpur, M., & Harry, B. (1999). Culture in special education: Building reciprocal family-professional relationships. Baltimore: Brookes.
Lynch, E. W., & Hanson, M. J. (Eds.). (2004). Developing cross-cultural competence. A guide for working with children and their families (3rd ed.). Baltimore: Brookes.
Meadan, H., Parette, H. P., & Doubet, S. (2010, January). Supporting fathers of young children with autism and developmental disabilities using technology. Poster presented to the 12th International Conference on Autism, Intellectual Disabilities & Other Developmental Disabilities, Maui, HI.
Meyer, D. J. (1995). Uncommon father--Reflections on raising a child with a disability. Bethesda, MD: Woodbine House.
National Association for the Education of Young Children. (n.d.). Fathers. Retrieved February 1, 2010, from http://tyc.naeyc.org/articles/pdf/InvolvingFathers.pdf
Parette, H. P., & Brotherson, M. J. (2004). Family-centered and culturally responsive assistive technology decisionmaking. Infants and Young Children, 17, 355-367.
Parette, H. P., Huer, M. B., & Peterson-Karlan, G. R. (2008). Working with persons with developmental disabilities across cultures. In H. P. Parette & G. R. Peterson-Karlan (Eds.), Research-based practices in developmental disabilities (2nd ed., pp. 143-167). Austin, TX: Pro-Ed.
Parette, H. P., & Petch-Hogan, B. (2000). Approaching families. Facilitating culturally/linguistically diverse family involvement. Teaching Exceptional Children, 33(2), 4-10.
Pelchat, D., Lefebvre, H., & Perreault, M. (2003). Differences and similarities between mothers' and fathers' experiences of parenting a child with disability. Journal of Child Health Care, 7, 231-247.
Ricci, L. A., & Hodapp, R. M. (2003). Fathers of children with Downs syndrome versus other types of intellectual disabilities: Perceptions, stress, and involvement. Journal of Intellectual Disability Research, 47(4&5), 273-284.
Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29, 95-103.
Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare. American Journal on Mental Retardation, 104, 422-436.
Social Care Institute for Excellence. (2005). SCIE research briefing 18: Being a father to a child with disabilities: Issues and what helps. Retrieved February 1, 2010, from http://www. scie.org.uk/publications/briefings/briefing18/index.asp
Stoneman, Z. (2007). Examining the Down syndrome advantage: Mothers and fathers of young children with disabilities. Journal of Intellectual Disability Research, 51, 1006-1017.
Turbiville, V. P., & Marquis, J. G. (2001). Father participation in early education programs. Topics in Early Childhood Special Education, 21, 223-231.
Wanamaker, C. E., & Glenwick, D. S. (1998). Stress, coping, and perceptions of child behavior in parents of preschoolers with cerebral palsy. Rehabilitation Psychology, 43, 297-312.
Wang, M., Summers, J. A., Little, T., Turnbull, A., Poston, D., & Mannan, H. (2006). Perspectives of fathers and mothers of children in early intervention programmes in assessing family quality of life. Journal of Intellectual Disability Research, 50, 977-988.
West, S. (2000). Just a shadow: A review of support for fathers of children with disabilities. Birmingham, England: Handsel Trust.
Young, D. M., & Roopnarine, J. L. (1994). Fathers' childcare involvement with children with and without disabilities. Topics in Early Childhood Special Education, 14, 488-502.
Howard P. Parette, Jr. is Professor and Kara Peters Endowed Chair, and Director, Special Education Assistive Technology Center, and Hedda Meadan and Sharon Doubet are Assistant Professors, Department of Special Education, Illinois State University, Normal.
Table 1 Implications for Practice Based on Research With Fathers of Young Children With Disabilities Sensitivity to Facilitating Professional Experiences and Fathers' Involvement Development (PD) and Needs Program Activities/ Policies Provide information Develop and offer Respect fathers' about strategies to activities for both knowledge and support children's parents experiences development Provide both general Ensure flexibility Conduct PD on and specific in scheduling identified fathers' information about activities and issues children's meetings to educational and accommodate fathers medical needs who work outside the home Share information Extend personal Conduct PD on about available invitation to strategies to community and Web fathers for enhance resources participation in communication with activities fathers Develop Encourage fathers to Include information family-centered voice concerns and on fathers' education and share experiences involvement and its training programs importance in staff regarding specific professional intervention development strategies and support fathers' participation Organize "men-only" Involve fathers in Review professional activities to their children's development content/ provide support and decision-making materials to ensure facilitate sharing processes they are likely to engage both men and women Organize and Acknowledge fathers' Acknowledge fathers' encourage skills, knowledge, knowledge and skills participation in and experiences support groups Provide information Celebrate fathers' Evaluate needs of regarding coping involvement and fathers and develop strategies focus on positive activities to relation-ships with support these needs children Provide information Survey preferences about respite care and needs of both and other services fathers and mothers on an ongoing basis Discuss strategies for accessing social support systems Encourage and promote father-to-father communication (in person and using an array of information and communication technologies) Sensitivity to Future Research Experiences and Needs Provide information Examine the unique about strategies to experiences of support children's mothers and fathers, development particularly with regard to stressors experienced and subsequent coping responses Provide both general Increase diversity and specific of participants in information about research children's investigations, to educational and include multiple medical needs variables such as SES, education levels, ethnicity, variations in disabilities, and definition of father (e.g., fathers who are single, non resident, gay, step, foster, adoptive) Share information Vary research about available methodology used community and Web (i.e., interviews, resources focus groups, longitudinal) Develop Examine the diverse family-centered communication styles education and of fathers training programs regarding specific intervention strategies and support fathers' participation Organize "men-only" Investigate the activities to information and provide support and communication facilitate sharing technology (ICT) supports preferred and used by fathers to obtain information and resources offered by service providers Organize and encourage participation in support groups Provide information regarding coping strategies Provide information about respite care and other services Discuss strategies for accessing social support systems Encourage and promote father-to-father communication (in person and using an array of information and communication technologies) [c] 2010, SEAT Center. Used with permission.
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|Author:||Parette, Howard P. Jr.; Meadan, Hedda; Doubet, Sharon|
|Date:||Aug 15, 2010|
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