Fathers of young children with disabilities: How do they want to be involved?

Fathers of Young Chi ldren with Disabil it ies: How do They Want to be Involved?

A z a r Hadadian J o h n Merbler

Ball State University

ABSTRACT" Fa the r s of young children with disabilit ies were surveyed to de termine the i r amount of involvement in the daily care and t ra in ing of the i r children. Data were also collected on the fa thers ' perceptions of the i r own t ra in ing and resource needs. Data were collected via quest ionnaire ; 201 quest ionnaires were completed and re turned. The resul ts of the survey indicated t h a t fa thers of children with special needs are in te res ted in the i r child's education. Fa the r s indicated the i r preference in types and format of services. The i r top priori t ies were information about the i r child and avai lable resources. Films and tapes were the most preferred format for receiving information. A pa ren t newsle t te r was identified as an addit ional desired service. Implicat ions for ear ly childhood intervent ionis ts /chi ld care providers are discussed.

In the last decade the field of early childhood special education has experienced a paradigm shift from a child-focused to a more family- focused service delivery model. This shift has gained more visibility with the enactment of the Public Law 99-457, the Amendments to the Education of the Handicapped Act, 1986 (now the Individuals with Disabilities Education Act or IDEA). Within the IDEA's mandates, young children with disabilities will receive a "free and appropriate education" in a "least restrictive environment" setting where they can interact with nondisabled peers (e.g., regular day care, child development centers, nursery schools, Head Start classes, etc.). Therefore, it is critical for early childhood teachers, day care providers, and other professionals to be more knowledgeable about the special needs of families of children with disabilities.

A number of researchers have indicated that many parents of children with disabilities experience high levels of stress and depression (e.g. Beckman, 1983; Breslau, Staruch, & Mortimer, 1982; Friedrich & Friedrich, 1981; Innocenti, Huh, & Boyce, 1992; Moore, Ham-

Requests for repr in t s should be addressed to Azar Hadadian, Depa r tmen t of Special Education, Ball S ta te Universi ty, Teachers College Room 722, Muncie, IN 47306-0615.

Child & Youth Care Forum, 24(5), October 1995 © 1995 Human Sciences Press, Inc. 327

328 Chi ld & Youth Care F o r u m

erlynck, Barsh, Spieker, & Jones, 1982). However, most of these researchers have focused on the family as a unit or on the mother as the primary caregiver. Similarly, in many early intervention programs the emphasis has been on mothers. Mothers have traditionally been perceived as the main source of information regarding their child's development, the primary recipient of parent interventions, and the parent most likely to participate in support groups. For example, in a statewide survey, Linder and Chitwood (1984) reported that only 10% of fathers were identified as the primary source of child information. These and similar findings (e.g. Revelj, 1985; Sandler, Coren, & Thurman, 1983; Vadasy, Fewell, Greenberg, Dermond, & Meyer, 1986) are indicative of a severe communication gap between fathers and early childhood interventionists.

The minimal involvement of fathers in day care and other early intervention programs has several probable explanations. According to Revetj (1985), fathers often have few, if any, direct caregiving re- sponsibilities for their children with disabilities. Consequently, they may not have an opportunity to resolve their mixed feelings about parenting a child with a disability, which can further diminish their involvement. It also was reported that fathers are more reluctant to interact with a child who may be medically fragile or who demands more of a caregiver's time (Gabel, McDowell, & Cerrato, 1983; Jeff- coate, Humphrey, & Lloyd, 1979). As a result, Revelj (1985) argues that over time the mother-child dyad becomes stronger and the father-child dyad weakens, resulting in still greater alienation of the father and child. Consequently, by not including him in the child's program, mothers and early interventionists often foster and rein- force the father's feelings of incompetence as a significant caregiver.

In the last decade, technological, economical, and ideological changes in our society have forced fathers to assume more responsibility for early child rearing duties (Lamb, 1981). For example, Philp and Duckworth (1982) have reported that in some cases fathers have changed their jobs to be more available at home. This recent trend has also focused attention on the critical importance of the father in the family unit. Gallagher, Cross, and Scharfman (1981) cited research that reported four patterns of fathering a disabled child. In the first pattern, the father distances himself from the child emotionally and involves himself in outside activities. In the second pattern, fathers and mothers jointly reject the child. In the third pattern, fathers and mothers jointly make the child the center of their uni- verse. In the fourth pattern, fathers and mothers jointly support the child and each other.

Sandler, Coren, and Thurman (1983) studied families who partici- pated in a training program for parents of preschoolers with disabilities. The participating mothers showed gains in the knowledge of

Azar Hadadian and J o h n Merbler 329

methods of instructing their own child and an increase in their positive attitudes. However, fathers who did not receive similar training tended to express more negative attitudes as the child progressed. Sandler et al. (1983) speculated that mother-child proximity during intervention and the ignorance of the father may have created this discrepant result. In another study, fathers in the training program reported a decrease in stress and grief over time and an increase in pessimism for the child's future. This increase in pessimism may have been created as a result of fathers' increased knowledge about the child's handicapping conditions and limitations. This situation cre- ates a further need for tailored programs for fathers that may counter this pessimism (Vadasy, Fewell, Greenberg, Dermond, & Meyer, 1986). In a longitudinal study of parents of young children with disabilities, Frey, Fewell, and Vadasy (1989) reported that changes in a child's social skills were related to the father's prior perceptions of the child, but not to the mother's perceptions.

Increased knowledge about fathers' needs and adaptation may help to mobilize family strengths and offset the effects of long term stress, such as higher divorce rates, neglect, and abuse that have been reported among families of young children with disabilities (Gliedman & Roth, 1980; Von Wendt, Ekenberg, Dagis, & Janlert, 1984). In addition, research literature (Durret, Otaki, & Richards, 1984; Goldberg, 1982; Goldberg & Easterbrooks, 1984) has documented that mothers who receive support from their spouses relate better emotionally to their children. Given these findings, it appears that fathers can have an important and positive influence on the lives of their children. However, relatively little is known regarding the coping styles of fathers with young children or how factors such as social support and child care demands affect their relationships within the family.

The purpose of this study was to broaden the knowledge base about fathers through an examination of their strengths and needs as care- givers. The ultimate goal of the research is to expand and maximize the awareness of the early childhood/day care service provider of the role of fathers in the family unit especially during the transition to full implementation of the Individuals with Disabilities Education Act.

M e t h o d

Subjects

The sample included 189 fathers of children with developmental disabilities from both rural and urban programs in the state of Indi- ana. Seventy-four fathers had children with special needs from birth

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to age three and 115 fathers had children ages three to five. All the children were receiving early intervention and/or child care services. Four percent of the fathers were divorced; the remaining ones were in two-parent families. Eighty-four percent of the children were biolog- ical children, 2% of children were step-children, 7% were adopted, and 5% were foster children. In addition, one father responded "other" and one did not respond to the question.

Procedure

All the infant/toddler and preschool programs in the sate of Indiana that were serving children with disabilities were asked to participate. Due to statewide administrative changes (e.g., new federal mandates regarding service provision and program structure), only 50 programs chose to participate (20 infant/toddler and 30 preschool programs). Nine hundred questionnaires were mailed to participating programs. Questionnaires were distributed to programs and the programs, in turn, distributed the questionnaires to the fathers. Fathers were re- quested to re turn their completed questionnaires directly to the in- vestigators via self-addressed, stamped envelopes. A total of 201 questionnaires were returned. Twelve questionnaires were eliminated due to inadequate information resulting in the final sample of 189 fathers.

Survey Instrument

In an earlier study, Linder and Chitwood (1984) developed a questionnaire for assessing the needs of fathers of children with disabilities. This questionnaire was used, with some modifications, in the present study. Fathers were asked to identify the types, sources, and format of information that would be beneficial to them as fathers of children with special needs. They were also asked if they were willing to participate in any activities related to their child's program.

Resul t s

Time Spent with Child

Fathers were asked how many hours per week they spend interact- ing with their disabled child. Overall, 64% of fathers indicated they spent less than 20 hours per week. The remaining 36% reported that they spent 20 hours or more. Table 1 lists percentages broken down

Azar Hadadian and John Merbler 331

T a b l e 1 T i m e S p e n t W i t h C h i l d

Response Infant-Toddler Percent Preschool Percent

N = 74 N = 111 a

0-1 hours each week 2-4 hours each week 5-10 hours each week 10-20 hours each week 20 hours or more each week

2.7 0.9 13.5 8.9 20.3 25.6 24.3 30.1 39.2 34.5

°Two fathers did not respond to this item.

by infant-toddlers and preschool fathers. In a similar survey, Linder and Chitwood (1984) reported that 33% of fathers spent 20 hours or more and 67% spent less than 20 hours with their disabled children. They also cited research that indicated fathers spent an average of three hours per day with their nondisabled infants.

Information Topics

Fathers were asked to identify information topics tha t would be most beneficial for them. For both groups of fathers, the highest priority was information and resources available concerning their child's special needs. The second highest priority was how they could help in their child's program. Fathers of infants and toddlers gave the lowest priority to how they should relate to their other children in relation to their child with disabilities. Preschool fathers ranked relations between friends and family and their disabled child as their lowest priority. Table 2 lists all the informational topics and the associated selected percentages for both groups of fathers.

Preferred Information Format

An examinat ion of Table 3 indicates tha t films and tapes were selected as the preferred format for sharing information. Workshops were selected as the second most preferred format. Lecture was the least f requently preferred method of receiving information for both groups.

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Table 2 Informational Topics as Top Priority

Desired Information Infant-Toddler Percent Preschool Percent

N = 72 a N = 111 b

What information and resources are available about my child's special need?

What are fun activities tha t I can do with my child?

How can I help with my child's program?

What should I do when my child misbe- haves?

How should I relate to my other children in relationship to my child with special needs?

How can I communicate better with my spouse or significant other about issues concerning my child with special needs?

How can I deal with friends and family in relation to my special child?

51.4 52.3

22.2 31.5

31.9 41.4

18.9 19.8

13.9 25.2

12.5 26.1

13.9 13.5

Note: Sixty-five fa thers respnnded by mark ing more t han one topic as a top priority. "Two fa thers did not respond to this item. ~Four fa thers did not respond to this item.

Additional Services

Fathers were asked to indicate their interests concerning additional services. Approximately 60% in both groups indicated tha t they

Azar Hadadian and John Merbler 333

T a b l e 3 P r e f e r r e d I n f o r m a t i o n F o r m a t s S e l e c t e d a s T o p P r i o r i t y

Desired Format Infant-Toddler Percent Preschool Percent

N = 73 a N = ] 10"

Films, tapes 43.8 59.1 Group discussion 16.4 15.5 Workshops 30.1 30.0 Lecture 9.6 6.4 Demonstrat ion 23.3 20.9 Role play 17.8 10.0 Recreational activities 21.9 28.2

Note: Thirty-five fathers responded by marking more than one format as a top priority. "Three fathers did not respond to this item. hOne father did not respond to this item.

thought they would benefit from a newsletter. Table 4 presents data for all available choices. The fathers were also asked to identify less formal activities tha t would be of interest to them. The top three were group discussion with mothers and fathers, group recreation, and pot- luck dinners or picnics.

Educational Responsibility

Fathers were asked to indicate who should have the responsibility for their child's education. Eighty percent of the infant/toddler group and 81% of the preschool group indicated dual responsibility for parents and the school. These data are comparable with the Colorado study (83%) (Linder & Chitwood, 1984) and with previous results from other studies (Gallagher, Cross, & Scharfman, 1981). Table 5 presents data for all available choices.

Fathers" Participation

Eighty-five percent of the infant-toddler group and 84% of the preschool group indicated tha t they would probably participate in activities designed for them. Again, these data are very similar to those from the Colorado Study (86%). The majority of the remaining fathers (infant-toddler group, 15%; preschool group, 12%) indicated lack of time as the major obstacle to their participation.

334 Chi ld & Youth C a r e F o r u m

Table 4 A d d i t i o n a l Serv ices Des i red by F a t h e r s

Service Infant-Toddler Percent Preschool Percent

N = 70 ~ N = 109 b

Newslet ters 60.8 57.4 Videotapes of my child 50.0 39.1 Resource l ibrary 39.1 38.1 Films series 37.8 41.0 Include parents in s taff

inservice 29.7 37.0 Series of classes 24.3 22.0 Consul tant service 20.2 35.0 Other 0.0 1.0

Note: One hundred and forty-five fathers responded by marking more than one choice. "Four fathers did not respond to this section. ~Six fathers did not respond to this section.

D i s c u s s i o n

The results of this ~tate-wide survey indicate tha t fathers of young children with disabilities are interested in getting involved in their child's early intervention program. However, our data also indicate tha t the majori ty of fathers spend less than 20 hours per week with their young child with disabilities. Although the nature of the data and limited research on the interaction of fathers with nondisabled young children make it difficult to interpret this finding with any degree of certainty, it is nevertheless both surprising and discomfort- ing. First, the interactional time commitment is lower than comparable data reported for fathers of nondisabled young children. Second, the reduced interaction/care t ime is contrary to what one would intu- itively expect, tha t is, higher t ime demands because of their children's disabilities. However, our data are very consistent with the findings of Linder and Chitwood (1984) in Colorado.

The similarity of the findings of this s tudy to those of the Colorado Study deserves some attention. The relative consistency of the findings of the two studies certainly s t rengthens their reliability. Unfor- tunately, the consistency of outcomes also suggests tha t very little progress has occurred in meeting the needs of fathers or increasing their t ime involvement with their disabled children. The lack of posi-

A z a r H a d a d i a n and J o h n Merbler 335

Table 5 Fathers' Perception of Responsibility for Child's Education

Infant-Toddler Percent Preschool Percent Primary Responsibility N = 73 ~ N = 111 b

A dual responsibility of both parents 12.3 13.3

The child's mother's responsibility 5.5 0.0

The father's responsibility 0.0 0.9

A dual responsibility of both parents and the school 79.5 80.5

A dual responsibility of the child's father and the school 1.4 1.8

A dual responsibility of the child's mother and the school 0.0 1.8

The school's responsibility 1.4 1.8

~One fa ther did not respond to this section. '¢Ikvo fa thers did not respond to th is section.

tive change is especially disquieting given the advent of P.L. 99-457 during the years between the studies. Perhaps if a similar study is conducted within the next four years, the impact of improved training and services will finally begin to be evident.

Fathers of both groups (infant/toddler and preschoolers) indicated the need for information about available resources as their top priority. Fathers gave the lowest priority to information about how to relate to the child's siblings and how to relate to friends and other rela- tives regarding the disability. It seems that the need for immediate attention to child's needs and working through feelings of having a child with disabilities may overshadow other concerns.

Among other additional services, a newsletter was highly favored. Eighty-one percent of the fathers indicated their child's education as the dual responsibility of school and parents, and about 85% indi-

336 Child & Youth Care Fo rum

cated their desire to be involved in their child's program. These findings should provide more solid ground for involving both parents in their child's program.

Implications

The federal government's support and leadership for early intervention programs and family involvement has been clearly stated in the provisions of IDEA. Research literature has also supported the importance of family involvement in child development. Unfortunately, family involvement in most early intervention/child care programs has been focused on mothers, with fathers generally perceived as the mother's surrogate. The findings of our study and those of Linder and Chitwood (1984) suggest that this premise is false, and that much more attention must be focused on fathers to maximize their contri- bution to the development/intervention process. Even though fathers of children with disabilities are perceived as potent sources of support for their spouses and families, their needs and strengths seldom have been assessed separately from those of the mothers.

The results of this study, which are consistent with those of earlier studies (Linder & Chitwood, 1984; Gowen, Chrity, & Sparling, 1993) indicate that fathers are interested in getting involved in their child's program. They also indicate that their needs and their interests may be different from those of the mothers. Consequently, child care providers may need to broaden their palette of services to include resources and services for both mothers and fathers. For example, child care centers may consider providing a parent information resource area that provides a selection of videotapes and related materials.

Another key issue for service providers is flexibility in scheduling. Our data show that about 85 percent of the fathers would like to be involved in their child's program. The primary reason given by those who did not wish to participate was scheduling and work conflicts. This finding is also consistent with those of earlier researchers (e.g. Keenan & Suelzle, 1982; Linder & Chitwood, 1984; Markowitz, 1984).

One of the outcomes of this study was the attention it drew from service providers. A number of participant programs indicated their desire to be informed about the results. The relatively low return rate of this survey (22.3%) should not overshadow its findings. Some fathers may not have been in the habit of participating in a research study either with or independently from their spouses, and some programs may not have distributed the questionnaires as intended. It is also possible that many of the fathers did not perceive themselves as the appropriate respondent. In other words, they may have deemed

Azar H a d a d i a n a n d J o h n Merbler 337

the questionnaire topics to be within the interest]responsibility do- main of the mother. Another possible explanation is that they found the questionnaire to be a source of anxiety and avoided the task. The data gathering process by itself may have increased some fathers' attention to their involvement with the child with disabilities, however, even for those who received the questionnaire but did not return it. Another point that merits some attention is that under the provisions of IDEA, children with disabilities may be served in a variety of set- tings (e.g. day care, child development centers, hospitals, residential schools, public schools, etc.). Therefore, there is a need for preservice and inservice training for all child care providers. Most professionals receive very little specific training in how to communicate with family members, especially fathers. Revelj (1985) reported that even when fathers are present at intervention sessions, they may be excluded by the professionals and intimidated by the service atmosphere.

Findings from this study may be summarized as follows: a) family involvement is important and inclusion of fathers is critical; b) fathers' needs and interests may be different from those of mothers, and we need to gather information separately from fathers; c) fathers are interested in getting involved in their child's program; d) a variety of options and flexibility in providing services are needed; and e) re- thinking inservice and preservice training in this connection is important. These are a few keys that may unlock some shortcomings in providing comprehensive services to young children with disabilities. It is our federal and professional mandate to make every effort to include fathers in early childhood programs. We can no longer afford to ignore them.

R e f e r e n c e s

Beckman, P.J. (1983). Influence of selected child characteristics on stress in families of handicapped infants. American Journal of Mental Deficiency, 88, 150-156.

Breslau, N., Staruch, K.S., & Mortimer, E.A. (1982). Psychological distress in mothers of disabled children. American Journal of Diseases of Children, 136, 682-686.

Durrett, M.E., Otaki, M., & Richards, R (1984). Attachment and the mother's perception of support from the father. International Journal of Behavioral Development, 7, 167-176.

Frey, K.S., Fewell, R.R., & Vadasy, P.F. (1989). Parental adjustment and changes in child outcome among families of young handicapped children. Topics in Early Childhood Special Education, 8, (4), 38-57.

Friedrich, W.N., & Friedrich, W.L. (1981). Psychosocial assets of parents of handicapped and nonhandicapped children. American Journal of Mental Deficiency, 85, 551-553.

Gabel, H., McDowell, J., & Cerrato, M.C. (1983). Family adaptations to the handicapped infant. In S.G. Garwood & R.R. Fewell (Eds.), Educating handicapped infants (pp. 455-493). Rockville, MD: Aspen Publications.

338 Chi ld & Youth Care F o r u m

Gallagher, J.J., Cross, A., & Scharfman, W. (1981). Parental adaptation to a young handicapped child: The father's role. Journal of the Division for Early Childhood, 3, 3-14.

Gliedman, J., & Roth, W. (1980). The unexpected minority. New York: Harcourt, Brace, Jovanovich.

Goldberg, W.A. (1982). Marital quality and child-mother, child-father attachments In- fant Behavior and Development, 5, 96.

Goldberg, W.A., & Easterbrooks, M.A. (1984). Role of marital quality in toddler development. Developmental Psychology, 20, (3), 504-514.

Gowen, J.W., Christy, D., & Sparling, J. (1993). Informational needs of parents of young children with special needs. Journal of Early Intervention, 17, 194-210.

Innocenti, M.S., Huh, K., & Boyce, G. (1992). Families of children with disabilities: Normative data and other considerations on parenting stress. Topics in Early Childhood Special Education, 12, (3), 403-427.

Jeffcoate, J.A., Humphrey, M.E., & Lloyd, J.K. (1979). Disturbance in parent-child relationship following preterm delivery. Developmental Medicine and Child Neurology, 21,344-352.

Keenan, V., & Suelzle, M. (1982). Differentials in characteristics between pare,L group members and non-members. Boston, MA: American Association on Mental Defi- ciency (ERIC Document Reproduction (1984) Service No. ED 221012),

Lamb, M. (Ed.). (1981). The rote of the father in child development. New York: John Wiley.

Linder, T.W., & Chitwood, D.G. (1984). The needs of fathers of young handicapped children. Journal of the Division for Early Childhood, 8, (2), 133-139.

Markowitz, J. (1984). Part wipation of fathers in early childhood special education programs: An explorator~ study. Journal of the Division for Early Childhood, 8, (2), 119-131.

Moore, J.A., Hamerlynck, L.A., Barsh, E.T., Spieker, S., & Jones, R.R. (1982). Extend- ing family resources. Seattle, WA: Children's Clinic and Preschool.

Philip, M., & Duckworth. D. (1982). Children with disabilities and their families: A review of research. Windsor, Great Britain: NFER-Nelson.

Revelj, E.O. (1985). Increasing fathers' participation in therapeutic intervention programs for exceptional children. Unpublished doctoral dissertation, Nova Univer- sity, Fort Lauderdale, FL.

Sandler, A., Coren, A., & Thurman, S.K. (1983). A training program for parents of handicapped preschool children: Effects upon mother, father, and child. Excep- tional Children, 49, (4), 355-358.

Vadasy, P.F., Fewell, R.R, Greenberg, M.T., Dermond, N.L., & Meyer, D.J. (1986). Fol- low-up evaluation of the effects of involvement in the fathers program. Topics in Early Childhood Special Education, 6, (2), 16-31.

Von Wendt, L., Ekenberg, L., Dagis, D., & Janlert, U.A. (1984). A parent centered ap- proach to physiotherapy for handicapped children. Developmental Medicine and Child Neurology, 26, 445-448.

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Fathers of young children with disabilities: How do they want to be involved?