1 Introduction

Parents of children with developmental disabilities (DD) face a high level of burden and anxiety in raising the child, and there is a growing need for more specialized parental support. For instance, the Child Care Stress Index was specifically devised as an evaluation tool of parental refreshment programs for parents of children with autism spectrum disorder (ASD) [1], Another study highlighted the importance of supporting parental mental health and family functioning since parents overburdened by the problematic behaviors of their children with ASD adversely affect the entire family [2]. The Ministry of Health, Labor and Welfare of Japan has also recently amended the DD Support Law to include continued parent training and the promotion of assistance programs for families of children with DD [3]. However, some forms of training in Japan, which include the Sukoyaka Oyako 21 outlining specific methods for parent training and parent-mentor systems [4], may not be effective for DD families due to the parents’ temperament, including their beliefs, personality, and characteristics. For example, parents suffering from psychological duress are more likely to negatively affect their children's psychological adjustment and engage in less effective parenting, including hostility, lack of warmth, and inconsistency [5], with numerous accounts in which DD children go on to have more difficulties as parents than their typically developing counterparts. Generalizations in child raising are also difficult due to gender roles and the fact that paternal participation in child rearing is not overtly seen. It is therefore challenging to precisely clarify how fathers raise their children as well as their relationships with their family and supporters [6,7,8]. Furthermore, Rankin et al. suggested in their intervention studies of African Americans, Asian Americans, Anglo-Americans, Latinos, and other ethnic groups that fathers were less directly involved than mothers in the practice of child rearing, thus indicating a universal issue [9].

Regarding a need to focus on fathers, Rempel et al. investigated the effects of providing fathers with prenatal counseling, information, and opportunities to participate in fathers' clubs on infant development [10]. Their results indicated that paternal intervention improved knowledge and attitudes about the father-infant relationship, raised affection for the infant in both fathers and mothers, and increased the level of paternal intervention, all of which helped fathers build positive relationships and promote their children's development. A study by Cristina et al. found that reducing the father’s parenting stress was a factor that could increase marital relationship satisfaction and help improve child care when faced with the challenges of raising a child with ASD [11]. It is therefore conceivable that better supporting fathers of normally developing as well as DD children may contribute to enhanced family function.

Findings such as the above indicate that focusing on fathers may contribute to, strengthening fathers' own parenting attitudes and behaviors, thereby improving family function through better relationships with their spouse and children. Accordingly, the present study aimed to clarify the impact of the recognition and behavior of fathers towards children with DD in view of constructing a larger questionnaire for future cohort studies to shape subsequent father support programs.

2 Methods

2.1 Study design

The design of this study was approved by Shinshu University Medical Ethics Committee (no. 4642) and was conducted in accordance with the Declaration of Helsinki. A semi-structured interview survey was carried out with 11 child welfare center staff members engaged in DD child and family support for over 10 years, including DD support managers dealing with more difficult cases, across Nagano Prefecture, Japan. After obtaining written consent from the interviewees, the one-on-one, face-to-face or online interviews lasted 50–60 min and were structured on an open-ended interview guide addressing the topics of basic interviewee characteristics (job title, experience in medical treatment and family support, and qualifications obtained) and experience with fathers who they considered to have difficulties or success in raising their children with DD. The interviewees were instructed not to disclose any patient names or sensitive information. The authors had no direct professional or personal relationships with any of the interviewees or held any presupposing assumptions about the interview results that may have influenced data collection or interpretation.

2.2 Analysis method

With the interviewee’s consent, the interview was recorded with a digital voice recorder and a verbatim transcript was made. Content analysis was conducted using the interview transcripts according to the methods reported by Sato [12] and Terashima [13]. Briefly, a summary code was automatically assigned to each documented segment of the recordings by computer software (NVivo for Windows student version, QSR International, Burlington, MA), and then differences in the meanings of the codes were assessed by the first authors. Next, grouping and categorization were performed by the first author and an analysis supervisor (TT). In addition to discussion between the evaluators, the reliability and validity of the study was ensured by 2 supervisors familiar with qualitative research who reviewed the content of the verbatim transcripts and extracted categories.

3 Results

The interview results were categorized in terms of the fathers’ recognition/behavior (i.e., ranging from recognition/awareness to behavior/actions) as positive or negative, and the corresponding influences on the child with DD, spouse, and other individuals associated with childcare, including siblings and family welfare staff. Based on the interviews, a total of 11 potential father recognition/behavior categories were identified. Four recognition/behavior categories and 13 sub-categories were described to have a positive impact on the child and related individuals. In contrast, 7 recognition/behavior categories and 23 sub-categories were found to produce a negative impact.

3.1 Summary of participants

All study participants were sampled from a single Municipal Child Care and Family Support Center in rural Japan. They had been working with families of children with DD for at least 10 years (range: 10–31 years) (Table 1). The main qualifications obtained included licensing as a childcare worker (n = 4), special needs teacher (n = 3), social worker (n = 2), consultation support specialist (n = 1), and industrial counselor (n = 1).

Table 1 Attributes of the respondents
Full size table

3.2 Positive impacts

The fathers' behaviors that were determined to have a potential positive impact on family function by means of the interview content analysis as described in the “Methods” section were divided into 4 main categories and 13 sub-categories as described in the “Methods” section (Table 2).

Table 2 Positive impacts of fathers’ behavior in 4 categories and 13 sub-categories and representative codes
Full size table

The positive influences of the main categories of "Establish a childcare system in the family" and "Learn about the child’s situation" appeared to contribute to the child being assured of a secure life, social skill development, and better relationships with siblings. The improvement of relationships between siblings and the DD child was mentioned as well. Furthermore, when fathers showed "Preparedness to accept the child" and displayed "Relationships that promote the child’s growth", the child was more able to build trusting relationships with the father, have positive feelings for trying their best, better connect with themselves, and grow in the number of things they could do. They were also able to control their emotions and lead a calmer life, regardless of the severity of their illness.

3.3 Negative impacts

The fathers' behaviors that were considered to potentially have a negative impact on family function were grouped into 7 major categories and 23 sub-categorie (Table 3). Strikingly, we observed in our survey analysis that the category of "Impact of father's own DD recognition/behavior" appeared to exert a negative influence on his attitude and behavior towards the child. Since the relationship of the child with their father became a source of stress, children tended to depend more strongly on their mothers. Next, it appeared that the child's anxiety was heightened by the father’s behaviors of "Lack of acceptance of the child" and "Integrating in a way that does not suit the child" regarding the child's behavior and awareness. This could result in self-injury, low self-esteem, and truancy, and ultimately weaken the child’s relationship with the father. As with the other categories, the father exhibiting the categories of "Unable to change the stereotypes of the father himself" and "Excessive evaluation of the child" could result in stress, panic due to failed experiences, and a decline in self-esteem. "Avoiding contact with the child" was also seen to weaken the father-child relationship, increase the child’s dependence on the mother, and increase the physical and mental burden on the spouse. Lastly, the category "Negative attitudes towards DD", the possible rejection and prejudice towards DD might have exacerbated avoidance in relationships.

Table 3 Negative impacts of fathers’ behavior in 7 categories and 23 sub-categories and representative codes
Full size table

4 Discussion

This preliminary survey study showed that the recognition and behavior of fathers have the potential to both promote the growth of the DD child as well as contribute to stress and difficulty in the child’s life. It was unexpected that some fathers also exhibited signs of autistic behaviors. The positive and negative impacts of fathers' perceptions and behaviors will serve as foundational data for future parent training programs that recognize the father’s own unique difficulties and strengths.

4.1 Positive impacts

We observed that better family function could be a source of strength and empowerment in all areas of the DD child’s growth. Children with DD were better able to learn social skills in a supportive environment when their fathers served as role models providing opportunities to learn about society. This was in agreement with a report that fathers with positive family relationships contributed to increased competence in DD children [14]. In addition, mild-mannered parents are better able to respond to their children and teach them how to regulate negative emotions, resulting in less problematic behavior. Such fathers are more likely to work with their children with DD traits to channel ASD features into more socially acceptable behavior [15]. Since ASD is conceptualized as an extreme male brain (i.e., demonstrating a significantly higher capacity for systemizing over empathizing), fathers have been shown to have a potentially strong ability to understand DD children [16, 17], which was identified as a positive influence in the present study.

The first prerequisite for fathers to improve family function and promote the growth of their DD child is to recognize and accept their child's DD characteristics, with many studies supporting the effect of understanding DD on positive parenting behaviors towards children [18, 19]. However, in order to grasp and accept the many difficult-to-understand events caused by DD characteristics, it has been suggested that fathers must have their own sense of security and feel accepted and acknowledged by their own parents and surroundings [20]. Indeed, it is likely that the father’s upbringing history may be related to their childrearing behavior and should be assessed and addressed in future parent training programs [21].

4.2 Negative impacts

Interestingly, several negative recognition/behavior categories of fathers were found to contain signs of DD behavior, which suggested underlying anxiety and/or an inability for self-control. In addition to a poor relationship between DD children and fathers with negative patterns, a high dependence on the mother was evident along with the hindrance of childcare and rehabilitation supporter intervention.

Parenting is child-centered and requires mastery of the parent’s own emotions and behaviors. Fathers of children with ASD are at a higher risk of experiencing symptomatic and clinical levels of psychological distress compared with fathers of typically developing children [22]. In such situations when parents themselves had DD characteristics, it was found in studies of adults with ASD that they were often maladaptive in their coping behaviors in response to stressful events compared with non-ASD adults, exhibiting higher anxiety and depression symptoms that involved considerable stress, support, and time to adjust [22]. Until then, a negative cycle may occur that leads to conflicts with children and the spouse and a progressive deterioration of relationships, which is consistent with the results of this study.

Parents and children, especially those exposed to sustained anger from the father, are more likely to experience increased negative parental expression and parental rejection, which hampers the quality of attachment [23]. Since a poor relationship between father and child may restrict the child's ability to cope with anxiety and other negative emotions, maintaining a good relationship between the two is an important support mechanism that fathers need to be aware of and reflect on. Thus, our findings indicate that family support for DD children requires not only conventional parent training on how to understand and relate to the child, but also programs that enable fathers to realize and manage their own DD characteristics. Such fathers may need additional help in grasping their role as an individual responsible for the child’s present and future welfare. The above considerations will presumably enhance the effectiveness of parent training and contribute to promoting the growth and development of DD children.

Internationally, the effectiveness of Adults and Children Together (ACT), Raising Safe Kids, Positive Parenting Program (Triple P), Parenting and Family Adjustment Scales (PAFAS), Coding interactive behavior (CIB), Parental Reflective Functioning Questionnaire (PRFQ), and Parenting Sense of Competence Scale (PSOC) have been established for supporting the care of children with ASD and other DD characteristics, children with typical development or risk of abuse, and the maintenance of ongoing parental self-esteem [24,25,26,27,28,29,30,31,32,33,34]. Among the items extracted in the present study, the positive impact items of "Establishing a childrearing system in the home", "Learning about the child's situation", "Preparedness to accept the child", and "Relationships that promote the child's growth" were similar in many aspects to those described above. Moreover, several specific or unique details were uncovered from our survey answers. For the item "Establishing a childrearing system in the home", our findings also inferred the need for sibling support and compensatory practices for what the father was unable to do. The "Preparedness to accept the child" item focused mainly on the child's problematic behaviors and feelings of anger in the ACT, Triple-P, PAFAS, and PRFQ, while in this study, it also included specific parental behaviors to understand the child's situation and DD characteristics. Regarding "Relationships that promote the child's growth", the CIB described positive feelings and acknowledging the child, with a possible extension in our study to having a positive view of DD characteristics. For "Relationships that Promote Child Development", the PAFAS and CIB included items related to praise, acknowledging good behavior, and appropriate responses to the child, such as detailed explanations, eye contact, and tone of voice. In addition to these items, our results identified concepts of motivating the child, making time for the child to have fun, and acknowledging weakness.

Apart from the above items, the PSOC included other questions that were specific to mothers, which might support the need for a scale specific to fathers based on items extracted in this study. As a specific finding in this survey that was not found in existing scales, there were more items related to the father’s awareness or behavior due to his own DD characteristics, psychiatric symptoms, and traits. In this aspect, although the ACT and PAFAS have items that address direct behavior towards the child in terms of the parents' own behavior, such as irritable feelings and hand-raising, no items directly assess their own DD characteristics that might underlie or are related to such behavior.

The items extracted in our pilot survey were obtained indirectly from family welfare specialists and require confirmation directly from fathers and spouses. However, they were specific to child care for children with DD characteristics and might shed light on a new possible aspect of fathers’ inherent DD traits and difficulties in childhood. A larger, multi-center survey is being planned to develop a scale more useful in supporting fathers of children with DD.

4.3 Research limitations

A limitation of this study was that such factors as a small sample size and risk of recall bias might have limited the generalizability of our conclusions. There was also unavoidable overlap in some sub-category classifications. However, the transcript content analysis was performed using established methods [12, 13]. It will be necessary to increase the participant number in addition to a broader range of situations to validate and substantiate our observations. Second, since the data were obtained indirectly from child welfare support staff and not from the parents themselves in this pilot study, there was a possibility of discrepancies between our findings and the actual situations of families. Subsequent studies based on this preliminary report will directly gather and assess fathers’ input.

5 Conclusion

The father's involvement in some cases appeared to promote the DD child's development and ensured a secure life, while in other cases it might have caused anxiety, suffering, and difficulties living with DD for the child. Moreover, some fathers may have DD traits themselves and be unable to control their anxiety. The above findings will be used for developing larger and more detailed questionnaires directly for parents towards improving training programs for families containing children with DD.