According to the Japan League on Developmental Disabilities (2013), the number of children with developmental disabilities (DDs) in Japan has seen a recent and steady increase. Data from the National Survey on School Children with Special Educational Needs in a Regular Class indicate that 6.5% of Japanese children are affected by mild DDs, which, although less severe than mental retardation, are sufficient to cause significant learning and behavioral difficulties.
Despite their high prevalence rates, DDs remain insufficiently understood. Furthermore, the social support offered to children with DDs and their families remains inadequate because of the “traditional prejudice among Japanese people against children/persons with DDs” (Wakimizu, 2012) and “delayed actions by the government for these people” (Ministry of Health, Labour and Welfare, Japan, 2005).
In Japan, the Act on Support for Persons with Developmental Disorders, enacted in April 2005, defines DDs such as autism, Asperger’s syndrome, pervasive developmental disorder (PDD), learning disorder, and attention deficit hyperactivity disorder as conditions that usually develop at an early age (Ministry of Health, Labour and Welfare, Japan, 2005). Hiraiwa (2009) provided a qualitative definition of DD as “a disorder that typically causes behavior, communication, and social adjustment problems during the development process.” Descriptions in the Act describe the status quo for DDs in Japan as follows: “Because the current legal system does not adequately address DDs, those with these disorders are marginalized and overlooked.” “We are currently experiencing a shortage of DD experts, insufficient cooperation with professionals, and an inadequate support system for DDs”; “Families rearing a child with a DD must bear a heavy anxiety burden with inadequate support from the regional community.” Considering these circumstances, the understanding about DDs and the support offered by society to children with DDs and their families are insufficient. In fact, a little under 40% of these children receive no special support. Therefore, the parents who are responsible to care for children with DD face great distress (Yamada et al., 2007).
Children with DD cause or are involved in problems in the community or at school (Takahashi, 2008). Their parents must handle these problems and experience more child-rearing-associated stress than other parents (Anderson, 2008; Nachshen & Minnes, 2005), leading to great pressure in child rearing (Karst & Van Hecke, 2012; Raina et al., 2004). Although most parents adjust to raising their child with DD, the few who fail to adapt have been shown to be at a higher risk for becoming child abusers (Raina et al., 2004).
A child with DD may cause stress to his or her kin and siblings (Schuntermann, 2009). Kao, Romeo-Bosch, Plante, and Lobato (2012) reported that Latino siblings reported concerns about restricted social activities because of their brother or sister with DD. Moreover, Karst and Van Hecke (2012) reported that raising a child with DD causes high levels of stress across the entire family.
In terms of quality of life (QOL), children with DD and their mothers scored lower for QOL than their normal control group peers (Furusho et al., 2006). In addition, Inada (2010) reported that both the psychological and social QOL of adults with PDD were significantly lower than the general population. The results of multiple regression analysis identified “the presence of the mother to provide support” as an important factor for increasing both psychological and social QOL among adults with PDD.
For the mother to be present to provide support, it is essential that effective support programs be devised to maintain and improve the mothers’ QOL by eliminating the above-described stresses and pressures on herself and her family. The operation of parent training programs for parents of children with DD as one part of a support program has been shown to be effective (Tellegen & Sanders, 2013). As group-based interventions such as parental training are put into effect, it is necessary to build tailor-made models of childcare support that will continue to support health checkups and diagnoses by community-based medical institutions. For this reason, we felt it necessary to elicit and categorize the main problems faced by parents and families of children with DD and then to present initiatives tailored to their respective needs.
This study explores the issues and needs of parents of children with DD to design support programs that effectively maintain and improve the QOL of the affected family.
A qualitative research method was employed to understand the issues and needs of participants. Data were collected using focus group interviews (FGIs; Lederman, 1990).
Merton and Kendall (1946) conducted FGIs as a way to compile their research results. Initially used in marketing, FGI is now applied in a broad range of fields that includes communication, politics, and advertising. FGIs have been used to enable specialists to ascertain the key issues, needs, and emotions of clients as well as the awareness and behaviors of nurses (Holloway & Wheeler, 1996). Takayama and Anme (1998) conducted FGIs in Japan during the course of their medical, nursing, and welfare activities.
Participants in this study included parents of children with DD who had been diagnosed during the past 10-year period. After being debriefed on the study purpose, 55 patients of a DD or psychosomatic disorder diagnosis and treatment department at a university hospital and a children’s welfare medical center were approached and invited to participate.
The issues and needs of participants were elicited using the following interview guide:
- (1) Please describe some especially tormenting/difficult experiences that you had before and after your child was diagnosed with a developmental disability.
- (2) In caring for your child, what sorts of issues have affected your family life?
- (3) In caring for your child, what sorts of issues have affected your child’s social life?
- (4) How has caring for your child affected you and your family’s quality of life?
- (5) Kindly express your opinions regarding your child’s psychosomatic treatment and interventions and your opinions regarding the general healthcare support and welfare received by your child and your family.
We asked participants to freely share their difficulties or memorable experiences both before and after their child’s DD diagnosis. An experienced interviewer conducted all of the interviews with a recorder or observer on hand to encourage sharing. The interview was recorded on a digital voice recorder with the participant’s consent. The 120-minute-long interviews were held on November 12, 2013, in Tokyo; November 13, 2013, in Mito; and November 26, 2013, in Tsukuba. The questions were framed in accordance with the interview guide.
Data were analyzed using Lederman’s analysis method (Lederman, 1990). We transcribed the complete interview material and then extracted and summarized the significant thoughts of participants on issues and needs. Similar data were first compiled using the KJ method (Kawakita, 1967) and then categorized into thematic groups. A qualitative research specialist supervised the analysis to verify the confirmability, credibility, dependability, and transferability of the categories. We used these data to create a conceptual scheme of the structure of participant issues and needs (Takayama & Anme, 1998).
All participants provided verbal and written consent to participate based on the following conditions: (a) participation in the survey is completely voluntary, (b) nonparticipation will not adversely affect the medical care or treatment of the child, (c) consent to study cooperation may be withdrawn at any time during the study, and (d) the privacy of participants will be strictly observed in all published study results. The study was conducted with the approval of the medical ethics review board of the University of Tsukuba.
Of the 55 parents approached, 25 agreed to participate in the research. We required at least five participants per a focus group and allowed each participant equal opportunity to speak. Table 1 provides the general background information of participants. As shown in Table 2, we identified six categories of issues, divided into two stages: initial issues (“parent confusion” stage) and current issues (“parent confrontation and improvement” stage). The categories were further classified into three family domains: the individual’s family members (primary caregivers), the interfamilial relationships, and the sociality of the family unit. We identified three of the categories as representing particularly significant needs: information needs, consultation needs, and family support needs (Table 2). An in-depth description of each category and subcategory (in parentheses) is given below.
First Issues (Stage of Confusion)
The issues in this stage were classified into 102 data points, seven subcategories, and three categories. Because it is difficult to ascertain DDs at a glance, stigma against a child’s problematic behavior as well as familial conflicts and social isolation as a family, particularly before diagnosis, may occur.
Distress experienced by the caregiver
This category comprises the subcategories of “the difficulties of raising the child,” “the feeling of being uncomfortable with the child,” and “a sense of hopelessness.” Parents discussed their day-to-day distresses experienced with their child before his or her DD diagnosis:
He was different from his older siblings and others in his age group. Despite being treated in the same manner as his siblings, he was slow in learning and speaking. He always played by himself and could not get along with other children. So, I started worrying about him when he was about the age of 2. (Woman, 44 years old)
My son was not the smiling little angel that I had always hoped for, and from the beginning I didn’t think of him as cute. Even though I knew he was just 1 or 2 years old, I would sometimes ignore my son, sometimes get excessively angry and raise my hand…when I think about it now, I guess it was like I had some kind of childcare neurosis. (Woman, 46 years old)
Whenever our son caused trouble with his friends, my husband or I would have to apologize to their parents. This problematic behavior has made me suffer from mild depression for some time now. (Woman, 38 years old)
Dissonance between family members
This category comprises the subcategories of “discrepant attitudes towards or understandings of the child” and “distress in the family.” Here, we obtained narratives concerning the relationships within the family before the DD diagnosis. Conflicting opinions between the parents concerning their attitudes toward or understanding of their child and disagreements over whether relatives should be informed of their child’s disorder were frequently reported by the participants. They also reported experiencing emotional distress when conversing with nonempathetic family members:
Since my husband worked from early in the morning until midnight every day, he had absolutely no idea of the state our son was in when he woke up on weekdays. If he were unlucky, he’d also work on Saturdays. I would reach the end of my rope worrying about our only son’s harmful behavior, terrible tantrums, and intense feelings. However, when I mentioned daily episodes of specific distress and the difficulties of raising our son to my husband, he would just dismiss them, saying, “It’s because he’s a child. It’s normal” or “Are you sure you don’t just think he’s odd because you’re tired?” (Woman, 36 years old)
My daughter suddenly asked me one day whether her big brother was stupid. On asking her why she thought so, she started to cry. When she did that, I hugged her tightly, being suddenly afraid that it was not just we as parents, but also our daughter—at her school or with her friends—who were experiencing these troubling thoughts. (Woman, 44 years old)
Social isolation of the family unit
This category comprises the subcategories of “isolation in society” and “deficiency of child-rearing information.” Here, the participants discussed relationships between the family (as a unit) and society, primarily before diagnosis. Participants related how their children’s problematic behavior led them to avoid or cease wider social interactions. In addition, participants reported that the lack of adequate child-rearing information led to families being unable to take advantage of support systems and resources in the community, resulting in the family’s increased social isolation:
Before our son was diagnosed, I was adamant that we would close ourselves up in the shell of our home, so…our interactions with other people were pretty much nil. The little we had occurred when I took him shopping or had to get him checked for a cold, I guess. I didn’t even feel like part of the “mother’s club.” (Woman, 39 years old)
Information regarding our daughter’s disorder was not as widely known at that time as it is today. We required more information about her disorder and child-rearing methods, but were unsure about where to go, who to consult, and what to do for her. Our trouble was so real, but there was nothing we could do for her then. (Woman, 41 years old)
Current Issues (Stage of Confrontation and Improvement)
The issues in this stage were classified into 177 data points, eight subcategories, and three categories. All participants reported that they had changed their way of relating to their children after the diagnosis and that they now respected their children’s identity and watched over them to promote their future development and independence.
Confronting DDs and positive coping
This category comprises the subcategories of “understanding of the disability and acceptance of the child,” “acquisition of a sense of self-efficacy,” and “adopting a positive stance while remaining aware of the realities.” Participants reflected on their experience of childcare and confrontation with DDs after their child was diagnosed and spoke about themselves and their children from a more recent perspective:
We were given a booklet about DDs by the doctor at my son’s hospital. I realized that “Ah, it’s not my son that has been making things so difficult for me, but his illness” (cries). Since then, my way of thinking has kind of shifted, so that I think…it’s not just me, this illness has been making life difficult for my son as well. So, I resolved to learn everything I could about this illness, and try to make things even just a little easier for my son. I found some information online, started going to a club for DD parents that some other mothers told me about, and began listening to stories about other people’s childcare experiences. Since I now know a lot more about DDs than I did before, I don’t know if it’s my attitude towards my son that has naturally changed, but I’ve stopped scolding him blindly. Even at this age, I feel like every day is a chance to learn something new, every day a chance to put something into practice. (Woman, 36 years old)
I’m a single mother of a daughter with DD. I work during the day, while she stays home and refuses to go to school. My daughter’s refusal to go to school…emotionally, that’s pretty tough for me. I’ve done everything I can to get her to go to school. Every day, I ask her “Why don’t you go?” I’ve met homeroom teacher and the principal for discussion a number of times. I’ve even sent her to an alternative “free school.” But nothing’s changed. It is what it is. So…I guess, lately I’ve been asking her to do the housework; Washing, cooking, and cleaning…of course it’s up to her. I don’t force her. There are a few days when I get back home at night and she hasn’t done anything. Still, even expecting that this is the reality, I’d like to make some headway, if only a little. (Woman, 35 years old)
Unity and empowerment in the family
This category comprises the subcategories of “unity of the family,” “empowerment of the family,” and “habituation to the ways of treating the child in the family.” Here, participants discussed relationships among family members after their child’s diagnosis. Most participants reported a change in their family members’ behavior and increasing unity. They were also happy when members shared their burdens and information and recognized the characteristics of the child. A few mentioned examples of tensions that arose among family members with regard to attitudes toward the child:
My husband was busy with work, as always, and the evening after our son was diagnosed, he started asking how this had happened. My husband was pressing me for the particulars of what the doctor had told me, and when I became flustered and blurted “Well if you’d been there with me…,” he surprised me by asking “So when’s the next appointment” and going to look for his diary. I remember having the vivid realization that my husband had changed. (Woman, 36 years old)
My husband’s not a very sociable person. However, when I mentioned that “taking part in our local DD Parents’ Society would be good for both me and our son” during a casual conversation, he remembered, and if it coincided with one of his days off, he would drive us and even began participating in the activities himself. Our son was delighted to see his Papa taking part. (Woman, 40 years old)
When we go out now, we don’t just say “Ok, let’s go,” but rather put it like “The long hand (on the clock) is at the 3, and when it gets to the 6, we’ll go.” Since my husband and I started being thorough about giving our daughter warning and showing her the clock before any activity, her anxieties at home have reduced drastically. (Woman, 42 years old.)
Social advancement and social aspirations of the family unit
This category comprises the subcategories of “collaboration with the care staff and other caregivers” and “deficiency of habilitation information and resources.” Here, participants spoke of the family unit’s involvement in society as a family after the diagnosis. After the diagnosis, families began actively seeking out social interactions with people and settings where the child’s problematic behavior would be accepted. Furthermore, participants expressed a desire for community social resources and support systems that would be helpful in remedying DDs, complaining that existing resources were insufficient:
I’m pretty outdoorsy; so lately, we’ve been meeting up fairly frequently with staff and friends from a parents’ association who understand that when my son acts up, it’s not his fault but rather due to the disease. Of course, the family comes along. Meeting those people in front of whom I do not mind letting my guard down, chatting, laughing, I feel recharged and channel that power back into childcare. (Woman, 38 years old);
After we gathered all the information we could as a couple about community-based rehabilitation, we finally identified accessible resources. Even so, these are still not enough and their quality is not satisfactory. We’re still looking for more information and resources so that our sons, their siblings, and ourselves as a family will be able to live better than we do now. (Woman, 44 years old)
In addition, this study gathered information on needs related to healthcare and general welfare. These needs were classified into 188 data points, 11 subcategories, and three categories.
This category comprises the subcategories “child-rearing information,” “habilitation information,” and “information exchange with other families.” The participants strived to acquire information from sources such as medical professionals, other parents raising children with DDs, the Internet, and other media. They also expressed a desire to communicate effectively regarding DDs with their doctors and schoolteachers:
I spent a while after the diagnosis looking for information about DDs, my child’s particular characteristics, and other relevant topics. But, before I got there, my thinking shifted to “All right, let’s try to find a remedy for this disability.” That’s when I started looking for this sort of community resource and information on places that would provide rehabilitation and treatment. (Woman, 41 years old)
I gave birth right after I arrived in the area, and our child ended up with DD. My husband gets home from work quite late, so I was always going out—I felt like I was risking neurosis by just staying at home in that quiet house alone with our son. When it came to going out, it was tough, but…I knew I was strangling myself—I just wanted to have some contact with someone, so we started going to a children’s center and a community center. I need other mothers to share information with, even if it’s just idle chitchat. (Woman, 35 years old)
I will ask the schoolteachers to meet our doctor so that they can get a better understanding of the disorder. The doctor’s medically backed and detailed explanations naturally hold more weight. In turn, the teacher could subsequently provide the doctor with firsthand information about what our child is like at school, and this is indeed reassuring for me. (Woman, 42 years old)
This category comprises the subcategories of consultation relating to “ways to support and relate to the child,” “medical visits,” “internal treatment,” “use of habilitation resources,” “failure to notice the surroundings,” and “enrolling in kindergartens and schools.” Although many participants recognized these various subcategories as “items of importance” for children’s families, for a number of reasons such as insecurity, indecision, and the feeling that these things could not be understood simply on the basis of their own or family experience, they felt a need to obtain suggestions through consultations with experts and authorities:
One day, I was asked by a public health nurse at a group check-up about my son’s day-to-day health situation. I suddenly just opened up about his difficulty in relating things and his sense of awkwardness compared with the kids around him. I was shocked when, after closely watching my son while listening to my story, she recommended that we visit a rehabilitation center. That was definitely the thing that got us to come in for a diagnosis. (Woman, 42 years old)
We’ve become especially careful about when our child starts and stops taking medicine. As parents, we check our child’s behavior at home, and we’ve asked the teachers to carefully watch our child during group activities. Of course, in the end, it’s up to the doctor to assess attitudes in and out of the home. (Man, 38 years old);
I have a 5-year-old daughter with DD, but it feels like only a year or two has passed. Whether she’ll be able to go to a normal elementary school or whether that’s too ambitious…my husband and I often talk about this stuff at home. I’m wondering if there isn’t a place where I can talk to someone about these kinds of things before enrolling her in school. (Woman, 34 years old)
Family support needs
This category comprises the subcategories of “total support involved with child-rearing,” “remedial interventions for children with disabilities,” “sibling emotional support,” and “support and education for parents.” Participants expressed a desire for parents, children with disabilities, siblings, and other family members each to receive individual support, although, on the other hand, recognizing the family as a single living entity. They insisted that integrated support from experts and authorities from various fields, including rehabilitation, psychology, health, and education, was an essential necessity to encourage positive lifestyles among families raising children with disabilities:
Now, as a parent, I want to do as much as possible to find a remedy for my child’s disability before he starts going to school. I have been attending a variety of classes and courses—a few in this area and others far away. It’s not that I’m desperately and one-sidedly looking for other parents like myself, but rather, in terms of what I want, it would be really helpful if I could get something like a directory that said “Here are the available resources” listed by area and by requirement. But who would do that for me?…The local government? (Woman, 39 years old)
Actually, our son has DD, and requires much more care and attention than his older sister. However, of course, we love them both equally. And I feel…that’s exactly why it’s such a frustrating dilemma for us as parents. I feel sorry for requiring that his sister be patient with him. Now, there’s nothing more we can do about it, and I would be extremely grateful if we could receive some psychological support from a schoolteacher or have an early childhood educator look into our situation. (Woman, 38 years old)
I believe that parents’ participation in childcare programs for children with DDs would benefits not only the parents but also, in the long run, any siblings and the DD child. The same thing goes for remedial programs for children with DDs and approaches to their siblings. The effect ripples out to the entire family. That’s why I’d like the experts to take a holistic approach to the family so they can provide support in an integrated manner. (Man, 44 years old.)
This study identified six issues, including three prediagnosis and three postdiagnosis issues, and three healthcare and welfare-related needs that were of priority importance to the participants. Although the nature of these issues and needs is vaguely defined, the following offers suggestions on potentially effective remediation measures.
First Issues (Stage of Confusion)
We identified the caregiver’s distress, family conflicts, and social isolation as a family. The presence of a child with DD significantly affected the family members. Peters and Jackson (2009) reported that the distress caused by the child’s problematic behavior and the daily experiences of the family members, especially the mother, seemed to be stressful, demanding, and marginalizing. All family members, including the siblings and grandparents, struggled to accept the DD. According to Fisman and Wolf (1991), unlike conditions of physical disability, which has visible manifestations, the invisible disability of an autistic child and frequent delays in diagnosis contribute to the mother’s self-doubt about parental competence and to the risks of emotional and behavioral problems in the siblings. We feel that understanding the experiences and feelings of people who live with children with DD is crucial to provide support to the entire family.
This study showed that, although parents required DD child-rearing information from the first or second year after birth, they had to endure the difficulties of raising the child unaided for several years. According to materials for one Japanese prefecture (Aichi Support Center for Persons with Developmental Disorders, Japan, 2006), the increased availability of information on DDs in recent years has been accompanied by parents becoming aware of their child’s symptoms from an earlier age and by an increase in the number of consultation visits. However, waiting periods for diagnosis have grown longer because of the small number of DD experts and DD specialist medical organizations.
The longstanding and widespread absence of local information, resources, and services on childrearing appears to have given rise to a sense of hopelessness among mothers. Scarborough, Lloyd, and Barth (2009) reported that this sense of hopelessness was closely tied not only to family confusion over caring for their child but also to the maltreatment of children with DDs. To resolve these issues, a local care team composed of a primary care physician, psychologist, teacher, school counselor, child psychiatrist, and sometimes, a pediatric neurologist is required. This study suggests that, in addition to screening children for disabilities from the perspective of whether support was necessary, it is necessary to create municipal systems that are able to provide developmental support for children from the age of 1 year and child-rearing support for parents and families. It is desirable to have some kind of local facility such as a health center where daily consultation is available on matters related to bringing up children with DDs and the troubled behavior common to children at this age. It is also important for training to be available for developing the expertise of public health nurses with whom consultations will be held, and some guarantees should be provided regarding the hours available for this consultation. Saying only “let’s see how things go” without offering specific advice or support does little to assuage parental anxieties. Rather, a continuous follow-up system is required that involves home visits, support, and the provision of specific advice. In Japan, as described above, local governments must act as quickly as possible to establish systems that work to provide both developmental support and child-rearing support to effectively resolve parental frustration and anxieties.
In addition, it is important to meet parents’ consultation needs, as they evolve with life-stage transitions such as enrollment in nursery school, kindergarten, and elementary school. In this study, a number of cases were reported in which transitions were made to nursery school, kindergarten, and elementary school without the provision of adequate support. Participants spoke of their children being confused by changes in the environment, struggles on the part of the schools and kindergartens to accommodate the children, and how these issues wore on parents. To ensure a smooth transition, there is a need for parents to be able to receive consultation in the community for mechanisms, obtain support books that convey children’s information, facilitate their child’s familiarization with the school or kindergarten environment, and collaborate with other parents and the educational institutions.
Current Issues (Stage of Confrontation and Improvement)
We found that not only did main caregivers change their way of relating to their children by adopting greater respect for their child’s identity but also family members shared experiences and practices in rearing children with DD. Regardless of difficulties, the participants seem to have found that their confrontation with children with DD led to their discovery of their child’s identity, to self-efficacy, and to family empowerment. Koren, DeChillo, and Friesen (1992) reported that parents assumed the role of “coordinator” and “advocate” by negotiating with healthcare professionals, education staff, and local administrators to ensure a good living environment for their children. The parents seemed to play several roles such as being a safety net for their children, a backup planner, and a negotiator for professional staff and administration simultaneously. They also participated in the local community by locating and participating in local mothers’ associations and closely collaborating with other families. These actions proactively improve the situation at this stage. Moreover, these consistent accommodations by family members to rise to unity and empowerment in the family have been reported by participants to have positive outcomes for the promotion of their child’s development, including a significant decline in cases of panic. Saito (2011) reported that the problematic behavior of children decreased when parents and medical staff adopted a consistent and coordinated approach.
During this stage, we assume that children spend most of their time either in school or at home. With regard to the items most frequently mentioned by participants such as children becoming “emotionally unstable” or “panicked” at home, it seemed from the data that these were reflections of stresses at school. Myers (2007) highlighted the importance of schoolteachers effectively addressing the difficulties faced by children with DDs in their studies and school life. Most participants in this study complained about schoolteachers being ignorant about DDs. Participants also related cases in which, because homeroom teachers do not possess adequate knowledge or understanding about the DDs, they are unable to respond appropriately to children on the verge of school refusal and of miscommunication with parents. It has been suggested that rebuking received from a teacher increases the risk in children with DD of additional secondary disabilities such as a decreased sense of self-worth, social anxiety, refusal to attend school, and behavioral disorders (Fujii et al., 2012).
Participants mentioned that the personalities and behaviors of teachers had a direct influence on their child’s QOL. Thus, we emphasize that understanding the suffering of children with DDs may positively impact the relationship between teachers and families. Furthermore, administration and healthcare professionals must do what is best under these circumstances for the “well-living” of the child when teachers and families seek help.
On the other hand, there were also cases in which parents became aware of a child’s disability when it was pointed out by a homeroom teacher in the first year of elementary school. It is important that teachers be able to recognize the presence of DDs at an early stage before symptoms deteriorate and secondary disabilities take hold. In such cases, there is a desire that the promotion of special needs education become the basis for measures taken and that homeroom teachers acquire an understanding of developmental disorders and the skill to deal with them. In addition, because trouble occurs more easily in group situations, it is even more important to educate and provide information to other students and parents. In such cases, it is crucial for parents to collaborate with the homeroom teacher, other school authorities, and other parents. It is also necessary that mechanisms be created to ensure the proper transmission and application of information collected by predecessors when classes are passed from one teacher to another.
In addition, this stage is a period that sees significant positive progress in the social connectedness of the family unit, with families beginning to proactively interact with people and groups who make allowances for their child’s DD-related symptoms. Participants spoke of cases in which, through the progression of the family unit’s social advancement, not only the primary caregiver but also the spouse have taken on the role of “coordinator” and “advocate.” On the one hand, Hsieh et al. (2013) reported that children with unclassified developmental delays had a lower QOL and health status and that their condition had greater impact on the family than children with typical development. Schuntermann (2009) recommended that siblings should be continuously monitored because growing up with a developmentally challenged brother or sister presents siblings with distinct psychological challenges. With these things in mind, there is a need for the patient and continuous provision of follow-ups and assessments without necessarily being optimistic about the social adjustment of the family as a whole.
Finally, many participants emphasized the lack of support systems and community social resources available for parental child-rearing support and sibling support and for remedying the symptoms of DD. Thus, there is a need to open rehabilitation centers in health centers that provide a supportive environment for DD families, child-rearing consultation services, and sibling support services.
The needs data obtained in this study covered both stages and three categories of needs: information needs, consultation needs, and family support needs. These three needs were highlighted in a study of parents who were raising children with severe motor and intellectual disabilities at home (Wakimizu & Fujioka, 2011).
This study clearly found that the parents of children diagnosed with DD, in particular, actively sought information locally on disabilities and other topics such as “child-rearing information,” “habilitation information,” and “information exchange with other families.” In addition, the collected information revealed that parents raising children who had not yet been diagnosed with DD were isolated from the local community and lacked adequate access to information. This lack of adequate child-rearing information exacerbated family discord and the uncertainties of parenting. Therefore, in addition to creating the abovementioned support centers, it is important to develop measures to reach out and help parents of children with undiagnosed DD. Accomplishing this will require more than the current system of regular mass screening for infants. As described above, it is desirable that systems be implemented that will enable parents to receive regular child-rearing counseling at places such as local community health centers, where services go beyond disability screening to include child-rearing support assessments. In this way, municipal systems will be better enabled to provide developmental support to children from the earliest ages and to adequately address the support needs of parents and families.
With regard to medical consultation, many participants perceived a desire or need to take their child to the hospital after consulting an expert or medical authority. After diagnosis, all subcategories other than consultation and attitude toward the child were considered by parents to be “consultation needs,” necessary to chart a path both inside and outside the family unit for children with DDs. To meet these needs, it is necessary to review the current consultation systems and functions in each of the various departments of local governments, medical institutions, educational institutions, and welfare organizations and promote the expansion of consultation systems and functions while accounting for the introduction of remote tools such as the telephone, e-mail, and fax with a view to ensure the qualitative improvement and availability of personnel. On the other hand, rather than a system that simply waits for incoming consultation, we should consider a follow-up style that elicits topics for consultation in regular or long-term visits for families that have been assessed as high risk.
Family support needs
Information collected by this study suggests the need for individual support for individual family members, including siblings and parents, in addition to holistic support for the entire family. Data pertaining to family support needs were extracted evenly from the two separate stages, and it was clear that these needs were felt consistently by all families of children with DD during both the prediagnosis and diagnosis stages. Perceived support needs were highest among the many parents who perceived difficulties bringing up children during the period between infancy and lower elementary school age (Aichi Support Center for Persons with Developmental Disorders, Japan, 2006). Inada (2010) reported that the presence of the mother to provide support is an important element in increasing the QOL of an infant over time. Thus, there is a need to develop effective support programs to maintain the parenting motivation of mothers, to maintain the mother’s QOL, and to eliminate the stresses and pressures felt by the mother during the early period of child-rearing. Recently, in Japan, group interventions targeting parents of children with DD have been attempted as part of parental support programs (Wakimizu, Fujioka, Iejima, & Miyamoto, 2014). In the community, group-based support such as parental training provided to families with children with DD is a beneficial addition to the individualized support offered by medical institutions and local governments. Therefore, it is necessary that Japan develops family support programs (FSPs) and establishes an FSP framework related to healthcare and welfare to ensure that children with DD, their parents, and their families receive regular, long-term support.
Limitations and Future Directions
This study was subject to several limitations that potentially limit the generalizability of findings. First, only a small number (25) of the 55 parents approached agreed to participate in this research, which may introduce a selection bias. We also excluded from consideration those parents whose schedule conflicted with the date chosen for interviews, which had been set in advance. Second, participants were recruited from two hospitals that had high proportions of children being treated in the internal medicine department, which indicates that participants may have had disabilities that were relatively severe. These limitations make it difficult to generalize the results of the study to the broader population of families with children with DD.
This is the first study in Japan to conduct a detailed examination of the issues and needs faced by parents rearing children with DD. The authors expect to further study the development of FSPs and to establish an FSP framework that pertains to healthcare and welfare.
FGIs were used to identify six categories of issues perceived as significant by the parents of children with DD. Furthermore, information needs, consultation needs, and family support needs were identified as the most critical needs of parents of children with DD in Japan.
This study was funded by the Ministry of Education, Culture, Sports, Science and Technology, Japan (Grant-in-Aid for Young Scientists (A), 2011–2013, No. 23689089).
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