Subjects were family members living at home with children with SMID in the suburbs of the Tokyo metropolitan area (primary caregivers, their spouses, and one sibling over age twelve). Subjects were recruited from users of the services of two specialized institutions in Tokyo and three specialized institutions in two prefectures near Tokyo. The subjects were selected on the basis of the following criteria:

- The person is in a stable condition both physically and mentally.

- The person’s child or sibling suffers severe motor and intellectual disabilities, has an IQ of 35 or below, and is unable to maintain a standing position.

Researchers provided the subjects with a written explanation of the survey content and methods in easily understandable language. Upon obtaining the subjects’ consent for participation, researchers traveled to their homes or to private locations designated by the subjects and conducted separate interviews with each family member. The survey period was from September 2013 to August 2014.

Lasting for approximately one hour, semi-structured interviews on life with a child with SMID were conducted with each subject, focusing on “one’s personal role recognized within the family” and “thoughts about other family members.” Interviews were recorded with the subjects’ approval, using an IC recorder.

While requesting subjects for survey participation, we carefully explained that participation was voluntary, that there would be no disadvantages in not participating, that participation could be stopped at any time, and that their privacy would be protected when researchers presented survey content. We then received consent. This study was conducted with approval from the ethics committees of the researchers’ universities.

We interviewed 25 families rearing children with SMID. Of the 25 families, 17 included siblings of a child with SMID, and for this survey, 11 siblings over age 12 were interviewed. Three siblings were younger than the children with SMID, and eight were older. The average number of people living in the same household, including the child, was 5.2, and six families had grandparents living with them. Of the 25 mothers, 24 were primary caregivers for their children with SMID. One father resigned his employment to become the primary caregiver and dedicate himself to the care of his child with SMID.

The average age of the children with SMID being reared by the subject families was 10.2 ± 5.5 years (mean ± standard deviation). The children’s disabilities included cerebral palsy and sequelae of cerebropathy.

The average age of the subject mothers was 41.2 ± 5.9 years (mean ± standard deviation), that of the subject fathers was 42.3 ± 7.0 years, and that of the subject siblings was 15.5 ± 2.3 years. The average interview length was 65.5 (31 - 88) min for mothers, 49.5 (28 - 80) min for fathers, and 32.7 (16 - 46) min for siblings (mean, range) (Table 1).

Five categories were confirmed for the mothers’ personal roles: taking on the main role of providing necessary care to the child with SMID; gathering information about opportunities for the child with SMID to have doctor visits, medical treatments, rehabilitation, and education; making adjustments for the best possible environment for the child with SMID; adjusting the family’s life and understanding the state of the whole family, including the spouse and siblings; and trying not to let the future of the sibling(s) be limited.

Mothers took on the majority of the necessary care for children with SMID and gathered information from fellow members of parent groups, medical personnel, and school personnel on opportunities for doctor visits, medical treatments, rehabilitation, and education. While taking responsibility for precise adjustments to the care and treatment environment of the child with SMID, they were also responsible for understanding the state of the whole family, including the spouse and siblings, and adjusting the family’s life. They also remained conscious of participating in the sibling’s school events, preserving time to spend alone with the sibling, and trying not to let the sibling’s daily life and psychological aspect deteriorate or let the sibling’s future be limited as a result of having a child with SMID in the family.

The mothers’ remarks are in italics below. Parentheses indicate interviewer supplements or author revisions.

The children’s short-term residence facilities were only in region M and region T, and those are far, so eventually we just thought let’s support each other somehow and finance/take care of this as a family. Even though, for the future, it would be ideal to have somewhere close by where we could immediately ask for help if something happened (to either the child or a family member) because Grandma is elderly, and we are also getting on in years. If something happens and we can’t watch him, we can put him in (the facility), or if (we put him in) his physical condition worsened, it’d be very difficult, so in preparation, we are thinking that we should start putting him in for short periods of time little by little so he becomes accustomed to it, even though it is far. (ID18).

I am glad for all of the services we are currently receiving. The paper diaper distribution system is very helpful,

OT: occupational therapy, PT: physical therapy, ST: speech therapist, CMV: cytomegalovirus.

and I looked for and found a bathing service not only during the day but also at night, and that is also very helpful. And even though it is set at 5 o’clock, they are flexible, so I can say, “Next week we have some plans, so let’s make it 6 o’clock.” (ID19)

Of course, I try to make time to spend just with my daughter [younger sister of the child with SMID]. She has weekly practice, so during those times, I drop her older brother off at the facility, and that’s when we talk with just the two of us or go shopping together. (ID8)

Seven categories of fathers’ confirmed roles were given: division of roles with the mother for housework and (the child’s) home care; work adjustments; counseling the mother; coordination of family vacations; relationships with service providers; negotiations with government agencies; and legal (court) negotiations.

Most fathers were taking care of the child before work, after work, and on days off; in other words, any time that did not interfere with their work. They also discussed the child’s medical treatment and care policies with the mother. There were also fathers who planned family vacations to coordinate with the child’s short-term facility stays to release family stress.

In some cases, fathers negotiated for nursery school and kindergarten enrollment and for public subsidies for services, such as visiting bathing services and home care equipment like wheelchairs and inhalers. They made appeals about their families’ predicament and elicited responses from the government. In one case, a child suffered permanent injury from a car accident, and the father fought in court for compensation to support the child’s future care.

I change the first diaper after [he] wakes up, and before going to work, I do the urethral catheterization and injection. When I get home from work, I start the injection between nine-thirty and ten o’clock, and that takes a little under two hours. Then I give [him] his medicine and change [his] diaper [After that it’s bedtime.]. My wife isn’t as physically strong as I am, so I try to get him to bed as early as possible. She works hard during the day because I am away at work. I try to do what I can while I am at home. (ID7)

It’s a little unfair to A [child’s name], but every year we four other family members go on vacation when we have A in the facility. In the past, it has generally been beach vacations. We try to go once a year. If we didn’t take vacations without A, I think the other family members would all fall apart. (ID12)

Five categories of siblings’ confirmed roles were given: help caring for the child, be a normal sibling, do not cause trouble for parents, support the mother, and take on future care of the child with SMID.

Differences were found in content and degree of siblings’ narratives; however, they all had the experience of helping care for the child from a very young age. Specifically, there was a wide range of care, from watching the child by his/her bedside to very difficult care, such as assistance with meals, moving the child, and replacing suctions and cannulas. These were spoken of as “natural because I am the sibling” and “the same as a regular sibling would do” to help care for the child.

The siblings often observed and understood that their parents, particularly the mother, were busy taking care of the child with SMID. For example, when the physical condition of the child with SMID was poor and the parents were busy preparing to go to the hospital, the siblings were mindful of trying not to talk too much, preparing their own meals, and trying not to cause trouble for the parents. They recognized their role as supporting the mother, confirmed by two thoughts: wanting to reduce the mother’s current burden and helping when the mother, due to old age, will be unable to care for the child with SMID.

They believed that it would be their responsibility to care for the child with SMID in the future, and there were siblings who believed they would take on the care of the child with SMID when they became adults. There were also siblings who thought they wanted to become doctors specializing in treating children with SMID.

I have helped with meal assistance and moving the child since I was very young. In our family, basically, whoever is free will get [the child] out of bed, change the diaper, set him/her in the wheelchair and feed him/her. That’s been our policy since the beginning. (ID6)

When my parents are busy taking care of my sibling… I try to not talk much and not cause any trouble. (ID1, ID6)

In the future, when my mother’s body has grown old and stiff, I think I will have to do all of the home care for the child with SMID, so it will be easier for me if I learn a certain level [of care procedures] now, rather than starting then. (ID20)

I would like to work together with my two younger brothers to continue taking care of my older brother. That’s why I’ve thought since I was small that I would like to become a doctor. (ID1)

On the descriptive section, parents clearly and concretely wrote about various concerns, anxieties, and needs for support. Their descriptions were placed into subcategories (Table 2).

We divided descriptions of their concerns into 5 subcategories; SMID child’s symptoms, parents’ work, facilities, social activity, and siblings. One primary caregiver wrote the following about her child’s symptoms, “I’m concerned that new symptoms might emerge as she grows and develops. Last year, she had a kidney stone and bloody urine for over 6 months. There was nothing that eased my concern about this problem”.

We divided parents’ descriptions of their anxieties into 5 subcategories; SMID child’s life, insufficient support, finances, parents’ health, and siblings. Many parents had similar comments about their children’s life, such as, “I have anxiety about her life after she graduates from the special school” and “I can’t imagine the future after she graduates from the special school”.

We found 7 subcategories related to the need for support; support in facilities, visiting services, coordination, support to allow caregivers to pursue personal goals, advising, support for siblings, and financial support. Most parents wrote about the need for support in facilities, such as, “I hope that there is a facility that can provide hospitable care for my child”, “I need a service that can provide care for my child after school and during long school vacations”, and “I want facilities that provide convenient respite care services”.

Siblings wrote less than their parents because they did not perform as much of the care for the SMID child as their parents did. But one sibling, who was 14 years old, wrote about his anxieties, “I have to choose my career with one point in mind, and that’s to be able to continue caring for her (the SMID child)”. Another boy, 12 years old, wrote, “After my parents die, I’m worried about whether or not we (siblings) can take care of him (the SMID child)” (Table 3).

Mothers hoped that their spouses, the fathers, would assume as much responsibility for care as they could. However, when the father’s time was greatly constricted due to a busy work schedule, the mothers experienced some situations in which they felt asking for the father’s help was unavoidable, particularly for difficult, fixed

occasions such as doctor’s visits for the child with SMID and the siblings’ school events.

For the siblings, on the other hand, there were cases in which mothers did not want the other children to perform home care, cases in which they thought it would be nice if they took on some care responsibilities if they had free time and if they wanted to, and cases in which they wanted them to take on as much care responsibility as they could. Regardless, all mothers felt that sufficiently participating in school and lessons and leading a fulfilling daily life were priorities. They did not want the existence of the child with SMID to limit the siblings’ future choices or to cause an excessive burden of care.

Father usually wakes up early and goes to bed late, so he most often comes home after [the family] has gone to bed. But visits to the treatment center are very difficult, so he goes with me then. Those times, and when our older or younger [siblings] have big events, we feel very sad, so he takes time off work. Those are the only times that must be flexible. [Do you, the mother, primarily do the entire home care for the child?] Yes, mostly. (ID12)

I don’t think of making the siblings perform home care. Although when my husband retires, I’d like him to do more. (ID18)

The child does need medical care, but usually I just ask his/her older sister to watch him/her for just a moment. Then I do shopping nearby. The older sister can do the suction and take out the feeding tube when it’s finished. I consider it lucky when she’s home, so I do ask her. (ID15)

On holidays, when the older sister is home, she will do as much of the home care for the child as possible. I ask her very naturally, and I always think that I should not be the only one who can do the home care. It would be a problem if something happened to me, and there was no one to step in. (ID20)

While the fathers understood that the mothers’ care practices for the child were the center of the care, they believed that they could not place all care responsibilities on the mother and that they themselves had to support the mother.

Although in some cases, the father considered the sibling to be another family member involved in the child’s care, there were also cases in which the father believed the parents should take all responsibility for the care of the child with SMID because the siblings’ had their own lives.

Mother pushes herself so hard, and she’s a hard worker. She doesn’t have time to relax. So, I do think I have to follow. (ID8)

I think the younger sisters will be able to do a lot of the care once they enter elementary school. For now, under the watch of a parent, we are training them how to do some care, such as suction and other exchanges. (ID4)

I tell the sibling everything about the process of having a disabled child. But I do not want him/her to take part in the caring process because it will crush his/her life. The parents [will do] the nursing care. I would like to find a system so that the sibling will not have to do all the work in the future. (ID17)

While siblings were busy with daily care for the child with SMID, they were also grateful to their mothers for the care the mothers gave their sibling. The siblings spoke of their fathers as being important persons in supporting the entire family. Additionally, when the child with SMID’s physical condition was poor and the child had to be hospitalized, the siblings said they were extremely thankful for their grandparents or relatives who were by their side in place of their mother. They considered their grandparents and relatives’ presence an important part of their own healthy life, growth, and development.

In cases with extended families, grandparents became daily playmates to the child with SMID and were in charge of household chores, such as preparing meals. Siblings recognized this as being connected to support for their mother.

Most siblings objectively understood each family member’s role, and while they were grateful to each, they also understood the need for support from external resources.

I have nothing but gratitude for Mother, who not only takes care of my younger [disabled] brother but also takes care of everything, housework, everything to do with the house/family, and even my college things. (ID20)

When my mother has to be at the hospital all day with my [disabled] sibling, and I am lonely, my grandmother comes over and cooks and does the laundry for me. It’s really great. There have been countless times like that, but somehow we overcome them and are here now. My grandmother has a very significant presence in my life. (ID18)

When a home-helper is here to care for our severely disabled child, my mother and grandmother have more free time. I’d like it if we could have more of those people. (ID21) (Figure 1)