ISSN 2185-2227

Empowerment of families rearing children
with severe motor and intellectual disabilities at home
Hiroshi Fujioka, Rie Wakimizu, Yoshiko Okubo, Akira Yoneyama

在宅で重症心身障害児を療育する家族のエンパワメントプロセス
藤岡寛，涌水理恵，大久保嘉子，米山明

Reprinted from
Medical and Health Science Research, Volume 5, pp. 41–53
March 2014

医療保健学研究５号：41-53頁（2014）
ISSN 2185-2227

Original Article

Empowerment of families rearing children
with severe motor and intellectual disabilities at home
Hiroshi Fujioka1, Rie Wakimizu2, Yoshiko Okubo3, Akira Yoneyama3
1
2

Department of Nursing, Faculty of Health Science, Tsukuba International University

Division of Health Innovation and Nursing, Faculty of Medicine, University of Tsukuba
3

National Rehabilitation Center for Children with Disabilities────────────────────────────────────────────
Abstract
To examine the empowerment of families rearing children with severe motor and intellectual disabilities, we
conducted semi-structured interviews with the main caregivers in 19 families and used the modiﬁed
grounded theory approach to analyze the data qualitatively. Through this analysis, a process was observed
whereby the main caregivers, who had initially felt isolated during child-rearing, gained personal inner
power through exchanges with others (mainly from a group of other parents who were also rearing children
with disabilities), started approaching others (such as service providers and administrative staff), and ﬁnallyestablished their own rearing systems. This process had a feedback effect of replenishing the inner power ofindividual caregivers and enabled them to continue with appropriate child-rearing. This empowerment
process in the main caregivers suggested that practical care support can be provided in a speciﬁc direction topromote the empowerment of families who rear children with severe motor and intellectual disabilities.
Examples of such support are encouraging parents to participate in groups with other parents who arerearing children with disabilities, providing advice on daily living, including management of the children’s
physical conditions, and approaching other family members instead of the main caregiver to coordinate theroles of family members. (Med Health Sci Res TIU 5: 41–53 / Accepted 21 Nov, 2013)
Keyword：Children with disabilities, Empowerment, Family, Home care, Qualitative research────────────────────────────────────────────Introduction─────────────────────
Corresponding author: Hiroshi Fujioka
Department of Nursing, Faculty of Health Science,
Tsukuba International University,
6-8-33, Manabe Tsuchiura, Ibaraki 300-0051, Japan.
Phone / Fax: +81–29–883–6011
e-mail: h-fujioka@tius.ac.jp

Starting in the 1960s in Japan, the administration
had encouraged the admission of children withsevere motor and intellectual disabilities (SMID) to
specialized institutions to provide rearing including
whole-body management in order to support thesechildren and their families (Ezoe, 2006). However,42
Hiroshi Fujioka et al／医療保健学研究

after the concept of normalization spread following

５号：41-53頁（2014）a more comprehensive system.

the International Year of Disabled Persons in 1981,

Here, we introduce the concept of “empowerment.”

the need for support centered on living at home has

The term empowerment in health and welfare

come to be advocated for those with SMID (Hori,science refers to “a process of gaining control over2006). Furthermore, in recent years, as a result of

one’s life and inﬂuencing the organizational andchanges in medical and welfare policy to shorten

societal structures in which one lives” (Segal et al,hospital stays, there has been a shift toward more of1995). In Japan, only a small number of studies havethese children being based at home from an early

been made on the empowerment of families rearing

age. Of the approximately 40,000 children withchildren with disabilities, and these studies have

SMID in Japan, about 70% live at home (Okada,

been limited to those focusing on just a single case2006). Encouraged by advances in medical care andor dealing with cases of participation in self-help

technology for these children, long-term care andgroups (Hayashi et al, 2002 Ito et al, 2009). In

securing of quality of life (QOL) at home haveparticular, almost none has studied the empowerment

become possible (Origuchi et al, 2008).

of families rearing children with SMID. In this light,

On the other hand, however, rearing of a child

we aimed to study and clarify qualitatively thewith SMID at home imposes a great burden on theprocess of empowerment of families (in this case,family – and the main caregiver in particular –main caregivers) rearing children with SMID.

because the child’s life and QOL will not be
maintained without daily care by the family,
including medical care (Kuno et al, 2006; Sugimoto

Methods

et al, 2009).
For this reason, to support these families,
services are provided by various specialized

Subjects─────

institutions in accordance with the relevant

Subjects were recruited from users of the short-

regulations centering on the Services and Support

term admission services of a specialized institution

for Persons with Disabilities Act. These services

in Tokyo and those of a support institute in a

include visits from carers and helpers and short-

prefecture near Tokyo. Subjects were selected on theterm admission for respite services, although theybasis of the following criteria:

do not always meet the families’ needs. Although
efforts are being made to determine the needs offamilies (in the form of investigations into families’
levels of satisfaction with services) and to evaluate– The individual is a main caregiver of a childwith disabilities.
– The individual is in a stable condition, both
physically and mentally.

the mental states of caregivers (e.g. feelings of– The individual’s child suffers severe motor andburden and self-efﬁcacy) (Kuno et al, 2006;

intellectual disabilities, has an intelligence

Tanigawa and Nakamura, 2008 Yamamoto, 2009),

quotient ≤35, and is unable to maintain athese efforts are yet to have direct effects such as

standing position.

revision of existing services and regulations. To– The individual’s child is ≥5 years old and ≤18

evaluate the situations in which the main caregivers

years old as of the time of enrolment in theand families are placed and provide services

study.

accordingly, it is necessary to view the families,
their services, and the regulations as components of43
Hiroshi Fujioka et al／医療保健学研究

Procedure─────

５号：41-53頁（2014）

Analysis──────The chief nurse of the specialized institution in

We adopted the modiﬁed grounded theory

Tokyo and the person in charge at the support

approach (M-GTA) to perform qualitative andinstitution near Tokyo briefed prospective subjects

inductive analysis of the collected data (Kinoshita,

who met the criteria described above about the2003).

research and asked their permission to give theirAnalytical procedures based on the M-GTA cantelephone numbers for later contact by researchbe outlined as follows. We had a closer look at

staff. Those who agreed to their numbers being

certain parts of the collected data, interpreted theirused were called by research staff at a later date,meaning, and formulated a deﬁnition. On the basis

asked for their cooperation, and given a date for anof the deﬁnition, and through comparison withinterview.

other, similar cases, as well as with different cases,

We conducted semi-structured interviews with

we worked out concepts that could explain a certain

subjects in accordance with an interview guide. The

range of cases using the deﬁnition. While further

interview guide was prepared on the basis of theelaborating these concepts in light of the collected

empowerment model by Koren et al. (1992). Thisdata, we examined the relationships among themodel recognizes empowerment at three levels:

concepts, and also elicited categories and processes

family; services; and community. Typical questions

encompassing more than one of these concepts.

in the interview guide were: “As a rearer of your

When no further concepts had been worked out

child, how do you see the child with disabilities andwithin the range of the collected data, we consideredinteract with him/her?”; “Can you voice yourthat we had reached a theoretical saturation point.

opinions and ideas to professionals of welfare
services? Do they value you opinions and ideas?”;and “Can you voice your opinions and ideas to the

Ethical considerations────────────administration concerning current systems andBefore the interviews, we assured all subjects,

relevant policies? Do you think that voicing yourboth verbally and in writing, that their free will

opinions and ideas to the administration will affectwould be respected. They were always allowed to

the ways in which systems and policies are made?”

withdraw their statements, refusal of cooperation

Interviews were conducted individually for about

would not disadvantage them in continuing withan hour and in a place where privacy was ensured

current medical treatment and care, and their(e.g., a private room). Conversations in theinformation would be treated conﬁdentially. We

interviews were recorded on an audio recorder after

ensured that all of these points were observed. We

consent from the subject had been obtained;

received the written consent of subjects to cooperate

recordings were subsequently transcribed verbatim

with the research before starting the interviews.

for data extraction. The data were collected in the
period from May 2009 to February 2010.

To avoid situations in which a subject would beforced into cooperating, we arranged for a

In conducting the research, we received

researcher who was free from direct involvement incontinuous supervision by support staff

the services used by the subject to ask forexperienced with children with SMID and theircooperation. We also assured subjects before thefamilies, in addition to experts in qualitativeinterviews that what was talked about during the

research.

interviews would not be repeated to the staff of the44
Hiroshi Fujioka et al／医療保健学研究

５号：41-53頁（2014）

institutions in a form in which the individuals could

with SMID being reared by the family was one. In

be identiﬁed.

the remaining family, two children had SMID.

The research was conducted with prior approval

Accordingly, the total number of children withof the ethics committee of the National Rehabilitation

SMID (hereafter called “child” or “children”) being

Center for Children with Disabilities and the Graduate

reared by the subject families was 20. The mean age

School of Comprehensive Human Sciences, Universityof the children was 10.7 ± 3.7 years (range, 5–18

of Tsukuba.

years). The children’s disabilities included cerebral
palsy and sequelae of cerebropathy; 17 of theconditions were congenital and three were acquired
as a result of events such as injury in a trafﬁcResults

accident. Other attributes of the children reared byCharacteristics of subjects──────────────

the subjects are shown in Table 1.

Among 20 families that were rearing children

As a result of the analysis, three categories werewith SMID and were introduced to us by theidentiﬁed in the process of empowerment of the

support institution, we interviewed 19. We could notmain caregivers rearing children with SMID:

interview one family because of the poor physical

Isolation in child rearing; Exchanges with others;condition of the subject. Mean (± standard

and Establishment of rearing system. Of these threedeviation) interview length was 65.8 ± 10.8 min

categories, a core category was identiﬁed:(range, 48–93 min).

Continuation of appropriate rearing. Categories andIn 17 of the 19 families, only the motherconcepts and their respective relationships are

participated in the interview as the main caregiver;shown in Figure 1. In the text and ﬁgure, [ ]in one family only the father participated, and inindicate subcategories, and “ ” indicate concepts.

one family both parents participated. The subjects
were in their 20s to their 40s.

Details of the respective categories and concepts
are as follows.

In 18 of the 19 families, the number of children

Table 1. Process of empowerment for families rearing children with SMID

45
Hiroshi Fujioka et al／医療保健学研究

５号：41-53頁（2014）

Figure 1. Process of empowerment of families rearing children with severe motor and intellectual disabilities

Isolation in child rearing───────────────children. For example:
I used to force my child to eat through her

In cases where subjects could not accept theirmouth, even though she choked. Although I

child’s disabilities, had excessive expectations, andthought that being forced to do such a thing

resorted to unreasonable coping styles, they wereevery day would cause a lot of suffering, I

also unable to accept support services for childstrongly believed then that my child would be

rearing. They could not obtain cooperation fromable to eat normally someday, and I could notother family members or utilize welfare services

think in any other way.

because of insufﬁcient quality or quantity of service

Subjects did not want other people to ﬁnd out

providers, nor could they obtain cooperation fromabout the differences between their children andthe people around them, partly because ofhealthy children. They disliked being asked about

insufﬁciency in the relevant legal systems. They

the differences and did not like being seen going towere therefore isolated in their child rearing.

facilities for children with disabilities. For example:
It was an enormous pain to be asked, “Why“Caregiver cannot accept the child’s disabilities”

can’t your child do what others can?” I didn’t

These subjects could not accept their children’s

want other people to see us going to a facility

disabilities and therefore could not think offor children with disabilities, so we used to lookanything other than investigating causes andoutside before we left home to conﬁrm that nocorrecting problems. For example:

one would see us. In that regard I was on

My child was normal at ﬁrst… why does hetenterhooks.

have disabilities now? When did he acquire his
disabilities?

“Caregiver cannot obtain cooperation from other

These subjects had unrealistic expectations thatfamily members”

their children could do what healthy children could

Even though these subjects could accept thedo, thus making unreasonable demands on theirdisabilities of their children, in some cases, they46
Hiroshi Fujioka et al／医療保健学研究

could not obtain appropriate support from other

５号：41-53頁（2014）

the child.

family members in child rearing, because the otherfamily members could not accept the child’s
disabilities. For example:“Caregiver cannot utilize welfare services”
The subjects felt awkward about people other

Although I was thinking about what was best

than family members coming into their homes.

for the child, in that she was disabled, it was

Because they could not accept the disabilities of

difﬁcult for the child’s grandparents, who could

their child, they also felt aversion to receiving

not help feeling ashamed of the fact that we

services. For example:

had a child with disabilities in our family. I felt

I disliked very much the fact that a helper, whopressured by this attitude.

was not a family member, came into my home. I

When the family had a member who needed caredisliked accepting help from other people and thein addition to their child, there were cases where

possibility that it would let other people know aboutfamily members could not participate in child

my child’s disabilities.

rearing because they had to care for the otherfamily member. For example:
The parents of my wife live in our neighborhood,

There were cases where the subjects could not
utilize welfare services because staff or facilities
were insufﬁcient. For example:

and my wife goes there to help them every day.

They often turn down our request for a short

My father-in-law developed health problems

stay, or they don’t accept the child for the entire

recently and has to be hospitalized on and off.

period we request. This is because the number

My wife is almost completely staying away fromof facilities that can provide short-stay services

caring for our child.

is far too small!

In one case, the family was engaged in a family

The subjects were in very difﬁcult life situations

business and all family members were too busy toand felt indignant about the insufﬁciency of theestablish a system to support the main caregiver inlegal system in relation to child-rearing support

child rearing. In this particular case, the parents ofservices and the attitudes of administrative staff.

the main caregiver could not visit the family to help,

They wished that a legal system that was morebecause they were hindered by the attitudes of othersuited to their actual conditions could be developed.

family members. For example:

For example:

Both my husband and his parents, who were

When I went to apply for a supportive device orliving with us, were too busy and were not thea wheelchair, I was told that I could apply for

type to take care of the children. My parents

them only once every two years, or, at worst,

could not visit us under these circumstances, so

only once in a lifetime. I felt very indignant

I had almost no support from other family

about that. The person in charge told me,members.

“Your child already had a wheelchair made for

In some cases, the subjects could not obtainher when she was born.”…“How can my child,support from other family members because of the

who is now 14 years old, use the wheelchair

type of medical care the child needed. For example:

that was made when she was a baby? In regard

The moment the child needed suction and tube

to support devices, I was told that there werefeeding, my parents said, “We can’t take carecases where an adult could receive a subsidy forof the child any longer.” My husband’s parents

a support device, whereas there was none forhad already been staying away from caring forchildren… does this mean that children do not

47
Hiroshi Fujioka et al／医療保健学研究

５号：41-53頁（2014）

have to walk? Don’t they have to be able toof coordinating the rhythm of my own daily life,walk?

I was able change my mental orientation. I
gradually came to see the disabilities as charac-

As seen in these cases, the subjects felt isolated
in their child rearing, both psychologically andsocially. For example:

teristics of my child.
“Sharing of information with others” promoted“Acquisition of policy in child rearing”. That is, theThere were times when I struggled to take care

subjects shared useful information on child rearing,of the child all by myself. I came to hatemainly through conversations with other parents,

everything and was psychologically destroyed. I

and came to establish their own policies of child

had no one to consult about child rearing andrearing, including approaches to service providers

no one gave me an answer, because I was all

and administrative staff. For example:

alone then. I was always at a loss and not

There was an occasion where I made a request

knowing what I should do next.

in relation to child rearing to administrative
staff and was turned down for policy reasons.

Exchanges with others────────────Afterwards, however, I received advice fromother mothers, such as “It would be good if you

Through exchanges with other people, thesay it this way,” or “You should assert yoursubjects gradually came to accept their children’s

opinion more strongly,” which was very useful.

disabilities and acquire their own policies on childrearing, which led to the acquisition of personal[Approaches to others]

inner power. This personal inner power made it“Approaches to service providers”

possible for the subjects to approach others

Thanks to the policies on child rearing they had

regarding better child rearing. The main targets of

newly acquired as a result of information sharing,

the subjects’ approaches were service providers andthe subjects exploited new and useful service

administrative staff.

facilities. For example:
I asked the doctor in charge to introduce us to[Acquisition of personal inner power]“Coordination of the rhythm of daily life” andthe best hospital in this prefecture. After that,
we moved to a nearby district in order to be“Sharing of feelings and experiences with others”

able to commute to that hospital.

promoted “Acceptance of disabilities”. That is, byWhen a service was insufﬁcient, the subjects

coordinating the rhythm of daily life, which

advocated improvement. For example:

includes child rearing and sharing feelings andIf a service provider says no to what they canexperiences with other parents who also had

improve, I continue to demand that they takechildren with disabilities (mainly at school), theaction to achieve improvement. When they takesubjects gradually came to accept their children’s

no action to improve what can be improved, Idisabilities and acquire mental stability. For

say so plainly.

example:When they obtained more useful information

After my child started commuting to daycare, I

from a service provider, they collaborated to utilizebegan to interact with more people. It was

it for child rearing. For example:

encouraging to talk with other mothers who

I ask home nurses, for example, before theyalso had children with disabilities. In the processattend a workshop on the respiratory system, to48
Hiroshi Fujioka et al／医療保健学研究

５号：41-53頁（2014）

let me know about any useful information theyfact that children with disabilities could commute

obtain. This way, they bring me the information

if accompanied by a nurse. Afterwards, thethey have learned, and then I ask the doctor orsystem was changed and now nurses underphysical therapist in charge whether or not we

exclusive contract with the daycare home cancan apply the information to my child’s case. I

provide the necessary care. In future, it will

can comprehensively examine, and decide on,

become easier for children like my own, who

the best care for my child by asking various

have tracheotomies, to commute to their daycare

people about it. In this way, I can be involved in

facilities. With the increasing proportions ofchild caring positively and convincingly.

children with severe disabilities, I suppose that

When the quality of a service was insufﬁcient or

staff will become accustomed to dealing witha problem occurred between the child and a service

these children, too.

provider, there were cases where the subjects

On the other hand, there were cases where thechanged the service provider they used. For

subjects could not help but give up on their

example:negotiations. For example:

When a certain application of medical care was

Although the administrative staff listens to us,

not improved after repeated requests, I declined

they have no other option but to comply withvisits by the helper.

the decisions made by their boss or the higherorganization.

“Approaches to administrative staff”
W hen applying for support allowances orsupportive devices, or when they were dissatisﬁed

Establishment of rearing system────────
───────────with the ongoing legal system relevant to a service,

Through exchanges with others, subjects

the subjects contacted and negotiated withacquired the personal inner power to approachadministrative staff until they obtained satisfactory

others, facilitating effective forms of child-rearing

results. For example:

support by family members, service providers, andI present my request plainly. If it is not

the administration, thus establishing a rearing

accepted, I negotiate by myself until I am given

system centered on the children and subjects.

a satisfactory reason.
As an option for negotiation, the subjects
considered submitting requests as a group.

“Caregiver can obtain cooperation from other family
members”

They are not pressured at all by our individual

All family members became closely united

approach. Therefore, we have to advocate ouraround the child to participate in child rearing in arequests positively as a group. In any case, they

cooperative manner. For example:

don’t understand our situations if we don’t

After the child was born, all the family members

voice them.

seemed to be drawn to her as if they wereAs a result of negotiation, there were cases where

drawn to a magnet. We often ﬁnd ourselves

subjects could apply for allowances or othergathering around her. Our daily lives revolve

necessities through proper channels, or where thearound the child. If my husband comes homerelevant legal system was improved. For example:

earlier than usual, he ﬁxes a meal. Since I

After my child started commuting to daycare

scarcely have time for shopping, the child’s

accompanied by a nurse, it became an accepted

older sister or my husband does it for me.

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Hiroshi Fujioka et al／医療保健学研究

While I am ﬁxing a meal in the kitchen, thechild’s sister sometimes suctions her.

５号：41-53頁（2014）

Thanks to the many people involved, my burden
has decreased. Now I can face my daughter in agood mental condition. Since I am emotionally“Caregiver can obtain support from service

stable, I can do various things in a good, and calm,

providers and administration”

state of mind, thinking, “I will do that for myThrough consultation with service providers,daughter, too” and “Perhaps I can do that, too.” It is

subjects were able to obtain proper advice to solve

for the best that we are supported by many people

their worries about child rearing. For example:

and see our daughter grow together.

Physical therapists give me advice on how toaccommodate the child’s posture to awheelchair that does not ﬁt the child’s body size

Continuation of appropriate rearing───────────────────

in order to make him more comfortable. Nurses

Through exchanges with others, subjects gained

listen to me and give advice, particularly inpersonal inner power. This made it possible forregard to physical issues, such as what we needthem to approach others, and led them to establish

to look out for at home to avoid hospitalization.

their own rearing systems. This process had aService providers are not limited to professionals.

feedback effect of replenishing the inner power of

In patient groups, which also act as groups forthe subjects, thus enabling them to continue withparents who rear children with disabilities, theappropriate child rearing.

parents themselves can act as service providers.

On the other hand, subjects were exposed to

Subjects were able to obtain advice from otherconstant anxiety over continuation of the current

parents in the group to help them solve theirrearing system.

worries about child rearing. For example:
If I ask how to do suction through the patient“Anxiety about the future”

group mailing list, I will receive a lot of advice

Subjects felt anxious over continuation of thefrom all over the country. It’s so great! I myself

current rearing system, considering possible

have asked for, and received, advice this way.

changes in the future (aging, sickness, etc.) among

As a result of negotiations with administrative

family members, including in themselves, as well as

staff, the legal system that covers children withchanges in the service system, even though they

disabilities has been corrected and improved. For

were currently capable of appropriate rearing. For

example:example:A respite service in the ward has come to accept

We have no place to leave my child after hechildren who need medical care. A children’s

graduates from school. What do they think wehall is also examining how it accepts children

should do with children who need medical care?

with disabilities. I think the ward is giving

As my child grows older, and I myself age. I am

consideration to children with disabilities invery anxious thinking who will take care of him

various ways.

after I die – I cannot die leaving him behind.

By obtaining support from other family members
and service providers, the subjects became morepositive in their child rearing and succeeded inestablishing a child-rearing system centered on thechild and themselves. For example:

50
Hiroshi Fujioka et al／医療保健学研究

Discussion

５号：41-53頁（2014）

disabilities served as a starting point for thepromotion of empowerment that followed. The

Process of empowerment of main caregivers and───────────────────────────
direction of care support for them───────────────────

efﬁcacy of pe er support among parents inpromoting their empowerment has already been
demonstrated (Kitagawa, 2008). For this reason,

The subjects were originally in a state ofnurses are required to consider introducing parents

powerlessness when they were isolated in rearing

to other parents or a patients’ association based on

their children. Every parent expects their child to be

their needs, in order to promote exchanges among

born, and grow, healthy (Nakatsukasa, 1988). For

the parents.

the subjects, who are also parents, their children’s

On the other hand, families rearing children withdisabilities were a great shock that upset theirdisabilities show strong demand for information

expectations, representing a source of distress that

relevant to local service resources, and this indicates

was very hard to accept. Accordingly, the parents

the importance of providing information (Burton-

initially resorted to an invalid method of coping in

Smith et al, 2009). Nurses themselves are required towhich they maintained unattainable hope that theirbe effective information providers, by sharing

children would be cured of their disabilities.

appropriate information with other professionals,

Because doctors or nurses frequently have occasionsuch as social workers, on a daily basis.

to be involved in the outpatient department or on

Subjects also consider an appropriate rhythm ofwards with parents whose children are newly

daily life essential to maintaining their mental

diagnosed with disabilities, they are required ﬁrst of

stability. However, the health of children with SMID

all to accept the parents’ feelings, as mentioned

is inclined to be easily upset (Nakanishi, 2006). This

above, sympathize with them, and consider ways in

may directly upset daily routines in both thewhich support staff can help the parents to rear thechildren and their parents who provide thechild.

necessary care. For this reason, nurses are required

Through exchanges with other parents who haveto give the parents advice on daily living, including

reared children with disabilities, the subjects

on the management of their children’s physicalgradually came to share feelings and experiencesconditions.

with others, accepted the disabilities of their

The main targets of the subjects’ approaches tochildren, and acquired mental stability. At the same

better child-rearing were service providers andtime, through sharing of information on childadministrative staff. In contrast, the subjects did not

rearing, the subjects came to acquire caring skills

make obvious approaches to other family members.

and techniques for coping with problems, inIn the case where all family members had alreadyaddition to their own policies of child rearing,united to cope with the child’s disabilities, it isincluding approaches to service providers andpossible that there was no need to approach otheradministrative staff. In this way, we observed thatfamily members. In other cases, the subjects

exchange with other parents contributed greatly toappeared to place priority on approaching service

the empowerment of subjects. In fact, the basics ofproviders rather than other family members to help

empowerment are said to be participation in awith child rearing. This may be because othergroup (Segal et al, 1995). In the case of our subjects,

family members are non-professionals and do not

too, it may be said that their participation in ahave access to the special information and skills

group of other parents rearing children withthat the subjects (and their children) need. If

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Hiroshi Fujioka et al／医療保健学研究

５号：41-53頁（2014）

elements of a strong struggle over roles in childbetween 5 and 18. The subjects were therefore in

rearing are observed among family members, then

their 20s to 40s. In future research, it will beintervention by a nurse is required to coordinate thenecessary to approach older parents rearingroles of the family members (Strauss et al, 1984).

children with SMID.

The research results also suggested that nonfamily-members, such as nurses and social workers,
were required to approach other family members

Conclusion

about some subjects in some cases.
Subjects felt anxious over continuation of the

To examine the empowerment of families rearing

current rearing system, given the fact that whenchildren with SMID, we conducted semi-structured

their children graduated from school, the parents

interviews with the main caregivers in 19 families

would no longer have a place to leave them on a

and applied the M-GTA to analyze data

daily basis. They were also concerned about their

qualitatively. The results clariﬁed the process ofown aging and sickness, even though they were

empower ment of the main caregivers. Maincurrently capable of appropriate rearing and in a

caregivers who had initially been isolated in childfully empowered state. This was typical in the caserearing achieved individual inner power throughof our subjects, who were serving as the main

exchanges with others. They started approachingcaregivers for their children. As Japanese society

others and then ﬁnally established their own

moves toward a super-aging society, the aging ofrearing systems. The process was then fed back to

caregivers is also becoming a serious problem for

replenish the inner power of individual caregivers

parent and partner caring (Ono, 2002). However, inand enable them to continue with appropriate childcases where children with disabilities are cared forrearing. The research results suggest that practicalby their parents, the situation is much more serious.

caring support should be supplied in speciﬁc

Taking into account a generational change indirections to promote the empowerment of families

caregiving, construction of a rearing system looking

who rear children with SMID.

into the future is indispensable.
Limitations and future themes────────────────

Acknowledgement

The subjects of the research were limited to those

We are very g rateful to the families who

who agreed to talk with the researchers about their

participated in the study. This study was supported

empowerment. For this reason, it is possible thatby a grant from the Kimura Foundation for nursing

these subjects were already in a somewhat

education (2009-2010).

empowered state and thus able to talk about theempowerment process in a positive manner. In
future research, to gain a more multilateral

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５号：41-53頁（2014）

原著論文

在宅で重症心身障害児を療育する家族のエンパワメントプロセス
藤岡寛1，涌水理恵2，大久保嘉子3，米山明3
1

つくば国際大学医療保健学部看護学科2
3【要

筑波大学医学医療系

心身障害児総合医療療育センター

旨】重症心身障害児を療育する家族のエンパワメントに関して、19家族の主介護者に半構造化面接を行い、修正版グラウンデッド・セオリー・アプローチを用いて質的に分析した。療育において孤立していた主介護者が、障害児をもつ親同士の集団を中心とする他者との関わりを通じて、個人内の力を充足させ、サービス提供者や行政担当者などの他者へ働きかけるようになった。そのことで、療育体制を確立することができていた。この一連の流れは、個人内の力の充足へフィードバックされ、適切な療育が継続されていた。このような主介護者のエンパワメント・プロセスの結果から、障害児をもつ親同士の集団に参加できるよう促したり、児の体調管理を含めた生活上のアドバイスをしたり、家族内役割の調整を主介護者に代わって家族に働きかけたりするといった、エンパワメント推進に向けた具体的な看護支援の方向性が示唆された。(医療保健学研究
41−53頁／2013年11月21日採択)

キーワード：障がい児，エンパワメント，家族，在宅ケア，質的研究第５号：