Siblings as “Young Carers”
for People with Disabilities
Risa MATSUMOTO
Doshisha Univ. PhD. Student
Research Fellow of the Japan Society for the Promotion of Science

1. Introduction: Research Purpose and SignificanceThis research examines the experiences of young carer siblings ofindividuals with disabilities in Japan. It will be achieved throughhaving the (now adult) siblings reflect on their experience as
young carers. Additionally, the process of establishing a siblingcare role will be introduced.
A significant amount of research in Japan has focused on parental
caregiving in families of people with intellectual anddevelopmental disabilities (IDDs) 1 but the siblings of suchindividuals also play a significant role. Moreover, as sibling carers
are the only immediate family members of similar age to thepeople with IDDs, they have a specific care role from childhood toadvanced years, as opposed to the parents. In fact, previous
research on sibling carers highlights the psychological problems
and stigma that emerge because of this specific care role(Grossman1972, Meyer and Vadasy1994, Bruke2010,etc).
Furthermore, previous Japanese research has focused onrelatively simple care role relationships within the family. Forinstance, much has been said on the role of young carers2 whoIntellectual and developmental disabilities hereafter abbreviated to IDDs.
There are a number of definitions of young carers. But Becker, who is at
the center of research in this field, suggests young carers are children under
18 who support to a family member, and have significant responsibility for
caring tasks that are like adult responsibilities. And that such care has ahuge impact on the child’s life (Becker2000).
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look after their disabled parents, and also parents who care for
their disabled children. Both of these situations are important but
the care roles are quite easy to identify. In contrast, some sonsand daughters have parents who need significant assistance fromthem when administering care to their siblings. Such cases areboth more complex and under-researched. Consequently, thisresearch will tackle such cases, identifying siblings’ concrete carerole.
2. Outline of Investigation

2-1. Data
Data from 1 participant (Mr. A) was collected from,- a Life Story Interview conducted in 2012,-information shared at Mr. A’s self-help group for siblings ofpeople with disabilities in 2010,- and Mr. A’s personal history records.

2-2.Background on Interviewee
Mr. A is in his sixties. He is the eldest son of a farming family andhad 3 brothers, all born 2 years apart from when Mr. A was 2 until
when he was 6. All 3 brothers had IDDs.

2-3. Methodology: Life Story Interview
The life story interview is an unstructured interview where theinterviewee is given a few topics to consider in advance and in theinterview, talks freely about them with as little input andinfluence from the interviewer as possible.
In this case, our interviewee (Mr. A) was given 3 topics to prepare
for the interview: firstly, the strength of the connections between
various family members plus the social resources available at2different points in Mr. A’s life; secondly, Mr. A’s description of theactual care he gave during his life; and thirdly, his feelings aboutcaring for his sibling (again, at the various points during his life).
The interview was approximately 2 hours, 10 minutes long.
Questions from the interviewer were rare and were usually onlyto clarify.

2-4.Ethical Considerations
This research is based on the ethical guidelines proposed by The
Japanese Society for the Study of Social Welfare (JSSSW). Rights
to investigate participants for this research were obtained by
Doshisha University of Liberal Arts Research Ethics Review
Committee regarding Human Subjects (Number:1139).
I explained the methodology to the interviewee and he agreed to itin advance.
3. Findings

3-1.Experience as a Young Carer
Similar to data from previous research on young carers (Deardenand Becker, 2004), Mr. A gave physical and psychological care.
For example, he changed his brothers’ clothes, fed and cleaned-up
after them, helped them bath, dropped them off and picked themup from school and other institutions, played with them, andparticipated in meetings and events in schools and careinstitutions. Sometimes his workload was divided between his
parents and himself and many times he was the sole carerbecause his parents had to engage in paid employment outside
the home. At the same time, he took psychological care of hissiblings, watching over his brothers and nurturing them.
In school, Mr. A and his brothers were discriminated against3because of stigmas attached to disabilities and poverty. If thebrothers caused trouble in school, the teachers expected Mr. A todeal with it. Usually, teachers deal with challenging students inschool but in this case, people seemed to think that the family
members of disabled people should be responsible for the care ofdisabled people. This resulted in Mr. A not being able to behave
like a child while at school.

3-2. Reflections on the Care Role
In this investigation, Mr. A repeatedly said that he held a carerole not as a sibling, but as a family member.
A : (About the present care for brothers) If my parents werealive, they’d be taking care of my brothers. But they died. So I
take on a caring role, not as a sibling, but as a family member.
Actually, the parental role was transferred from my parents tomyself. It’s reality. Yeah, yeah, yeah.
It’s possible that Mr. A thinks the care role which family members
take on is similar to the parental role. This means that he regards“sibling-carers” as those who don’t hold a significant care role
but that “parents”do hold such a role. It also suggests that hedistinguishes between himself and siblings of other families3.
Also, Mr. A isn’t at odds with being a carer because he has been
taking on the care role from childhood.
I : For the role… uhh…I think that you take on a care role
naturally as a family member, I think. How do you think
about your care role ?
A : Uhh…honestly speaking, uhh…I’m not at odds with being aSuch families are probably connected to members of his self-help groups
and his brothers’ institutions.
34carer.
I : I’m not at odds ? Oh, Really ?
A : Yeah. It’s reason that I have been taking care role fromchildhood. Of course, I can think “my life is right?”. But I
think I take care role naturally in my feeling.
In addition, his care role seemed to have changed and developed,
as exemplified by the following 3 quotes from Mr. A,“…I could not accept myself as a carer. Now, I don’t know if I canaccept it. Yeah. So it changes daily.”“I think of course I think about everything. Why did I dosomething?”“I think, in the old days, I did things. Uhh. I can understand whya little. Yeah. I need to take a lot of time to think about it.”
Here Mr. A is expressing how he questions his previous actions.
So it seems he continually thinks about and re-evaluates his carerole.

3-3. Relationships between Carer and Sibling with Disability

On the other hand, he feels guilty about refusing to care for hisfamily.
A : (About the 3rd son who could not walk after contractingmeasles) I could not accept the after effects of the measles.
For instance, uhh, when my brothers had various kinds ofincontinence, I cannot forget about when I couldn’t move
forward with my brothers [ed. Couldn’t escaped from the carerole]. Uhh…So…I still regret it and feel guilty about it. Yeah,yeah. Similar episodes have repeated themselves in mylifetime. Yeah.
5Mr. A talked about not being able to“move forward with mybrothers ” so not only did he see himself as a ‘parent’ but he also
saw himself as a sibling and therefore an equal, making his
relationship more complex. This is probably because Mr. A is ofsimilar age to his brothers.
4. The Next Step

4-1.Influence of Previous Experience as a Young Carer
In the future, it may be useful to analyse the experiences of adultsiblings who were not young carers, but who find themselves
taking on a care role when their parents get old or die. Suchsibling carers may find it more challenging than siblings who
have been young carers. Consequently, analysing such ‘new’adult sibling-carers may make it easier to identify the process oftaking on a care role.

4-2. Growing up Each Other: Relationships between Sibling and
Sibling with Disability
It would also be beneficial to focus on how the care role changes
and grows as opposed to it being fixed. Siblings in childhood whowent to the same school share similar experiences for example,
when playing and when going to school.
Such siblings help each other grow and mature and canunderstand what each other are going through as they are of asimilar age and are often in the same environment. Nevertheless,the sibling carer still maintains her / his caring role. For instance,
Mr. A often expressed concern that sometimes schools refused hisbrothers’ entry as pupils.

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It is also important to consider the relationship of the law orsocial resources in future research to provide a 360° view of theforces acting on this aspect of caring.
5. Conclusion
Through evaluating the experiences of a young carer of siblings
with disabilities in Japan, it seems that, similar to previous
research on young carers, the participant in this research, gave
physical and emotional care.
It also showed that the participant experienced role-conflicts at
school and, within the family, felt the care-role was complex,dynamic, and often changing. Consequently, it may be useful inthe future to look at such changes, as well as the law and socialresources.
Additionally, research on adult sibling-carers, who are new to thetask, may identify the process of adopting a new care role.

This work was supported by Grant-in-Aid JSPS Fellows.

7References
Becker, S. （ 2000 ） Young Carers, Martin Davies ed., The Blackwell

Encyclopedia of Social Work, Brackwell Publishing.
Bruke, P.（2010）Brothers and Sisters of Disabled Children: The Experienceof Disability by Association, British Journal of Social Work, 40,1681-99.
Dearden, C. and Becker, S.（2004）Young Carers in the UK: The 2004 Report,

CARERS UK.
Grossman,F.K. （ 1972 ） Brothers and Sisters of Retarded Children :An
Exploratory Study,Syrecuse University Press.
Hirakawa,T.（1986）Siblings of Children with Disabilities. Annual Research

Early Childhood, 11, 65-72.
Meyer ,D. J. and Vadasy ,P.F. (1994)Sibshops :Workshops for Siblings ofChildren with Special Needs, Paul H Brookes Pub Co.
Morita, K.（2010）The Experience of Children with a Parent with Mental
Health Problem : Life Story of a Young Adult Carer who Care a Parentwith Anxiety Disorder, RISSHO Journal of Social Welfare Studies, 12(1),1-10.
Northern Ireland Children and Young People’s Plan 2011-2014 Regional Sub
Group on Young Carers （ 2011 ） Young Carers Draft Action Plan
2011-2014, The Children & Young People’s Strategic Partnership.
Shibasaki, C.（2005）A Fundamental Study about Lives of A Young Carers :Maily on “ Young Carers in the UK: The 2004 Report ” ,HUMAN

WELFARE REVIEW, DEN-EN CHOFU University, 8, 125-42.
Shibuya,T. （ 2007 ） Children with no disabilities having parents withdisabilities :Focus on the Case of Children Of Deaf Adults, public paper in4th
meetingofJapan
SocietyforDisability（http://www.arsvi.com/2000/0709st.htm，2012.10.30）.

Studies,

Tsuchiya, Y.（2006）Beside “Disability”: The Experience of Children of a
Parent with Amyotrophic Lateral Sclerosis（ALS）, Journal of Disability
Studies, 2，99-123．

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