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Advances in Mental Health and Intellectual Disabilities
Emerald Article: The cultural context of care-giving: qualitative accounts
from South Asian parents who care for a child with intellectual
disabilities in the UK
Kuljit Heer, Michael Larkin, Ivan Burchess, John Rose
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To cite this document: Kuljit Heer, Michael Larkin, Ivan Burchess, John Rose, (2012),"The cultural context of care-giving:
qualitative accounts from South Asian parents who care for a child with intellectual disabilities in the UK", Advances in Mental
Health and Intellectual Disabilities, Vol. 6 Iss: 4 pp. 179 - 191
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Kuljit Heer, Michael Larkin, Ivan Burchess, John Rose, (2012),"The cultural context of care-giving: qualitative accounts from
South Asian parents who care for a child with intellectual disabilities in the UK", Advances in Mental Health and Intellectual
Disabilities, Vol. 6 Iss: 4 pp. 179 - 191
http://dx.doi.org/10.1108/20441281211236580
Kuljit Heer, Michael Larkin, Ivan Burchess, John Rose, (2012),"The cultural context of care-giving: qualitative accounts from
South Asian parents who care for a child with intellectual disabilities in the UK", Advances in Mental Health and Intellectual
Disabilities, Vol. 6 Iss: 4 pp. 179 - 191
http://dx.doi.org/10.1108/20441281211236580
Kuljit Heer, Michael Larkin, Ivan Burchess, John Rose, (2012),"The cultural context of care-giving: qualitative accounts from
South Asian parents who care for a child with intellectual disabilities in the UK", Advances in Mental Health and Intellectual
Disabilities, Vol. 6 Iss: 4 pp. 179 - 191
http://dx.doi.org/10.1108/20441281211236580
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The cultural context of care-giving:
qualitative accounts from South Asian
parents who care for a child with intellectual
disabilities in the UK
Kuljit Heer, Michael Larkin, Ivan Burchess and John Rose
Abstract
Purpose – This study aims to explore the cultural context of care-giving amongst South Asian
communities caring for a child with intellectual disabilities in the United Kingdom.
Design/methodology/approach – In the context of the United Kingdom’s Children’s Intellectual
Disability Services, the study set out to develop a culturally sensitive account of Sikh and Muslim
parents’ experiences of caring for a child with intellectual disabilities. Focus groups were conducted
with parents from Sikh and Muslim support groups who were all accessing intellectual disability services
for their children. Transcripts were analyzed using interpretative phenomenological analysis,
a qualitative technique.
Findings – Three master themes emerged from the analysis which were: Making sense of the disability;
Feeling let down by services and Looking to the future. These themes reinforce findings from previous
research particularly in relation to difficulties when making sense of the disabilities and difficult
interactions with services.
Practical implications – The study makes recommendations for service delivery to ethnic minority
groups including being aware of intra-group variations in the interpretations and responses of
South Asian parents.
Originality/value – Ultimately, the study makes recommendations for developing culturally sensitive
support and interventions for ethnic minority groups which is important given the increase in multi-ethnic
populations in the UK.
Keywords Care-giving, National cultures, Intellectual disability, South Asia, Social care,
Learning disabilities, United Kingdom, Children (age groups), Ethnic minorities
Paper type Research paper
Introduction
British South Asian communities and intellectual disabilities
In the UK the term South Asian usually refers to people who originate from India, Pakistan,
Bangladesh and Kashmir (British Sociological Association, 2005). The prevalence of
intellectual disabilities amongst South Asians aged between five and 32 has been shown to
be three times higher than any other community in the UK with 19 per cent of families caring
for more than one member with an intellectual disability (Azmi et al., 1997). This high
frequency has been linked to a poor uptake of maternity services, higher genetic risk factors
as well as pervasive social and material disadvantage amongst South Asian communities in
the UK (Emerson and Hatton, 2004; Mir et al., 2001; Hatton et al., 2010).
The experiences of South Asian families caring for a child with intellectual disability in the UK
can be very distinct from those of White families. Each culture often has its own cultural
models of child development, which can influence interpretations of disability (Skinner and
DOI 10.1108/20441281211236580 VOL. 6 NO. 4 2012, pp. 179-191, QEmerald Group Publishing Limited, ISSN 2044-1282
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Kuljit Heer and
Michael Larkin are based in
the School of Psychology
at the University of
Birmingham,
Birmingham, UK.
Ivan Burchess is based at
Ivan Burchess Applied
Psychological Services,
Wolverhampton, UK.
John Rose is based in the
School of Psychology,
University of Birmingham,
Birmingham, UK.
The authors would like to
thank the two carers support
groups, the parents and staff
who made the research study
possible.
Weisner, 2007). People from South Asian cultures may be more likely to attribute disabilities
to spiritual and supernatural causes such as the belief in karma or to view the disability as a
test from God (Katbamna et al., 2002; Bywaters et al., 2003; Croot et al., 2008). These
religious interpretations may in turn have implications for how parents seek out services and
how they care for their children. Faith can provide an interesting mediator of beliefs about
disability, but tends to vary depending on individual circumstances. South Asians are not a
homogenous group, sharing cultural practices and beliefs, but instead a culturally diverse
and heterogeneous group made up of a number of sub-groups. Within each group, there is
variation in terms of languages, religious practices, migration histories, education levels,
financial status and degree of acculturation (Berry, 1997). These factors can influence how
parents make sense of their child’s intellectual disabilities and the types of resources they
draw on when doing so. Additionally, socio-economic factors can influence the way in which
care is provided and sought out. For example, South Asian families in the UK caring for
individuals with intellectual disabilities have been shown to face a greater burden of care as
a result of poverty, poor housing, unemployment and reduced benefits as a consequence of
residential status (Butt and Mirza, 1996; Hatton et al., 2010). Amongst Muslim communities
this deprivation has been shown to be more pronounced (Hatton et al., 2010) and due to
current political situations this community is more susceptible to feeling marginalized.
The current study used qualitative methods (focus groups) and adopted a hermeneutic and
phenomenological (Smith et al., 2009) approach to the study of culture and experience. The
study was carried out with two pre-existing groups of parents caring for a child with
intellectual disabilities who identified themselves as Sikh or Muslim. Sikhs and Muslims
together make up over 3 per cent of the UK’s population (Office for National Statistics, 2001).
There is a body of research exploring care-giving amongst South Asian families with a child
with intellectual disabilities but much of it has focused on Muslim carers, with little reference
to Sikh communities (Fatimilehin and Nadirshaw, 1994; Bywaters et al., 2003; Croot et al.,
2008; Hatton et al., 2003). As a result, this study endeavoured to understand the
experiences of both Sikh and Muslim parents through their collaborative attempts at making
sense of disability within their respective groups. The group discussions provided insight
into shared beliefs as well as differences and conflicts between and within both groups.
Aims of the current study
Our overall aim was to contribute to the development of culturally appropriate support and
interventions in children’s intellectual disability services. This is particularly important given
the increase in multi-ethnic populations in the UK. The UK Government has recognized the
need to develop culturally sensitive services for ethnic minority groups in a number of
documents, a key one being the Department of Health’s (DOH) (2009) White Paper, Valuing
People Now. However, the second national survey of learning disability partnership boards
(Hatton, 2007) revealed that black and ethnic minority communities are still overlooked when
planning and implementing disability services. In order to improve services, it is important to
determine what helps to shape the experiences and interpretations of families caring for a
child with intellectual disabilities.
Method
Design
Two focus groups were conducted with South Asian parents caring for a child with
intellectual disabilities. The data collected from the focus groups was used to produce a
systematic account of the prevalent patterns of meaning within participants’ accounts, using
interpretative phenomenological analysis (IPA) (Smith et al., 2009).
Context
The research was conducted within two areas, one a small city and the other an urban
borough, both within close proximity of each other. National Health Service (NHS) Intellectual
Disability Teams from both areas helped support the recruitment of participants. The 2001
census (Office of National Statistics) revealed that 15.8 per cent of the city’s population and
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6.1 per cent of the borough’s population were of an ‘‘Asian’’ ethnic origin. In the city, Sikhs
made up the single largest Asian group, whereas in the borough Pakistani Muslims made up
the single largest Asian population group.
Participants
Participants were recruited from two pre-existing carers’ support groups. Participant details
can be found in Table I. Participants in one group reported themselves as Sikh and in the
other as Muslim. In total nine parents were involved in the focus group discussions and
included five mothers and four fathers. All parents were the biological parents of their
children with intellectual disabilities and were caring for their children at home. Each child
had been born in the UK. The Sikh parents had been born in India and the Muslim parents in
Pakistan. Parents reported having been living in the UK for between 12 and 28 years. All Sikh
parents and two of the Muslim parents were caring for one child with intellectual disabilities.
Three of the Muslim parents were caring for more than one child with intellectual disabilities.
Materials
The discussion schedule was semi-structured and therefore allowed the researcher the flexibility
to explore issues that were brought up by the parents. An initial draft schedule was designed
after conducting a literature review of the area. This was reviewed by the authors and a range of
NHS professionals from a peer review group.The feedback from these sources was incorporated
to develop a final schedule (Table II). This was pilot tested on a group of four South
Asian mothers from a local play group. The discussion schedule was designed using non-direct
open-ended questions, in an attempt to avoid imposing specific understandings of the
intellectual disabilities onto the parents. The questions aimed to provide a loose guide, which
enabled participants to take the researcher on a journey of their own personal experiences of
care-giving and understandings of their child’s intellectuald isabilities. In doing so, the researcher
was guided by the participants and asked questions in response to what was being discussed.
Procedure
The study was given ethical approval from a NHS research ethics committee. The researcher
went to visit each group separately during one of their monthly meetings and provided them
with details of the focus groups. As both groups were happy to take part, the researcher met
each one during one of their monthly meetings to conduct the focus groups. Informed written
consent was obtained from each member of the group prior to conducting the focus group.
The Sikh parents’ focus group was conducted in Punjabi and the Muslim parents’ group in
Mirpuri. All interviews were conducted by the first author who was able to speak and
Table I Participant details
Participant pseudonym
Relationship to
child with ID
Language
spoken Characteristics of Child with ID
Sikh parents group
Mr Samra Father Punjabi Male (17 years) SID
Mr Bhambra Father Punjabi Male (19 years) SID and epilepsy
Mrs Bhuppal Mother Punjabi Male (8 years) SID and epilepsy
Mrs Virk Mother Punjabi Female (18 years) SID and epilepsy
Muslim parents group
Mr Ahmed Father Mirpuri Male (16 years) ID
a
Mr Rasheed Father Mirpuri Male (10 years) SID
a
Mrs Hussain Mother Mirpuri Male (7.5 years) ID
Mrs Akhtar Mother Mirpuri Female (19 years) SID
Mrs Rahman Mother Mirpuri Male (18 years) ID
a
Notes:
a
Participants have more than one child with an intellectual disability; ID – intellectual disability,
SID – severe intellectual disability; the association between intellectual disability and epilepsy
remains unclear with some research reporting positive associations (McDermott et al., 2005;
McGrother et al., 2006)
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understand both languages. Focus groups lasted up to 75 minutes. Confidentiality was
assured by keeping quotes anonymous.
Analysis
Both focus groups were audio-recorded, transcribed and translated into English by the first
author. In order to check the accuracy of the translation, 10 per cent of the focus group
recordings were re-translated by an independent professional translating service. Transcripts
were analyzed using IPA (Smith et al., 2009). IPA aims to provide an in-depth account of
participants’ personal experiences of a certain phenomena, in this case caring for a child with
intellectual disabilities. IPA concentrates on the lived experiences of the participants and
draws out commonalities between participants’ accounts, rather than trying to create general
theories. IPA is a technique which hasbeen less frequently applied to focus group data, due to
the complexity of applying experiential analysis to group settings. However, recent literature
exploring the application of IPA to focus group data was utilized in order to ensure the
feasibility and accuracy of the analysis (Palmer et al., 2010; Tomkins and Eatough, 2010).
Results
Three master themes emerged as a result of the analysis (Table III). Each master theme was
made up of a number of subthemes which reflect the primary concerns of the participants.
Each theme will now be described in more detail and illustrated with the use of quotes from
the group discussions. Pseudonyms have been used to ensure all participants remain
anonymous.
Table II Discussion schedule
Questions Prompts
What made you want to join this support group? Why did you join?
Can you tell me a little about your child?
Where did you go for support before this group? Did you have any other support or help?
What do you find enjoyable about caring for your
child?
What parts do you enjoy most?
What do you find difficult about caring for your
child?
What things do you find hard to do and why?
What do you think caused your child’s
impairments?
Do you know what caused your child’s
impairments? (use word that parents use to
describe impairment)
How did you find out about your child’s
impairments?
When did you first realize? What did you do?
What role do your families play in helping care for
your child?
How do family and friends react to your child?
How does that make you feel?
What do you hope for your child’s future? What would you like for your child in the future?
Table III Master and subthemes
Master theme Subtheme
Theme 1: Making sense of the disability God’s choice
Focus on epilepsy and ‘‘bad’’ behaviour
A problem with expression
Struggling to get a diagnosis
Medical negligence as a cause
Theme 2: Feeling let down by services Anger at unresponsive GPs
Feeling blamed by services
Difficult interactions with ‘‘Asian’’ service providers
Theme 3: Looking to the future Concerns for future well-being
Wanting help versus giving up
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Master theme 1: Making sense of the disability
This theme describes how the parents understood and tried to make sense of their children’s
disabilities.
‘‘God’s choice’’
Mothers from both groups drew on religious resources in an attempt to make sense of their
children’s disabilities which focused on a belief that their disabilities were in the hands of
God. There were differences in terms of how these religious interpretations influenced the
parents’ perceptions of the disability. Mothers in the Muslim group talked about the child
being a test from God, which provided them with evidence of God’s purpose and faith in
them as parents: ‘‘Me, in myself I am happy, I feel fortunate, it might be a test or something
but, I am happy with God’s choice, I am happy with my fate’’ (Mrs Hussain). For mothers in
the Muslim group, religion provided them with resilience to endure the demands of
care-giving: ‘‘If these types of children are in our fate, we take it as God’s will and tolerate it’’
(Mrs Hussain). For mothers in the Sikh group, religion offered less discernable explanations
and instead they accepted that the disability was in God’s hands and something that they
had to live with: ‘‘It’s up to God why he did this’’ (Mrs Bhuppal). For these mothers, religion
offered less positive beliefs about the disability which focused on the disability being viewed
as an adversity: ‘‘We pray to God that this type of thing doesn’t happen to anyone, not even a
child of our enemy’’ (Mrs Bhuppal).
Focus on epilepsy and ‘‘bad’ ’ behaviour
For parents in the Sikh group, the process of making sense of their children’s disabilities was
done in relation to what they perceived as behavioural difficulties. Despite having received a
diagnosis the parents identified their children’s difficulties in terms of ‘‘bad’’ or troublesome
behaviour,which may have been a cultural way of making sense of their children’s behaviour.
For these parents the ‘‘bad’ ’ behaviours appeared to have a direct connection with their
children’s epilepsy. As one Sikh parent described below, the ‘‘bad’’ behaviours acted as
indicators of the onset of an epileptic seizure: ‘‘When the fits are about to happen, two or
three days before she starts talking to herself. Her behaviour gets bad. She becomes very
stubborn and very angry’’ (Mrs Virk). The significance of the epilepsy was related to its
unpredictability which caused disruption to the normality of their family and work lives: ‘‘It
would be time for work and then he’d start having fits. I wouldn’t go to work then and instead
go to the hospital’’ (Mr Bhambra). As a result management of the epilepsy and its associated
‘‘bad’’ behaviours through medication featured prominently in the parents’ accounts.
Parents in the Sikh group accepted their child’s life long reliance on medication as it offered a
means of reducing the burden of care: ‘‘Now his fits are under control. It feels like it has been
a long time since he’s had fits. He will take medication for the rest of his life’’ (Mrs Bhuppal).
A problem with expression
For mothers from both groups, their children’s disabilities represented problems with
expression rather than understanding. For these mothers, difficulties with expressive
speech were the main problems for their children: ‘ ‘She understands, but she can’t tell, she
can’t speak, she can’t talk’’ (Mrs Virk). They highlighted that their children’s disabilities made
it difficult for them to develop speech which consequently hindered their ability to
communicate, despite being able to understand what people were saying to them: ‘‘My son,
he has development delay and he cannot walk, does not speak but understands everything
but can say one or two things’’ (Mrs Hussain). For some of the mothers their children’s ability
to understand speech and conversations provided some relief that there was potential for
change: ‘‘He understands talk that, ‘you can do this and this is wrong’. He understands,
watches television, compared to before he didn’t know about television nothing! So he’s
changing’’ (Mrs Bhuppal).
Struggling to get a diagnosis
A number of parents from both groups described their struggle in trying to get a diagnosis of
their children’s conditions which was related to the fact that parents felt that doctors were
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quick to minimize their concerns about their children’s delays as being a part of normal
development: ‘‘My elder son was 15 when we found out. Earlier for 15 years they told us
when he grows up, he will get well. But we noticed his disability, that something wasn’t right’’
(Mrs Rahman). For these parents the deterioration in their child’s health was rooted in their
doctor’s inability to recognize the severity of the behavioural alterations early on: ‘‘If our
children were given proper care and treatment in the beginning then it is possible that today
their life might have been totally different’’ (Mrs Hussain). Since behavioural delays were
normalized by doctors during the early phases of the disability, the psychological impact of
the condition was still circumscribed. As a result, emotional reactions of the parents included
anger and feelings of helplessness, ‘‘When we see the condition of our children then we are
distressed and we are furious’’ (Mrs Rahman).
Some of the parents reported receiving an earlier diagnosis of their child’s delays, however,
only in response to a crisis. For these parents the adaptive decline of their child’s condition
reached a threshold of severity, which triggered major concern for the parents: ‘‘When he
was 11 1
2months old, his heart stopped, completely. They kept him in hospital for three days
and told us that this is all due to development delay’’ (Mrs Hussain). A striking element
described by the parents who had received a diagnosis was the uncertainty that seemed to
envelop their children’s difficulties. The uncertainty was in relation to not being able to
comprehend the diagnosis: ‘‘We didn’t know what it was or wasn’t’’ and feelings of
helplessness at something they had never experienced before: ‘‘You couldn’t tell what
happened, we’d never seen it before’’ (Mrs Virk).
Medical negligence as a cause
Parents who experienced delays in diagnosis or whose concerns had been dismissed
perceived their child’s disabilities as resulting due to poor medical care. Some parents
associated the cause of the disabilities with insufficient attention from health care staff during
pregnancy: ‘‘My child was starved of oxygen. The nurse was running after three ladies and
my wife was in trouble, I tried to help her put oxygen on. By the bloody time my son was born
he was starved of oxygen. And you know what happens to the brain when it’s starved of
oxygen, damage’’ (Mr Samra). Additionally, a father from the Muslim group attributed his
son’s disabilities to the suspicious activities of a service provider which allowed him to make
sense of why only two of his sons, rather than all of his sons had been affected by disabilities.
Additionally this parent held strong inclinations towards Pakistan, believing that if his sons
had been born in Pakistan they were unlikely to have had any disabilities: ‘‘I am completely
suspicious, some man came and he did something. I am 70 per cent sure that this is birth
neglect. Two sons are ok and two are ill. Two that were born in Pakistan are ok’’ (Mr Ahmed).
As well as struggling to understand their child’s disability, some of the parents also struggled
to locate the potential cause. This uncertainty and an absence of other explanations meant
that some parents attributed the causation to problems with medication: ‘‘The epilepsy,
I don’t know if she had too much medicine or the inhalers were too much. We don’t know what
the problem is. We can’t understand’’ (Mrs Virk).
Master theme 2: Feeling let down by services
This theme concentrates on the parents’ feelings of being let down by services. It focuses
primarily on the perceptions of parents from the Muslim group, who reported frequently and
in detail on their negative experiences with service providers. In contrast, the parents in the
Sikh group only reported negative experiences with Asian service providers.
Anger at unresponsive GPs
All parents in the Muslim group described strong feelings of anger and frustration towards
their general practitioners (GPs) who they felt were not doing enough to help their children.
For one mother, these frustrations were about not receiving a quick enough diagnosis of her
child’s condition: ‘‘My youngest is 18 years old. Till today no tests are done. Doctors have
done no tests and they do not know what the problem is’’ (Mrs Rahman). For Muslim parents
who had received a diagnosis, their frustrations were related to the perceived
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inappropriateness of their GPs recommended interventions. In such cases there appeared
to be a conflict between the parents’ and professionals’ agendas. For one Muslim parent, her
particular frustration was with her doctor’s ambiguity about suggested pharmacological
interventions: ‘‘Doctors say he does not have epilepsy but they have given epilepsy
medication. If he does not have epilepsy then why give him epilepsy medication?’’ (Mrs
Rasheed). A father in the Muslim group described services’ failures to meet his expectations
of an appropriate treatment for his child: ‘‘I went to the doctor and he said I will give physio,
but he can’t even walk!’’ (Mr Ahmed). For such parents services appeared to be mismatched
in terms of providing appropriate interventions for their children’s health conditions, which
further heightened parental frustrations.
Parents in the Muslim group discussed the need for specialist services to help with their
children’s physical health problems such as obesity. The group identified GPs as the primary
route to these specialist services, but they felt that access and referral was dependent on the
willingness of their GP: ‘‘If the GP is good then everything is alright and everything will go well’ ’
(Mrs Rasheed). Additionally the group felt that they were not listened to by GPs and that they
had a tendency to be overly reliant on prescribing medication as a ‘ ‘quick-fix’’ for treating their
children: ‘‘Our GPs do not listen to us. When we go and ask them and tell them the problem with
our daughter, they quickly prescribe some medication and then that’s it, finish’’ (Mrs Akhtar).
Feeling blamed by services
Parents in the Muslim group also described feeling blamed by health professionals, who they
felt associated parents with the source of the child’s disability, in the form of genetic causes:
‘‘The main thing they say to us, they side track the issue by saying you people marry your
relations’’ (Mrs Rahman). For these parents genetics did not provide a valid explanation of the
cause of the disability because it did not seem to explain why all of their children had not been
affected: ‘‘I have three children and they are ok, why aren’t they like this?’’ (Mr Ahmed).
Interestingly, parents with more than one child with an intellectual disability also refused to
accept genetics as a possible cause, and instead they questioned why genetic disorders were
prevalent amongst other communities who did not practice consanguineous marriages:
‘‘Indians, Bangladeshis, Hindus, these families have children that are disabled. We do have
marriages in families, but they don’t so why do they have disabled children?’’ (Mrs Rahman). In
addition some of the mothers from the Muslim group felt further blamed by health professionals
for contributing to the deteriorating health of their children and conditions such as obesity:
‘‘A person who is disabled and cannot move and is inactive, it is natural that his weight will
increase, and they say tha tm others and fathers don’t give the mh ealthy food, we do, but they are
always sitting and they cannot get up and that’s why their weight will increase’’ (Mrs Hussain).
Difficult interactions with ‘‘Asian’ ’ service providers
Parents in both groups reported negative interactions with ‘‘Asian’’ service providers, when
trying to seek out services for their children, which led to feelings of disappointment in their
expectations that service providers from within their own community (‘‘our people’’) should
have been more helpful: ‘‘Our women don’t tell us anything. I was hoping there would be a
white man benefit officer I could talk to. Our woman knew nothing. She was there to help our
people but she was creating more problems’’ (Mrs Samra). Negative interactions with
‘‘Asian’’ service providers left parents preferring to receive help from ‘ ‘white’’ service
providers who they perceived as being more helpful. Associated with this perception was
the parents’ proclivity to be more forgiving of any negative attitudes experienced by ‘‘white’’
service providers: ‘‘These people help us a lot, the ones that are white. If sometimes they do
not help us we do not mind it, sometimes we think they do not like us, but they help us a lot,
they are better than our people’’ (Mrs Hussain). The parents also talked about the stigma
with which disabilities were viewed within their own communities. Although parents did not
directly relate this stigma to their dissatisfaction with ‘‘Asian’’ service providers it may well
have resulted in negative perceptions.
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Master theme 3: Looking to the future
In this theme parents in both groups described their concerns as well as hopes for the future
of their children. Both groups of parents stressed their desires to provide long-term care
within the family home.
Concerns for future wellbeing
Parents from the Sikh group expressed their concerns over the future care of their children.
One of the main sources of worry for these parents was how their children would manage
without them in the future: ‘‘Our major worry is that once we die who will look after them?’’
(Mr Samra). Concerns about future care may have been linked to the parents’ worries about
their own deteriorating health. All the parents in the Sikh group described some physical
ailments resulting from the demands of care-giving: ‘‘I feel tension in my head, in my head it’s
been a month’’ (Mrs Bhuppal). It is interesting that despite expressing concerns about their
child’s future welfare, only one of the parents had taken any practical steps to safeguard their
future care. This parent emphasized and encouraged the other parents to prepare for the
future by making wills to ensure financial security for their children: ‘‘That’s why I am saying to
you all if you have not made a will, make a will’’ (Mr Samra).
Wanting help versus giving up
Parents in the Muslim group, did not express direct concerns about their child’s future, but
instead stressed the need for services to deliver appropriate care and treatment to meet
the health needs of their children. The parents highlighted their feelings of helplessness and
the need to make significant changes to improve interactions with doctors in order to receive
more help: ‘‘They should think about doing something about the doctors that if these
disabled people go to see them, they should be treated after proper examination. We cannot
do more than telling the problems of our children’’ (Mrs Hussain). One mother also raised
concerns about what she perceived as mismatched services, which in her view
unnecessarily exaggerate the needs of carers and in doing so fail to address the health
needs of their children: ‘‘We do not demand anything for us. At least they should take care of
our children’’ (Mrs Rahman). This may be a reaction to taking part in the research which was
focused on the care-givers’ experiences and therefore gave prominence to the needs of
care-givers. Finally for parents with more than one member of the family with intellectual
disabilities, there was a sense of ‘‘learned helplessness’’ (Mir and Tovey, 2003), whereby
numerous difficult encounters with services and feelings of being let down, left them feeling
powerless and resigned to the expectations of receiving little help in the future: ‘‘Our children
are now old and since a very long time we have been telling services but everything is futile.
If they don’t know by now it is useless’’ (Mr Ahmed). The parents in the Muslim group also
reported concerns about the nature of research and their perceptions of research being non-
reciprocal, providing benefits for the researchers and very little for themselves or their
children.
Discussion
Master theme 1: Making sense of the disability
Religious understandings of disability amongst South Asian families in the UK have been
well documented in research (Katbamna et al., 2002; Bywaters et al., 2003; Croot et al.,
2008). Our findings give insight into the subtle differences in the beliefs of different religions
which can impact parents’ perceptions of the disability. As described in the subtheme
‘‘God’s choice’’ only the mothers made reference to religious explanations for the disability,
which may be indicative that gender plays a role in the use of religious resources when
making sense of disability. Mothers in the Muslim group offered more optimistic
explanations, by viewing the disability as a ‘‘test’’ from God. Conversely, for mothers in
the Sikh group, religious explanations offered less optimistic views of the disability, but
religion still played an important role in their personal interpretations of the disability as being
part of ‘‘God’s plan’’. Grounding explanations of disability in religion may have given these
parents a context for making sense of and coping with the challenges of the disability and
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care-giving, as well as avoiding more negative emotions such as guilt or blame. Attributing
disabilities to external causes such as religious explanations is not something which is
specific to South Asian cultures. Many cultures have been shown to use religion as a means
of acceptance and making sense of disabilities in a positive way and as a source of coping
and grieving (Dura-Vila et al., 2010). It is important for services not to underestimate the
importance of religious beliefs for families caring for a child with intellectual disabilities, but
at the same time to recognize the differences in these religious interpretations and how they
may influence experiences of care-giving. Services could draw on the positive outcomes of
religious beliefs such as promoting resilience and coping, by incorporating a religious facet
to service provision alongside the routine medical approaches.
For parents in the Sikh group, challenging behaviour and epilepsy were identified as being
problematic, as described in the subtheme ‘‘focus on epilepsy and ‘ ‘bad’’ behaviour’’. For
these parents there was a direct association between the two, with the ‘‘bad’’ behaviours
indicating the onset of an epileptic seizure. The relationship between epilepsy, intellectual
disabilities and challenging behaviour is unclear, with some research reporting positive
associations (McDermott et al., 2005; McGrother et al., 2006). Challenging behaviour may
be a manifestation of underlying mental health problems, which have been shown to be
higher amongst children with intellectual disabilities (Emerson and Hatton, 2007). The
unpredictable nature of epilepsy and the difficulty in managing the ‘‘bad’’ behaviours meant
that parents concentrated on the management and control via medication. Although
medication may successfully manage challenging behaviour, it may not deal with the root
cause of the behaviour. This highlights the need to encourage and support parents to help
their children deal with the psychological aspects of the disability rather than concentrating
on the somatic symptoms.
For parents from both groups, the disabilities resulted in problems with their children’s
expressive communication (speech) rather than receptive communication (understanding)
as described in the subtheme ‘‘a problem with expression’’. There is a body of research
which suggests that parents of children with intellectual disabilities are likely to experience
more stress than parents of typically developing children, because they face additional
challenges such as communication and behavioural difficulties (Baker et al., 2002; Hastings,
2002). Despite accepting their children’s difficulties with expressive communication
(speech), the parents’ beliefs that their receptive communication (understanding) was intact
may have provided them with relief and hopes for improvement in the future, thus allowing
easier adjustments and less stress. Services could encourage parents to explore alternative
means of communicating with their children through the use of physical gestures, thus
allowing parents to better communicate with their children, which could reduce parental
distress and make better adjustments.
The disclosure process is important because it allows parents to accept, adapt and cope
with their child’s disability (Hatton et al., 2003). A positive disclosure or diagnosis process
can lead to long-term benefits for the whole family including early interventions, better
adjustments and more support (Hatton et al., 2003). Parents in this study described in detail
‘‘struggling to get a diagnosis’ ’ which meant that they were constantly searching for a way to
make sense of the disabilities. Often minority families who do not speak the host country’s
language may find the disclosure process a lot harder due to poorly assimilated information
which could have been complicated by communication difficulties. This could be improved
through the involvement of interpreters/translators and better post-disclosure support for
parents. Additionally more culturally appropriate written and audio-visual information needs
to be readily available so that parents are given the resources to fully understand the
complexities of their child’s delays and the support available to them. Difficulties with the
disclosure process meant that parents in the current study drew on alternative explanations
to make sense of their child’s disability. In response, parents associated the cause of their
child’s disability to the negligence of service providers, either at the time of the birth or as a
side effect of wrongly prescribed medication as described in the subtheme ‘‘Medical
negligence as a cause’’.
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Master theme 2: Feeling let down by services
In the subtheme ‘‘anger at unresponsive GPs’’ parents in the Muslim group reported difficult
interactions with GPs. These difficult interactions left the parents experiencing problems with
the referral process to specialist services and ultimately, diagnosis. This highlights the need
to improve the ease with which parents can navigate western service systems. Positive
encounters with services during the early stages of detection may increase the likelihood of
parents engaging with services on a long-term basis, which could lead to earlier diagnosis
and interventions. In the UK GPs tend to be the initial ‘‘port of call’ ’ for parents with concerns
about their children. Awareness and uptake of GP services amongst South Asians has been
shown to be a lot higher than specialist services (Katbamna et al., 2002). More in-depth
training for GPs to promote the early recognition of symptoms of intellectual delays and
cultural competence training could improve interactions between GPs and South Asian
parents during the early stages of detection.
The risk of having a child with severe medical conditions amongst a first cousin couple is
thought to be between 5 and 6 per cent, almost three times higher than non-cousins (Saggar
and Bittles, 2008). However, Muslim parents did not accept medical explanations that the
disability may have been inherited, as mentioned in the subtheme ‘‘feeling blamed by
services’’. This may be associated with the parents’ feelings that services were adopting
‘‘culture blaming attitudes’’ (O’Hara, 2003), which view their cultural practices in a negative
way. Additionally, parents felt that they were being blamed for contributing to their children’s
health conditions such as obesity, due to inappropriate meal choices. People with
intellectual disabilities and those from ethnic minorities are more likely to be obese than the
general population (Emerson, 2009). Sensitivity when talking about ‘‘lifestyle’’ and cultural
practices should be prioritized so that parents do not feel blamed or singled out.
Both groups described negative interactions and experiences with ‘‘Asian’ ’service providers
in the subtheme ‘ ‘difficult interactions with ‘‘Asian’’ service providers’’. This result was
surprising given that both groups were facilitated by South Asian service providers, with
whom the parents had built up strong relationships. Negative encounters with a small number
of ‘‘Asian’’ service providers and with the South Asian community (due to stigma) may have
meant that parents found it difficult to trust South Asian service providers whom they did not
know very well. The current study highlights the need to actively involve parents in deciding by
whom service is delivered and the need for more training for service providers, in particular for
those working closely with ethnic families, to promote interpersonal skills and cultural
competence. It can be taken for granted that ethnic service providers will naturally be aware of
cultural issues important to service users from the same ethnic group, however, variations may
be present due to acculturation, language, country of birth, social background and religion.
Master theme 3: Looking to the future
The subthemes‘ ‘concerns for the future’’ and ‘‘wanting help versus giving up’’ all described the
parents expectations about the future care of their children. All parents’ stressed the need to
provide care within the family and they did not mention any plans for their child living
independently, which has been demonstrated by other research (Bywaters et al., 2003). This
may conflict with the principles of learning disability services in the UK which promote
independence and choice as outlinedin ‘ ‘person centered planning’’ (DOH, 2009; Hensel et al.,
2005). Services could incorporate ideas of independence and choice within a cultural
framework. This could be achieved by encouraging parents to promote independence in a
more subtle way (through leisure activities, socializing and personal care) whilst still providing
care within the home. Associated with this is the need to offer appropriate physical and
emotional support for parents who decide to provide care on a long-term basis, as the
challenges of care-giving are likely to increase with increasing age. It is however, important to
note that parents may choose not to access services that are available to them. For example,
the parentsin the Muslim group stressed their concerns that serviceswere often ‘‘mismatched’’
in terms of the types of services they provided and for whom they provided them. These parents
held the responsibility tocare for their children themselves without the need for formal services
(such as respite care and carer related services).
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Finally, the study revealed some subtle differences in the interpretations and responses
between Muslim and Sikh carers. For example, differences were identified in the religious
interpretations of the disabilities with Muslim parents holding more optimistic views.
Additionally, Sikh parents made sense of their children’s disabilities by viewing them as
‘‘bad’’ behaviours which may be a cultural way of making sense of challenging behaviour.
Specifically, Muslim carers demonstrated more dissatisfaction with services. This highlights
the need for services to move beyond a reliance on expectations and assumptions of
working with ethnic minorities. In order to do so, services need to gather information from a
range of sources in order to understand the context in which individuals and families are
situated to explore their positions in terms of cultural preference. This could be achieved by
incorporating cultural assessments into care pathways. This could take the form of verbal or
written assessments which aim to explore individual positions on factors such as religious
beliefs, personal beliefs about the disability and attitudes towards services.
Limitations
Recruitment of participants proved difficult with intellectual disability teams reporting having
limited numbers of ethnic families on their case loads, which may be a representation of low
service uptake amongst South Asian communities. Of the parents identified some were
reluctant to participate due to fears around confidentiality. As a result the research was reliant
on pre-existing parents groups for participation. It has however, been demonstrated that
existing groups make ideal focus groups as people are more likely to be open with people
whom they already know (Kitzinger, 1995). Another limitation may be the different localities of
the two groups of parents. Differences in experiences of receiving a diagnosis may be linked
to differences in the way services operate in the two different locations. Finally, it is important to
note that the main focus of IPA is to provide detailed accounts of the experiences of a small
number of participants rather than try to make generalizations about whole populations.
What do we already know about this topic?
BThe prevalence of intellectual disabilities is thought to be three times higher amongst
South Asian communities in the UK.
BThe uptake of specialist services remains low amongst this group.
BCulture has been shown to play a major role in the way in which South Asians understand
and respond to caring for individuals with intellectual disabilities.
What more does this study contribute?
BThe study provides insight into the experiences of Muslim and Sikh carers caring for
children with intellectual disabilities in the UK. To date, very little research has explored
the experiences of Sikh carers.
BUniquely, the qualitative accounts provide insight into the shared beliefs and differences
between and within both groups of carers.
BThe findings provide an insight into how culture can shape the way in which disabilities
are understood and experienced by South Asian communities. For example, the findings
highlight the importance of religion and culture in the interpretations and responses to
disability as well as high levels of dissatisfaction with what were regarded as
‘‘unresponsive’’ services.
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Corresponding author
John Rose can be contacted at: j.l.rose@bham.ac.uk
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