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Physiotherapy 98 (2012) 351–356

The care needs of Pakistani families caring for disabled children: howrelevant is cultural competence?

Elizabeth J. Croot ∗School of Health and Related Research, University of Sheffield, ICOSS, Second Floor, 219 Portobello, Sheffield S1 4DP, United Kingdom

bstract

bjective To identify factors that Pakistani parents living in the UK and caring for children with learning disabilities felt were importantomponents of their care and to discuss the relevance of the concept of cultural competence in the light of these findings.esign A qualitative study taking a constructivist approach to gain insight into participants’ experiences of health care provision. In depth

nterviews were used to explore the ways in which personal understandings and life experiences shaped the characteristics of the therapeuticncounter that participants identified as important. Data were analysed thematically.etting A Northern city in England. Interviews took place in participant’s homes or work places.articipants Eleven Pakistani parents and one grandparent from nine different families, all caring for children with learning disabilities.indings The study identified features of the therapeutic encounter that were important to Pakistani parents and highlighted that there isothing to suggest that these are different to those of the majority population.onclusions The utility of the concept of cultural competence may be limited where it depends on concepts of ethnic groups as relativelyxed cultural groups with distinct and clearly defined sets of health beliefs and behaviours. Physiotherapists cannot prejudge health statusnd behaviours from an individual’s ethnic status. Instead there is a need to actively seek the understandings that are relevant to practice. In

ddition health service providers must develop and operate systems that ensure access, use and quality of care are the same at the point ofelivery regardless of patient ethnicity.

2011 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.

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eywords: Cultural competence; Ethnicity; Pakistani; Physiotherapy; Qual

ntroduction

The 2001 National Census revealed that the UK hasecome more culturally diverse than ever before with 8%f the population belonging to non-white ethnic groups [1].he changing nature of society poses challenges for all healthare professions in the UK, as patients present with diverseealth care needs and expectations [2–4].

‘Cultural competence’ is a widely accepted approach tongaging with diversity in healthcare. Physiotherapists haveeen exhorted to provide culturally competent care [5] andhis has become integrated into the core competencies for

hysiotherapists [6]. Most definitions of cultural competencere variations on that developed by mental health researchersore than 20 years ago, which defined cultural competence

∗ Tel.: +44 0114 222 8356; fax: +44 0114 222 8341.E-mail address: l.croot@sheffield.ac.uk

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031-9406/$ – see front matter © 2011 Chartered Society of Physiotherapy. Publisoi:10.1016/j.physio.2011.05.001

s ‘a set of congruent behaviours, attitudes and policies thatome together in a system, agency or among professionalsnd enables that system, agency, or those professionals toork effectively in cross-cultural situations’ [7]. The conceptf cultural competence is broad and definitions, models andtrategies for implementation continue to evolve [8–11].

Much of the cultural competence literature is predicatedn the idea that ethnic groups have a relatively stable identityith cultural ‘needs’ that can be learnt in order for health carerofessionals to develop the awareness, knowledge, skillsnd attitudes to respond empathically [8–12]. This is seenn the assumption that gaining knowledge of ‘other’ culturess an appropriate response to an ethnically diverse popula-ion. The impact of this thinking on practice is manifested inhe expressed desire for information on the cultural needs of

atients, e.g. Yeowell [13].

One of the aims of the present study was to inform physio-herapy practice by describing the needs of Pakistani parents

hed by Elsevier Ltd. All rights reserved.

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52 E.J. Croot / Physiot

aring for a child with learning disabilities. This paper willxamine the relevance of the concept of cultural competencen relation to these findings.

ackground to the study

The proportion of people from Pakistani and Bangladeshiommunities with profound multiple learning disabilitiesPMLD) in the UK is rising [14]. People with PMLD have:xtremely delayed intellectual and social functioning; lim-ted ability to engage verbally; often require those who areamiliar with them to interpret their communication intentnd frequently have an associated medical condition whichay include neurological problems, and physical or sensory

mpairments [15]. Many people with PMLD require ongoinghysiotherapy. The majority of children with disabilities areared for by their families within their own home [16] and sohysiotherapists work closely with family carers. This studyas designed to explore how Pakistani families caring for a

hild with learning disabilities derived meaning from child-ood disability but it also provided an opportunity to inves-igate their care needs and these are reported in this paper.

ethods

A qualitative study was carried out with Pakistani parentsiving in a Northern city in the UK and caring for chil-ren with learning disabilities [17]. A constructivist approachas used. This approach allows exploration of the ways inhich personal understandings and life experiences shape

ctions and acknowledges that peoples’ understanding ofheir lives are multiple and complex [18]. The study usedn depth interviews to explore perspectives on the causes ofisability, caring for a disabled child and experiences of sup-ort services. Results explicating beliefs about the causes ofisability have been described elsewhere [19].

Ethical approval for the study was obtained from the Northheffield Research Ethics Committee and the protocol waslso reviewed by the relevant health trust.

The study was conducted by the author, a researcher with background in physiotherapy and experience of work-ng closely with family carers of children with learningisabilities in the UK and overseas. Two co-investigatorsho initially volunteered to join a steering group for theroject later received training in interview skills to enablehem to assist in the cross-language data collection. Theo-investigators received four two hour training sessions innterview skills, two of which were attended by a qualita-ive researcher fluent in Urdu and Punjabi and therefore ableo advise on appropriate terms, phrases and wording to use

hen interviewing on this topic. The co-investigators wereakistani mothers with disabled children.

A purposive sampling strategy was used to select partic-pants. Purposive sampling is that in which individuals are

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98 (2012) 351–356

elected because they exhibit certain characteristics relevanto the central themes that the research wishes to explore [20].or example, the literature review identified the country inhich an individual grew up as an important factor in shap-

ng an individual’s beliefs and values. Therefore the samplingrame included mothers who had grown up in Pakistan andhose who had grown up in the UK. Individuals were eligibleor inclusion in the study if they, or their parents, had beenorn in Pakistan and they had a child with learning disabil-ties. Children with learning disabilities were identified byonsultant diagnosis or by the child’s placement in a schoolor children with learning disabilities.

English speaking participants were recruited by healthare professionals and education staff from schools forhildren with severe learning disabilities and from a childevelopment centre. Further participants were recruited byhe co-ordinator of a local support group for Asian parents ofisabled children. Parents were given information about thetudy and with their permission the author contacted them tobtain written consent to take part in the study.

Non-English speaking participants were recruited by onef the following:

Bilingual staff working at a child development centre. Bilingual support staff working at the special schools men-

tioned above. Spouses who had already been interviewed in English.

Potential participants were contacted by telephone by onef the above. They were given a double-sided informationheet written in English and Urdu and with their permissionhe author, working with an interpreter or co-investigator,btained written consent.

Parents speaking Urdu or Punjabi were interviewed eithery the researcher in English with an interpreter translating tohe relevant language, or by one of the co-investigators whoonducted the interview in the relevant language.

All interviews except one took place in participants’omes; one interview took place at the participant’s work-lace. Eleven parents and one grandparent from nine differentamilies were interviewed. All participants described them-elves as Muslims from a Sunni background; however threearticipants described themselves as non-practicing Mus-ims. The ages of the children ranged from four to 16 years.iagnoses included developmental delay, cerebral palsy,

utism and other syndromes. Details of participant charac-eristics are given in Table S1.

ata analysis

All interviews were taped, transcribed and translatedndependently [21]. All names were changed on transcrip-

ion. Translated transcripts were checked against the originalecording in order to verify accuracy of translation. ATLAS.tiScientific Software Development, Berlin) was used to man-ge and organise the data. Data were coded and codes were

E.J. Croot / Physiotherapy

Translation and transcri ption into Word files.

↓

First readi ng of hard copy and correc tions

↓

Development of coding frame

↓

Word files loaded into ATLAS.ti

↓

Evolution of coding frame through inductive/deductive cycles

↓

Cod es grouped into preliminary themes

↓

Descriptive acc ount of themes produced

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Themes grouped in to three overarching con structs

↓

Detailed acc ount of constru cts of support, identity and coping produced

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ig. 1. The process of data analysis.

rouped together into themes as illustrated in Fig. 1 [22].escriptive accounts of each theme were presented in aetailed and structured way and illustrated by quotations fromhe original data. On reviewing these accounts in line with theesearch aims, the higher level constructs of identity, supportnd coping were identified. Data were recoded in an iterativerocess in relation to these higher level codes. The resultselating to the construct of support are presented here.

esults

This section describes characteristics of the therapeuticncounter that participants felt were important. There is veryittle about perceived quality of care in participants’ narra-ives, instead parents focussed on the relationship betweenrofessionals and participants. Not all of the examples usedefer to physiotherapy services however each one illustrateshe features of encounters with healthcare professionals thatarticipants found significant.

eing listened to and having expertise recognised

Parents spoke about the importance of feeling that pro-essionals listened to them and recognised their expertise inaring for their child. The age of children in the study ranged

ato

98 (2012) 351–356 353

rom four to 16 years and so all parents had considerablexpertise as care givers for their children.

I understand what he needs but they didn’t know.” (Jamilla)

ontrol of care

Parents retained control of their child’s care, however thereere differences in the extent to which they could do this inartnership with professionals. For example two parents hadoncerns that their children did not eat school meals. One (sin-le) parent did not speak English so decided independentlyo take her child to school for the afternoon only so that sheould give him his lunch. This parent had a car which meanthat she was not reliant on school transport. In contrast thether parent had a husband who spoke fluent English and heas able to liaise with school staff to arrange that the familyould send food from home for their child to eat at lunchtime.

I was going to drop him off at 1.00 p.m. today because Ion’t want him to go in the mornings any more because heoesn’t eat at school, I want him to go just in the afternoons.”Asma)

Because they don’t eat the school meals, so they [schooltaff and husband] say themselves that I send their lunches.”Jamilla)

relationship of trust and mutual respect

Parents spoke about the need to develop a relationshipf trust with people who would be providing care for theirhildren. Consistency of care was key to this because of timeaken for parents to develop and maintain this relationship ofrust.

You have to build a relationship up like with schoolteachersnd people who look after Nadeem, you build that relation-hip up with them and then you can get on.” (Farhat)

onesty

Several parents felt that professionals had not been honestith them in the past, specifically around the time of theiagnosis.

I mean like when he was born obviously they will havenown by just looking at him, they will have known he hadot a problem but they didn’t tell us.” (Shoeb)

I would have liked to say that somebody would have tolde that he was going to be in a wheelchair for the rest of his

nd he’s going to go to a special school but nobody told mehat. It just came in stages. But then again is that a good thingr a bad thing because if they tell you then and it comes as a

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54 E.J. Croot / Physiot

hock to you? So doctors are just trying to tell you [pause] Ihink they tell you slowly by slowly as well.” (Farhat)

This did not appear to be a specific language issue as itffected parents who were fluent in English. It is likely thathe uncertainty parents experienced when the disability wasisclosed may have been due to real uncertainty by healthcarerofessionals in predicting future outcomes for the childrenather than poor communication. However it is clear that nei-her parent fully understood this which may have seriousmplications for their relationships with professionals. Anarlier study with South Asian parents of disabled childrenound that parents who perceived that they had received aoorly conducted disclosure were more likely to experienceong term problems with family acceptance of the disabledhild, the uptake of benefits, parental awareness and the usef family support services [23].

on-judgemental

Parents wanted services to be provided in a manner whichid not make them feel different or inferior.

They [service provider] don’t make us feel as any different,e’re about same as them.” (Farhat)

They related experiences where hospital staff had treatedheir concerns abruptly. This was frustrating and they viewedhese professionals as insensitive and incompetent, factorshich influenced these parents’ future choices about the usef services.

Once, in the Children’s Hospital a doctor was asking meuch questions that I got fed up, and I thought he would notet me go. . . . I said that, ‘you are asking me such questionshat even you could not be able to answer these questions, inpite of your higher educational qualifications and specialisedrofessional study courses. I have not made my children illnd sick’.” (Rabia)

enuine concern for welfare of the child

Parents described situations when they felt that profession-ls involved in their child’s care did not fully understand theironcerns or the complexity of their child’s problems. Theyelt that these professionals were not in a position to advisehether the benefits of an intervention outweighed the risks

or the child and the family. As a result some parents had notelt supported in their decisions about medical issues and hadeen reluctant to follow medical or therapy advice.

That’s the whole point of the operation because the boneending is causing stress on his ankle and his knee, it’s like

ending, you know. . .we were really concerned to be honest.ersonally, I don’t want him to have it really, because he’sot really, I don’t think he’s capable of going through it all, Ion’t know what we’re going to do.” (Shoeb)

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98 (2012) 351–356

elevant goals of treatment

Parents weighed the perceived benefits of treatment forhemselves, their child and their family when decidinghether to follow therapy advice. In some cases they didot feel that goals of treatment were relevant to their fam-ly life and so they chose to disregard therapy advice. Forxample one parent of two autistic boys had been told to tryo follow a routine with his sons. He could see why routineas important to school staff but could not see how it wouldenefit his sons or the family and so he ignored the advice head been given.

Well at school they’re restricted aren’t they? They’re toldo sit down every time and [inaudible] this behavioural man-gement thing to sort his behaviour out like. ‘Don’t do this’nd ‘don’t do that’, which they’ve got to because they can’tet them all do what they want, they wouldn’t get anywhereo that sort of thing.” (Shoeb)

We don’t have any particular set routines. We’ve been told too that [develop and stick to routine] but they’re both differento we let them have their freedom and they don’t get that atchool, so they raid the fridge and take whatever they want.”Shoeb)

iscussion

This study set out to provide empirical evidence about theare needs of Pakistani parents with a child with learningisabilities. The results are striking in that there is nothing touggest that the care needs of parents of Pakistani heritagere any different to those of the majority population. Thesendings tentatively suggest that care needs of parents caringor a child with learning disabilities are universal [24]. Thats, all parents of children with learning disabilities regard-ess of ethnicity, need to feel that: they are listened to andheir expertise is valued; they retain control of their child’sare; they can establish a relationship of trust and mutualespect; professionals are honest with them; care is providedn a way that is non-judgemental; professionals demonstrate

genuine concern for their child and that professionals setelevant goals of treatment.

This inevitably leads to questions about the relevance ofultural competence to the care of this patient populationnd draws attention to some of the shortcomings inherentn the concept of cultural competence. Cultural competenceas been criticised for its focus on an essentialist notion ofthnicity [25]. Essentialism in this context is ‘the process byhich particular groups come to be described in terms of

undamental, immutable characteristics, inherent within anndividual or social group which determine their nature and

he manner in which that nature is expressed’ [26]. That is,ultural competence is based on the assumption that ethnicroups are constructed as cultural groups marked out by theirommon cultural heritage, homogeneity and distinctiveness

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rom other ethnic groups. This study suggests that the careeeds of Pakistani parents are not distinct from those of theajority population. Therefore the utility of the concept of

ultural competence may be limited where it depends ononcepts of ethnic groups as relatively fixed cultural groupsith clearly defined sets of health beliefs and behaviours

27].Discarding the idea of ‘culture’ as static and homogenous

oes not mean discounting cultural processes completelyut instead viewing them as one of a set of influences onealth and health behaviours. Neither does it mean ignor-ng what ethnicity might mean to some individuals in certainircumstances [25]. Rather it means that therapists cannotrejudge health status and behaviours from an individual’sthnic status. Instead we need to actively seek the understand-ngs that are relevant to our practice. We need to establishather than assume that certain preferences and practicesre significant to patients [28]. This will allow therapists toecognise other aspects of a patient’s identity, for example,ender and age, and to consider how these mediate interac-ions during treatment. At the level of the individual therapist,here are aspects of certain models of culturally competencehat have something to offer in providing a framework forhis detailed assessment. For example, Leininger’s Sunrise

odel [8] could be used to guide the therapist to considerhe extent to which social, economic, religious, spiritual,hilosophical, kinship or educational factors influence anndividual’s health, their understandings of healthcare andnteractions with healthcare providers. The Papadopoulos,ilki and Taylor Model for Developing Cultural Compe-

ence [11] whilst rooted in the idea of learning ‘cultural’nowledge, also includes a consideration of power, suchs professional power, when considering interactions withatients. This is particularly pertinent in the light of thistudy’s findings about the importance to parents of havingheir expertise recognised and valued.

Shifting the focus away from the idea of distinct and dif-erent care needs of a population creates a new imperativeor hospitals and other health service providers to ensure thathere are systems in place that promote fair and equitablereatment to all patients regardless of designated ethnicity.he failure of hospitals and providers to work equally effec-

ively in languages other than English is a major factor in theeduced levels of access to healthcare of many individuals29] and one that service providers must address to ensure thatll patients can understand information and explanations andxpress their own requirements effectively so that therapistsnderstand them.

onclusion and recommendations

This paper describes the care needs of Pakistani parentsaring for children with learning disabilities. The study foundo evidence that the care needs of parents of Pakistani her-tage are different to those of the majority population.

98 (2012) 351–356 355

Physiotherapy education must reinforce the idea that therere heterogeneous groups with diverse social aspirations andnterests. For individual physiotherapists appropriate ser-ice provision seems to depend on an understanding of theifestyle, beliefs, attitudes and family and social relationshipsf the patients concerned.

However perhaps more important is the need for hospitalsnd health service provider institutions to develop and operateystems that ensure access, use and quality of care are theame at the point of delivery regardless of patient ethnicity.

In addition researchers need to ensure reflexivity in theirork that enables them to remain open to the complex and

ituational nature of ethnic identity.

cknowledgements

The author would like to thank the service users for theiraluable contribution and Professor G. Grant, Professor N.athers and Dr. C. Cooper for their contribution and support

o the work.

thical approval: North Sheffield Research Ethics Commit-ee, protocol reference number NS2002 11 1516.

unding: NHS Executive Trent Region research training fel-owship.

onflict of interest: None.

ppendix A. Supplementary data

Supplementary data associated with this article cane found, in the online version, at doi:10.1016/j.physio.011.05.001.

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