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The care needs of Pakistani families caring for disabled children: how relevant is cultural competence?
Physiotherapy 98 (2012) 351–356
The care needs of Pakistani families caring for disabled children: how relevant 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
Abstract Objective To identify factors that Pakistani parents living in the UK and caring for children with learning disabilities felt were important components of their care and to discuss the relevance of the concept of cultural competence in the light of these findings. Design A qualitative study taking a constructivist approach to gain insight into participants’ experiences of health care provision. In depth interviews were used to explore the ways in which personal understandings and life experiences shaped the characteristics of the therapeutic encounter that participants identified as important. Data were analysed thematically. Setting A Northern city in England. Interviews took place in participant’s homes or work places. Participants Eleven Pakistani parents and one grandparent from nine different families, all caring for children with learning disabilities. Findings The study identified features of the therapeutic encounter that were important to Pakistani parents and highlighted that there is nothing to suggest that these are different to those of the majority population. Conclusions The utility of the concept of cultural competence may be limited where it depends on concepts of ethnic groups as relatively fixed cultural groups with distinct and clearly defined sets of health beliefs and behaviours. Physiotherapists cannot prejudge health status and behaviours from an individual’s ethnic status. Instead there is a need to actively seek the understandings that are relevant to practice. In addition health service providers must develop and operate systems that ensure access, use and quality of care are the same at the point of delivery regardless of patient ethnicity. © 2011 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. Keywords: Cultural competence; Ethnicity; Pakistani; Physiotherapy; Qualitative
Introduction The 2001 National Census revealed that the UK has become more culturally diverse than ever before with 8% of the population belonging to non-white ethnic groups [1]. The changing nature of society poses challenges for all health care professions in the UK, as patients present with diverse health care needs and expectations [2–4]. ‘Cultural competence’ is a widely accepted approach to engaging with diversity in healthcare. Physiotherapists have been exhorted to provide culturally competent care [5] and this has become integrated into the core competencies for physiotherapists [6]. Most definitions of cultural competence are variations on that developed by mental health researchers more than 20 years ago, which defined cultural competence ∗
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as ‘a set of congruent behaviours, attitudes and policies that come together in a system, agency or among professionals and enables that system, agency, or those professionals to work effectively in cross-cultural situations’ [7]. The concept of cultural competence is broad and definitions, models and strategies for implementation continue to evolve [8–11]. Much of the cultural competence literature is predicated on the idea that ethnic groups have a relatively stable identity with cultural ‘needs’ that can be learnt in order for health care professionals to develop the awareness, knowledge, skills and attitudes to respond empathically [8–12]. This is seen in the assumption that gaining knowledge of ‘other’ cultures is an appropriate response to an ethnically diverse population. The impact of this thinking on practice is manifested in the expressed desire for information on the cultural needs of patients, e.g. Yeowell [13]. One of the aims of the present study was to inform physiotherapy practice by describing the needs of Pakistani parents
0031-9406/$ – see front matter © 2011 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.physio.2011.05.001
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E.J. Croot / Physiotherapy 98 (2012) 351–356
caring for a child with learning disabilities. This paper will examine the relevance of the concept of cultural competence in relation to these findings.
Background to the study The proportion of people from Pakistani and Bangladeshi communities with profound multiple learning disabilities (PMLD) in the UK is rising [14]. People with PMLD have: extremely delayed intellectual and social functioning; limited ability to engage verbally; often require those who are familiar with them to interpret their communication intent and frequently have an associated medical condition which may include neurological problems, and physical or sensory impairments [15]. Many people with PMLD require ongoing physiotherapy. The majority of children with disabilities are cared for by their families within their own home [16] and so physiotherapists work closely with family carers. This study was designed to explore how Pakistani families caring for a child with learning disabilities derived meaning from childhood disability but it also provided an opportunity to investigate their care needs and these are reported in this paper.
Methods A qualitative study was carried out with Pakistani parents living in a Northern city in the UK and caring for children with learning disabilities [17]. A constructivist approach was used. This approach allows exploration of the ways in which personal understandings and life experiences shape actions and acknowledges that peoples’ understanding of their lives are multiple and complex [18]. The study used in depth interviews to explore perspectives on the causes of disability, caring for a disabled child and experiences of support services. Results explicating beliefs about the causes of disability have been described elsewhere [19]. Ethical approval for the study was obtained from the North Sheffield Research Ethics Committee and the protocol was also reviewed by the relevant health trust. The study was conducted by the author, a researcher with a background in physiotherapy and experience of working closely with family carers of children with learning disabilities in the UK and overseas. Two co-investigators who initially volunteered to join a steering group for the project later received training in interview skills to enable them to assist in the cross-language data collection. The co-investigators received four two hour training sessions in interview skills, two of which were attended by a qualitative researcher fluent in Urdu and Punjabi and therefore able to advise on appropriate terms, phrases and wording to use when interviewing on this topic. The co-investigators were Pakistani mothers with disabled children. A purposive sampling strategy was used to select participants. Purposive sampling is that in which individuals are
selected because they exhibit certain characteristics relevant to the central themes that the research wishes to explore [20]. For example, the literature review identified the country in which an individual grew up as an important factor in shaping an individual’s beliefs and values. Therefore the sampling frame included mothers who had grown up in Pakistan and those who had grown up in the UK. Individuals were eligible for inclusion in the study if they, or their parents, had been born in Pakistan and they had a child with learning disabilities. Children with learning disabilities were identified by consultant diagnosis or by the child’s placement in a school for children with learning disabilities. English speaking participants were recruited by health care professionals and education staff from schools for children with severe learning disabilities and from a child development centre. Further participants were recruited by the co-ordinator of a local support group for Asian parents of disabled children. Parents were given information about the study and with their permission the author contacted them to obtain written consent to take part in the study. Non-English speaking participants were recruited by one of the following: • Bilingual staff working at a child development centre. • Bilingual support staff working at the special schools mentioned above. • Spouses who had already been interviewed in English. Potential participants were contacted by telephone by one of the above. They were given a double-sided information sheet written in English and Urdu and with their permission the author, working with an interpreter or co-investigator, obtained written consent. Parents speaking Urdu or Punjabi were interviewed either by the researcher in English with an interpreter translating to the relevant language, or by one of the co-investigators who conducted the interview in the relevant language. All interviews except one took place in participants’ homes; one interview took place at the participant’s workplace. Eleven parents and one grandparent from nine different families were interviewed. All participants described themselves as Muslims from a Sunni background; however three participants described themselves as non-practicing Muslims. The ages of the children ranged from four to 16 years. Diagnoses included developmental delay, cerebral palsy, autism and other syndromes. Details of participant characteristics are given in Table S1.
Data analysis All interviews were taped, transcribed and translated independently [21]. All names were changed on transcription. Translated transcripts were checked against the original recording in order to verify accuracy of translation. ATLAS.ti (Scientific Software Development, Berlin) was used to manage and organise the data. Data were coded and codes were
E.J. Croot / Physiotherapy 98 (2012) 351–356
Translation and transcription into Word files. ↓ First reading of hard copy and corrections
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from four to 16 years and so all parents had considerable expertise as care givers for their children. “I understand what he needs but they didn’t know.” (Jamilla)
↓
Control of care Development of coding frame ↓ Word files loaded into ATLAS.ti ↓ Evolution of coding frame through inductive/deductive cycles ↓ Codes grouped into preliminary themes ↓ Descriptive account of themes produced ↓ Themes grouped into three overarching constructs ↓ Detailed account of constructs of support, identity and coping produced
Parents retained control of their child’s care, however there were differences in the extent to which they could do this in partnership with professionals. For example two parents had concerns that their children did not eat school meals. One (single) parent did not speak English so decided independently to take her child to school for the afternoon only so that she could give him his lunch. This parent had a car which meant that she was not reliant on school transport. In contrast the other parent had a husband who spoke fluent English and he was able to liaise with school staff to arrange that the family would 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 I don’t want him to go in the mornings any more because he doesn’t eat at school, I want him to go just in the afternoons.” (Asma) “Because they don’t eat the school meals, so they [school staff and husband] say themselves that I send their lunches.” (Jamilla)
Fig. 1. The process of data analysis.
grouped together into themes as illustrated in Fig. 1 [22]. Descriptive accounts of each theme were presented in a detailed and structured way and illustrated by quotations from the original data. On reviewing these accounts in line with the research aims, the higher level constructs of identity, support and coping were identified. Data were recoded in an iterative process in relation to these higher level codes. The results relating to the construct of support are presented here.
A relationship of trust and mutual respect Parents spoke about the need to develop a relationship of trust with people who would be providing care for their children. Consistency of care was key to this because of time taken for parents to develop and maintain this relationship of trust. “You have to build a relationship up like with schoolteachers and people who look after Nadeem, you build that relationship up with them and then you can get on.” (Farhat)
Results This section describes characteristics of the therapeutic encounter that participants felt were important. There is very little about perceived quality of care in participants’ narratives, instead parents focussed on the relationship between professionals and participants. Not all of the examples used refer to physiotherapy services however each one illustrates the features of encounters with healthcare professionals that participants found significant.
Being listened to and having expertise recognised Parents spoke about the importance of feeling that professionals listened to them and recognised their expertise in caring for their child. The age of children in the study ranged
Honesty Several parents felt that professionals had not been honest with them in the past, specifically around the time of the diagnosis. “I mean like when he was born obviously they will have known by just looking at him, they will have known he had got a problem but they didn’t tell us.” (Shoeb) “I would have liked to say that somebody would have told me that he was going to be in a wheelchair for the rest of his life, he’s going to need feeding, cleaning, his nappy changing and he’s going to go to a special school but nobody told me that. It just came in stages. But then again is that a good thing or a bad thing because if they tell you then and it comes as a
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shock to you? So doctors are just trying to tell you [pause] I think they tell you slowly by slowly as well.” (Farhat) This did not appear to be a specific language issue as it affected parents who were fluent in English. It is likely that the uncertainty parents experienced when the disability was disclosed may have been due to real uncertainty by healthcare professionals in predicting future outcomes for the children rather than poor communication. However it is clear that neither parent fully understood this which may have serious implications for their relationships with professionals. An earlier study with South Asian parents of disabled children found that parents who perceived that they had received a poorly conducted disclosure were more likely to experience long term problems with family acceptance of the disabled child, the uptake of benefits, parental awareness and the use of family support services [23]. Non-judgemental Parents wanted services to be provided in a manner which did not make them feel different or inferior. “They [service provider] don’t make us feel as any different, we’re about same as them.” (Farhat) They related experiences where hospital staff had treated their concerns abruptly. This was frustrating and they viewed these professionals as insensitive and incompetent, factors which influenced these parents’ future choices about the use of services. “Once, in the Children’s Hospital a doctor was asking me such questions that I got fed up, and I thought he would not let me go. . . . I said that, ‘you are asking me such questions that even you could not be able to answer these questions, in spite of your higher educational qualifications and specialised professional study courses. I have not made my children ill and sick’.” (Rabia)
Genuine concern for welfare of the child Parents described situations when they felt that professionals involved in their child’s care did not fully understand their concerns or the complexity of their child’s problems. They felt that these professionals were not in a position to advise whether the benefits of an intervention outweighed the risks for the child and the family. As a result some parents had not felt supported in their decisions about medical issues and had been reluctant to follow medical or therapy advice. “That’s the whole point of the operation because the bone bending is causing stress on his ankle and his knee, it’s like bending, you know. . .we were really concerned to be honest. Personally, I don’t want him to have it really, because he’s not really, I don’t think he’s capable of going through it all, I don’t know what we’re going to do.” (Shoeb)
Relevant goals of treatment Parents weighed the perceived benefits of treatment for themselves, their child and their family when deciding whether to follow therapy advice. In some cases they did not feel that goals of treatment were relevant to their family life and so they chose to disregard therapy advice. For example one parent of two autistic boys had been told to try to follow a routine with his sons. He could see why routine was important to school staff but could not see how it would benefit his sons or the family and so he ignored the advice he had been given. “Well at school they’re restricted aren’t they? They’re told to sit down every time and [inaudible] this behavioural management thing to sort his behaviour out like. ‘Don’t do this’ and ‘don’t do that’, which they’ve got to because they can’t let them all do what they want, they wouldn’t get anywhere so that sort of thing.” (Shoeb) “We don’t have any particular set routines. We’ve been told to do that [develop and stick to routine] but they’re both different so we let them have their freedom and they don’t get that at school, so they raid the fridge and take whatever they want.” (Shoeb)
Discussion This study set out to provide empirical evidence about the care needs of Pakistani parents with a child with learning disabilities. The results are striking in that there is nothing to suggest that the care needs of parents of Pakistani heritage are any different to those of the majority population. These findings tentatively suggest that care needs of parents caring for a child with learning disabilities are universal [24]. That is, all parents of children with learning disabilities regardless of ethnicity, need to feel that: they are listened to and their expertise is valued; they retain control of their child’s care; they can establish a relationship of trust and mutual respect; professionals are honest with them; care is provided in a way that is non-judgemental; professionals demonstrate a genuine concern for their child and that professionals set relevant goals of treatment. This inevitably leads to questions about the relevance of cultural competence to the care of this patient population and draws attention to some of the shortcomings inherent in the concept of cultural competence. Cultural competence has been criticised for its focus on an essentialist notion of ethnicity [25]. Essentialism in this context is ‘the process by which particular groups come to be described in terms of fundamental, immutable characteristics, inherent within an individual or social group which determine their nature and the manner in which that nature is expressed’ [26]. That is, cultural competence is based on the assumption that ethnic groups are constructed as cultural groups marked out by their common cultural heritage, homogeneity and distinctiveness
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from other ethnic groups. This study suggests that the care needs of Pakistani parents are not distinct from those of the majority population. Therefore the utility of the concept of cultural competence may be limited where it depends on concepts of ethnic groups as relatively fixed cultural groups with clearly defined sets of health beliefs and behaviours [27]. Discarding the idea of ‘culture’ as static and homogenous does not mean discounting cultural processes completely but instead viewing them as one of a set of influences on health and health behaviours. Neither does it mean ignoring what ethnicity might mean to some individuals in certain circumstances [25]. Rather it means that therapists cannot prejudge health status and behaviours from an individual’s ethnic status. Instead we need to actively seek the understandings that are relevant to our practice. We need to establish rather than assume that certain preferences and practices are significant to patients [28]. This will allow therapists to recognise other aspects of a patient’s identity, for example, gender and age, and to consider how these mediate interactions during treatment. At the level of the individual therapist, there are aspects of certain models of culturally competence that have something to offer in providing a framework for this detailed assessment. For example, Leininger’s Sunrise Model [8] could be used to guide the therapist to consider the extent to which social, economic, religious, spiritual, philosophical, kinship or educational factors influence an individual’s health, their understandings of healthcare and interactions with healthcare providers. The Papadopoulos, Tilki and Taylor Model for Developing Cultural Competence [11] whilst rooted in the idea of learning ‘cultural’ knowledge, also includes a consideration of power, such as professional power, when considering interactions with patients. This is particularly pertinent in the light of this study’s findings about the importance to parents of having their expertise recognised and valued. Shifting the focus away from the idea of distinct and different care needs of a population creates a new imperative for hospitals and other health service providers to ensure that there are systems in place that promote fair and equitable treatment to all patients regardless of designated ethnicity. The failure of hospitals and providers to work equally effectively in languages other than English is a major factor in the reduced levels of access to healthcare of many individuals [29] and one that service providers must address to ensure that all patients can understand information and explanations and express their own requirements effectively so that therapists understand them.
Conclusion and recommendations This paper describes the care needs of Pakistani parents caring for children with learning disabilities. The study found no evidence that the care needs of parents of Pakistani heritage are different to those of the majority population.
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Physiotherapy education must reinforce the idea that there are heterogeneous groups with diverse social aspirations and interests. For individual physiotherapists appropriate service provision seems to depend on an understanding of the lifestyle, beliefs, attitudes and family and social relationships of the patients concerned. However perhaps more important is the need for hospitals and health service provider institutions to develop and operate systems that ensure access, use and quality of care are the same at the point of delivery regardless of patient ethnicity. In addition researchers need to ensure reflexivity in their work that enables them to remain open to the complex and situational nature of ethnic identity.
Acknowledgements The author would like to thank the service users for their valuable contribution and Professor G. Grant, Professor N. Mathers and Dr. C. Cooper for their contribution and support to the work. Ethical approval: North Sheffield Research Ethics Committee, protocol reference number NS2002 11 1516. Funding: NHS Executive Trent Region research training fellowship. Conflict of interest: None.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at doi:10.1016/j.physio. 2011.05.001.
References [1] Office for National Statistics. Census 2001. [2] Diver F, Molassiotis A, Weeks L. The palliative care needs of ethnic minority patients: staff perspectives. International Journal of Palliative Nursing 2003;9(August (8)):343–51. [3] Munoz C, Hilgenberg C. Ethnopharmacology: understanding how ethnicity can affect drug response is essential to providing culturally competent care. American Journal of Nursing 2005;105(August (8)):40–9. [4] Balarajan R. Ethnicity and variations in the nation’s health. Health Trends 1995;27(4):114–9. [5] Hunt M. Taking culture seriously: considerations for physiotherapists. Physiotherapy 2007;93:4. [6] The Chartered Society of Physiotherapy. Competence and capability resource pack, 2007. [7] Cross TL, Bazron BJ, Dennis KW, Isaacs MR. Towards a culturally competent system of care: a monograph on effective services for minority children who are severely emotionally disturbed. Washington, DC; 1989. [8] Leininger M. Culture care theory: a major contribution to advance transcultural nursing knowledge and practices. Journal of Transcultural Nursing 2002;13(3):189–92.
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[9] Giger JN, Davidhizar R. The Giger and Davidhizar transcultural assessment model. Journal of Transcultural Nursing 2002;13(3):185–8. [10] Campinha-Bacote J. The process of cultural competence in the delivery of healthcare Services: a model of care. Journal of Transcultural Nursing 2002;13(July (3)):81–4 [discussion 200-1]. [11] Papadopoulos I. The Papadopoulos,Tilki and Taylor model for the development of cultural competence in nursing. Journal of Health, Social and Environmental Issues 2003;4(1). [12] Campinha-Bacote J. The process of cultural competence in the healthcare services: a culturally competent model of care’; 2003. http://www.transculturalcare.net. [13] Yeowell G. What are the perceived needs of Pakistani women in the North west of England in relation to physiotherapy, and to what extent do they feel their needs are being met? Physiotherapy 2010;96(3):257–63. [14] Emerson E. Estimating future numbers of adults with profound multiple learning disabilities in England. Lancaster: Lancaster University; 2009. [15] Bellamy G, Croot E, Bush A, Smith A, Berry H. A study to define profound multiple learning disability (PMLD). British Journal of Learning Disability 2010;14(3):1–15. [16] Social Services Inspectorate. Services to disabled children and their Families. London: HMSO; 1994. [17] Croot EJ. Experiencing childhood disability: parenting children with high support needs in Pakistani families in Sheffield. Sheffield: University of Sheffield; 2005. [18] Guba EG, Lincoln YS. Fourth generation evaluation. Newbury, Park, CA: Sage; 1989. [19] Croot EJ, Grant G, Cooper CL, Mathers N. Experiencing childhood disability: parenting children with high support needs in Pakistani
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Available online at www.sciencedirect.com
The care needs of Pakistani families caring for disabled children: how relevant 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
Abstract Objective To identify factors that Pakistani parents living in the UK and caring for children with learning disabilities felt were important components of their care and to discuss the relevance of the concept of cultural competence in the light of these findings. Design A qualitative study taking a constructivist approach to gain insight into participants’ experiences of health care provision. In depth interviews were used to explore the ways in which personal understandings and life experiences shaped the characteristics of the therapeutic encounter that participants identified as important. Data were analysed thematically. Setting A Northern city in England. Interviews took place in participant’s homes or work places. Participants Eleven Pakistani parents and one grandparent from nine different families, all caring for children with learning disabilities. Findings The study identified features of the therapeutic encounter that were important to Pakistani parents and highlighted that there is nothing to suggest that these are different to those of the majority population. Conclusions The utility of the concept of cultural competence may be limited where it depends on concepts of ethnic groups as relatively fixed cultural groups with distinct and clearly defined sets of health beliefs and behaviours. Physiotherapists cannot prejudge health status and behaviours from an individual’s ethnic status. Instead there is a need to actively seek the understandings that are relevant to practice. In addition health service providers must develop and operate systems that ensure access, use and quality of care are the same at the point of delivery regardless of patient ethnicity. © 2011 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. Keywords: Cultural competence; Ethnicity; Pakistani; Physiotherapy; Qualitative
Introduction The 2001 National Census revealed that the UK has become more culturally diverse than ever before with 8% of the population belonging to non-white ethnic groups [1]. The changing nature of society poses challenges for all health care professions in the UK, as patients present with diverse health care needs and expectations [2–4]. ‘Cultural competence’ is a widely accepted approach to engaging with diversity in healthcare. Physiotherapists have been exhorted to provide culturally competent care [5] and this has become integrated into the core competencies for physiotherapists [6]. Most definitions of cultural competence are variations on that developed by mental health researchers more than 20 years ago, which defined cultural competence ∗
Tel.: +44 0114 222 8356; fax: +44 0114 222 8341. E-mail address: [email protected]
as ‘a set of congruent behaviours, attitudes and policies that come together in a system, agency or among professionals and enables that system, agency, or those professionals to work effectively in cross-cultural situations’ [7]. The concept of cultural competence is broad and definitions, models and strategies for implementation continue to evolve [8–11]. Much of the cultural competence literature is predicated on the idea that ethnic groups have a relatively stable identity with cultural ‘needs’ that can be learnt in order for health care professionals to develop the awareness, knowledge, skills and attitudes to respond empathically [8–12]. This is seen in the assumption that gaining knowledge of ‘other’ cultures is an appropriate response to an ethnically diverse population. The impact of this thinking on practice is manifested in the expressed desire for information on the cultural needs of patients, e.g. Yeowell [13]. One of the aims of the present study was to inform physiotherapy practice by describing the needs of Pakistani parents
0031-9406/$ – see front matter © 2011 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.physio.2011.05.001
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E.J. Croot / Physiotherapy 98 (2012) 351–356
caring for a child with learning disabilities. This paper will examine the relevance of the concept of cultural competence in relation to these findings.
Background to the study The proportion of people from Pakistani and Bangladeshi communities with profound multiple learning disabilities (PMLD) in the UK is rising [14]. People with PMLD have: extremely delayed intellectual and social functioning; limited ability to engage verbally; often require those who are familiar with them to interpret their communication intent and frequently have an associated medical condition which may include neurological problems, and physical or sensory impairments [15]. Many people with PMLD require ongoing physiotherapy. The majority of children with disabilities are cared for by their families within their own home [16] and so physiotherapists work closely with family carers. This study was designed to explore how Pakistani families caring for a child with learning disabilities derived meaning from childhood disability but it also provided an opportunity to investigate their care needs and these are reported in this paper.
Methods A qualitative study was carried out with Pakistani parents living in a Northern city in the UK and caring for children with learning disabilities [17]. A constructivist approach was used. This approach allows exploration of the ways in which personal understandings and life experiences shape actions and acknowledges that peoples’ understanding of their lives are multiple and complex [18]. The study used in depth interviews to explore perspectives on the causes of disability, caring for a disabled child and experiences of support services. Results explicating beliefs about the causes of disability have been described elsewhere [19]. Ethical approval for the study was obtained from the North Sheffield Research Ethics Committee and the protocol was also reviewed by the relevant health trust. The study was conducted by the author, a researcher with a background in physiotherapy and experience of working closely with family carers of children with learning disabilities in the UK and overseas. Two co-investigators who initially volunteered to join a steering group for the project later received training in interview skills to enable them to assist in the cross-language data collection. The co-investigators received four two hour training sessions in interview skills, two of which were attended by a qualitative researcher fluent in Urdu and Punjabi and therefore able to advise on appropriate terms, phrases and wording to use when interviewing on this topic. The co-investigators were Pakistani mothers with disabled children. A purposive sampling strategy was used to select participants. Purposive sampling is that in which individuals are
selected because they exhibit certain characteristics relevant to the central themes that the research wishes to explore [20]. For example, the literature review identified the country in which an individual grew up as an important factor in shaping an individual’s beliefs and values. Therefore the sampling frame included mothers who had grown up in Pakistan and those who had grown up in the UK. Individuals were eligible for inclusion in the study if they, or their parents, had been born in Pakistan and they had a child with learning disabilities. Children with learning disabilities were identified by consultant diagnosis or by the child’s placement in a school for children with learning disabilities. English speaking participants were recruited by health care professionals and education staff from schools for children with severe learning disabilities and from a child development centre. Further participants were recruited by the co-ordinator of a local support group for Asian parents of disabled children. Parents were given information about the study and with their permission the author contacted them to obtain written consent to take part in the study. Non-English speaking participants were recruited by one of the following: • Bilingual staff working at a child development centre. • Bilingual support staff working at the special schools mentioned above. • Spouses who had already been interviewed in English. Potential participants were contacted by telephone by one of the above. They were given a double-sided information sheet written in English and Urdu and with their permission the author, working with an interpreter or co-investigator, obtained written consent. Parents speaking Urdu or Punjabi were interviewed either by the researcher in English with an interpreter translating to the relevant language, or by one of the co-investigators who conducted the interview in the relevant language. All interviews except one took place in participants’ homes; one interview took place at the participant’s workplace. Eleven parents and one grandparent from nine different families were interviewed. All participants described themselves as Muslims from a Sunni background; however three participants described themselves as non-practicing Muslims. The ages of the children ranged from four to 16 years. Diagnoses included developmental delay, cerebral palsy, autism and other syndromes. Details of participant characteristics are given in Table S1.
Data analysis All interviews were taped, transcribed and translated independently [21]. All names were changed on transcription. Translated transcripts were checked against the original recording in order to verify accuracy of translation. ATLAS.ti (Scientific Software Development, Berlin) was used to manage and organise the data. Data were coded and codes were
E.J. Croot / Physiotherapy 98 (2012) 351–356
Translation and transcription into Word files. ↓ First reading of hard copy and corrections
353
from four to 16 years and so all parents had considerable expertise as care givers for their children. “I understand what he needs but they didn’t know.” (Jamilla)
↓
Control of care Development of coding frame ↓ Word files loaded into ATLAS.ti ↓ Evolution of coding frame through inductive/deductive cycles ↓ Codes grouped into preliminary themes ↓ Descriptive account of themes produced ↓ Themes grouped into three overarching constructs ↓ Detailed account of constructs of support, identity and coping produced
Parents retained control of their child’s care, however there were differences in the extent to which they could do this in partnership with professionals. For example two parents had concerns that their children did not eat school meals. One (single) parent did not speak English so decided independently to take her child to school for the afternoon only so that she could give him his lunch. This parent had a car which meant that she was not reliant on school transport. In contrast the other parent had a husband who spoke fluent English and he was able to liaise with school staff to arrange that the family would 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 I don’t want him to go in the mornings any more because he doesn’t eat at school, I want him to go just in the afternoons.” (Asma) “Because they don’t eat the school meals, so they [school staff and husband] say themselves that I send their lunches.” (Jamilla)
Fig. 1. The process of data analysis.
grouped together into themes as illustrated in Fig. 1 [22]. Descriptive accounts of each theme were presented in a detailed and structured way and illustrated by quotations from the original data. On reviewing these accounts in line with the research aims, the higher level constructs of identity, support and coping were identified. Data were recoded in an iterative process in relation to these higher level codes. The results relating to the construct of support are presented here.
A relationship of trust and mutual respect Parents spoke about the need to develop a relationship of trust with people who would be providing care for their children. Consistency of care was key to this because of time taken for parents to develop and maintain this relationship of trust. “You have to build a relationship up like with schoolteachers and people who look after Nadeem, you build that relationship up with them and then you can get on.” (Farhat)
Results This section describes characteristics of the therapeutic encounter that participants felt were important. There is very little about perceived quality of care in participants’ narratives, instead parents focussed on the relationship between professionals and participants. Not all of the examples used refer to physiotherapy services however each one illustrates the features of encounters with healthcare professionals that participants found significant.
Being listened to and having expertise recognised Parents spoke about the importance of feeling that professionals listened to them and recognised their expertise in caring for their child. The age of children in the study ranged
Honesty Several parents felt that professionals had not been honest with them in the past, specifically around the time of the diagnosis. “I mean like when he was born obviously they will have known by just looking at him, they will have known he had got a problem but they didn’t tell us.” (Shoeb) “I would have liked to say that somebody would have told me that he was going to be in a wheelchair for the rest of his life, he’s going to need feeding, cleaning, his nappy changing and he’s going to go to a special school but nobody told me that. It just came in stages. But then again is that a good thing or a bad thing because if they tell you then and it comes as a
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shock to you? So doctors are just trying to tell you [pause] I think they tell you slowly by slowly as well.” (Farhat) This did not appear to be a specific language issue as it affected parents who were fluent in English. It is likely that the uncertainty parents experienced when the disability was disclosed may have been due to real uncertainty by healthcare professionals in predicting future outcomes for the children rather than poor communication. However it is clear that neither parent fully understood this which may have serious implications for their relationships with professionals. An earlier study with South Asian parents of disabled children found that parents who perceived that they had received a poorly conducted disclosure were more likely to experience long term problems with family acceptance of the disabled child, the uptake of benefits, parental awareness and the use of family support services [23]. Non-judgemental Parents wanted services to be provided in a manner which did not make them feel different or inferior. “They [service provider] don’t make us feel as any different, we’re about same as them.” (Farhat) They related experiences where hospital staff had treated their concerns abruptly. This was frustrating and they viewed these professionals as insensitive and incompetent, factors which influenced these parents’ future choices about the use of services. “Once, in the Children’s Hospital a doctor was asking me such questions that I got fed up, and I thought he would not let me go. . . . I said that, ‘you are asking me such questions that even you could not be able to answer these questions, in spite of your higher educational qualifications and specialised professional study courses. I have not made my children ill and sick’.” (Rabia)
Genuine concern for welfare of the child Parents described situations when they felt that professionals involved in their child’s care did not fully understand their concerns or the complexity of their child’s problems. They felt that these professionals were not in a position to advise whether the benefits of an intervention outweighed the risks for the child and the family. As a result some parents had not felt supported in their decisions about medical issues and had been reluctant to follow medical or therapy advice. “That’s the whole point of the operation because the bone bending is causing stress on his ankle and his knee, it’s like bending, you know. . .we were really concerned to be honest. Personally, I don’t want him to have it really, because he’s not really, I don’t think he’s capable of going through it all, I don’t know what we’re going to do.” (Shoeb)
Relevant goals of treatment Parents weighed the perceived benefits of treatment for themselves, their child and their family when deciding whether to follow therapy advice. In some cases they did not feel that goals of treatment were relevant to their family life and so they chose to disregard therapy advice. For example one parent of two autistic boys had been told to try to follow a routine with his sons. He could see why routine was important to school staff but could not see how it would benefit his sons or the family and so he ignored the advice he had been given. “Well at school they’re restricted aren’t they? They’re told to sit down every time and [inaudible] this behavioural management thing to sort his behaviour out like. ‘Don’t do this’ and ‘don’t do that’, which they’ve got to because they can’t let them all do what they want, they wouldn’t get anywhere so that sort of thing.” (Shoeb) “We don’t have any particular set routines. We’ve been told to do that [develop and stick to routine] but they’re both different so we let them have their freedom and they don’t get that at school, so they raid the fridge and take whatever they want.” (Shoeb)
Discussion This study set out to provide empirical evidence about the care needs of Pakistani parents with a child with learning disabilities. The results are striking in that there is nothing to suggest that the care needs of parents of Pakistani heritage are any different to those of the majority population. These findings tentatively suggest that care needs of parents caring for a child with learning disabilities are universal [24]. That is, all parents of children with learning disabilities regardless of ethnicity, need to feel that: they are listened to and their expertise is valued; they retain control of their child’s care; they can establish a relationship of trust and mutual respect; professionals are honest with them; care is provided in a way that is non-judgemental; professionals demonstrate a genuine concern for their child and that professionals set relevant goals of treatment. This inevitably leads to questions about the relevance of cultural competence to the care of this patient population and draws attention to some of the shortcomings inherent in the concept of cultural competence. Cultural competence has been criticised for its focus on an essentialist notion of ethnicity [25]. Essentialism in this context is ‘the process by which particular groups come to be described in terms of fundamental, immutable characteristics, inherent within an individual or social group which determine their nature and the manner in which that nature is expressed’ [26]. That is, cultural competence is based on the assumption that ethnic groups are constructed as cultural groups marked out by their common cultural heritage, homogeneity and distinctiveness
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from other ethnic groups. This study suggests that the care needs of Pakistani parents are not distinct from those of the majority population. Therefore the utility of the concept of cultural competence may be limited where it depends on concepts of ethnic groups as relatively fixed cultural groups with clearly defined sets of health beliefs and behaviours [27]. Discarding the idea of ‘culture’ as static and homogenous does not mean discounting cultural processes completely but instead viewing them as one of a set of influences on health and health behaviours. Neither does it mean ignoring what ethnicity might mean to some individuals in certain circumstances [25]. Rather it means that therapists cannot prejudge health status and behaviours from an individual’s ethnic status. Instead we need to actively seek the understandings that are relevant to our practice. We need to establish rather than assume that certain preferences and practices are significant to patients [28]. This will allow therapists to recognise other aspects of a patient’s identity, for example, gender and age, and to consider how these mediate interactions during treatment. At the level of the individual therapist, there are aspects of certain models of culturally competence that have something to offer in providing a framework for this detailed assessment. For example, Leininger’s Sunrise Model [8] could be used to guide the therapist to consider the extent to which social, economic, religious, spiritual, philosophical, kinship or educational factors influence an individual’s health, their understandings of healthcare and interactions with healthcare providers. The Papadopoulos, Tilki and Taylor Model for Developing Cultural Competence [11] whilst rooted in the idea of learning ‘cultural’ knowledge, also includes a consideration of power, such as professional power, when considering interactions with patients. This is particularly pertinent in the light of this study’s findings about the importance to parents of having their expertise recognised and valued. Shifting the focus away from the idea of distinct and different care needs of a population creates a new imperative for hospitals and other health service providers to ensure that there are systems in place that promote fair and equitable treatment to all patients regardless of designated ethnicity. The failure of hospitals and providers to work equally effectively in languages other than English is a major factor in the reduced levels of access to healthcare of many individuals [29] and one that service providers must address to ensure that all patients can understand information and explanations and express their own requirements effectively so that therapists understand them.
Conclusion and recommendations This paper describes the care needs of Pakistani parents caring for children with learning disabilities. The study found no evidence that the care needs of parents of Pakistani heritage are different to those of the majority population.
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Physiotherapy education must reinforce the idea that there are heterogeneous groups with diverse social aspirations and interests. For individual physiotherapists appropriate service provision seems to depend on an understanding of the lifestyle, beliefs, attitudes and family and social relationships of the patients concerned. However perhaps more important is the need for hospitals and health service provider institutions to develop and operate systems that ensure access, use and quality of care are the same at the point of delivery regardless of patient ethnicity. In addition researchers need to ensure reflexivity in their work that enables them to remain open to the complex and situational nature of ethnic identity.
Acknowledgements The author would like to thank the service users for their valuable contribution and Professor G. Grant, Professor N. Mathers and Dr. C. Cooper for their contribution and support to the work. Ethical approval: North Sheffield Research Ethics Committee, protocol reference number NS2002 11 1516. Funding: NHS Executive Trent Region research training fellowship. Conflict of interest: None.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at doi:10.1016/j.physio. 2011.05.001.
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