Chapter 3: Findings

Chapter 3: Findings

Articles for Inclusion

                A total of twelve sources that included eleven studies and one government report fitted the inclusion criteria.

Data Extraction

Data extraction is the sourcing and recording of information and data relevant to the chosen articles. This systematic study used the tabulation form in data extraction to provide a summary of the chosen articles, as shown in the table above. The tabulation extraction tool ensured that the review focused on the authors, title, outcome measurement, time or period characteristics, and results.

Data Synthesis

This systematic review focused on providing data from the included studies and summarizing the results and findings from the studies. The findings and results of this review were analyzed using the narrative methods as the studies were erogenous. Narrative analysis a statistical type used for heterogeneous studies, as was the case for this review.

Quality Assessment of the Included Studies

This systematic review included twelve studies with different characteristics depending on the research designs and methods used. Two articles are systematic reviews (Greenwood et al., 2015; Robertson et al., 2019). Three articles are case studies (Emerson et al., 2012; Evandrou et al., 2016; Sim & Alison, 2005). Two articles are cross-sectional studies (McGrother et al., 2002; Tyrer et al., 2019). The study by Benomir et al. (2016) is a quantitative descriptive study; Bhardwaj et al. (2012) used mixed methods in their study, and that by Hassiotis (2020) is an action research article. One article was an experiential design (Heer et al., 2012) and one was a public report (Public Health England, 2016).

Ten studies were assessed using the JBI critical appraisal tool for cross-sectional studies, and two were analyzed using the critical appraisal tool for quantitative research. The JBI critical appraisal tool has eight questions with answers yes, no, or unclear with the provision of not applicable for few scenarios (JBI, 2016). The studies’ assessment entails clear identification of the criteria for inclusion, a detailed description of the subjects and setting, validity and reliability of exposure, objectives, and use of standard criteria of the ten articles. Moreover, confounding factors for the studies were identified, and the strategy statements for the confounding factors. Finally, the appropriate statistical analysis used in the studies is provided (JBI, 2016).

The tool was used to eliminate biasness in the study appraisal. A single reviewer would not eliminate this bias, but the supervisor’s presence was essential as a second reviewer, which improved the overall review process. The first three questions needed to be answered yes to ensure that the studies were of high quality. The fourth to eight questions in JBI critical tool did not carry as much weight in the studies’ quality assessment. However, there is a need to answer these questions to minimize biasness risks (JBI, 2016). The studies included in this systematic review were of high quality and provided the required information to achieve the study objectives and answer the research questions. The checklist table below shows the quality assessment of the ten studies.

The articles’ overall qualities were good as all of them fulfilled most of the requirements in the inclusion criteria. The articles were, therefore, included in the systematic review to carry out the study.

The other two sources, one that is a quantitative descriptive and the other, a public report, were analyzed using the critical appraisal tool for quantitative research. This tool is made up of seven questions. According to Jack et al. (2010), the questions are based on the sample representation, appropriateness of the design used, adequateness of the control group, biasness based on the extent of blindness, negative factors influence, completeness, and the credibility of the study results. The appraisal results for the two sources are as shown in the table below.

Study Sampling

                The article’s findings were classified into four main themes in answering the research questions and proving hypotheses. The distribution of the studies that addressed these themes in establishing aspects that lead to the disparities in the prevalence of learning disability and the uptake of learning disability services is shown in the table below.

Chapter 4: Discussion

Prevalence of Learning Disability in South Asian Populations in the UK

                Several studies addressed the prevalence of learning disabilities amongst South Asians in the United Kingdom (Emerson et al., 2012; Evandrou et al., 2016; Heer et al., 2012; McGrother et al., 2002; Public Health England, 2016; Robertson et al., 2019)

According to Heer et al. (2012), the prevalence of learning disability as described in the social scope is about three times higher in South Asian populations than any other ethnic group in the United Kingdom. The high prevalence can be attributed to factors such as higher genetic risk factors, poor maternity services uptake, and pervasive economic and social disadvantage amongst the people of South Asian origin in the UK (McGrother et al., 2002; Robertson et al., 2019).  However, the estimates in learning disability prevalence are dependent on how learning disability is defined, and this study considered the social definition of learning disability. Public Health England (2016) reports that there are no definitive records for individuals with learning disabilities in England. Nevertheless, estimations are based on the government departments’ combination of information on learning disability amongst people using specific services. Public Health England (2016) estimates that 2.5% of children in England have learning disabilities through a combination of data form the department of education on the special education needs. When it comes to adults, it is estimated that the prevalence is 4.4 people per 1000 population (Public Health England, 2016). The report also recognized that children associated with learning disabilities differ considerably amongst ethnic groups as identification rates are reported to be 25% or more than the national average and this is amongst the BAME communities (Public Health England, 2016). For this study focus in South Asian communities and these are reported at for children of Pakistani heritage, children of Bangladeshi heritage, and children of other Asian heritage. Such numbers indicate that the prevalence of learning disability amongst the South Asian population in the United Kingdom is higher than other communities and the nation’s average.

Evandrou et al. (2016) adds that there has been documentation of ethnic inequalities in reporting general health. Healthcare disparities have been witnessed in BAME communities when compared to the white British populations. The disparities have been associated with difference in socioeconomic status, health service access and use, and discrimination. The population of people of BAME communities in the UK especially in Wales and England grew from 2001 to 2011 by 6% with relatively younger age structure (Evandrou et al., 2016). Bhardwaj et al. (2012) supports the Public Heath of England’s statement that there are no reliable prevalence rates for people with learning disabilities from the South Asian community. However, through studies that examine the use of the learning disability services from the ethnic minority groups, more than half are people from the South Asian community. Such numbers make up about 2.7% of the total population in the UK (Bhardwaj et al., 2012). Emerson et al. (2012) add that severe learning disability conditions amongst children of the South Asian background in the UK is about three times more prevalent than other ethnic groups in the UK. Emerson et al. (2012) predicted a further increase in the number of people of South Asian origin with severe learning disability over twenty years. Emerson et al. (2012) and McGrother et al. (2002) link the differences in prevalence of learning disability amongst ethnic backgrounds to historical, social, and economic factors including poor housing, social deprivation, insufficient knowledge on learning disability, and environmental pollution.

Overall, the prevalence of people with learning disability in the social model scope which is all about the barriers created by the communities is seen to be different amongst the different ethnic communities in the United Kingdom. Research and reports indicate that there is a significant difference in prevalence of learning disabilities amongst the people of South Asian background compared to the other communities living in the UK. Most of the studies report that the prevalence is three times more and the significant difference can be attributed to several factors. The socioeconomic differences are the main factor and encompass all the others. Socioeconomic differences determine where people live, access to healthcare services, and the type of food they consume. Therefore, learning disability differences in prevalence is associated with the difference in socioeconomic status between the people of South Asian origin and the white British population.

Culture and Leaning Disability Services

The relationship between the cultural aspect and learning disability is existent as seen from different studies conducted in the United Kingdom thus proving hypothesis 1a (H1a). Several included studies prove that there is a relationship between the cultural aspect and learning disability services (Benomir et al., 2016; Bhardwaj et al., 2018; Heer et al., 2012; Greenwood et al., 2014; McGrother et al., 2002; Robertson et al., 2019; Sim et al., 2005).

According to Heer et al. (2012), the people from the South Asian community understanding of learning disability is based on their cultural and religious beliefs. Such understanding raises issues when such people access learning disability services since their needs may not be met. Clients may fail to comply with the treatment plans. Medical professionals may consider this non-compliance but on the part of the South Asian population, it might be a different understanding due to their culture. Robertson et al. (2019) argues that people from the South Asian communities have better awareness to general health service such as nursing care and doctors and limited awareness of the specialist care such as psychiatrists, psychologists, and speech therapy. Such analysis can be supported through the social model framework.

The social model of disability considers disability from the scope of societal barriers and culture has been identified as one of this barrier. Greenwood et al. (2014) in their study established that the culture of the carer can be a barrier to access of learning disability services. The cultural and religious aspects are associated with the people from the South Asian community in the UK using the services. Sim et al. (2005) add that belief structures amongst the South Asian communities for example fear of being stigmatized, alter-casting, and the past life wrong-doings in the Hindu culture and religion may limit the use of the services. The cultural aspects concerning being shamed that are attached to the access and use of care and social services also influence the uptake of learning disability services amongst the people of South Asia in the United Kingdom (Benomir et al., 2016). McGrother et al. (2002) and  Robertson et al. (2019) state that South Asians generally approach health professionals differently while some even avoid the healthcare services. Due to their culture, people from the South Asian communities in the UK opt to seek the services of traditional and religious healers in addressing issues related to learning disabilities (Bhardwaj et al., 2018). Therefore, the culture and religion create a barrier to access of the learning disability services. The cultural attitude of the South Asians in the United Kingdom increases the gap that exists in access of care services thus limiting access to services.

Provided that there are cultural boundaries, the life of the South Asian people revolves around religion and family. Sim et al. (2005) notes that the Pakistani and Indian families in the UK emphasise on the importance of family, religion, and friends as opposed to outsiders. When a family member therefore has disability, the families opt to provide treatment and care themselves. Such situations lead to negative attitude towards the use of learning disability services. Consequently, Heer et al. (2012) states that the most common stereotype amongst people from the South Asian communities is getting support for any problem from the extended family even in cases where professional help is required. Such stereotypes and misconceptions has led to South Asian professionals including doctors, nurses, and social workers getting minimum support while others are even rebuked. The cultural barriers are further exaggerated by language barrier (Heer et al., 2012; Sim et al., 2005). People from the South Asian community can therefore be considered to be facing double discrimination associated with their learning disability and cultural issues through stigmatization and isolation (Benomir et al., 2016; Bhardwaj et al., 2018). The South Asian people are guided by norms and expectations and this affect the way families from this group respond to learning disability and associated services. The cultural expectations are always different and conflict with the western culture and this leads to further complications (McGrother et al., 2002; Robertson et al., 2019). Many families within the community may want to take up the learning disability services but fear the judgment and stigmatization from the community members due to their culture.

In general, it can be evidenced that cultural and religious aspects play a vital role in how learning disability is viewed and the uptake of learning disability services amongst the people from the South Asian communities in the UK. The social model of disability emphasizes on social barriers in the definition of learning. The selected studies have shown that culture is a social barrier that limits access of services. Culture limits the people from the South Asian communities from getting learning disability services due to inadequate information, issues such as stigma, belief in family and family values, religious beliefs, and language barrier. People that seek learning disability services have been subjected to discrimination within their own communities (Benomir et al., 2016). Therefore, this fear leads to other people opting for the services of extended family members, religious leaders, and cultural healers. Cultural barriers are evidenced to be affecting access and use of learning disability services in two ways. One is that cultural barriers make it hard for people with learning disability within the community to access and use the services. Secondly, it affects the carers within the population in provision of services as they not supported within the community making it hard for them to deliver services. In dealing with this issue, cultural barriers need to be eliminated and the recommendations will provide some of the ways through which the cultural barriers can be eliminated with social work practice playing an important role in eliminating these barriers.

Demographic Characteristics of People of South Asian Origin and Uptake of Learning Disability Services

The second hypothesis was related to the relationship between the demographic characteristics of the people with learning disability and the uptake of services. Selected studies were also to prove that a relationship exists and this proved hypothesis 2a (H2a) (Evandrou et al., 2016; Heer et al., 2012; Greenwood et al., 2014; Sim et al., 2005; Tyrer et al., 2019).

Demographics related to the South Asian population from the United Kingdom that is focused in this study is related to age, gender, and language. Age and gender characteristics amongst the people of South Asian origin in the UK have an influence in the uptake of learning disability services. Sim et al. (2005) conducted a study with some of the interview questions focused on the basic demographic characteristics of service users of learning disability users amongst people of the BAME community in the UK including age, sex, language spoken, and religion. Generally, Sim et al. (2005) reported underutilization of learning disability services from people of BAME origin. Consequently, the authors reported that access to care services were limited by age as children and the elderly people in the population found it hard to access the services. Regarding gender, women amongst the community were also limited as the interviewers who were mostly carers reported less women than men used the learning disability services (Sim et al., 2005). Sim et al. (2005) also reported language barrier as the need for interpreting makes individuals from these communities no neglect the learning services. Most individuals from the South Asian community are reported to have no English comprehension and this leads to difficulty in service access and usage. Greenwood et al. (2014) also address the issue of language barrier as an ethnic demographic. In situations where language is a barrier most of the clients always favor carers that speak the same language as they do. The issue of language is associated with different issues in service uptake including information regarding the services, application for the services, and the service provision.

Heer et al (2012) examine the diversity amongst the South Asian community people as he states that these people are made up of groups that are different. While they might share the same cultures and beliefs, they have different beliefs since South Asians are made up of a variety of groups as previously described. “The Indian-Punjabi, Indian-Gujarati and Pakistani-Mirpuri” (Heer et al., 2012) have different beliefs, culture, and histories. The heterogeneity of these individuals influences the uptake of learning disability services as many people that believe that they are and heterogeneous group tend to discriminate against all of them.

Evandrou et al. (2016) also focused on demographics in reporting poor health outcomes including gender and age. The older population above sixty years find it difficult to access learning disability services. Evandrou et al. (2016) established that “Pakistani and Bangladeshi elders, both among men and women, experience a clear disadvantage compared with other ethnic groups.” Age can therefore be summarized as an important contributor to the disparity in access of learning disability services. However, on the gender demographics, Evandrou et al. (2016) reported broadly similar results regarding reporting of learning disability and assess and uptake of services. No significant differences were reported for learning disability services uptake amongst South Asian men and women in the UK (Evandrou et al., 2016). Generally, while age was established as a significant barrier to service access amongst South Asians, Evandrou et al. (2016) found that gender was not a barrier as they reported the same statistics for both genders. Tyrer et al. (2019) on their part addressed the issue of multimorbidity which is having other conditions in addition to intellectual disabilities. The authors based their studies on adults of ages 18-74 years. Moreover, the authors focused on the issue of gender, ethnicity and age as aspects of demographics in relation to intellectual or learning disabilities of UK populations.

Generally, it is essential to recognize that demographic characteristics of the people of South Asian origin in the United Kingdom play an important role in the uptake of learning disabilities by these individuals. Several studies have been seen to identify that age is an impacting factor in the uptake of learning disability services. Studies have identified that children and the elderly South Asians find it hard to access learning disability services since they are controlled by their families. On the issue of gender, cultural beliefs have also limited women uptake to the learning disability services. Language barrier was also identified as a demographic issue related to learning disability services uptake. South Asian people of the UK are made up of several groups of people as identified earlier and most are conversant with their language. Most learning disability services are provided through the UK English language and thus their inability to comprehend English makes service access and uptake difficult. The place of the women in these societies is still inferior compared to men and thus the South Asian females’ uptake of learning disability services is still limited compared to South Asian males.

Social Work and Inclusion in Learning Disability Services

The social model of disability focuses on removal of social barriers that limit people with disability from being equal with other people within the society. It is through social work that some of these barriers are removed. Social work is essential in helping these minority groups access and maintain learning disability services. Several included studies address the issue of social work and the inclusion and access to learning disability services (Bhardwaj et al., 2018; Emerson et al., 2012; Greenwood et al., 2014; Hassiotis, 2020; Heer et al., 2012; Robertson et al., 2019). Selected studies were also to prove that a relationship exists between social work practice and inclusion intro learning disability services and this proved hypothesis 3Ha.

According to Heer et al. (2012), support groups are important forms of outreach through which the South Asians with learning disability in the UK can be reached. The support groups are promoted by social workers who need to fight for the rights of these minority groups to access and be included in the learning disability services. Heer et al. (2012) add that the promotion of social inclusion can be the best way to achieve barrier elimination for more of these people to gain access to the learning disability services in the country. Through social work practice, social prejudices are eliminated and all the barriers that lead to devaluation of individuals from the South Asian origin and other minority groups in the United Kingdom (Bhardwaj et al., 2018). Greenwood et al. (2014) add that through social work services, the reasons for the low awareness of learning disability services amongst the people of South Asian origin with learning disabilities can be eliminated. Through social services the inclusion of minority groups in the nation’s disability budget is achievable as social workers fight for the human rights of these individuals.

Emerson et al. (2012) addresses the issue of social services and elimination of the social barriers through making better use of information. Inclusion in social services for the South Asian people of the United Kingdom is limited by information access and making use of the information as already addressed. Social work practice comes in handy and plays an integral role in ensuring that information is accessed and made better use. The authors wrote a “guidance for commissioners based on the data-driven reports published by the LDPHO.” In this guidance, issues related to what, why, and how the information can be made better and guides social workers on how information barriers can be eliminated to help South Asians in the UK to achieve access and inclusion to learning disability services. Bhardwaj et al. (2018) also support this concept of social work role in the inclusion of South Asians of the UK to learning disability services. Through making information available and this can include elimination of language barriers by utilizing social workers that come from these communities and understand the different South Asian languages. Social workers from these communities can make learning disability services information reach the South Asians easily thus promoting their inclusion and uptake of learning disability to match the UK White population.

Hassiotis (2020) provides and interesting concept related to social work and the inclusion of the South Asian people of the UK into learning disability services. The author addresses the concept of education where social work can advocate for these individuals to get education which can improve uptake of services by removing language barriers and inability to access information on the services. The author also advocates for social work research to address the gaps identified and explore further adaptations or developments and effectiveness of the interventions for the minority BAME communities in the United Kingdom. The systematic review by Robertson et al. (2019) addressed issues related to bridging the gap between access and use of learning disability services in the UK by focusing on how social services can bridge the gap by eliminating the barriers. Social workers can work to eliminate the cultural barriers by providing better information delivery to improve their uptake of the learning disability services.

Chapter 5: Conclusion

This systematic literature review has shown the dearth in literature relating to uptake and inclusion into learning services amongst South Asians in the United Kingdom and how the uptake and inclusion is different from the other communities. The focus was on the barriers that lead to the differences in service uptake and how social works plays a role in the elimination of the barriers. The study focused on the social model of disability. The social model of disability is based on the concept that disability results from the organizational aspects of a society rather than an individual’s difference or impairment. The social model of disability is related to social work practice as seen in this review based on the issue of social workers acting to remove the barriers that restrict the choices of the disabled individuals. The studies used were few to show and identify a clear pattern in the barriers that result in the significant differences in uptake and inclusion of learning disability services between the South Asian community as minorities and the other communities. Research and reports indicate that there is a significant difference in prevalence of learning disabilities amongst the people of South Asian background compared to the other communities living in the UK. Most of the studies report that the prevalence is three times more and the significant difference can be attributed to several factors.

It can be evidenced that cultural and religious aspects play a vital role in how learning disability is viewed and the uptake of learning disability services amongst the people from the South Asian communities in the UK. Demographics including gender, age, and language barrier were also found to influence the uptake of learning disability services amongst the people of South Asian origin in the United Kingdom. Finally, selected studies were also to prove that a relationship exists between social work practice and inclusion intro learning disability services. In sum, cultural factors and demographics act as barriers towards the uptake and inclusion into learning disability service amongst the people of South Asian origin in the Unpinned Kingdom. Social work also plays an important role in ensuring that these people are able to access and be included in these learning disability services through elimination of the barriers. Elimination of barriers includes fighting from the rights of these individuals and advocating for governmental policies that eliminate discrimination and promote inclusion.

Implications for Policy and Practice

The findings of this review have implications for social work policy and practice. The findings can be used by social workers to find information that can be used to advocate for policy changes to help the people form South Asian communities and other minority groups in the UK. The findings can also be use directly by policy makers to eliminate policies that promote exclusion and promote policies that include inclusion and eliminate discrimination of the disabled in the country. More research is required that compares the barriers and perceptions of the different ethnic groups regarding access and inclusion into learning disability social care services. Such research would make differences and similarities between groups clearer. Learning disability service founders need to recognise the common barriers and those that are specific to ethnic groups so that there can be improvement in service delivery which can improve access. For example, the plea to provide more information about the service is common to all ethnic groups. However, paying attention to the terminologies and content of information can be relevant towards elimination of barriers. Future research needs to focus on specific policies that can be improved to eliminate the social, cultural, economic, and political barriers.