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The Challenges of Providing Culturally Competent Care Within a Disability Focused Team: A Phenomenological Exploration of Staff Experiences
Abstract
Purpose:
The study explored how service providers address the challenges of providing culturally competent care within disability services in the United Kingdom.
Design/method:
Focus groups and interpretative phenomenological analysis were used to explore the experiences of 20 service providers from a range of professions, working with South Asian families.
Results/findings:
Two superordinate themes emerged. The first concentrated on difficulties with language and communication and the challenges posed by the use of interpreters. The second included five subthemes that broadly described a five-stage process of dealing with barriers and engagement to service delivery, followed by reflections on the effort made to provide culturally competent care in the face of limited resources and training.
Discussion/conclusion:
The study makes recommendations for cultural competency within health and social care services.
... • The importance of cultural factors in shaping the experiences and perceptions of families (Fazil et al., 2002;Hatton et al., 2010;Heer et al., 2012;Selman et al., 2018;Aabe et al., 2019;Hussein et al., 2019). • The role of language and communication barriers in creating challenges for families and service providers (Fazil et al., 2002;Bywaters et al., 2003;Hatton et al., 2003;Raghavan and Waseem, 2007;Heer et al., 2014;Sandhu et al., 2016;Fox et al., 2017). ...
... The majority of studies included employed qualitative research methods, utilizing a range of methodological approaches such as; phenomenology (Hatton et al., 2010;Heer et al., 2012Heer et al., , 2014Heer et al., , 2015Munroe et al., 2016), collaborative approaches like action research (Fazil et al., 2002;Bywaters et al., 2003) and community-based participatory research (Fox et al., 2017;Selman et al., 2018;Aabe et al., 2019), intersectional frameworks (Rizvi, 2017;Rizvi, 2018), case-study approaches (Oliver and Singal, 2017), narrative approaches (Sandhu et al., 2016), and grounded theory (Hubert, 2006). While a few studies incorporated both quantitative and qualitative methods (Hatton et al., 2003;Hussein et al., 2019), four studies used quantitative survey designs through secondary data analysis (Devapriam et al., 2008), cross-sectional studies (Durà-Vilà and Hodes, 2009), and Delphi consultation (Bonell et al., 2012). ...
... procedures are conducted in English, as this can lead to confusion amongst parents/guardians who do not speak the language. Studies conducted by Heer et al. (2014), Fox et al. (2017), and Oliver and Singal (2017) emphasize the difficulties faced by families who are caring a child with a disability and do not speak the language of the host country, resulting in increased barriers to accessing services, communicating with providers, and navigating complex care systems. Similarly, Hubert (2006) found that although carers express satisfaction with services, these remain limited and inadequate. ...
This article explores the intersectionality of cultural and linguistic diversity and having a child with a disability, highlighting the unique challenges faced by parents from a minority ethnic background at this intersection. With increasing globalization, diverse and multicultural populations have become more prevalent, necessitating inclusive systems that address the unique needs of minority ethnic groups. Understanding the experiences of parents at the intersection of cultural and linguistic diversity and having a child with a disability is crucial for providing equitable access to education and support. This paper provides an overview of studies conducted in the UK, focusing on the challenges faced by culturally and linguistically diverse families from a minority ethnic background with children with disabilities and emphasizing factors such as religion, cultural beliefs, language barriers, and unique insights into specific populations. The findings emphasize the need for a comprehensive understanding of the intersectionality of cultural and linguistic diversity and disability to create inclusive educational environments that empower all children, irrespective of their cultural background or abilities.
... Asian people with intellectual disabilities, and whilst interpreters were frequently used, serious problems were noted with regard to their use (Heer, Rose, & Larkin, 2016). This included a failure of interpreting services to recognize the distinctions between different South Asian languages, interpreters claiming to be proficient in more than one language when they are not, feeling powerless and out of control in being unable to assess the quality of the interpretation, interpreters lacking familiarity with health-related concepts, altering the nature of the therapeutic relationship by introducing a greater potential for misinterpretations, and a lack of emotional sensitivity during consultations (Heer et al., 2016). ...
... Asian people with intellectual disabilities, and whilst interpreters were frequently used, serious problems were noted with regard to their use (Heer, Rose, & Larkin, 2016). This included a failure of interpreting services to recognize the distinctions between different South Asian languages, interpreters claiming to be proficient in more than one language when they are not, feeling powerless and out of control in being unable to assess the quality of the interpretation, interpreters lacking familiarity with health-related concepts, altering the nature of the therapeutic relationship by introducing a greater potential for misinterpretations, and a lack of emotional sensitivity during consultations (Heer et al., 2016). Service providers further perceived that caregiving was contained within the family environment, meaning that often service providers were unaware of the needs of South Asian families, with families delaying making contact with services until situations reached crisis point (Heer et al., 2016). ...
... This included a failure of interpreting services to recognize the distinctions between different South Asian languages, interpreters claiming to be proficient in more than one language when they are not, feeling powerless and out of control in being unable to assess the quality of the interpretation, interpreters lacking familiarity with health-related concepts, altering the nature of the therapeutic relationship by introducing a greater potential for misinterpretations, and a lack of emotional sensitivity during consultations (Heer et al., 2016). Service providers further perceived that caregiving was contained within the family environment, meaning that often service providers were unaware of the needs of South Asian families, with families delaying making contact with services until situations reached crisis point (Heer et al., 2016). However, it is not clear to what extent the views expressed by the service providers are in themselves influenced by stereotyping or discrimination. ...
Background:
People with from minority ethnic communities face inequalities in health and health care. This systematic review considers the question of what we know about the health and health care of children and adults with intellectual disabilities from ethnic minority communities in the UK.
Method:
Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes.
Results:
Twenty-three studies were identified, most commonly focusing on South Asian communities. Very little information was identified on physical health or physical health care, with the identified evidence tending to focus on mental health care, access to specialist intellectual disability services, and inpatient services.
Conclusion:
Little is known about the health status of people with intellectual disabilities from minority ethnic groups in the UK. It is clear that they may experience barriers to accessing specialist intellectual disability services and other forms of health care.
... However, communication is one of the most difficult challenges in a culturally diverse healthcare setting. In fact, non-verbal communication is as important as verbal communication (Heer et al., 2016), and effective communication is required to ensure culturally acceptable communication because it increases client trust and promotes teamwork among members (Ioan et al., 2020;Javanmard et al., 2017). Thus, patients with different cultural and linguistic backgrounds experience numerous obstacles and use healthcare services less frequently than the host communities (Khatri and Assefa, 2022;WHO, 2018). ...
... To assess trust in healthcare institutions and medical doctors, or how much they agree with specific statements, we asked respondents to rate their agreement with statements (e.g., "How much do you trust..."). Responses were on a ten-point scale, with one (1) indicating "no trust at all or do not agree at all" and ten (10) indicating "a lot of trust or totally agree". The Statistical Package for the Social Sciences was used to analyze the data (SPSS version 21.0) (IBM, 2012). ...
In this study, we aimed to examine the healthcare preferences and perspectives of citizens in the Western Balkans (namely Albania,
North Macedonia, Kosovo, Montenegro, Serbia, and Bosnia and Herzegovina), as well as their trust toward medical professionals of
various genders and ages. Almost 4,000 citizens (N = 3,789) of six countries in the Western Balkans (Albania, North Macedonia, Kosovo,
Montenegro, Serbia, and Bosnia and Herzegovina) were surveyed using a self-reported questionnaire in this inter-country cross-sectional
study.
Most of the participants state that their ethnicity (86%) or religion (89%) has no effect on receiving services in healthcare institutions
when the doctor is from a different ethnicity or religion (p < 0.05). One-third of the study’s participants stated that they don’t necessarily
prefer to be treated by medical doctors who approach all patients of different nationalities equally.
Finally, this article demonstrates that the majority of Balkan citizens had no disparities when receiving medical care from a medical
doctor of a different ethnicity or religion. About one-third of the research participants nurture tolerance and diversity as a behavior
culture and do not want to be treated by a doctor who discriminates against patients of different nationalities.
... People from ethnic minorities with a learning disability face challenges accessing healthcare, leading to the underuse of routine and preventative services (Scott and Havercamp 2014;Bershadsky et al. 2014). Barriers include inadequate language accommodations, as well as a lack of cultural and religious sensitivity (Bonell et al. 2011;Heer, Rose, and Larkin 2016;Robertson et al. 2019). ...
Background: People with a learning disability from ethnic minorities experience barriers in their access to healthcare services and poorer health outcomes. This study aimed to explore the factors that contribute to these barriers and to better understand how they can be reduced.
Methods: Twenty ‘experts by experience’ took part in experience‐based co‐design workshops to ascertain how lived experiences related to findings from a co‐designed scoping review. Audio recordings were transcribed and analysed using framework analysis.
Findings: Self‐advocates and carers experienced discrimination within a range of healthcare settings; however, recognising and understanding the source was difficult. Many people reported a lack of reasonable adjustments or support services that considered their ethnic identities. Participants also experienced isolation and stigma within their own family and community networks. Access to healthcare was adversely affected by COVID‐19. Many people were unaware of the Learning Disability Register and there was insufficient support when transitioning between healthcare services.
Conclusions: Services can be improved by effective communication, continuity of care and an enhanced understanding of the experiences of learning disability across different ethnic groups. Understanding an individual's needs and preferences from the first point of contact is important for the allocation of resources.
... (Fumnimother)(Munroe et al., 2016, p. 807) I have to look after her 24 h a day; I can never leave her on her own at home at all. (MISD3, Carer)(Hatton et al., 2009 p. 67)Heer et al. (2016) found that carers are often reluctant to seek help until they reach a crisis point.…a reluctance to seek help resulting in families delaying contact with services until situations reached crisis point and could no longer be contained within the family.(Heer ...
Background
People with a learning disability face health inequality. Those from ethnic minority backgrounds with a learning disability face ‘double discrimination’ as members of two marginalised groups.
Methods
This codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Three electronic databases were searched for UK studies from January 1990 to June 2022. Qualitative data from 28 studies were analysed using thematic framework analysis.
Findings
There was an overarching theme of ‘culture, choice and conflicts of control’, which related to the variable preferences for involvement in healthcare decisions. Cultural and individual factors impacted upon experience, with themes relating to ‘misunderstanding and mistrust’, ‘discrimination and stigma’, ‘isolation’, ‘feelings of shame and blame’, ‘burdens of care’ and ‘carer wellbeing’. Factors associated with healthcare‐seeking and care provision are described in the themes ‘triangles of care’, ‘community networks’ and ‘adaptive communication’.
Conclusions
People from ethnic minority backgrounds with learning disability experience complex barriers which influence their healthcare experiences. Recognising and understanding discrimination can be difficult for people with a learning disability. Carers face challenges which influence their own wellbeing. Services need to be responsive to individual cultural contexts, while addressing potential conflicts of control.
... One parent lacked confidence due to their English language ability, which demonstrates the importance of culturally and linguistically sensitive practices in this population. Utilizing interpreters or family members, accepting and embracing cultural differences and working together to find a way forward are all examples of how health professionals may provide culturally sensitive care in a similar population (Heer et al., 2016). ...
Background
Cerebral palsy (CP) is the most common childhood physical disability in developed countries. Parents of children with CP experience difficulties that can result in reduced well‐being. Health professionals supporting children with CP have been encouraged to focus on parental well‐being as this forms part of the child's essential environment. There is a lack of evidence about interventions that holistically support the whole family by providing therapeutic input for the child and support for parents. This study aimed to explore parents' experiences of play‐based groups for children with CP and their parents, with a focus on the groups' impact on parents' well‐being.
Methods
Parents of children with CP who had attended play‐based groups in the year prior were recruited for this qualitative study. Semi‐structured interviews were conducted, audio‐recorded and transcribed verbatim. Participants' demographic characteristics were collected as contextual information. Data were analysed using an inductive thematic approach.
Results
Ten mothers were interviewed. Overall, mothers had positive experiences of the groups and perceived them as an important influence on their well‐being. Four themes described mothers' experiences of the groups and the subsequent impact on their well‐being: (1) practical support, (2) connecting with others, (3) transitioning journeys and (4) different motivators, different experiences. Numerous factors influenced mothers' experiences of attending the groups and the subsequent impact on their well‐being. This included mothers' individual experiences of having a child with CP.
Conclusions
Interventions combining practical and social support for the whole family can have a positive impact on the well‐being of mothers of children with CP. Care should be taken to provide individualised support for each family. There is no ‘one‐size‐fits‐all’ approach, and a package of care can provide multiple services that meet the varying needs of mothers and their children with CP.
... Cultural competency and cultural safety are required competencies for nursing practice around the world, and guidelines to achieve them are present in the nursing literature (Douglas et al., 2014;Heer et al., 2016;Cuellar, 2016;Mikkonen et al., 2016;Pitkajarvi et al., 2012;Zazzi, 2020). A plethora of pedagogical approaches can be used to teach cultural competency and safety (Halabi and de Beer, 2018;Repo et al., 2017), yet international placements represent a popular choice in nursing education (Amerson, 2020;Amerson, 2019;Drynan, 2013;Mkandawire-Valhmu and Doering, 2012;Mkandawire-Valhmu et al., 2019;Parker et al., 2015). ...
Background
International placements represent a popular choice to develop cultural competency and safety in nursing. The question as to whether study abroad programs enable the development of cultural competency and safety skills or provide exotic travel experiences needs further clarifications.
Objective
The study explores the usefulness of international placements in developing cultural safety among undergraduate nursing students.
Design
An exploratory qualitative design was used to answer these research questions: 1) How do undergraduate students make sense of their study abroad experiences? And 2) How international placements facilitate the acquisition of cultural safety and consciousness-raising about racial and social privileges?
Participants
A sample of 7 participants who completed a 4th-year community and acute care stages in Global South countries were recruited.
Methods
A postcolonial feminist theoretical approach was used to guide the study.
Data Collection.
Semi-structured interviews explored participants' perceptions of cultural differences, ways of adapting to cultural diversity, and the benefits and challenges of their global experiences. Thematic content analysis was used to analyze the data.
Results
Thematic analysis revealed three themes: 1) Self-knowledge, 2) othering, and 3) consciousness of neocolonialism.
Discussion
Results raise some concerns about the usefulness of international stages in developing cultural competency and cultural safety in undergraduate nursing students. Results indicate that international placements can be useful to raise consciousness about racial and social privileges. Yet, international placements involve some risks to the receiving Global South countries. This study unmasks Othering's processes, where participants reproduce harmful neocolonial relations.
Conclusions
International placements involve cultural risks that translate into Othering processes where Global South nurses and students are represented as powerless. Postcolonial feminist theories are relevant to study international placements as they enable the critical examination of race, gender, and social class and how they play out in international placements in Global South countries.
... 11 South Asian patients may receive inappropriate interpretive services (e.g., interpreter speaks a different South Asian language) 7,12 and may experience lack of sensitivity and added judgments or bias from interpreters. 12 As a result of limited resources to aid communication, some South Asians overseas (e.g., living in the United Kingdom) opt to receive care at home rather than in the hospital. 11,13,14 It is also important to note that the broadly conceptualized South Asian culture includes various subcultures, languages, and religious sects. ...
Background:
While effective communication is important in the care of seriously ill patients, little is known about communication challenges faced by healthcare providers serving U.S. patients of South Asian origin, one of the fastest growing demographic groups in the United States.
Objective:
Researchers sought to examine communication challenges faced by healthcare providers serving seriously ill South Asian patients and their families and present strategies recommended by providers for effective communication.
Design:
Researchers conducted a thematic analysis of qualitative data obtained through focus groups and individual interviews with 57 healthcare providers, including physicians, social workers, nurses, chaplains, and others drawn from different healthcare settings in one Midwestern city.
Results:
While acknowledging the considerable diversity within the U.S. South Asian community, participants discussed three types of communication challenges they often encounter when serving this population: ensuring effective interpretation, identifying a spokesperson, and challenges posed by different cultural norms. Participants shared strategies to address these challenges such as proactively inquiring about patients' and families' preferences and encouraging early appointment of a spokesperson.
Conclusions:
While providers should avoid stereotyping patients, an awareness of common challenges and adoption of recommended strategies to address these challenges may enhance the provision of culturally responsive person-centered services for seriously ill South Asian patients and their families receiving care in the United States.
... Previous research informs us that service users are dissatisfied (Azmi et al., 1997), families are dissatisfied (Hatton et al., 1998) and that service providers experience conflicts with families on issues such as promoting choice and individuality (Heer, Rose, & Larkin, 2014). An 'experiential-contextual framework' proposed by Heer, Larkin, Burchess, and Rose (2012) and attempts to understand the tension between service providers and families, in terms of their differing understandings, priorities and values. ...
Background and aims:
Carers and service users with intellectual disabilities from minority ethnic groups have typically been reported to be dissatisfied with the social care services they receive. However, service users themselves have rarely been asked directly about their experiences of social care. This paper aims to understand the meaning of social care services in the lives of South Asian women with intellectual disabilities, in the United Kingdom.
Method and procedure:
10 British South Asian women with mild-moderate intellectual disabilities were interviewed about their experiences of social care services. The transcripts were analysed using interpretative phenomenological analysis.
Results:
The analysis produced three super-ordinate themes, which focus on how services facilitate the development of complex identities, how the participants explored their sense of being 'stuck' between cultures as they negotiated their journeys towards independence, and the triple disadvantage which they experienced as a consequence of the intersection between gender, ethnicity and disability. The participants were broadly satisfied with the role which services played in these domains, and appeared to find them valuable and helpful.
Conclusions:
The results suggest that the participants successfully managed complex identity issues, such as acculturation processes, with the support of services. It may be helpful to give more explicit consideration to the positive role which good services can play in supporting people with intellectual disabilities in the development of their identities and goals, alongside the more traditionally 'concrete' objectives of such social care. Engagement with families in 'positive risk-taking' is likely to be an important component of success.
People with a learning disability from ethnic minorities face a 'double discrimination' as members of two marginalised groups. This recommendations report was commissioned by the NHS Race and Health Observatory and produced by a collaboration between the University of Central Lancashire, Manchester Metropolitan University, Learning Disability England and the Race Equality Foundation. This work was coproduced with a working group of experts-by-experience. Part A of the report includes a policy review, administrative datasets review, a scoping review, and two analyses of ethnicity recording in an ICB and data from a national mortality programme. The report concludes that it is important to recognise racism as a driver of inequality in healthcare for people with a learning disability from ethnic minority backgrounds. These inequalities are reflected in a lack of consideration of people from ethnic minorities in policy, the poor quality and under-utilisation of ethnicity data in administrative datasets, and a paucity of research.
Background
Mental health problems are common among children and young people in the UK. Some young people from ethnic minority backgrounds experience mental health problems in different ways from those from non-ethnic minority backgrounds. Furthermore, those from ethnic minority backgrounds often experience greater difficulties in accessing mental health support and variable levels of engagement with services, and may prefer different support to their white British peers.
Objective
To describe the nature and scope of qualitative research about the experiences of children and young people from ethnic minority backgrounds in seeking or obtaining care or support for mental health problems.
Data sources
We searched seven bibliographic databases (Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, MEDLINE, PsycInfo ® , Health Management Information Consortium, Social Policy and Practice, and Web of Science) using relevant terms on 23 June 2021.
Methods
The scoping review included qualitative research about young people’s experiences of seeking or engaging with services or support for mental health problems. Included studies were published from 2012 onwards, were from the UK, were about those aged 10–24 years and were focused on those from ethnic minority backgrounds (i.e. not white British). Study selection, data extraction and quality assessment (with ‘Wallace’ criteria) were conducted by two reviewers. We provide a descriptive summary of the aims, scope, sample, methods and quality of the included studies, and a selected presentation of authors’ findings (i.e. no formal synthesis).
Results
From 5335 unique search records, we included 26 papers or reports describing 22 diverse qualitative studies. Most of the studies were well conducted and clearly described. There were studies of refugees/asylum seekers ( n = 5), university students ( n = 4) and studies among young people experiencing particular mental health problems ( n = 14) (some studies appear in multiple categories): schizophrenia or psychosis ( n = 3), eating disorders ( n = 3), post-traumatic stress disorder ( n = 3, in asylum seekers), substance misuse ( n = 2), self-harm ( n = 2) and obsessive–compulsive disorder ( n = 1). There were also three studies of ethnic minority young people who were receiving particular treatments (cognitive–behavioural therapy, multisystemic therapy for families and a culturally adapted family-based talking therapy). Most studies had been conducted with young people or their parents from a range of different ethnic backgrounds. However, nine studies were conducted with particular ethnic groups: asylum seekers from Afghanistan ( n = 2), and black and South Asian ( n = 2), black African and black Caribbean ( n = 2), South Asian ( n = 1), Pakistani or Bangladeshi ( n = 1) and Orthodox Jewish ( n = 1) people. The studies suggested a range of factors that influence care-seeking and access to mental health care, in terms of the beliefs and knowledge of young people and their parents, the design and promotion of services, and the characteristics of care professionals. Poor access was attributed to a lack of understanding of mental health problems, lack of information about services, lack of trust in care professionals, social stigma and cultural expectations about mental resilience.
Limitations
As this was a rapid scoping review, there was only a basic synthesis of the research findings.
Future work
Future research about young people from ethnic minorities could cover a wider range of ethnic minorities, sample and analyse experiences from particular ethnic minorities separately, cover those accessing different services for different needs, and adopt multiple perspectives (e.g. service user, carer, clinician, service management).
Study registration
This study is registered as https://osf.io/wa7bf/ .
Funding
This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery programme and will be published in full in Health and Social Care Delivery ; Vol. 10, No. 22. See the NIHR Journals Library website for further project information.
The possibility of relaxation in Quadruple Beltrami states for a system of dusty plasma of
opposite polarity dust particles, electrons, and ions has been investigated. The macroscopic magnetic field structures are investigated in alliance with the differential flows of electrons, ions, positively and negatively charged dust grains. For a certain set of Beltrami parameters, it is observed that the system self-organized to Quadruple Beltrami state which is characterized by four eigenvalues. To derive Quadruple Beltrami equation, two different cases are assumed. The system allows a fully diamagnetic structure by considering all the inertial forces. The development of paramagnetic and diamagnetic structures has been observed by just ignoring the inertial effects of electrons. It has been shown that the features (paramagnetic or diamagnetic) of the relaxed structures are significantly modified by the eigenvalues and masses of the oppositely charged dust particles.
This study aims to scrutinize the experiences of immigrant Turkish parents who have children with SEN in accessing early intervention services from the pre-diagnosis period, within the framework of cultural diversity. The participants of this research designed as phenomenological research consist of nine parents who have migrated from Turkey to the UK and have a child with special needs. Research data were collected using semi-structured interviews, reflective journal and document analysis techniques. The data were analysed thematically and the steps recommended by Creswell (2007) for phenomenological research were followed. The findings obtained due to the intersection of theory and research findings are presented within the framework of the bio-ecological theory. The findings of the study revealed that having a child with special needs has common effects and experiences for all parents and that each experience is unique. At many points of the process, it has been demonstrated that they encounter language barriers and the presence of patterns based on perceptual and interpersonal communication affects the adaptation and intervention process in two-sided ways.
El mundo globalizado actual expresa importantes desafíos para el cuidado de enfermería, de manera que se reconozca y alivie el sufrimiento teniendo en cuenta la cultura del sujeto de cuidado. Objetivo: Describir los hallazgos de investigaciones sobre experiencias de enfermeras de hospitalización con respecto a la compasión y el cuidado a personas culturalmente diversas. Método. Revisión sistematizada. Las búsquedas fueron realizadas en: Web of Science, CINAHL, OVID Nursing, Evidence Based Medicine Reviews, Medline (PubMed), PsycARTICLES, Biblioteca Virtual en Salud, CUIDEN Plus, TripDatabase, Epistemonikos y el Descubridor de la Universidad Nacional de Colombia. Se ejecutaron 83 búsquedas con términos MeSH, DeCS y lenguaje natural, incluyendo artículos de investigación o revisión con abordajes cualitativos, publicados en español, inglés o portugués. Resultados: Se incluyeron 42 estudios, con predominio de diseños fenomenológicos, etnográficos y de teoría fundamentada. Estos reflejan el vínculo entre compasión y el cuidado a personas culturalmente diversas, desarrollado a través de tres temas y 14 subtemas. Conclusión. Las experiencias de enfermeras y pacientes son diversas, pero es visible la conexión entre compasión y competencia cultural en el cuidado de enfermería en el ámbito clínico. Esta sistematización muestra necesidades de formación y entrenamiento, refleja tensiones entre cultura personal, profesional e institucional.
Background
In 2015, approximately 2.16% of adults were recorded as having intellectual disabilities. UK government policy is that adults with intellectual disabilities should access mainstream health services. However, people with intellectual disabilities experience challenges when accessing primary and community health services that can lead to inequalities and shorter life expectancy.
Objectives
To map and review the evidence on access to primary and community health-care services for adults with intellectual disabilities and their carers. To identify influencing factors for gaining access to primary and community health-care services. To determine which actions, interventions or models of service provision improve entry access to these services for people with intellectual disabilities and their carers. Finally, to identify the gaps in evidence and provide implications for health care and recommendations for research.
Data sources
MEDLINE, The Cochrane Library, Web of Science, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Applied Social Sciences Index and Abstracts (ASSIA) and Education Resources Information Center (ERIC) were searched from 2002 to 2018.
Review methods
The mapping review methodology included an extensive literature search, article selection and data extraction of relevant abstracts. Findings from the mapping review informed the scope of the targeted systematic review. Methodology for the targeted systematic review included an extensive literature search informed by the mapping review, article selection, data extraction, quality appraisal and narrative synthesis.
Results
The mapping review included 413 studies with data extraction completed on abstracts. The targeted systematic review synthesised the evidence from 80 studies reported in 82 publications. During the review process, the team identified three key points at which people with intellectual disabilities potentially interacted with primary and community health-care services: identifying needs, accessing services and interaction during a consultation. In addition, there were a number of papers about interventions or innovations to improve access. Evidence from the studies was synthesised within the four clusters. Influencing factors were identified: staff knowledge/skills, joint working with learning disability services, service delivery model, uptake, appointment making, carer/support role, relationship with staff, time, accessible information and communication. The influencing factors were cross-cutting through the literature, with certain factors having more importance in certain clusters.
Limitations
The main limitation was the weak evidence base. The studies generally had small samples, had study designs that were open to potential biases and measured only short-term outcomes.
Conclusions
Health checks were found to help identify health needs and improve the care of long-term conditions. Important factors for accessing health services for adults with intellectual disabilities were consistency of care and support, staff training, communication skills and time to communicate, and provision of accessible information. Health professionals need to ensure that there is joint working between different services, clear communication and accurate record-keeping. Future research questions centre on the need to develop and value creative study designs capable of addressing the complex issues identified in the findings of the review for this complex population.
Funding
This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research ; Vol. 8, No. 5. See the NIHR Journals Library website for further project information.
This study explored the perceptions of accessibility and cultural effectiveness of refugee services in the northeast region of the United States from refugees, interpreters who work with refugees in accessing these services, and the providers of the refugee services. The study examined the perceptions of 51 refugees from 10 countries, five individual interviews with providers and 26 provider survey responses representing 31 different agencies, and four interviews from interpreters. Qualitative interviews were conducted using a semi-structured interview schedule, were audiotaped, and transcribed. Further data were collected through a survey. All data were analyzed using constant comparative analysis. Participants shared feelings of frustration that services seemed poorly coordinated among the agencies and that the agencies appeared ill-prepared for the unique experiences of separate refugee groups. The three perspectives of refugee service delivery, as a consumer, a provider, or an interpreter, shared the perception that there was not a mechanism for the different services to collaborate effectively with each other, to create a network of coordinated services that would enhance services while decreasing burdens on individual centers, nor was there a system to best prepare the centers for new refugees.
Background
Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England.
Method
Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes.
Results
Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated.
Conclusions
Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent.
Aim: This study assessed the cultural competence of nursing students in a Saudi University.
Background: With the current situation of immigration in Saudi Arabia, the cultural diversity in healthcare
facilities is anticipated to grow. This presents a great challenge to the members of the healthcare team.
Methods: A cross-sectional study was conducted among 272 nursing students in a Saudi university using a
self-administered questionnaire consisting of two parts, namely the respondents’ demographics and cultural
background information sheet and the Cultural Capacity Scale Arabic version.
Results: The respondents showed the highest competence in their ability to demonstrate communication
skills with culturally diverse patients and lowest in the familiarity with health- or illness-related cultural
knowledge or theory. Gender, academic level, clinical exposure, prior diversity training, the experience of
taking care of culturally diverse patients and patients belonging to special population groups were
significant factors that could likely to influence cultural competence.
Discussion: The findings suggest that the Saudi nursing students possess the ability to provide culturally
appropriate nursing care to patients with a diverse cultural background.
Conclusions: Despite the good cultural competence reflected in this study, some aspects in ensuring a
culturally competent care rendered by Saudi nursing students need to be improved.
Implications for nursing & health policy: With the country’s Saudization policy in health care (replacing
foreign nurses with Saudi nurses), the findings can be used in designing training and interventions to meet the needs of Saudi nursing students regarding cultural competence development, which is integral in their
preparation to assume their future roles as nurses. Policy guidelines, such as including cultural competency
training and foreign languages training as mandatory continuing education for nurses, as well as integrating
cultural competency and foreign languages in the prelicensure curriculum, should be developed and
implemented in Saudi Arabia and other countries.
To ensure equality of access to health and social care services for all communities resident in Britain, services need to be appropriate and accessible. This requires ensuring that a range of policies is adhered to and that services are designed to make this possible. In a culturally diverse society, there will be people who are not fluent in the language of their country of residence, but who may require access to health and social care services, necessitating the services of a language interpreter. This means that clinicians need to be trained both to work with interpreters and to feel confident in so doing. This paper explores issues relating to working in partnership with an interpreter and offers guidance about good practice. The complex relationship between language, culture and worldview is discussed and suggestions are made about how these might be considered within clinical services. Finally, four diverse modes of interpretation are reviewed and illustrated.
We evaluated clinical information gained directly from 10 English-speakingand from 10non-English-speaking subjectsboth directly and through interpreter-mediated interviews. High levels of agreement between raters, when assessingboth cohorts, were found for all data with a non-significant tendency towards better agreement in the Asian than the English-speaking sample for family history data. Analysis of the interview contents showed a number of errors of interpretation which were similar to those noted in previous studies. The addition of quantitative data representsa significantadvantage over previousstudies, allowing the qualitative results to be placed into perspective.Recommendations are made for optimising and avoiding the pitfalls of interpreter-mediated interviews. The communication needs of non English-speak ing UK populations have never been system
Interpretative phenomenological analysis (IPA) is an approach to qualitative research that is now well-established in British psychology. This approach is concerned with understanding people's experiences of the world and of themselves. The aims of IPA studies have been met most frequently through the use of one-on-one interviews. Relatively few studies have used focus group discussions as the basis for IPA studies, but focus groups may provide rich experiential data. In this article, we describe a process for integrating focus group data into an IPA study. We developed this during a study of the experiences of carers of people with mental health problems. Here we outline the various steps of our analytic process and discuss how these might be employed and adapted by other researchers wishing to apply IPA's concern with personal experience to the analysis of focus group data.
The prevalence of learning disabilities amongt South Asian communities in the
United Kingdom is thought to be almost three times higher than in any other
community. Despite this, service utilisation amongst this group remains low and
working cross-culturally can pose unique challenges for service providers. The
experiences of South Asian families caring for a child with learning disabilities
within the United Kingdom are multifaceted. This article proposes an experiential–
contextual framework for exploring these experiences. The framework
incorporates minority experiences as well as medical and social models of disability.
The experiential–contextual framework has been applied to understanding
important aspects of South Asians experiences, including: the interpretations
and understanding of learning disabilities; interactions with healthcare systems;
minority group pressures; and the influence of acculturation and diversity within
ethnic groups.
This paper discusses a qualitative and quantitative study of the circumstances of 20 Pakistani and Bangladeshi families with one or more severely disabled children living in Birmingham, England. Parents and other adult carers were interviewed using a combination of structured questionnaires and a semi-structured interview schedule focusing on the families' material circumstances, their use of formal services, informal care arrangements, and aspects of the parents' social and psychological well-being. The study suggests that previous national surveys of disabled families may have under-estimated the extent of material disadvantage, while it confirms that health and social care professionals should not assume that Pakistani and Bangladeshi parents have recourse to high levels of extended family support. The combination of disadvantaged circumstances and difficulties in securing access to appropriate services, which are found for the majority of families with a disabled child, was particularly acute for these ethnic minority families, suggesting the additional dimension of institutional racism.
Interpretative Phenomenological Analysis (IPA) is a phenomenological, hermeneutic method for analysing semi-structured interview data, supported by a robust theoretical foundation and detailed practical procedures. The use of IPA with focus group data does not yet have the same status, and it should not be assumed that either theory or practice can remain unchanged when applied to focus groups. Two core features of IPA are discussed and problematized in the context of focus group work: the negotiation of part-whole relationships and the management of the interplay between real-time discursive and post-hoc thematic sense-making. With both these issues, practical solutions are offered from our own research on care. Although it is possible to adjust the IPA
method for group data, there remain some profound theoretical and epistemological questions about whether the resultant focus on the group-individual dynamic and the discursive construction of experience represents too fundamental a shift from the idiographic and the psychological to be considered “true IPA.” However, working through these issues and attempting to move from either/ors to both/ands are seen as being true to the spirit of phenomenological enquiry.
Twenty-one South Asian adolescents and adults with intellectual disabilities were interviewed regarding eight areas of their lives: accommodation, individual support, day services, service support, social and recreational activities, friendships and relationships, ethnic and racial identity, and racism and stigma. All interviews were coded for user satisfaction with these aspects of their lives, and content-analysed to draw out relevant themes. From the interviews, it is clear that South Asian adolescents and adults have a strong and positive sense of their ethnic and racial identity, and that they are generally satisfied with their home and family circumstances. However, people with intellectual disabilities from South Asian communities experience pervasive racism and stigma throughout all areas of their lives. Consequences of this double discrimination include a lack of culturally appropriate services, limited friendships and closer relationships, and a lack of meaningful leisure activities. Implications of these findings for services are discussed.
Marriage between close biological relatives is generally regarded with suspicion and distaste within Western society, reflecting historical and religious prejudice. By comparison, in many other populations there is a strong preference for consanguineous unions, most frequently contracted between first cousins, and marriage outside the family is perceived as a risky and disruptive option. The increasing importance of the genetic contribution to the overall disease profile in both developed and developing countries has highlighted potential problems associated with detrimental recessive gene expression in consanguineous progeny. This review examines the outcomes of consanguineous unions, with proposals as to how the ongoing preference for consanguinity in many communities can best be accommodated from a clinical genetics perspective.
It has sometimes been assumed that religiously based explanations for and attitudes to having a disabled child have led to the low uptake of health and social services by ethnic minority families in the UK. A series of semi-structured interviews were held between 1999 and 2001 with 19 Pakistani and Bangladeshi families with a disabled child as part of an evaluation of an advocacy service. The families’ understandings of the causes of their child's impairment, whether they felt shame and experienced stigma, and whether these factors influenced service uptake and their expectations of their child's future are reported. While religious beliefs did inform the ways in which some families conceptualised their experience, the families’ attitudes were complex and varied. There was little evidence that religious beliefs and associated attitudes rather than institutional racism had resulted in the low levels of service provision which the families experienced prior to the advocacy service. There was also no evidence that the families’ attitudes had been informed by the disability movement. The implications for service providers and the movement are considered.
The rapidly increasing racial and ethnic diversity among Kaiser Permanente (KP) membership mirrors the demographic changes across the nation (Lynette DeSantis, personal communication, 2008 Nov).a This diversity calls for interventions that are culturally specific to improve patients' health outcomes and to eliminate health disparities (see Kaiser Permanente Diversity Demographics).
Kaiser Permanente Diversity Demographics
Kaiser Permanente (KP) was founded in 1945 as an integrated health delivery system and is the nation's largest not-for-profit health maintenance organization, serving over 8.7 million members in nine states and the District of Columbia. With a long-standing commitment to diversity, our total workforce of 167,000 includes 74% women and 56% people of color; our physician workforce includes 38% women and 43% people of color. In one of our largest regions, Southern California, membership includes 35% Latinos, 11% African Americans, 5% Asian, 47% White and 2% Other (Lynette DeSantis, personal communication, 2008 November).a Currently, populations of color in states served by KP are: 53% CA, 17% CO, 68% D.C., 38% GA, 75% HI, 39% MD, 16% OH, 13% OR, 28% VA, and 19% WA.a
a Consultant, National Market Research, Kaiser Permanente, Pasadena, CA
The debate on the correct application of the terms race and ethnicity continues while community care takes place in a multicultural society. The impact of mental illness and mental handicap (currently referred to as learning disability²) on different ethnic groups partly depends on societai influences which also deter mine the policy for service organisation. As the treatment and support of the mentally handicapped has moved away from the custodial care of yesteryear, professionals must ensure that their practice is sensitive to the religion, ethnicity and languages of the communities they serve. This paper describes examples of psychiatric clinical practice with two families of Greek and Kuwaiti background, in the setting of a community learning disability team.
Cross-cultural psychology has demonstrated important links between cultural context and individual behavioural development. Given this relationship, cross-cultural research has increasingly investigated what happens to individuals who have developed in one cultural context when they attempt to re-establish their lives in another one. The long-term psychological consequences of this process of acculturation are highly variable, depending on social and personal variables that reside in the society of origin, the society of settlement, and phenomena that both exist prior to, and arise during, the course of acculturation. This article outlines a conceptual framework within which acculturation and adaptation can be investigated, and then presents some general findings and conclusions based on a sample of empirical studies.
Background A health service in an English city was concerned about its support to families with adults with intellectual disabilities and challenging behaviour.
Methods Semi-structured interviews were conducted with seven minority ethnic and seven majority ethnic family members to explore perceptions of challenging behaviour, support and the impact of the person on the family. These were analysed using interpretative phenomenological analysis.
Results Four themes emerged: (i) A broad range of difficulties with the adult with intellectual disabilities. (ii) Varied relationships with local communities in acceptance and support. (iii) Varied but largely negative relationships with services. (iv) Varied relationships with the person with intellectual disabilities, from highly dependent relationships with negative consequences to more fulfilling relationships. Families from minority ethnic communities were more likely to report negative experiences.
Conclusions ‘Challenging behaviour’ services need to be considered within a much broader social and community context.
The present case report describes the arranged marriage of a Bangladeshi woman with moderate intellectual disability. It explores some of the social and cultural factors influencing the decision to arrange her marriage, and the dilemmas this presents in terms of bridging cultural differences between professional and lay concerns.
Policy on care in the community was founded on the premise that the care of frail elderly people with disabilities would be a joint responsibility for health and social care professionals, and family carers, supported by people within their social networks. The policy assumes that such social networks are common features of all communities in contemporary Britain, containing a reserve of people who can be called upon to provide support to carers. The present paper draws on material gathered for a qualitative study of the experiences carers in South Asian communities to examine the quality and quantity of informal support that was available in different types of households. Male and female carers were selected from the Punjabi Sikh, Gujarati Hindu, and Bangladeshi and Pakistani communities. A total of 105 carers participated in the project. Participants were caring for people in all age groups with physical and/or mental distress, and in some cases, with multiple and complex impairments. The analysis of carers’ accounts suggested that, for a variety of reasons, the main carer, irrespective of gender, had limited support both in nuclear and extended households. In addition, societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks. The paper concludes that the evidence does not support the assumption about extended families, and their willingness and ability to support carers. Many issues highlighted in this paper have far-reaching implications for policy makers in many countries in the West where South Asian people have made their homes.
La psychologie interculturelle a montré qu'il existait des rapports étroits entre le contexte culturel et le développement comportemental de l'individu. Cette relation établie, l'effort des recherches interculturelles a de plus en plus porté sur ce qu'il advenait des individus quand ils tentaient de refaire leur vie dans une culture différente de leur culture d'origine. Les conséquences psychologiques à long terme de ce processus d'acculturation sont très variables, dépendant de variables sociales et personnelles qui renvoient à la société de départ, à la société d'accueil et à des phénomènes qui existent avant, mais qui émergent pendant la période d'acculturation. Cet article esquisse un schéma conceptuel à partir duquel acculturation et adaptation peuvent ětre étudiées, puis présente quelques conclusions et résultats généraux tirés d'un échantillon de travaux empiriques. On envisage des applications possibles à la politique et aux programmes d'insertion en prenant en considération les couts et les bénéfices sociaux et psychologiques émanant de l'adoprion d'une orientation pluraliste et intégrationniste.
SUMMARY On the basis of a total identification survey in two metropolitan boroughs, 54 people from the south Asian communities caring
for people with learning difficulties aged 14 or over were interviewed regarding family circumstances, service supports and
levels of stress. In general, families were living in circumstances of material disadvantage and reported a high need for
services, due to a lack of informal support and the considerable support needs of many of the people with learning difficulties.
Carer awareness and receipt of specialist intellectual disability services were, however, low. A lack of information and staff
with appropriate language skills, coupled with a general neglect of the cultural and religious needs of service users and
carers, appeared to result in low service uptake and low levels of satisfaction with services. Eight per cent of carers reported
levels of stress indicative of psychiatric problems, and also reported high levels of contact with health services. There
was some evidence that services were not allocated according to need; carers with low household incomes reported higher levels
of stress, but carers with higher household incomes received a wider range of services. The implications of these findings
for services are discussed.
Provision of interpreter services for non-English-speaking patients is a federal requirement. We surveyed clinicians to describe their experience using interpreters.
In this cross-sectional study we surveyed clinicians in three academic outpatient settings in San Francisco (N = 194) regarding their most recent patient encounter which involved an interpreter. Questions about the visit included type of interpreter, satisfaction with content of clinical encounter, potential problems, and frequency of need. Previous training in interpreter use, languages spoken, and demographics were also asked. Questionnaires were self-administered in approximately 10 minutes.
Of 194 questionnaires mailed, 158 were completed (81% response rate) and 67% were from resident physicians. Most respondents (78%) were very satisfied or satisfied with the medical care they provided, 85% felt satisfied with their ability to diagnose a disease and treat a disease, but only 45% were satisfied with their ability to empower the patient with knowledge about their disease, treatment, or medication. Even though 71% felt they were able to make a personal connection with their patient, only 33% felt they had learned about another culture as a result of the encounter. Clinicians reported difficulties eliciting exact symptoms (70%), explaining treatments (44%), and eliciting treatment preferences (51%). Clinicians perceived that lack of knowledge of a patient's culture hindered their ability to provide quality medical care and only 18% felt they were unable to establish trust or rapport. Previous training in interpreter use was associated with increased use of professional interpreters (odds ratio [OR], 3.2; 95% confidence interval [CI], 1.4 to 7.5) and increased satisfaction with medical care provided (OR, 2.6; 95% CI, 1.1 to 6.6).
Clinicians reported communication difficulties affecting their ability to understand symptoms and treat disease, as well as their ability to empower patients regarding their healthcare. Training in the use of interpreters may improve communication and clinical care, and thus health outcomes.
People with learning disabilities from minority ethnic communities face many layers of disadvantage. Providing services that are culturally appropriate and sensitive can be difficult.
Through the use of clinical examples the issues, tensions and dilemmas raised for a community learning disabilities team in attempting to provide culturally sensitive services in an increasingly multicultural environment are discussed. Ways in which good practice can be more closely achieved are debated.
Conflicts between the principal service values of individuality, choice, promotion of mental health and normalization, whilst also respecting the beliefs and values of other religions and cultures, can raise tensions and dilemmas for learning disabilities services. The importance of sensitive and appropriate service configuration, sharing of good practice, and good staff training are emphasized.
This article investigates the challenges faced by those trying to develop 'culturally competent' palliative care for South Asian cancer patients in Luton, UK. It discusses the findings of a phenomenological study of service providers' attitudes to and experiences of caring for South Asian patients. Ten semi-structured in-depth interviews were carried out with a range of staff who work in home and community-based palliative care settings, including nurses, community liaison personnel and representatives of non-statutory organisations. The authors begin by considering how these service providers construct ideas of cultural difference and how these relate to philosophies of palliative care. They then examine attempts to deal with cultural diversity in everyday practice, focusing in particular on the social context of care in the home. The paper considers the ways in which staff attempt to incorporate the cultural needs of patients, family, kin and community. Rather than criticising current working practices, the authors highlight the complexity of delivering culturally competent services from the perspective of those working directly with patients. In doing so, they contribute to ongoing debates about the development of anti-discriminatory practice in health and social care.
Language barriers present a major obstacle to minority ethnic communities accessing primary healthcare. Whereas it is recognised that interpreting services are generally inadequate and inappropriate reliance is placed on family members to interpret, little is known about how nurses working in primary care utilise interpreters to overcome language barriers. The present paper reports on a study examining the utilisation of interpreting services by a range of primary care nurses from the perspectives of the nurses, interpreters and minority ethnic communities. Focus groups were undertaken with five separate groups of district nurses, health visitors, practice nurses, community midwives and specialist nurses, three groups of interpreters from different interpreting services, and five groups of participants from the main community languages in the locality where the study was undertaken (i.e. Arabic, Bengali, Cantonese, Somali and Urdu). Focus group discussions were tape-recorded and subsequently transcribed. Data analysis drew upon the principles of 'framework' analysis. The use of interpreters by primary care nurses varied considerably. Nurses who had received training in using interpreters and who had most control over the timing of patient visits were more likely to use interpreting services. Inadequate training of both nurses and interpreters adversely affected the quality of interaction where interpreters were used. Primary care nurses acted as gatekeepers to interpreting services. Whereas interpreting services were generally perceived to be inadequate, many nurses were accepting of the status quo and prepared to rely on family members to interpret rather than champion the need to improve services.
Despite growing research in the UK suggesting that patients from black and ethnic minority groups feel that they do not always receive the best treatment and care, little is known about how care professionals themselves respond to working with this group. The study, involving focus groups with health and social care staff, was undertaken to learn about their views and experiences. The principal finding was the extent to which staff experience difficulties in caring for patients from black and ethnic minority groups. Entailing serious challenges to their own professional practice, these were found to arise at all stages of patients' experience of cancer, including at diagnosis, during treatment and at the palliative phase. Staff were concerned that their inability to communicate with some patients meant that they were not able to provide them a good service, as they could not develop an easy relationship and talk around issues. Yet it could be difficult to work with interpreters, as well as family members, both of who could be reluctant to translate important information. They were also conscious of not being fully sensitive to patients' differing cultures, while noting the importance of not making assumptions about particular beliefs or behaviour. Staff would welcome training to help them to explore their attitudes and assumptions in working with black and ethnic minority patients, but did not seek induction into the detailed practices of different cultures. Some staff felt they would benefit from training in working with interpreters.
The aim of this research study is to explore health visitors' beliefs, knowledge and practice in cultural competence. A baseline survey was undertaken with all health visitors working within a West Midlands primary care trust (PCT) which served a significant population of minority ethnic communities. The results show that half the respondents were themselves members of a minority ethnic community. Caribbean origins predominated, with little representation from those of Asian descent. Non-parametric testing indicated that respondents showed there was a significant difference in their ability to meet the needs of minority ethnic communites as opposed to their ability to meet the white population needs. Respondents were able to identify factors which promote, and barriers which hamper use of health visiting services by minority ethnic communities, for example, the standard yet important factors of language and culture. However, racism was not recognised as a significant issue. The need for cultural competence training was seen as a key outcome.This training must reflect the diverse cultural needs of staff and service users.