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Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views
Disability and Health Journal xxx (2017) 1e4
Contents lists available at ScienceDirect
Disability and Health Journal journal homepage: www.disabilityandhealthjnl.com
Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views Kenneth A. McLean a, *, Samantha Hardie b, Abigail Paul a, Gary Paul a, Iain Savage a, Paul Shields a, Rebecca Symes a, Joanna Wilson a, Catherine Winstanley a, Jeni Harden b a b
Medical School, University of Edinburgh, United Kingdom Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, United Kingdom
a r t i c l e i n f o
a b s t r a c t
Article history: Received 20 August 2016 Received in revised form 9 January 2017 Accepted 21 January 2017
Background: People with disabilities in the Republic of Moldova continue to experience considerable discrimination and social exclusion. The Moldovan government recently affirmed their commitment to promote community integration. However, there remains limited evidence to facilitate understanding of these issues, and barriers to the integrative process. Objective: This study explored the knowledge and attitudes towards disability of young people within Moldova. Methods: A qualitative approach was adopted and 3 semi-structured focus group interviews were conducted with schoolchildren (n ¼ 12), aged 13e15 years. These interviews focussed on different aspects of disability, and community integration. Pictorial and written vignettes were used to stimulate discussion. The interviews were conducted and recorded in Romanian, and were subsequently translated into English to facilitate thematic data analysis. Results: Identified themes included: (1) Knowledge and understanding of disability. The young people's knowledge was limited and framed by the medical model of disability; (2) Attitudes towards community integration. A bias against long-term care institutions, but differing views regarding integration; (3) Perceptions of barriers to community integration: (i) Cultural barriers. Negative, even hostile attitudes towards disability; (ii) Policy barriers. Poor support services; and (iii) Physical barriers. Ongoing issues regarding accessibility. Conclusions: People with disabilities in Moldova experience negative cultural attitudes linked to an outdated conception of disability itself. There are inadequate community support services and infrastructure which act as barriers to inclusion. At present, there can be limited interaction and participation of people with disabilities within local communities, and so few opportunities to refute persistent stereotypes and stigma surrounding disability. © 2017 Elsevier Inc. All rights reserved.
Keywords: Qualitative Young people Attitudes to disability Integration
1. Background For decades in Eastern Europe, the primary methods of care for children with disabilities have been either restriction to their home, or segregation within long-term residential care institutions, isolated from the wider community.1 There are currently more than 180,000 people with disabilities in Moldova.2 (5.2% of the
* Corresponding author. Centre for Population Health Sciences, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Teviot Place, Edinburgh, EH8 9LN, United Kingdom. E-mail address: [email protected] (K.A. McLean).
population), and over 1/3 of children with disabilities thought to reside in institutional care.1 This is likely due to a lack of community-based support services,2e4 alongside common acceptance of this practice.5 Moldova remains the least economically developed country in Europe, and has received increased scrutiny regarding human rights.2 However, the government has recently affirmed their commitment to protect the rights of people with disabilities to legal capacity, and to promote community integration.6,7 However,, true integration is likely to be hindered through the persistence of restrictive Soviet era views on ”defectives” or “invalids” following independence in 1991.8,9 There remains a strong, pervasive stigma, likely perpetuated through the lack of visibility of and exposure to
http://dx.doi.org/10.1016/j.dhjo.2017.01.004 1936-6574/© 2017 Elsevier Inc. All rights reserved.
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004
2
K.A. McLean et al. / Disability and Health Journal xxx (2017) 1e4
people with disabilities,10 which was highlighted in the UN special rapporteur on the rights of persons with disabilities recent report on Moldova.2 However, there remains limited evidence available to facilitate understanding of these issues. Therefore, this study aimed to explore the knowledge and attitudes towards disability of young people within the local community surrounding a residential care institution in Moldova.
participants and their parents prior to inclusion. Our interview questions were structured as to not explicitly require personal information to be given, and vignettes were utilised due to the age of participants.11 We emphasised that participants could decline to answer any question, or withdraw at any point. Furthermore, we highlighted the availability of the guidance councillor within the school if they wished to speak about any personal issues that arose.
2. Methods
3. Results
2.1. Study design
3.1. Knowledge and understanding of disability
This qualitative study was conducted using semi-structured interviews to produce detailed data regarding the knowledge and attitudes of disability within the community surrounding a residential institution for children with disabilities in Moldova. The interviews utilised a topic guide with open questions, and vignettes to facilitate discussion (Appendix A). These were developed through review of the literature; input from local community members; and expert consultation.
All participants were aware of people with disabilities within their community, although few had first-hand interactions. The broad categories of physical and mental disabilities were well known in all groups, and all groups were able to identify the first (“Vasile”) and second vignette (“Olga”) as descriptions of these, respectively. However, just one participant could state a specific condition (Down's Syndrome). The suggested causes of disabilities comprised traumatic injury or prenatal environmental factors (“radiation”, “alcohol”, “drugs”). Language used across the focus groups suggested a perceived dichotomy between people with (referred to as “abnormal”, invalid”) and without disabilities. Participants explained that factors considered as indicative of learning impairment were age-inappropriate behaviours (“40something years old, but behaves like a thirteen year-old child”), or non-adherence to social convention (“does not control himself”). However, participants differed on the severity of “Olga's” learning disability, and its functional impact, with some suggesting “she would be able to do anything, because she doesn't have movement problems … she can work”.
2.2. Recruitment The study was conducted within the context of the local secondary school of a small town in Moldova. This location was selected based on its proximity to a residential institution, and the school management team were contacted to obtain their full and informed approval prior to the study. Recruitment packs were distributed to all 40 schoolchildren in the eligible age group (ages 13e15) during class. Informed consent was obtained from all participants and their parents prior to inclusion. All written and verbal communication were translated into Romanian (the predominate language) throughout the study. 2.3. Data collection The final sample consisted of 12 schoolchildren, arranged into 3 focus groups. These were conducted between 16th May and 2nd June 2014 in a private room within the school, and lasted from 35 to 45 min. Open questions allowed participants to volunteer their own experiences with disability and to explore their understanding of particular issues. We adopted the vignette method as an appropriate tool for conducting research with children and young people.11 One researcher facilitated each group, supported by a translator. All interviews were digitally recorded, with permission from the participants. 2.4. Data analysis The audio files were transcribed into English by a Romanian translator. These transcripts were anonymised and identifying details removed prior to being archived as digital word processed files. The transcripts were read by two authors (KAM, SH), and a coding frame devised to comprise the initial themes identified. Relevant segments of text were selected and independently coded by the two authors according to these themes to facilitate thematic analysis.12 The codes generated were discussed and collated in order to compare interpretations and identify common themes across participants' accounts. .
3.2. Attitudes towards community integration There was a common agreement that living with their family is the ideal circumstance for children with disabilities. The participants raised the importance of love and protection, contrasting this with life in an institution, suggesting “it's better if family love only surrounded him”, and that “[their] family can offer protection and help them … they suffer [being institutionalised]”. In contrast, some participants felt that an institution could be beneficial for facilitating social interaction with other people with disabilities or when the family would not accept their child with disabilities (“If [they are] unwanted”). The other felt that the appropriateness of institutional care was related to the nature of the disability (“if [they] have a mental disability maybe is better for [them] to be in a special school with other people like [them]”). Although there was a consensus that all people with disabilities could benefit from education, there were conflicting views on the appropriate educational context. Some participants stated all children with disabilities should be integrated into mainstream (“normal”) schools, and it was felt this could benefit all students. These included exposure to the “atmosphere of normal people” and promotion of social integration. One participant raised the broader point that the needs of people with disabilities require consideration whatever the educational context, and that there needs to be appropriate support provided. 3.3. Perceptions of barriers to community integration a) Cultural Barriers:
2.5. Ethics Institutional ethical approval was obtained in advance from the University of Edinburgh. Informed consent was required from both
A range of attitudinal barriers were identified which could hinder further community integration of people with disabilities. Many participants reported negative, even hostile attitudes
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004
K.A. McLean et al. / Disability and Health Journal xxx (2017) 1e4
amongst young people within the community in reaction to people with disabilities (“some who ignore them … fewer who swear at them” … “[Others] could discriminate … they would laugh at [people with disabilities ]”). Similarly, some also thought that community members perceived a potential threat from people with disabilities (“they are scared that [they] can cause some harm”, or “may be aggressive and abuse other people.”). In contrast to their peers, most participants displayed a sympathetic attitude towards people with disabilities, which they felt was more prevalent in older community members: “The older [community members] … they always want to educate you and tell you that you shouldn't joke about [people with disabilities], you need to help them and I think that's right, I mean that's how our society should be … but I think children, I think up to adolescence, they joke about these sorts of people.” There was a consensus that many of these attitudes are due to lack of exposure (“they are not used to [people with disabilities] in the family, on the street, in society”) and education (“I think most [community members] aren't sufficiently informed”). b) Policy Barriers: A lack of available support services was another fundamental issue highlighted. All groups recognised that in the second vignette (“Olga”) would require long-term, complex care however none were aware of such services being provided by the state. Furthermore, the financial support towards care costs was also felt to be inadequate and a barrier to people with disabilities living at home (“the state needs to offer the family a monthly sum of money that's sufficient … to be able to care for [them])”. c) Physical barriers: People with impaired mobility were also reported to face physical barriers in the community. Although participants reported some buildings had wheelchair access, one reported “less than half of them were okay to use”. It was recognised that more was needed to maximise the independence of people with impaired mobility as “he has to get out of his home, come back home, get out of the building”. However, positive changes have been noted recently as compared “to a few years ago … at [supermarket] … there is a special path for entering with wheelchairs … it's a start.” 4. Discussion This study represents the first qualitative exploration of knowledge and attitudes towards disability of young people within Moldova. Attitudes towards people with disabilities have an important role in determining their success in becoming accepted and valued community members. This entails more than being present in the community e inclusive education and employment alongside people without disabilities indicate more profound integration and acceptance.13 In ratifying the UN Convention on the Rights of Persons with Disabilities, Moldova has signalled a new approach to enabling and empowering its disabled population.7 Nevertheless, numerous barriers remain to full community integration which this research highlights. Perhaps the greatest challenges to overcome are the negative cultural attitudes towards people with disabilities reported by the participants. The UN report exploring the rights of people with disabilities in Moldova emphasised ”negative and stereotyped perceptions of disabled people permeate every facet of Moldovan society”.2 A recent survey within Moldova14 also identified attitudes regarding people with physical
3
disabilities as “a burden” and “helpless” and people with learning disabilities being “insane”, and “underdeveloped”. A substantial minority (39%) also perceived people with learning disabilities as potentially dangerous,14 and these attitudes were reflected in our study. Participants reported observing more negative attitudes in their peers, however is difficult to discern whether this reflects a negative shift in the cultural attitudes of young people in Moldova, or if these attitudes positively change with age. Nonetheless, these negative attitudes to disability are not unique to Moldovan society, being pervasive internationally. The origin of these negative attitudes has been attributed to the “geographically and culturally specific interpretation of the medical model of disability” throughout Moldovan society and state policies.2 Whilst our participants demonstrated a broad awareness of disabilities, their aetiological knowledge was largely restricted to congenital disorders or traumatic injury. This common conception of disability,15 as a direct consequence of an underlying pathology, perpetuates the belief that the impact of disabilities can only be ameliorated through medical treatment. This also contributes to the widespread perception of people with disabilities as “abnormal”, as distinct from “healthy” persons.2 This was present within our focus groups, as people with disabilities were frequently described as “abnormal”, or “suffering”. These perceptions do not recognise the contribution of social and environmental contributions to the activity limitations and participation restrictions associated with disability, affecting understanding of how the impact of disability should best be addressed.16 Not all of the participants reflected this narrative, and there were several examples of more positive attitudes. A lack of education and exposure to people with disabilities was viewed as the predominant cause of many of the negative attitudes. Importantly, those who have prior contact with people with disabilities often display a broader understanding of what constitutes disability,17 and overall more positive attitudes.18 Negative social attitudes create direct and indirect barriers to equality for people with disabilities. This limits perspectives on their role in society and potential contributions,19 which subsequently influences service providers, employers, and policymakers. Therefore, if views expressed here are representative, people with disabilities in Moldova are likely to encounter discrimination in terms of education and employment.13 However, there is evidence that community attitudes in Eastern Europe are changing in favour of integration.20 There was an evident bias expressed in the focus groups against long-term care institutions, however there remained conflicting attitudes on integration of children with disabilities in the community. Social services have an important role in providing support for parents of children with disabilities.21 However, the Moldovan government has recently committed to deinstitutionalization, and has invested in community-based services with the aim of progressively working to ensure protected housing, and personal assistance programmes with trained practitioners in the community.2,7 Similarly, the views on inclusive education differed, and participants were generally less accepting of learning children with disabilities being included in mainstream education. Due to the heterogeneous nature of learning impairment, it is difficult to assume that one approach, integrated or specialised education, is superior for all children. Indeed, the UN Convention7 advocates only that every child has the ‘right to choose’ an inclusive education at all levels. Furthermore, our participants reported that many Moldovan buildings were inaccessible, particularly for wheelchair users. It has been previously highlighted that “legal and policy frameworks relating to physical accessibility in the Republic of Moldova are weak or not appropriately implemented”.2 These accessibility issues further impede social, educational, occupational, and political participation.22e24 Nevertheless, such physical barriers are an
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004
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K.A. McLean et al. / Disability and Health Journal xxx (2017) 1e4
ongoing international issue, and not limited to Moldova.25 5. Limitations and future work This study serves to improve understanding of the barriers that people with disabilities can face within Moldova, however there are several important limitations. Perhaps the greatest practical challenge was the language barrier. This limited the extent to which rapport could be built, and for probing further with follow-up questions. Furthermore, particularly within a qualitative study, there is the potential for misunderstanding at any level or shaping of answers by translators.26 There were also difficulties in the recruitment of participants which entailed the target numbers were not achieved. These included: a limited time-period to conduct the interviews; the potentially sensitive content; and scepticism surrounding the purpose of such studies. Therefore, the opinions reported may not reflect the full spectrum of the community, or the participants themselves. Finally, it must be acknowledged that the experiences of people with disabilities were not directly explored. It was recognised that the prerequisite support services required to ethically conduct these interviews could not be provided at the time. As such, this study may not include the full scope of issues that people with disabilities experience. Future research has a role to further elucidate the contributing factors to these issues, and so identify how they can be addressed and overcome to promote community integration within Moldova. 6. Conclusion People with disabilities in Moldova continue to experience negative cultural attitudes linked to an outdated conception of disability itself, and an absence of community support services and infrastructure that can adequately address barriers to community inclusion. These barriers impede interaction and participation within local communities, and so opportunities to refute persistent stereotypes and stigma surrounding disability, perpetuating these further. With an increasing drive towards full integration of people with disabilities, there must be consideration of how these issues will be addressed. Specific and material action is required to build upon the recent governmental resolutions to support their disabled population. Funding/conflict of interest This study was conducted on behalf of Students for Kids International Projects (SKIP), UK Charity Number 1099804, and received funding as a result. Prior presentations Presentation at the Royal College of Psychiatrists (RCPsych) Faculty of Intellectual Disability Annual Conference 2016 (Mercure Hotel, Cardiff). Appendix A. Supplementary data Supplementary data related to this article can be found at http://
dx.doi.org/10.1016/j.dhjo.2017.01.004. References 1. Innocenti Research Centre. Innocenti Insight: Children and Disability in Transition in CEE/CIS and Baltic States. Florence, Italy: United Nations Children’s Fund (UNICEF); 2005. 2. United Nations (UN) Human Rights Council. Report of the Special Rapporteur on the Rights of Persons with Disabilities on Her Mission to the Republic of Moldova. Geneva: United Nations; 2016. 3. Sammon E. Defying Prejudice, Advancing Equality 2: Children and Disability in the Context of Family Breakdown in Central and South Eastern Europe and the Former Soviet Union. London: EveryChild. 2001. 4. Morrison L. Ceausescu's legacy: family struggles and institutionalization of children in Romania. J Fam Hist. 2004;29(2):168e182. 5. Rosenthal E, Bauer E, Hayden M, Holley A. Implementing the right to community integration for children with disabilities in Russia: a human rights framework for international action. Health Hum Rights. 1999;4(1):82e113. 6. Open Societies Foundation. Moldova Moves to Protect the Rights of People with Mental Disabilities; 2008. Available from: http://www.opensocietyfoundations. org/press-releases/moldova-moves-protect-rights-people-mental-disabilities. Accessed: 11 August 2016. 7. United Nations (UN) Human Rights Council. The Right of Persons with Disabilities to Social Protection: Republic of Moldova. Geneva: United Nations; 2015. 8. Phillips S. “There are no invalids in the USSR!”: a missing soviet chapter in the new disability history. Disabil Stud Q. 2009;29(3). http://www.dsq-sds.org/ article/view/936. 9. Korkunov V, Nigayev A, Reynolds L, Lerner J. Special education in Russia: history, reality, and prospects. J Learn Disabil. 1998;31(2):186e192. 10. Corrigan P. Best practices: strategic stigma change (SSC): five principles for social marketing. Psychiatr Serv. 2011;62(8):824e826. 11. Harden J, Backett-Milburn K, Jackson S, Scott S. Can't talk, won't talk?: methodological issues in researching children. Sociol Res Online. 2000;5(2). http:// www.socresonline.org.uk/5/2/harden.html. 12. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77e101. 13. Cummins R, Lau A. Community integration or community exposure? A review and discussion in relation to people with intellectual disabilities. J Appl Res Intellect Disabil. 2003;16(2):145e157. 14. Soros Foundation. Perceptions of the Population of the Republic of Moldova on Discrimination: Sociological Study. Chisinau: Soros Foundation; 2011. 15. Oliver M. Theories of disability in health practice and research. BMJ. 1998;317(7170):1446e1449. 16. Dixon D, Powell R, Johnston M. Physical disability. In: Alder B, Abraham C, van Teijlingen E, Porter M, eds. Psychology and Sociology Applied to Medicine. third ed. Edinburgh: Churchill Livingstone; 2009. 17. Rigg J. Disabling attitudes? Public perspectives on disabled people. In: Park A, ed. British Social Attitudes: The 23rd Report. London: SAGE; 2007. 18. Wilson M, Scior K. Implicit attitudes towards people with intellectual disabilities: their relationship with explicit attitudes, social distance, emotions and contact. PLoS One. 2015;10(9):e0137902. 19. Centers for Disease Control and Prevention. Common Barriers to Participation Experienced by People with Disabilities; 2016. Available from: http://www.cdc. gov/ncbddd/disabilityandhealth/disability-barriers.html. Accessed: 11 August 2016. 20. Mussida C, Sciulli D. Disability and employment across central and eastern european countries. IZA J Labor Dev. 2016;5:4. 21. Kayama M, Haight W. Disability and stigma: how Japanese educators help parents accept their children's differences. Soc Work. 2014;59(1):24e33. 22. Ephraim P, MacKenzie E, Wegener S, Dillingham T, Pezzin L. Environmental barriers experienced by amputees: the craig hospital inventory of environmental factors-short form. Arch Phys Med Rehabil. 2006;87(3):328e333. 23. Iezzoni L, Killeen M, O'Day B. Rural residents with disabilities confront substantial barriers to obtaining primary care. Health Serv Res. 2006;41(4): 1258e1275. 24. Law M, Petrenchik T, King G, Hurley P. Perceived environmental barriers to recreational, community, and school participation for children and youth with physical disabilities. Arch Phys Med Rehabil. 2007;88(12):1636e1642. 25. Stillman M, Frost K, Smalley C, Bertocci G, Williams S. Health care utilization and barriers experienced by individuals with spinal cord injury. Arch Phys Med Rehabil. 2014;95(6):1114e1126. 26. Temple B, Young A. Qualitative research and translation dilemmas. Qual Res. 2004;4(2):161e178.
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004
Contents lists available at ScienceDirect
Disability and Health Journal journal homepage: www.disabilityandhealthjnl.com
Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views Kenneth A. McLean a, *, Samantha Hardie b, Abigail Paul a, Gary Paul a, Iain Savage a, Paul Shields a, Rebecca Symes a, Joanna Wilson a, Catherine Winstanley a, Jeni Harden b a b
Medical School, University of Edinburgh, United Kingdom Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, United Kingdom
a r t i c l e i n f o
a b s t r a c t
Article history: Received 20 August 2016 Received in revised form 9 January 2017 Accepted 21 January 2017
Background: People with disabilities in the Republic of Moldova continue to experience considerable discrimination and social exclusion. The Moldovan government recently affirmed their commitment to promote community integration. However, there remains limited evidence to facilitate understanding of these issues, and barriers to the integrative process. Objective: This study explored the knowledge and attitudes towards disability of young people within Moldova. Methods: A qualitative approach was adopted and 3 semi-structured focus group interviews were conducted with schoolchildren (n ¼ 12), aged 13e15 years. These interviews focussed on different aspects of disability, and community integration. Pictorial and written vignettes were used to stimulate discussion. The interviews were conducted and recorded in Romanian, and were subsequently translated into English to facilitate thematic data analysis. Results: Identified themes included: (1) Knowledge and understanding of disability. The young people's knowledge was limited and framed by the medical model of disability; (2) Attitudes towards community integration. A bias against long-term care institutions, but differing views regarding integration; (3) Perceptions of barriers to community integration: (i) Cultural barriers. Negative, even hostile attitudes towards disability; (ii) Policy barriers. Poor support services; and (iii) Physical barriers. Ongoing issues regarding accessibility. Conclusions: People with disabilities in Moldova experience negative cultural attitudes linked to an outdated conception of disability itself. There are inadequate community support services and infrastructure which act as barriers to inclusion. At present, there can be limited interaction and participation of people with disabilities within local communities, and so few opportunities to refute persistent stereotypes and stigma surrounding disability. © 2017 Elsevier Inc. All rights reserved.
Keywords: Qualitative Young people Attitudes to disability Integration
1. Background For decades in Eastern Europe, the primary methods of care for children with disabilities have been either restriction to their home, or segregation within long-term residential care institutions, isolated from the wider community.1 There are currently more than 180,000 people with disabilities in Moldova.2 (5.2% of the
* Corresponding author. Centre for Population Health Sciences, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Teviot Place, Edinburgh, EH8 9LN, United Kingdom. E-mail address: [email protected] (K.A. McLean).
population), and over 1/3 of children with disabilities thought to reside in institutional care.1 This is likely due to a lack of community-based support services,2e4 alongside common acceptance of this practice.5 Moldova remains the least economically developed country in Europe, and has received increased scrutiny regarding human rights.2 However, the government has recently affirmed their commitment to protect the rights of people with disabilities to legal capacity, and to promote community integration.6,7 However,, true integration is likely to be hindered through the persistence of restrictive Soviet era views on ”defectives” or “invalids” following independence in 1991.8,9 There remains a strong, pervasive stigma, likely perpetuated through the lack of visibility of and exposure to
http://dx.doi.org/10.1016/j.dhjo.2017.01.004 1936-6574/© 2017 Elsevier Inc. All rights reserved.
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004
2
K.A. McLean et al. / Disability and Health Journal xxx (2017) 1e4
people with disabilities,10 which was highlighted in the UN special rapporteur on the rights of persons with disabilities recent report on Moldova.2 However, there remains limited evidence available to facilitate understanding of these issues. Therefore, this study aimed to explore the knowledge and attitudes towards disability of young people within the local community surrounding a residential care institution in Moldova.
participants and their parents prior to inclusion. Our interview questions were structured as to not explicitly require personal information to be given, and vignettes were utilised due to the age of participants.11 We emphasised that participants could decline to answer any question, or withdraw at any point. Furthermore, we highlighted the availability of the guidance councillor within the school if they wished to speak about any personal issues that arose.
2. Methods
3. Results
2.1. Study design
3.1. Knowledge and understanding of disability
This qualitative study was conducted using semi-structured interviews to produce detailed data regarding the knowledge and attitudes of disability within the community surrounding a residential institution for children with disabilities in Moldova. The interviews utilised a topic guide with open questions, and vignettes to facilitate discussion (Appendix A). These were developed through review of the literature; input from local community members; and expert consultation.
All participants were aware of people with disabilities within their community, although few had first-hand interactions. The broad categories of physical and mental disabilities were well known in all groups, and all groups were able to identify the first (“Vasile”) and second vignette (“Olga”) as descriptions of these, respectively. However, just one participant could state a specific condition (Down's Syndrome). The suggested causes of disabilities comprised traumatic injury or prenatal environmental factors (“radiation”, “alcohol”, “drugs”). Language used across the focus groups suggested a perceived dichotomy between people with (referred to as “abnormal”, invalid”) and without disabilities. Participants explained that factors considered as indicative of learning impairment were age-inappropriate behaviours (“40something years old, but behaves like a thirteen year-old child”), or non-adherence to social convention (“does not control himself”). However, participants differed on the severity of “Olga's” learning disability, and its functional impact, with some suggesting “she would be able to do anything, because she doesn't have movement problems … she can work”.
2.2. Recruitment The study was conducted within the context of the local secondary school of a small town in Moldova. This location was selected based on its proximity to a residential institution, and the school management team were contacted to obtain their full and informed approval prior to the study. Recruitment packs were distributed to all 40 schoolchildren in the eligible age group (ages 13e15) during class. Informed consent was obtained from all participants and their parents prior to inclusion. All written and verbal communication were translated into Romanian (the predominate language) throughout the study. 2.3. Data collection The final sample consisted of 12 schoolchildren, arranged into 3 focus groups. These were conducted between 16th May and 2nd June 2014 in a private room within the school, and lasted from 35 to 45 min. Open questions allowed participants to volunteer their own experiences with disability and to explore their understanding of particular issues. We adopted the vignette method as an appropriate tool for conducting research with children and young people.11 One researcher facilitated each group, supported by a translator. All interviews were digitally recorded, with permission from the participants. 2.4. Data analysis The audio files were transcribed into English by a Romanian translator. These transcripts were anonymised and identifying details removed prior to being archived as digital word processed files. The transcripts were read by two authors (KAM, SH), and a coding frame devised to comprise the initial themes identified. Relevant segments of text were selected and independently coded by the two authors according to these themes to facilitate thematic analysis.12 The codes generated were discussed and collated in order to compare interpretations and identify common themes across participants' accounts. .
3.2. Attitudes towards community integration There was a common agreement that living with their family is the ideal circumstance for children with disabilities. The participants raised the importance of love and protection, contrasting this with life in an institution, suggesting “it's better if family love only surrounded him”, and that “[their] family can offer protection and help them … they suffer [being institutionalised]”. In contrast, some participants felt that an institution could be beneficial for facilitating social interaction with other people with disabilities or when the family would not accept their child with disabilities (“If [they are] unwanted”). The other felt that the appropriateness of institutional care was related to the nature of the disability (“if [they] have a mental disability maybe is better for [them] to be in a special school with other people like [them]”). Although there was a consensus that all people with disabilities could benefit from education, there were conflicting views on the appropriate educational context. Some participants stated all children with disabilities should be integrated into mainstream (“normal”) schools, and it was felt this could benefit all students. These included exposure to the “atmosphere of normal people” and promotion of social integration. One participant raised the broader point that the needs of people with disabilities require consideration whatever the educational context, and that there needs to be appropriate support provided. 3.3. Perceptions of barriers to community integration a) Cultural Barriers:
2.5. Ethics Institutional ethical approval was obtained in advance from the University of Edinburgh. Informed consent was required from both
A range of attitudinal barriers were identified which could hinder further community integration of people with disabilities. Many participants reported negative, even hostile attitudes
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004
K.A. McLean et al. / Disability and Health Journal xxx (2017) 1e4
amongst young people within the community in reaction to people with disabilities (“some who ignore them … fewer who swear at them” … “[Others] could discriminate … they would laugh at [people with disabilities ]”). Similarly, some also thought that community members perceived a potential threat from people with disabilities (“they are scared that [they] can cause some harm”, or “may be aggressive and abuse other people.”). In contrast to their peers, most participants displayed a sympathetic attitude towards people with disabilities, which they felt was more prevalent in older community members: “The older [community members] … they always want to educate you and tell you that you shouldn't joke about [people with disabilities], you need to help them and I think that's right, I mean that's how our society should be … but I think children, I think up to adolescence, they joke about these sorts of people.” There was a consensus that many of these attitudes are due to lack of exposure (“they are not used to [people with disabilities] in the family, on the street, in society”) and education (“I think most [community members] aren't sufficiently informed”). b) Policy Barriers: A lack of available support services was another fundamental issue highlighted. All groups recognised that in the second vignette (“Olga”) would require long-term, complex care however none were aware of such services being provided by the state. Furthermore, the financial support towards care costs was also felt to be inadequate and a barrier to people with disabilities living at home (“the state needs to offer the family a monthly sum of money that's sufficient … to be able to care for [them])”. c) Physical barriers: People with impaired mobility were also reported to face physical barriers in the community. Although participants reported some buildings had wheelchair access, one reported “less than half of them were okay to use”. It was recognised that more was needed to maximise the independence of people with impaired mobility as “he has to get out of his home, come back home, get out of the building”. However, positive changes have been noted recently as compared “to a few years ago … at [supermarket] … there is a special path for entering with wheelchairs … it's a start.” 4. Discussion This study represents the first qualitative exploration of knowledge and attitudes towards disability of young people within Moldova. Attitudes towards people with disabilities have an important role in determining their success in becoming accepted and valued community members. This entails more than being present in the community e inclusive education and employment alongside people without disabilities indicate more profound integration and acceptance.13 In ratifying the UN Convention on the Rights of Persons with Disabilities, Moldova has signalled a new approach to enabling and empowering its disabled population.7 Nevertheless, numerous barriers remain to full community integration which this research highlights. Perhaps the greatest challenges to overcome are the negative cultural attitudes towards people with disabilities reported by the participants. The UN report exploring the rights of people with disabilities in Moldova emphasised ”negative and stereotyped perceptions of disabled people permeate every facet of Moldovan society”.2 A recent survey within Moldova14 also identified attitudes regarding people with physical
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disabilities as “a burden” and “helpless” and people with learning disabilities being “insane”, and “underdeveloped”. A substantial minority (39%) also perceived people with learning disabilities as potentially dangerous,14 and these attitudes were reflected in our study. Participants reported observing more negative attitudes in their peers, however is difficult to discern whether this reflects a negative shift in the cultural attitudes of young people in Moldova, or if these attitudes positively change with age. Nonetheless, these negative attitudes to disability are not unique to Moldovan society, being pervasive internationally. The origin of these negative attitudes has been attributed to the “geographically and culturally specific interpretation of the medical model of disability” throughout Moldovan society and state policies.2 Whilst our participants demonstrated a broad awareness of disabilities, their aetiological knowledge was largely restricted to congenital disorders or traumatic injury. This common conception of disability,15 as a direct consequence of an underlying pathology, perpetuates the belief that the impact of disabilities can only be ameliorated through medical treatment. This also contributes to the widespread perception of people with disabilities as “abnormal”, as distinct from “healthy” persons.2 This was present within our focus groups, as people with disabilities were frequently described as “abnormal”, or “suffering”. These perceptions do not recognise the contribution of social and environmental contributions to the activity limitations and participation restrictions associated with disability, affecting understanding of how the impact of disability should best be addressed.16 Not all of the participants reflected this narrative, and there were several examples of more positive attitudes. A lack of education and exposure to people with disabilities was viewed as the predominant cause of many of the negative attitudes. Importantly, those who have prior contact with people with disabilities often display a broader understanding of what constitutes disability,17 and overall more positive attitudes.18 Negative social attitudes create direct and indirect barriers to equality for people with disabilities. This limits perspectives on their role in society and potential contributions,19 which subsequently influences service providers, employers, and policymakers. Therefore, if views expressed here are representative, people with disabilities in Moldova are likely to encounter discrimination in terms of education and employment.13 However, there is evidence that community attitudes in Eastern Europe are changing in favour of integration.20 There was an evident bias expressed in the focus groups against long-term care institutions, however there remained conflicting attitudes on integration of children with disabilities in the community. Social services have an important role in providing support for parents of children with disabilities.21 However, the Moldovan government has recently committed to deinstitutionalization, and has invested in community-based services with the aim of progressively working to ensure protected housing, and personal assistance programmes with trained practitioners in the community.2,7 Similarly, the views on inclusive education differed, and participants were generally less accepting of learning children with disabilities being included in mainstream education. Due to the heterogeneous nature of learning impairment, it is difficult to assume that one approach, integrated or specialised education, is superior for all children. Indeed, the UN Convention7 advocates only that every child has the ‘right to choose’ an inclusive education at all levels. Furthermore, our participants reported that many Moldovan buildings were inaccessible, particularly for wheelchair users. It has been previously highlighted that “legal and policy frameworks relating to physical accessibility in the Republic of Moldova are weak or not appropriately implemented”.2 These accessibility issues further impede social, educational, occupational, and political participation.22e24 Nevertheless, such physical barriers are an
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004
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ongoing international issue, and not limited to Moldova.25 5. Limitations and future work This study serves to improve understanding of the barriers that people with disabilities can face within Moldova, however there are several important limitations. Perhaps the greatest practical challenge was the language barrier. This limited the extent to which rapport could be built, and for probing further with follow-up questions. Furthermore, particularly within a qualitative study, there is the potential for misunderstanding at any level or shaping of answers by translators.26 There were also difficulties in the recruitment of participants which entailed the target numbers were not achieved. These included: a limited time-period to conduct the interviews; the potentially sensitive content; and scepticism surrounding the purpose of such studies. Therefore, the opinions reported may not reflect the full spectrum of the community, or the participants themselves. Finally, it must be acknowledged that the experiences of people with disabilities were not directly explored. It was recognised that the prerequisite support services required to ethically conduct these interviews could not be provided at the time. As such, this study may not include the full scope of issues that people with disabilities experience. Future research has a role to further elucidate the contributing factors to these issues, and so identify how they can be addressed and overcome to promote community integration within Moldova. 6. Conclusion People with disabilities in Moldova continue to experience negative cultural attitudes linked to an outdated conception of disability itself, and an absence of community support services and infrastructure that can adequately address barriers to community inclusion. These barriers impede interaction and participation within local communities, and so opportunities to refute persistent stereotypes and stigma surrounding disability, perpetuating these further. With an increasing drive towards full integration of people with disabilities, there must be consideration of how these issues will be addressed. Specific and material action is required to build upon the recent governmental resolutions to support their disabled population. Funding/conflict of interest This study was conducted on behalf of Students for Kids International Projects (SKIP), UK Charity Number 1099804, and received funding as a result. Prior presentations Presentation at the Royal College of Psychiatrists (RCPsych) Faculty of Intellectual Disability Annual Conference 2016 (Mercure Hotel, Cardiff). Appendix A. Supplementary data Supplementary data related to this article can be found at http://
dx.doi.org/10.1016/j.dhjo.2017.01.004. References 1. Innocenti Research Centre. Innocenti Insight: Children and Disability in Transition in CEE/CIS and Baltic States. Florence, Italy: United Nations Children’s Fund (UNICEF); 2005. 2. United Nations (UN) Human Rights Council. Report of the Special Rapporteur on the Rights of Persons with Disabilities on Her Mission to the Republic of Moldova. Geneva: United Nations; 2016. 3. Sammon E. Defying Prejudice, Advancing Equality 2: Children and Disability in the Context of Family Breakdown in Central and South Eastern Europe and the Former Soviet Union. London: EveryChild. 2001. 4. Morrison L. Ceausescu's legacy: family struggles and institutionalization of children in Romania. J Fam Hist. 2004;29(2):168e182. 5. Rosenthal E, Bauer E, Hayden M, Holley A. Implementing the right to community integration for children with disabilities in Russia: a human rights framework for international action. Health Hum Rights. 1999;4(1):82e113. 6. Open Societies Foundation. Moldova Moves to Protect the Rights of People with Mental Disabilities; 2008. Available from: http://www.opensocietyfoundations. org/press-releases/moldova-moves-protect-rights-people-mental-disabilities. Accessed: 11 August 2016. 7. United Nations (UN) Human Rights Council. The Right of Persons with Disabilities to Social Protection: Republic of Moldova. Geneva: United Nations; 2015. 8. Phillips S. “There are no invalids in the USSR!”: a missing soviet chapter in the new disability history. Disabil Stud Q. 2009;29(3). http://www.dsq-sds.org/ article/view/936. 9. Korkunov V, Nigayev A, Reynolds L, Lerner J. Special education in Russia: history, reality, and prospects. J Learn Disabil. 1998;31(2):186e192. 10. Corrigan P. Best practices: strategic stigma change (SSC): five principles for social marketing. Psychiatr Serv. 2011;62(8):824e826. 11. Harden J, Backett-Milburn K, Jackson S, Scott S. Can't talk, won't talk?: methodological issues in researching children. Sociol Res Online. 2000;5(2). http:// www.socresonline.org.uk/5/2/harden.html. 12. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77e101. 13. Cummins R, Lau A. Community integration or community exposure? A review and discussion in relation to people with intellectual disabilities. J Appl Res Intellect Disabil. 2003;16(2):145e157. 14. Soros Foundation. Perceptions of the Population of the Republic of Moldova on Discrimination: Sociological Study. Chisinau: Soros Foundation; 2011. 15. Oliver M. Theories of disability in health practice and research. BMJ. 1998;317(7170):1446e1449. 16. Dixon D, Powell R, Johnston M. Physical disability. In: Alder B, Abraham C, van Teijlingen E, Porter M, eds. Psychology and Sociology Applied to Medicine. third ed. Edinburgh: Churchill Livingstone; 2009. 17. Rigg J. Disabling attitudes? Public perspectives on disabled people. In: Park A, ed. British Social Attitudes: The 23rd Report. London: SAGE; 2007. 18. Wilson M, Scior K. Implicit attitudes towards people with intellectual disabilities: their relationship with explicit attitudes, social distance, emotions and contact. PLoS One. 2015;10(9):e0137902. 19. Centers for Disease Control and Prevention. Common Barriers to Participation Experienced by People with Disabilities; 2016. Available from: http://www.cdc. gov/ncbddd/disabilityandhealth/disability-barriers.html. Accessed: 11 August 2016. 20. Mussida C, Sciulli D. Disability and employment across central and eastern european countries. IZA J Labor Dev. 2016;5:4. 21. Kayama M, Haight W. Disability and stigma: how Japanese educators help parents accept their children's differences. Soc Work. 2014;59(1):24e33. 22. Ephraim P, MacKenzie E, Wegener S, Dillingham T, Pezzin L. Environmental barriers experienced by amputees: the craig hospital inventory of environmental factors-short form. Arch Phys Med Rehabil. 2006;87(3):328e333. 23. Iezzoni L, Killeen M, O'Day B. Rural residents with disabilities confront substantial barriers to obtaining primary care. Health Serv Res. 2006;41(4): 1258e1275. 24. Law M, Petrenchik T, King G, Hurley P. Perceived environmental barriers to recreational, community, and school participation for children and youth with physical disabilities. Arch Phys Med Rehabil. 2007;88(12):1636e1642. 25. Stillman M, Frost K, Smalley C, Bertocci G, Williams S. Health care utilization and barriers experienced by individuals with spinal cord injury. Arch Phys Med Rehabil. 2014;95(6):1114e1126. 26. Temple B, Young A. Qualitative research and translation dilemmas. Qual Res. 2004;4(2):161e178.
Please cite this article in press as: McLean KA, et al., Knowledge and attitudes towards disability in Moldova: A qualitative study of young people's views, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.01.004