Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2015, 28, 3–11
Health Inequity in People with Intellectual Disabilities: From Evidence to Action Applying an Appreciative Inquiry Approach Jenneken Naaldenberg*, Roger Banks†, Nick Lennox‡, Helene Ouellette-Kunz§, Marijke Meijer¶ and Henny van Schrojenstein Lantman-de Valk* *Department of Primary and Community Care – Intellectual Disabilities and Health, Radboud University Medical Center, HB Nijmegen, The Netherlands; †University of Bangor, Wales, UK; ‡Queensland Centre for Intellectual and Developmental Disability, School of Medicine, The University of Queensland, Brisbane, Qld, Australia; §Department of Public Health Sciences, Queen’s University, Kingston, ON, Canada; ¶Ipse de Bruggen, Care for people with intellectual and multple disabilities, Zwammerdam, The Netherlands
Accepted for publication 19 September 2014
Background The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops. Materials and methods The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach. Results A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how
Introduction People with intellectual disabilities have more health problems and die at an earlier age than people in the general population. The amount of evidence related to these disparities is large and still increasing (OuelletteKuntz et al. 2005; Van Schrojenstein Lantman-De Valk 2005; Krahn et al. 2006; van Schrojenstein Lantman- Valk & Walsh 2008; Lennox et al. 2010; Taggart & Cousins 2013). Emerson et al. (2011) summarize the main contributors to health inequalities among people with intellectual disabilities into five comprehensive factors, being: (i) social determinants such as poverty, poor housing, social disconnectedness and unemployment, (ii) health problems related to intellectual disabilities, © 2014 John Wiley & Sons Ltd
and visibility and a pervasive theme, that of personcentered support. Conclusion Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required. Keywords: appreciative intellectual disabilities
inquiry,
health
inequity,
(iii) communicative problems and illiteracy, (iv) unfavourable behaviours relating to diet and exercise, (v) poor access to mainstream health care (Emerson 2011; Emerson et al. 2011). However, available evidence does not readily translate into practice (Naaldenberg et al. 2013). Therefore, the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) Health Special Interest Research Group organized a conference entitled: ‘Health inequity: from evidence to action’. This conference was held on November 7 and 8 2013 in Nijmegen, the Netherlands. The first day of this conference offered evidence through key note presentations and poster sessions on empirical studies. The second day aimed to move 10.1111/jar.12130
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towards action by means of workshops in which participants discussed several issues related to the health of people with intellectual disabilities. This study reports on the outcomes of these workshops.
Appreciative inquiry To guide the workshops in moving ‘from evidence to action’, an appreciative inquiry approach was used. Appreciative inquiry was developed within the context of organizational change management (Cooperrider 2005). Since its introduction in organizational change management, it has frequently been used in (health) research and as an interview and field research tool (Michael 2005; Melander-Wikman et al. 2006; Reed et al. 2008; Naaldenberg et al. 2011). Appreciative inquiry is an assets-based approach that aims to focus on the best of ‘what is’ and to envision desired situations. Table 1 compares the appreciative inquiry approach to the more commonly used problem solving approach. As the aim of the conference was to move towards the next step, from evidence to action by building on existing evidence to develop solutions, appreciative inquiry seemed an appropriate approach. Moreover, it could be helpful both in preventing the workshops from (re-) defining problems that are already known to exist and to allow participants that are not necessarily involved in the definition of the problem to contribute their knowledge and experiences in discussing solutions. Appreciative inquiry enables collective learning processes by sharing positive experiences and ideas. The original organization change method follows the socalled 4-D cycle: Discovery, Dream, Design and Destiny and takes multiple sessions to complete (Cooperrider et al. 2005). Due to constraints of time, the workshops were limited to covering the first two steps, resulting in the sharing of positive experiences and creating a shared vision.
Table 1 Appreciative inquiry versus problem solving Problem solving Identification of problem Analysis of causes Analysis of possible solutions Action planning
Appreciative inquiry Appreciating, valuing the best of what is Envisioning, what might be Dialoguing, what should be Innovating, what will be
Methods Participants A total of 134 conference participants attended the workshops (excluding workshop leaders and assistants). Of these participants, 116 were from the Netherlands, with others representing nine other countries (six from the UK, three from Belgium, two from Germany and two from Australia, one from Finland, USA, Serbia, Canada and Sweden each). Participants had different professional backgrounds, for example: (specialized) physicians, nurses, managers, researchers, teachers and specialized therapists. Each workshop consisted of 12–20 participants, a workshop leader and a workshop assistant. The workshop leaders and assistants were briefed about the content and methods of the workshop through written information at a preparation meeting the day before the conference started. The self-advocates’ workshop consisted of five selfadvocates with two supporters, a workshop leader and two workshop assistants. This workshop followed an adapted protocol in which self-advocates shared their ideas and experiences concerning healthy living and tips they knew about how to live a healthy life. Written easy to read information about the content of the conference, the workshop and informed consent forms were sent to self-advocates before the workshop took place.
Workshops process and content Each workshop consisted of two sessions of 90 min each. Both sessions were followed by a plenary feedback session in which each workshop leader briefly informed all conference participants about the discussions and outcomes of their workshop. Participants were in the same workshop for both sessions. Workshops focused on three main topics established in advance by the conference program committee: (i) health promotion and prevention, (ii) treatment and management of health problems and (iii) healthcare delivery and models of healthcare organization. To make sure all aspects of a topic would receive attention, each workshop focused on one of the following: (i) research, (ii) education or (iii) policy/practice. Table 2 provides an overview of the workshops and their themes and foci.
Session I This session started with a short introduction by all participants and an introduction to appreciative inquiry © 2014 John Wiley & Sons Ltd, 28, 3–11
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Table 2 Workshop structure
Health promotion and disease prevention Treatment and management of health problems Healthcare delivery and models of healthcare organization
with a short exercise by the workshop leader. Participants then exchanged stories in pairs or small groups, first telling each other about their work with people with intellectual disabilities and their most positive experiences. Next, participants shared three wishes they had with regard to what they would like to improve concerning the health inequities experienced by people with intellectual disabilities. These stories and wishes were shared within the workshop. Finally, from the shared stories, the workshop leader and assistant prepared a brief written report and a 3-slide presentation for the plenary feedback session.
Session II Key themes from the first session were selected by workshop participants and workshop leaders. Next, participants worked in small groups to formulate ‘provocative propositions’ around these key themes. Provocative propositions are used in appreciative inquiry as stretching statements to reflect, in the present tense, how you would talk about your work when you would be working to your highest aspirations (Cooperrider et al. 2005). Thus, the propositions reflect what actions and results would look like under the best circumstances participants could imagine. These propositions were shared and discussed within the workshop and prioritized, resulting in a shared vision which was added to the report and presented in the plenary feedback session.
Analysis of workshop reports Workshop assistants, in collaboration with workshop leaders, prepared a brief (2–4 page) report on the workshops during or shortly after the conference. The reports consisted of: the outcomes of both workshop sessions (stories, wishes, propositions, visions, mentioned resources), a general impression of the workshop and a short reflection on the use of appreciative inquiry. These workshop reports were labelled as per Table 2 and imported in Atlas ti software (Scientific Software © 2014 John Wiley & Sons Ltd, 28, 3–11
Research
Education
A1 B1 C1
A2 B2 C2
Policy and practice A3 B3 C3
Self-advocates D1
Development) which supports coding, organizing and analysis of qualitative data (Friese 2011). Reports were coded bottom up by assigning a code describing the content of each segment of text. Next, these descriptive codes were grouped into categories of similar codes. This resulted in a set of overarching themes with related categories and subcategories of coded text fragments. In this way, the pre-defined topics and foci of the workshops facilitated the discussions while the bottomup analysis allowed the highlighting of general themes across the topics and foci. Reports were analysed by the first author (JN). To increase reliability and validity, the outcomes were discussed frequently between JN and HL and were sent to all workshop leaders and assistants for member checking.
Outcomes The analysis of workshop reports resulted in three main themes, being: approach, ‘know-how’ and visibility. These themes related to each other through a common and pervasive theme from the collected propositions and visions, that of person-centred support. Each theme and its sub themes are described below. Quotations presented were translated from Dutch where necessary and refer to experiences, wishes, propositions or visions as formulated in the workshops.
Approach Engaging individuals who play a significant role in the lives of people with intellectual disabilities was considered as an important element to improve the way health issues are recognized and addressed. Participants mentioned positive experiences working within community teams, involving care givers in healthy living programs including educating care givers about healthy eating. To enable the engagement of this broader environment, several prerequisites were identified such as: stakeholder empowerment and equal distribution of power, thereby enabling those involved to contribute as much as they want; supported communication among all involved including people with intellectual disabilities as
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experts from experience; and the need for enthusiasts that advocate, stimulate and facilitate involvement. This could be further facilitated by a strong vision on health throughout care organizations involved: Vision: Embed healthy lifestyles in regular care plans, it should be normal for people with intellectual disabilities to walk or bike to their day activities (B1). The formulated wishes in the workshops reflected the desire to involve care givers (advocacy, key role in healthy living) and family (empower family members, more active involvement), but also managers, policymakers (need for a strong vision regarding health) and general practice, preferably in the form of a collaborating team. The physical environment was represented especially in terms of the wish to make mainstream sports facilities accessible and inclusive of people with intellectual disabilities: Vision/wish: Government gives tax breaks for fitness club programs where users bring people with intellectual disabilities (A3). The need to promote greater well-being through inclusion of people with intellectual disabilities in society was also discussed. This begins with integration in mainstream primary schools and follows through to creating healthy environments and inclusive communities, and designing health care to be as accessible to people with intellectual disabilities as the general population. Research should also strive to be inclusive and actively identify groups that miss out on the care and support they need. The group of self-advocates discussed several examples in which the involvement of people in their environment contributed to healthier options for them. The availability of choice in meals and meal plans, having someone who wants to accompany you to the swimming pool or other sports activities were mentioned as positive examples. Having someone that can join you in sports activities makes it more fun and helps to build confidence such that people are able to help peers that struggle with a healthy lifestyle as well. Routines such as walking to the bus stop or riding a bike to the supermarket were mentioned as easy ways to get exercise. Experience: when we were fed up with our meal choices we sat around the table with our whole
group and discussed how we would prepare home cooked meals from now on. Also, at my workplace we get a weekly fruit basket now. Everyone can voice their preference of fruit and now we have fresh fruit daily (D1).
Know-how Discussions frequently referred to the importance of knowledge from experience, tacit knowledge and ‘knowhow’. As care givers play an important role in the lives of people with intellectual disabilities, many positive examples related to their know-how. Discussed experiences to create and share know-how included: the formation of special interest groups on chronic conditions and healthy lifestyles, teaching ‘on the job’, using teaching techniques for professional education that include the perspectives of people with intellectual disabilities or visual impairments and teaching care givers ways to cope with behavioural challenges in order to reduce the reliance on the prescription of psychotropic drugs to people with intellectual disabilities. It is not only care givers but also other stakeholders that require know-how about the special needs of people with intellectual disabilities. This is illustrated by the provocative proposition from workshop C3: Proposition: To play their role in enhancing health and wellbeing of someone with a disability, all stakeholders need a level of education about health and health issues relevant to their role and responsibility (C3). For stakeholders in regular (health-) care not specialized in intellectual disabilities, available intellectual disability related know-how should be made available. Helpful examples mentioned in the workshops were as follows: brief handouts or more detailed referral letters that include pointers on communication, on routines and on how to support people with intellectual disabilities in special situations (e.g. hospital admissions or air travel). Self-advocates also voiced having needs for knowhow. They said it can be very hard to know exactly what is healthy for you and under what circumstances. As an example one self-advocates said that he knew that kiwi fruit are healthy but some people are allergic to kiwi fruit. In that case, these are not a healthy option. There was a strongly expressed desire to ensure that the needs of people with intellectual disabilities are © 2014 John Wiley & Sons Ltd, 28, 3–11
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highlighted in mainstream health professionals education (nurses, general practice, specialists, etc.) in particular by including people with intellectual disabilities as ‘teachers from experience’, consultants and as healthcare quality checkers supported by (medical) students. Education for people with intellectual disabilities and their families (including support groups) was also called for. A safe and comfortable setting was mentioned as a prerequisite to facilitate learning (to care givers, family, people with intellectual disabilities). Wishes were expressed that learning originates from a felt responsibility and urgency to know more about the health needs of people with intellectual disabilities, this is illustrated by the following vision: Vision: In 5 years – all disability workers participate in identifying and creating the knowledge and skills they need to provide care to the people they support, and fulfill the responsibilities they have Their intrinsic motivation is harnessed when they feel valued, supported in non-judgmental way, and when the focus is on responsibility not knowledge. To account for people’s different learning styles, education is offered in a variety of ways – including creative, energizing ways of sharing information (C2).
Visibility The third theme related to increasing visibility of: (i) people with intellectual disabilities and their particular needs for support in health care and (ii) expertise and experience of professionals. Wishes for collecting evidence covered topics such as: evidence on long term impact of interventions, comparing evidence between countries, evidence on discontinuation of psychotropic medication, evidence with regard to palliative care, evidence on supporting people with autism in hospital settings, data on specific syndromes, tools for better health care and awareness of emerging health issues. Methodologically sound and relevant evidence was thought to be of great importance in influencing policy decisions. Linking scientific evidence with everyday practice and linking data sources internationally to strengthen evidence were mentioned as examples of making evidence ‘work’ in practice to create actions. Proposition: The highest quality health data are collected in a uniform way and universally © 2014 John Wiley & Sons Ltd, 28, 3–11
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accessible. Evidence based research drives practice and policies (C1). However, collecting the much needed evidence can be difficult. Participants mentioned the time it takes for health evidence (interventions) to change practice; often, interventions do not readily translate to practice. Multiple evaluation moments over time and in real-life settings are required to collect relevant evidence. Evidence-based practice and practice-based evidence are both required to improve health care. Successful experiences with regard to useful and usable evidence often referred to small changes and everyday situations such as: walking to work instead of taking the bus, making healthy choices more available and encouraging people to opt for these, and e-health on simple activities such as brushing teeth. The input of people with intellectual disabilities in the collection of evidence was mentioned both as a positive experience as well as a future aspiration. Though involving people with intellectual disabilities in research can be challenging, there is considerable experience and methodologies to draw on. One of the participants shared the example of using adapted surveys on tablet computers that enabled people with intellectual disabilities to participate in the evaluation of their health care. Sharing knowledge about people with intellectual disabilities and their needs was discussed as a positive experience and effective in advocating for people with intellectual disabilities and enhance the visibility of their needs. Examples included being available as coach or consultant (experienced with intellectual disabilities) to stakeholders working outside of the intellectual disabilities sector such as general practitioners, hospital nurses, therapists and other health professionals. Experience: I learn a lot by sharing knowledge and experiences with colleagues such as physicians, therapists and behavioral scientists (B2). There was a desire for increased collaboration and consultation between professional trained and experienced in working with people with intellectual disabilities and general health professionals. The Dutch intellectual disabilities specialized physicians participating in the workshops in particular felt that this could be greatly improved in their health system. Proposition: The intellectual disabilities physician should be better known within the healthcare system. This could be done by raising awareness on
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the intellectual disabilities physician in education for healthcare professionals. Awareness could be raised by including people with intellectual disabilities in the education programs (A2). Propositions, wishes and visions relating to the theme ‘visibility’ included a need for continuity in care and a care coordinator who has an affinity with people with intellectual disabilities. This would ensure the voice of person with intellectual disabilities would be heard, and their health needs recognized. Services should collaborate and work together for the benefit of people with intellectual disabilities. Systems for evaluation and accountability (to people with intellectual disabilities and other services) should be in place. The vision formulated in workshop C2 brought together many of these issues: Vision: A ‘Plan- Do- Act- Check’ cycle can be applied to continuing improvement, and share this information through the literature. This builds an evidence base to inform practice. The data informs education and professional development of disability support staff and health professionals. Over time, all involved learn more about the goals people have and ways to support them to live a rich and fulfilling life (C2).
To action: visions of person-centred support The propositions and visions collected during the workshops showed a pervasive common theme, that of person-centred support. In the visions of the workshop participants, person-centred care leads to people with intellectual disabilities overall receiving better health care, having a better health status, and better access to health promoting activities such as regular exercise. One of the provocative propositions stated that in this way people with intellectual disabilities could become role models for their care givers. In this vision of person-centred care, Approach, Know-how, and Visibility each play a role. To reach the person-centred care vision, know-how is a prerequisite. This includes knowledge, expertise and experiences with regard to: particular health needs, normal or abnormal behaviour, preferable actions, prevention of over- or under treatment, and the needs, hopes and opportunities of the person with intellectual disabilities involved. Relatives, care givers, GPs and other involved professionals all have their own knowledge and experiences to contribute.
To increase the visibility needed for the realization of person-centred care, participants identified the need for health assessments that create a complete picture of the person with intellectual disabilities, including the network of care. This could all be brought together in a personal care plan, including a specification of expected competences, roles and responsibilities of each individual involved. Care plans should be developed with the active participation of people with intellectual disabilities and use their own words. Next to this, internships in the care for people with intellectual disabilities are a part of the curriculum in medical education. It follows that in this person-centred approach people with intellectual disabilities are empowered to be able to achieve the goals or aspirations in these plans in which access to regular health care and medical services should be a universal priority. The approach in health care should be respectful, welcoming and safe for people with intellectual disabilities and quality of life considerations are key in the decision-making process. This vision by workshop B3 provides a powerful illustration reflecting visions and propositions from the workshops: Vision: ‘In 5 years time people with intellectual disabilities should get BETTER healthcare than the general population. This consists of:
• • • • • •
Individually tailored care, no two individuals should receive the same care, even if the conditions they have are the same. People with intellectual disabilities and their ‘circles of support’ are the ones with the most knowledge of their healthcare. Everybody involved in the care for people with intellectual disabilities listens and is accountable to each other. The care-plans should include the persons’ own words/descriptions. Often ‘less is more’. Less medication and diagnostic interventions, more non-invasive and nonpharmacological interventions. Unless it is the right treatment, for the right person, at the right time. Treatment should be determined by both evidence based practice AND practice based evidence (B3).
Discussion The aim of the IASSIDD health SIRG conference was to move ‘from evidence to action’. Analysis of the © 2014 John Wiley & Sons Ltd, 28, 3–11
Journal of Applied Research in Intellectual Disabilities
workshop reports provided three main themes: Approach, know-how and visibility, these were related to each other through the vision of personalized support as collected from the workshops. From each of these themes, new ideas to move from evidence to action can be derived. These are presented below, following the three focus points of the workshops:
9
about the health needs of people with intellectual disabilities. People with intellectual disabilities themselves could contribute to the education of health professionals if they are involved in the education programs as ‘experts by experience’. Professionals working with people with Intellectual disabilities can act as advocates by sharing their knowledge and expertise with professionals in regular care.
Policy/practice The workshops provided ideas on how to approach health inequities in practice. All involved stakeholders (people with intellectual disabilities, their families and care givers, health professional, etc.) can contribute to improving the health of people with intellectual disabilities. They should be empowered and facilitated to do so, for people with intellectual disabilities this means their environment should be accessible and inclusive in nature. To facilitate involvement strong visions on health in policy plans at every level, including at care giving service providers are needed. This is in line with the concept of ‘health in all policies’ which is widely used in public health and health promotion (World Health Organisation 1986; de Leeuw & Clavier 2011) and the 2010 UN convention on the right of persons with disabilities (Kayess & French 2008; United Nations 2010).
Research With regard to research, workshops listed many topics where more evidence is needed. Participants also discussed the need for international collaboration by means of sharing evidence and linking data sources. Also, there was a strong call for more inclusive research in which people with intellectual disabilities actively participate in the research process. The sharing of experiences with inclusive research is facilitated by IASSIDD through the inclusive track on the 2014 European conference.
Education To increase the knowledge about the health inequities experienced by people with intellectual disabilities and their specific health needs, education programs should include people with Intellectual disabilities in their curriculum. Education programs should not only focus on sharing knowledge. Education programs should not only focus on sharing knowledge. They can also advocate responsibility and urgency to know more © 2014 John Wiley & Sons Ltd, 28, 3–11
Strengths and weaknesses Overall, workshop leaders and assistants experienced appreciative inquiry as an enjoyable way to work, though in one case not a contribution to the process per se. Some workshop leaders felt that explaining the approach was challenging. Workshop participants valued the acknowledgment of what currently exists and found the process was a creative way to share ideas and connect to each other’s experiences. The short timeframe of the workshops demanded a quite strict moderation by the workshop leaders. The appreciative inquiry approach was experienced as effective, especially for the formulation of provocative propositions, where it encouraged clarity and focusses on core issues and avoided the usual systemic cautiousness and inertia. Overall the appreciative approach provided a creative and positive framework for this conference and could be consider in future meetings. However, we recommend more time for workshop leaders and assistants to become familiar with the method as well as more time in the workshops themselves.
From evidence to action? How one moves from evidence to action will depend on the context of the health and social care systems within a country and the extent to which people with intellectual disabilities are generally regarded as having the same rights as the non-disabled population. Improving access to health care in countries where there have been clear strategies and policies for deinstitutionalization, social inclusion and support will be achieved more readily than in those countries that continue to segregate people with intellectual disabilities and have a high reliance on institutional care. On the other hand, there is evidence that people living in community settings engage more in health risk behaviour such as unhealthy diet, smoking, alcohol and sedentary lifestyle (Kozma et al. 2009; Walsh et al. 2010) indicating that policies towards community living may
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not currently support optimal health care and ask for action as well. The conference workshops did not result in an ‘action plan’ The product of this conference is a basis that needs further adaptation to the various local settings. Further work along the lines of appreciative inquiry, with Dreams and Destiny will result in practical applicable action plans tailored to local expertise and needs. Further (international) research can be helpful in monitoring the outcomes both in process and products and in cost-effectiveness. It can also ensure that we build on each other’s international experience so as to prevent reinventing the wheel.
Conclusion The four main themes derived from the workshop reports provide a foundation for completing the Appreciative Inquiry cycle. Discovery revealed the importance of a collaborative person-centred approach that relies on know-how. It also highlighted the need to ensure visibility of issues and expertise. The various propositions and visions outline the participants’ dream for the future. After Discovery and Dream come Design and Destiny. The challenge to the participants and others is to now use these to design or redesign programs, services and systems to create the desired destiny.
Acknowledgments Authors would like to acknowledge the input of: Workshop leaders: Helene Ouellette-Kunz, Petri Embregts, Gyles Glover, Noortje Kuijken, Heleen Evenhuis, Bill Sullivan, Roger Banks, Nick Lennox, Jane Tracy, Patricia Noonan Walsh. Workshop assistants: Marloes Heutmekers, Tessa Frankena, Mathilde Mastebroek, Elsbeth Leer, Luc Bastiaanse, Channa de Winter, Esther Bakker- van Gijssel, Loes Soors ‘d Ancona, Niels Huisman, Mendy Kuipers, Neliza Lubbers, Stephan Hendrikx, Maaike Muskens. All participants in the 2013 IASSIDD health SIRG conference, Nijmegen. Hilde Tobi and Christine Linehan for their feedback on an earlier draft of this paper.
Correspondence Any correspondence should be directed to Jenneken Naaldenberg, Department of Primary and Community Care – Intellectual Disabilities and Health, Radboud
University Medical Center, Route 68, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands (e-mail: jenneken. [email protected]).
References Cooperrider D. L. (2005) Appreciative Inquiry: A Positive Revolution in Change. Berrett-Koehler Publishers Inc., San Francisco, CA. Cooperrider D. L., Whitney D. & Stavros J. M. (2005) Appreciative Inquiry Handbook. Crown Custom Publishing Inc., Brunswick, OH. Emerson E. (2011) Health status and health risks of the “hidden majority” of adults with intellectual disability. Intellectual and Developmental Disabilities 49, 155–165. Emerson E., Baines S., Allerton L. & Welch V. (2011) Health Inequalities and People With Learning Disabilities in the UK. I. H. a. L. L. D. D. Observatory, Public Health England, London. Friese S. (2011) Qualitative Data Analysis With ATLAS. Ti Sage Publications Ltd, London. Kayess R. & French P. (2008) Out of darkness into light? Introducing the convention on the rights of persons with disabilities. Human Rights Law Review. doi: 10.1093/hrlr/ ngm044. Kozma A., Mansell J., Beadle-Brown J. & Emerson E. (2009) Outcomes in different residential settings for people with intellectual disability: a systematic review. American Journal on Intellectual and Developmental Disabilities 114, 193–222. Krahn G. L., Hammond L. & Turner A. (2006) A cascade of disparities: health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 12, 70–82. de Leeuw E. & Clavier C. (2011) Healthy public in all policies. Health Promotion International 26(Suppl. 2), 237–244. Lennox N., Bain C., Rey-Conde T., Taylor M., Boyle F. M., Purdie D. M. & Ware R. S. (2010) Cluster randomizedcontrolled trial of interventions to improve health for adults with intellectual disability who live in private dwellings. Journal of Applied Research in Intellectual Disabilities 23, 303–311. Melander-Wikman A., Jansson M. & Ghaye T. (2006) Reflections on an appreciative approach to empowering elderly people, in home healthcare. Reflective Practice 7, 423– 444. Michael S. (2005) The promise of appreciative inquiry as an interview tool for field research. Development in Practice 15, 222–230. Naaldenberg J., Vaandrager L., Koelen M. A. & Leeuwis C. (2011) Ageing populations everyday life perspectives on healthy aging: new insights for policy and strategies at the local level. Applied gerontology 31, 711–733. Naaldenberg J., Kuijken N., van Dooren K. & Van Schrojenstein Lantman-de Valk H. (2013) Topics, methods and challenges in health promotion for people with intellectual disabilities: a structured review of literature. Research in Developmental Disabilities 34, 4534–4545. © 2014 John Wiley & Sons Ltd, 28, 3–11
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Ouellette-Kuntz H., Garcin N., Lewis M. E., Minnes P., Martin C. & Holden J. J. (2005) Addressing health disparities through promoting equity for individuals with intellectual disability. Canadian Journal of Public Health 96(Suppl. 2), S8–S22. Reed J., Richardson E., Marais S. & Moyle W. (2008) Older people maintaining well-being: an International Appreciative Inquiry study. International Journal of Older People Nursing 3, 68–75. devan Schrojenstein Lantman- Valk H. M. J. & Walsh P. N. (2008) Managing health problems in people with intellectual disabilities. British Medical Journal 337, doi: 10.1136/bmj. a2507. Taggart L. & Cousins W. (2013) Health Promotion for People With Intellectual and Developmental Disabilities. McGraw Hill, Berkshire, UK.
© 2014 John Wiley & Sons Ltd, 28, 3–11
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United Nations. (2010) Convention on the Rights of Persons with Disabilities, http://www.un.org/disabilities/default.asp? id=259 (accessed on 08 October 2012). Van Schrojenstein Lantman-De Valk H. M. J. (2005) Health in people with intellectual disabilities: current knowledge and gaps in knowledge. Journal of Applied Research in Intellectual Disabilities 18, 325–333. Walsh P. N., Emerson E., Lobb C., Hatton C., Bradley V., Schalock R. L. & Moseley C. (2010) Supported accommodation for people with intellectual disabilities and quality of life: an overview. Journal of Policy and Practice in Intellectual Disabilities 7, 137–142. World Health Organisation (1986) Ottawa Charter of Health Promotion. WHO, Copenhagen.
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Journal of Applied Research in Intellectual Disabilities 2015, 28, 3–11
Health Inequity in People with Intellectual Disabilities: From Evidence to Action Applying an Appreciative Inquiry Approach Jenneken Naaldenberg*, Roger Banks†, Nick Lennox‡, Helene Ouellette-Kunz§, Marijke Meijer¶ and Henny van Schrojenstein Lantman-de Valk* *Department of Primary and Community Care – Intellectual Disabilities and Health, Radboud University Medical Center, HB Nijmegen, The Netherlands; †University of Bangor, Wales, UK; ‡Queensland Centre for Intellectual and Developmental Disability, School of Medicine, The University of Queensland, Brisbane, Qld, Australia; §Department of Public Health Sciences, Queen’s University, Kingston, ON, Canada; ¶Ipse de Bruggen, Care for people with intellectual and multple disabilities, Zwammerdam, The Netherlands
Accepted for publication 19 September 2014
Background The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops. Materials and methods The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach. Results A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how
Introduction People with intellectual disabilities have more health problems and die at an earlier age than people in the general population. The amount of evidence related to these disparities is large and still increasing (OuelletteKuntz et al. 2005; Van Schrojenstein Lantman-De Valk 2005; Krahn et al. 2006; van Schrojenstein Lantman- Valk & Walsh 2008; Lennox et al. 2010; Taggart & Cousins 2013). Emerson et al. (2011) summarize the main contributors to health inequalities among people with intellectual disabilities into five comprehensive factors, being: (i) social determinants such as poverty, poor housing, social disconnectedness and unemployment, (ii) health problems related to intellectual disabilities, © 2014 John Wiley & Sons Ltd
and visibility and a pervasive theme, that of personcentered support. Conclusion Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required. Keywords: appreciative intellectual disabilities
inquiry,
health
inequity,
(iii) communicative problems and illiteracy, (iv) unfavourable behaviours relating to diet and exercise, (v) poor access to mainstream health care (Emerson 2011; Emerson et al. 2011). However, available evidence does not readily translate into practice (Naaldenberg et al. 2013). Therefore, the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) Health Special Interest Research Group organized a conference entitled: ‘Health inequity: from evidence to action’. This conference was held on November 7 and 8 2013 in Nijmegen, the Netherlands. The first day of this conference offered evidence through key note presentations and poster sessions on empirical studies. The second day aimed to move 10.1111/jar.12130
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towards action by means of workshops in which participants discussed several issues related to the health of people with intellectual disabilities. This study reports on the outcomes of these workshops.
Appreciative inquiry To guide the workshops in moving ‘from evidence to action’, an appreciative inquiry approach was used. Appreciative inquiry was developed within the context of organizational change management (Cooperrider 2005). Since its introduction in organizational change management, it has frequently been used in (health) research and as an interview and field research tool (Michael 2005; Melander-Wikman et al. 2006; Reed et al. 2008; Naaldenberg et al. 2011). Appreciative inquiry is an assets-based approach that aims to focus on the best of ‘what is’ and to envision desired situations. Table 1 compares the appreciative inquiry approach to the more commonly used problem solving approach. As the aim of the conference was to move towards the next step, from evidence to action by building on existing evidence to develop solutions, appreciative inquiry seemed an appropriate approach. Moreover, it could be helpful both in preventing the workshops from (re-) defining problems that are already known to exist and to allow participants that are not necessarily involved in the definition of the problem to contribute their knowledge and experiences in discussing solutions. Appreciative inquiry enables collective learning processes by sharing positive experiences and ideas. The original organization change method follows the socalled 4-D cycle: Discovery, Dream, Design and Destiny and takes multiple sessions to complete (Cooperrider et al. 2005). Due to constraints of time, the workshops were limited to covering the first two steps, resulting in the sharing of positive experiences and creating a shared vision.
Table 1 Appreciative inquiry versus problem solving Problem solving Identification of problem Analysis of causes Analysis of possible solutions Action planning
Appreciative inquiry Appreciating, valuing the best of what is Envisioning, what might be Dialoguing, what should be Innovating, what will be
Methods Participants A total of 134 conference participants attended the workshops (excluding workshop leaders and assistants). Of these participants, 116 were from the Netherlands, with others representing nine other countries (six from the UK, three from Belgium, two from Germany and two from Australia, one from Finland, USA, Serbia, Canada and Sweden each). Participants had different professional backgrounds, for example: (specialized) physicians, nurses, managers, researchers, teachers and specialized therapists. Each workshop consisted of 12–20 participants, a workshop leader and a workshop assistant. The workshop leaders and assistants were briefed about the content and methods of the workshop through written information at a preparation meeting the day before the conference started. The self-advocates’ workshop consisted of five selfadvocates with two supporters, a workshop leader and two workshop assistants. This workshop followed an adapted protocol in which self-advocates shared their ideas and experiences concerning healthy living and tips they knew about how to live a healthy life. Written easy to read information about the content of the conference, the workshop and informed consent forms were sent to self-advocates before the workshop took place.
Workshops process and content Each workshop consisted of two sessions of 90 min each. Both sessions were followed by a plenary feedback session in which each workshop leader briefly informed all conference participants about the discussions and outcomes of their workshop. Participants were in the same workshop for both sessions. Workshops focused on three main topics established in advance by the conference program committee: (i) health promotion and prevention, (ii) treatment and management of health problems and (iii) healthcare delivery and models of healthcare organization. To make sure all aspects of a topic would receive attention, each workshop focused on one of the following: (i) research, (ii) education or (iii) policy/practice. Table 2 provides an overview of the workshops and their themes and foci.
Session I This session started with a short introduction by all participants and an introduction to appreciative inquiry © 2014 John Wiley & Sons Ltd, 28, 3–11
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Table 2 Workshop structure
Health promotion and disease prevention Treatment and management of health problems Healthcare delivery and models of healthcare organization
with a short exercise by the workshop leader. Participants then exchanged stories in pairs or small groups, first telling each other about their work with people with intellectual disabilities and their most positive experiences. Next, participants shared three wishes they had with regard to what they would like to improve concerning the health inequities experienced by people with intellectual disabilities. These stories and wishes were shared within the workshop. Finally, from the shared stories, the workshop leader and assistant prepared a brief written report and a 3-slide presentation for the plenary feedback session.
Session II Key themes from the first session were selected by workshop participants and workshop leaders. Next, participants worked in small groups to formulate ‘provocative propositions’ around these key themes. Provocative propositions are used in appreciative inquiry as stretching statements to reflect, in the present tense, how you would talk about your work when you would be working to your highest aspirations (Cooperrider et al. 2005). Thus, the propositions reflect what actions and results would look like under the best circumstances participants could imagine. These propositions were shared and discussed within the workshop and prioritized, resulting in a shared vision which was added to the report and presented in the plenary feedback session.
Analysis of workshop reports Workshop assistants, in collaboration with workshop leaders, prepared a brief (2–4 page) report on the workshops during or shortly after the conference. The reports consisted of: the outcomes of both workshop sessions (stories, wishes, propositions, visions, mentioned resources), a general impression of the workshop and a short reflection on the use of appreciative inquiry. These workshop reports were labelled as per Table 2 and imported in Atlas ti software (Scientific Software © 2014 John Wiley & Sons Ltd, 28, 3–11
Research
Education
A1 B1 C1
A2 B2 C2
Policy and practice A3 B3 C3
Self-advocates D1
Development) which supports coding, organizing and analysis of qualitative data (Friese 2011). Reports were coded bottom up by assigning a code describing the content of each segment of text. Next, these descriptive codes were grouped into categories of similar codes. This resulted in a set of overarching themes with related categories and subcategories of coded text fragments. In this way, the pre-defined topics and foci of the workshops facilitated the discussions while the bottomup analysis allowed the highlighting of general themes across the topics and foci. Reports were analysed by the first author (JN). To increase reliability and validity, the outcomes were discussed frequently between JN and HL and were sent to all workshop leaders and assistants for member checking.
Outcomes The analysis of workshop reports resulted in three main themes, being: approach, ‘know-how’ and visibility. These themes related to each other through a common and pervasive theme from the collected propositions and visions, that of person-centred support. Each theme and its sub themes are described below. Quotations presented were translated from Dutch where necessary and refer to experiences, wishes, propositions or visions as formulated in the workshops.
Approach Engaging individuals who play a significant role in the lives of people with intellectual disabilities was considered as an important element to improve the way health issues are recognized and addressed. Participants mentioned positive experiences working within community teams, involving care givers in healthy living programs including educating care givers about healthy eating. To enable the engagement of this broader environment, several prerequisites were identified such as: stakeholder empowerment and equal distribution of power, thereby enabling those involved to contribute as much as they want; supported communication among all involved including people with intellectual disabilities as
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experts from experience; and the need for enthusiasts that advocate, stimulate and facilitate involvement. This could be further facilitated by a strong vision on health throughout care organizations involved: Vision: Embed healthy lifestyles in regular care plans, it should be normal for people with intellectual disabilities to walk or bike to their day activities (B1). The formulated wishes in the workshops reflected the desire to involve care givers (advocacy, key role in healthy living) and family (empower family members, more active involvement), but also managers, policymakers (need for a strong vision regarding health) and general practice, preferably in the form of a collaborating team. The physical environment was represented especially in terms of the wish to make mainstream sports facilities accessible and inclusive of people with intellectual disabilities: Vision/wish: Government gives tax breaks for fitness club programs where users bring people with intellectual disabilities (A3). The need to promote greater well-being through inclusion of people with intellectual disabilities in society was also discussed. This begins with integration in mainstream primary schools and follows through to creating healthy environments and inclusive communities, and designing health care to be as accessible to people with intellectual disabilities as the general population. Research should also strive to be inclusive and actively identify groups that miss out on the care and support they need. The group of self-advocates discussed several examples in which the involvement of people in their environment contributed to healthier options for them. The availability of choice in meals and meal plans, having someone who wants to accompany you to the swimming pool or other sports activities were mentioned as positive examples. Having someone that can join you in sports activities makes it more fun and helps to build confidence such that people are able to help peers that struggle with a healthy lifestyle as well. Routines such as walking to the bus stop or riding a bike to the supermarket were mentioned as easy ways to get exercise. Experience: when we were fed up with our meal choices we sat around the table with our whole
group and discussed how we would prepare home cooked meals from now on. Also, at my workplace we get a weekly fruit basket now. Everyone can voice their preference of fruit and now we have fresh fruit daily (D1).
Know-how Discussions frequently referred to the importance of knowledge from experience, tacit knowledge and ‘knowhow’. As care givers play an important role in the lives of people with intellectual disabilities, many positive examples related to their know-how. Discussed experiences to create and share know-how included: the formation of special interest groups on chronic conditions and healthy lifestyles, teaching ‘on the job’, using teaching techniques for professional education that include the perspectives of people with intellectual disabilities or visual impairments and teaching care givers ways to cope with behavioural challenges in order to reduce the reliance on the prescription of psychotropic drugs to people with intellectual disabilities. It is not only care givers but also other stakeholders that require know-how about the special needs of people with intellectual disabilities. This is illustrated by the provocative proposition from workshop C3: Proposition: To play their role in enhancing health and wellbeing of someone with a disability, all stakeholders need a level of education about health and health issues relevant to their role and responsibility (C3). For stakeholders in regular (health-) care not specialized in intellectual disabilities, available intellectual disability related know-how should be made available. Helpful examples mentioned in the workshops were as follows: brief handouts or more detailed referral letters that include pointers on communication, on routines and on how to support people with intellectual disabilities in special situations (e.g. hospital admissions or air travel). Self-advocates also voiced having needs for knowhow. They said it can be very hard to know exactly what is healthy for you and under what circumstances. As an example one self-advocates said that he knew that kiwi fruit are healthy but some people are allergic to kiwi fruit. In that case, these are not a healthy option. There was a strongly expressed desire to ensure that the needs of people with intellectual disabilities are © 2014 John Wiley & Sons Ltd, 28, 3–11
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highlighted in mainstream health professionals education (nurses, general practice, specialists, etc.) in particular by including people with intellectual disabilities as ‘teachers from experience’, consultants and as healthcare quality checkers supported by (medical) students. Education for people with intellectual disabilities and their families (including support groups) was also called for. A safe and comfortable setting was mentioned as a prerequisite to facilitate learning (to care givers, family, people with intellectual disabilities). Wishes were expressed that learning originates from a felt responsibility and urgency to know more about the health needs of people with intellectual disabilities, this is illustrated by the following vision: Vision: In 5 years – all disability workers participate in identifying and creating the knowledge and skills they need to provide care to the people they support, and fulfill the responsibilities they have Their intrinsic motivation is harnessed when they feel valued, supported in non-judgmental way, and when the focus is on responsibility not knowledge. To account for people’s different learning styles, education is offered in a variety of ways – including creative, energizing ways of sharing information (C2).
Visibility The third theme related to increasing visibility of: (i) people with intellectual disabilities and their particular needs for support in health care and (ii) expertise and experience of professionals. Wishes for collecting evidence covered topics such as: evidence on long term impact of interventions, comparing evidence between countries, evidence on discontinuation of psychotropic medication, evidence with regard to palliative care, evidence on supporting people with autism in hospital settings, data on specific syndromes, tools for better health care and awareness of emerging health issues. Methodologically sound and relevant evidence was thought to be of great importance in influencing policy decisions. Linking scientific evidence with everyday practice and linking data sources internationally to strengthen evidence were mentioned as examples of making evidence ‘work’ in practice to create actions. Proposition: The highest quality health data are collected in a uniform way and universally © 2014 John Wiley & Sons Ltd, 28, 3–11
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accessible. Evidence based research drives practice and policies (C1). However, collecting the much needed evidence can be difficult. Participants mentioned the time it takes for health evidence (interventions) to change practice; often, interventions do not readily translate to practice. Multiple evaluation moments over time and in real-life settings are required to collect relevant evidence. Evidence-based practice and practice-based evidence are both required to improve health care. Successful experiences with regard to useful and usable evidence often referred to small changes and everyday situations such as: walking to work instead of taking the bus, making healthy choices more available and encouraging people to opt for these, and e-health on simple activities such as brushing teeth. The input of people with intellectual disabilities in the collection of evidence was mentioned both as a positive experience as well as a future aspiration. Though involving people with intellectual disabilities in research can be challenging, there is considerable experience and methodologies to draw on. One of the participants shared the example of using adapted surveys on tablet computers that enabled people with intellectual disabilities to participate in the evaluation of their health care. Sharing knowledge about people with intellectual disabilities and their needs was discussed as a positive experience and effective in advocating for people with intellectual disabilities and enhance the visibility of their needs. Examples included being available as coach or consultant (experienced with intellectual disabilities) to stakeholders working outside of the intellectual disabilities sector such as general practitioners, hospital nurses, therapists and other health professionals. Experience: I learn a lot by sharing knowledge and experiences with colleagues such as physicians, therapists and behavioral scientists (B2). There was a desire for increased collaboration and consultation between professional trained and experienced in working with people with intellectual disabilities and general health professionals. The Dutch intellectual disabilities specialized physicians participating in the workshops in particular felt that this could be greatly improved in their health system. Proposition: The intellectual disabilities physician should be better known within the healthcare system. This could be done by raising awareness on
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the intellectual disabilities physician in education for healthcare professionals. Awareness could be raised by including people with intellectual disabilities in the education programs (A2). Propositions, wishes and visions relating to the theme ‘visibility’ included a need for continuity in care and a care coordinator who has an affinity with people with intellectual disabilities. This would ensure the voice of person with intellectual disabilities would be heard, and their health needs recognized. Services should collaborate and work together for the benefit of people with intellectual disabilities. Systems for evaluation and accountability (to people with intellectual disabilities and other services) should be in place. The vision formulated in workshop C2 brought together many of these issues: Vision: A ‘Plan- Do- Act- Check’ cycle can be applied to continuing improvement, and share this information through the literature. This builds an evidence base to inform practice. The data informs education and professional development of disability support staff and health professionals. Over time, all involved learn more about the goals people have and ways to support them to live a rich and fulfilling life (C2).
To action: visions of person-centred support The propositions and visions collected during the workshops showed a pervasive common theme, that of person-centred support. In the visions of the workshop participants, person-centred care leads to people with intellectual disabilities overall receiving better health care, having a better health status, and better access to health promoting activities such as regular exercise. One of the provocative propositions stated that in this way people with intellectual disabilities could become role models for their care givers. In this vision of person-centred care, Approach, Know-how, and Visibility each play a role. To reach the person-centred care vision, know-how is a prerequisite. This includes knowledge, expertise and experiences with regard to: particular health needs, normal or abnormal behaviour, preferable actions, prevention of over- or under treatment, and the needs, hopes and opportunities of the person with intellectual disabilities involved. Relatives, care givers, GPs and other involved professionals all have their own knowledge and experiences to contribute.
To increase the visibility needed for the realization of person-centred care, participants identified the need for health assessments that create a complete picture of the person with intellectual disabilities, including the network of care. This could all be brought together in a personal care plan, including a specification of expected competences, roles and responsibilities of each individual involved. Care plans should be developed with the active participation of people with intellectual disabilities and use their own words. Next to this, internships in the care for people with intellectual disabilities are a part of the curriculum in medical education. It follows that in this person-centred approach people with intellectual disabilities are empowered to be able to achieve the goals or aspirations in these plans in which access to regular health care and medical services should be a universal priority. The approach in health care should be respectful, welcoming and safe for people with intellectual disabilities and quality of life considerations are key in the decision-making process. This vision by workshop B3 provides a powerful illustration reflecting visions and propositions from the workshops: Vision: ‘In 5 years time people with intellectual disabilities should get BETTER healthcare than the general population. This consists of:
• • • • • •
Individually tailored care, no two individuals should receive the same care, even if the conditions they have are the same. People with intellectual disabilities and their ‘circles of support’ are the ones with the most knowledge of their healthcare. Everybody involved in the care for people with intellectual disabilities listens and is accountable to each other. The care-plans should include the persons’ own words/descriptions. Often ‘less is more’. Less medication and diagnostic interventions, more non-invasive and nonpharmacological interventions. Unless it is the right treatment, for the right person, at the right time. Treatment should be determined by both evidence based practice AND practice based evidence (B3).
Discussion The aim of the IASSIDD health SIRG conference was to move ‘from evidence to action’. Analysis of the © 2014 John Wiley & Sons Ltd, 28, 3–11
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workshop reports provided three main themes: Approach, know-how and visibility, these were related to each other through the vision of personalized support as collected from the workshops. From each of these themes, new ideas to move from evidence to action can be derived. These are presented below, following the three focus points of the workshops:
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about the health needs of people with intellectual disabilities. People with intellectual disabilities themselves could contribute to the education of health professionals if they are involved in the education programs as ‘experts by experience’. Professionals working with people with Intellectual disabilities can act as advocates by sharing their knowledge and expertise with professionals in regular care.
Policy/practice The workshops provided ideas on how to approach health inequities in practice. All involved stakeholders (people with intellectual disabilities, their families and care givers, health professional, etc.) can contribute to improving the health of people with intellectual disabilities. They should be empowered and facilitated to do so, for people with intellectual disabilities this means their environment should be accessible and inclusive in nature. To facilitate involvement strong visions on health in policy plans at every level, including at care giving service providers are needed. This is in line with the concept of ‘health in all policies’ which is widely used in public health and health promotion (World Health Organisation 1986; de Leeuw & Clavier 2011) and the 2010 UN convention on the right of persons with disabilities (Kayess & French 2008; United Nations 2010).
Research With regard to research, workshops listed many topics where more evidence is needed. Participants also discussed the need for international collaboration by means of sharing evidence and linking data sources. Also, there was a strong call for more inclusive research in which people with intellectual disabilities actively participate in the research process. The sharing of experiences with inclusive research is facilitated by IASSIDD through the inclusive track on the 2014 European conference.
Education To increase the knowledge about the health inequities experienced by people with intellectual disabilities and their specific health needs, education programs should include people with Intellectual disabilities in their curriculum. Education programs should not only focus on sharing knowledge. Education programs should not only focus on sharing knowledge. They can also advocate responsibility and urgency to know more © 2014 John Wiley & Sons Ltd, 28, 3–11
Strengths and weaknesses Overall, workshop leaders and assistants experienced appreciative inquiry as an enjoyable way to work, though in one case not a contribution to the process per se. Some workshop leaders felt that explaining the approach was challenging. Workshop participants valued the acknowledgment of what currently exists and found the process was a creative way to share ideas and connect to each other’s experiences. The short timeframe of the workshops demanded a quite strict moderation by the workshop leaders. The appreciative inquiry approach was experienced as effective, especially for the formulation of provocative propositions, where it encouraged clarity and focusses on core issues and avoided the usual systemic cautiousness and inertia. Overall the appreciative approach provided a creative and positive framework for this conference and could be consider in future meetings. However, we recommend more time for workshop leaders and assistants to become familiar with the method as well as more time in the workshops themselves.
From evidence to action? How one moves from evidence to action will depend on the context of the health and social care systems within a country and the extent to which people with intellectual disabilities are generally regarded as having the same rights as the non-disabled population. Improving access to health care in countries where there have been clear strategies and policies for deinstitutionalization, social inclusion and support will be achieved more readily than in those countries that continue to segregate people with intellectual disabilities and have a high reliance on institutional care. On the other hand, there is evidence that people living in community settings engage more in health risk behaviour such as unhealthy diet, smoking, alcohol and sedentary lifestyle (Kozma et al. 2009; Walsh et al. 2010) indicating that policies towards community living may
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not currently support optimal health care and ask for action as well. The conference workshops did not result in an ‘action plan’ The product of this conference is a basis that needs further adaptation to the various local settings. Further work along the lines of appreciative inquiry, with Dreams and Destiny will result in practical applicable action plans tailored to local expertise and needs. Further (international) research can be helpful in monitoring the outcomes both in process and products and in cost-effectiveness. It can also ensure that we build on each other’s international experience so as to prevent reinventing the wheel.
Conclusion The four main themes derived from the workshop reports provide a foundation for completing the Appreciative Inquiry cycle. Discovery revealed the importance of a collaborative person-centred approach that relies on know-how. It also highlighted the need to ensure visibility of issues and expertise. The various propositions and visions outline the participants’ dream for the future. After Discovery and Dream come Design and Destiny. The challenge to the participants and others is to now use these to design or redesign programs, services and systems to create the desired destiny.
Acknowledgments Authors would like to acknowledge the input of: Workshop leaders: Helene Ouellette-Kunz, Petri Embregts, Gyles Glover, Noortje Kuijken, Heleen Evenhuis, Bill Sullivan, Roger Banks, Nick Lennox, Jane Tracy, Patricia Noonan Walsh. Workshop assistants: Marloes Heutmekers, Tessa Frankena, Mathilde Mastebroek, Elsbeth Leer, Luc Bastiaanse, Channa de Winter, Esther Bakker- van Gijssel, Loes Soors ‘d Ancona, Niels Huisman, Mendy Kuipers, Neliza Lubbers, Stephan Hendrikx, Maaike Muskens. All participants in the 2013 IASSIDD health SIRG conference, Nijmegen. Hilde Tobi and Christine Linehan for their feedback on an earlier draft of this paper.
Correspondence Any correspondence should be directed to Jenneken Naaldenberg, Department of Primary and Community Care – Intellectual Disabilities and Health, Radboud
University Medical Center, Route 68, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands (e-mail: jenneken. [email protected]).
References Cooperrider D. L. (2005) Appreciative Inquiry: A Positive Revolution in Change. Berrett-Koehler Publishers Inc., San Francisco, CA. Cooperrider D. L., Whitney D. & Stavros J. M. (2005) Appreciative Inquiry Handbook. Crown Custom Publishing Inc., Brunswick, OH. Emerson E. (2011) Health status and health risks of the “hidden majority” of adults with intellectual disability. Intellectual and Developmental Disabilities 49, 155–165. Emerson E., Baines S., Allerton L. & Welch V. (2011) Health Inequalities and People With Learning Disabilities in the UK. I. H. a. L. L. D. D. Observatory, Public Health England, London. Friese S. (2011) Qualitative Data Analysis With ATLAS. Ti Sage Publications Ltd, London. Kayess R. & French P. (2008) Out of darkness into light? Introducing the convention on the rights of persons with disabilities. Human Rights Law Review. doi: 10.1093/hrlr/ ngm044. Kozma A., Mansell J., Beadle-Brown J. & Emerson E. (2009) Outcomes in different residential settings for people with intellectual disability: a systematic review. American Journal on Intellectual and Developmental Disabilities 114, 193–222. Krahn G. L., Hammond L. & Turner A. (2006) A cascade of disparities: health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 12, 70–82. de Leeuw E. & Clavier C. (2011) Healthy public in all policies. Health Promotion International 26(Suppl. 2), 237–244. Lennox N., Bain C., Rey-Conde T., Taylor M., Boyle F. M., Purdie D. M. & Ware R. S. (2010) Cluster randomizedcontrolled trial of interventions to improve health for adults with intellectual disability who live in private dwellings. Journal of Applied Research in Intellectual Disabilities 23, 303–311. Melander-Wikman A., Jansson M. & Ghaye T. (2006) Reflections on an appreciative approach to empowering elderly people, in home healthcare. Reflective Practice 7, 423– 444. Michael S. (2005) The promise of appreciative inquiry as an interview tool for field research. Development in Practice 15, 222–230. Naaldenberg J., Vaandrager L., Koelen M. A. & Leeuwis C. (2011) Ageing populations everyday life perspectives on healthy aging: new insights for policy and strategies at the local level. Applied gerontology 31, 711–733. Naaldenberg J., Kuijken N., van Dooren K. & Van Schrojenstein Lantman-de Valk H. (2013) Topics, methods and challenges in health promotion for people with intellectual disabilities: a structured review of literature. Research in Developmental Disabilities 34, 4534–4545. © 2014 John Wiley & Sons Ltd, 28, 3–11
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Ouellette-Kuntz H., Garcin N., Lewis M. E., Minnes P., Martin C. & Holden J. J. (2005) Addressing health disparities through promoting equity for individuals with intellectual disability. Canadian Journal of Public Health 96(Suppl. 2), S8–S22. Reed J., Richardson E., Marais S. & Moyle W. (2008) Older people maintaining well-being: an International Appreciative Inquiry study. International Journal of Older People Nursing 3, 68–75. devan Schrojenstein Lantman- Valk H. M. J. & Walsh P. N. (2008) Managing health problems in people with intellectual disabilities. British Medical Journal 337, doi: 10.1136/bmj. a2507. Taggart L. & Cousins W. (2013) Health Promotion for People With Intellectual and Developmental Disabilities. McGraw Hill, Berkshire, UK.
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United Nations. (2010) Convention on the Rights of Persons with Disabilities, http://www.un.org/disabilities/default.asp? id=259 (accessed on 08 October 2012). Van Schrojenstein Lantman-De Valk H. M. J. (2005) Health in people with intellectual disabilities: current knowledge and gaps in knowledge. Journal of Applied Research in Intellectual Disabilities 18, 325–333. Walsh P. N., Emerson E., Lobb C., Hatton C., Bradley V., Schalock R. L. & Moseley C. (2010) Supported accommodation for people with intellectual disabilities and quality of life: an overview. Journal of Policy and Practice in Intellectual Disabilities 7, 137–142. World Health Organisation (1986) Ottawa Charter of Health Promotion. WHO, Copenhagen.
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