public health perspectives on disability thilo kroll social dimensions of health institute of the...

Public health perspectives on disability Thilo Kroll Social Dimensions of Health Institute of the Universities of Dundee and St Andrews www.sdhi.ac.uk

Injury Illness Injury Illness Disability Injury Illness Injury Illness Traditional Public Health Approach: Primary prevention model Public Health Perspective on Disability: Prevention of secondary conditions Medical / functionalistic Biopsychosocial / environmental / participation

Disability and chronic illness are not the same!!!!!

Some basic distinctions Disability may be experienced without the presence (congenital, accident) or diagnosis of chronic illness Chronic illness may not necessarily be disabling if (self-)managed well (e.g. diabetes, asthma) Disability does not mean poor health poor health may however result due to a thinner margin of health (DeJong et al., 2003) or due to barriers in accessing needed health care services Illness is a medical model concept that locates the problem in the individual, disability is a social or relational concept that locates problems at the intersection of individual and environment An event, like a stroke may be the trigger of a disabling situation, while the medical event is medically managed; life with the sequelae of this event will have to be managed within the family and societal context (it is not a question of managing a chronic disease but of managing life) A chronic illness may require regular medical monitoring and treatment, a person with a disability may not necessarily need more health care than a person without a disability but needs equitable access to services

Ed Roberts Disability Rights Activist and father of the American Disability Rights Movement Polio and used an Iron Lung Fought for the right of a university education Fought for de- institutionalisation Activism led to the first independent living center in Berkeley, CA When his search for housing met resistance in part because of the 800 pound iron lung that he slept in at night, the director of the campus health service offered him a room in an empty wing of the Cowell Hospital. Roberts accepted on the condition that the area where he lived be treated as dormitory space, not a medical facility. His admission broke the ice for other students with severe disabilities who joined him over the next few years at what evolved into the Cowell Residence Program.

Paul Hunt and UPIAS (Union http://hcdg.org/definition.htm What we are interested in, are ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top our physical impairments by the way this society is organised to exclude us. UPIAS Founding Statement http://disability- studies.leeds.ac.uk/files/library/UPI AS-UPIAS.pdf impairment as "lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body" and disability as "the disadvantage or restriction of activity caused by contemporary organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities"

UPIAS (contd) We reject also the whole idea of "experts" and professionals holding forth on how we should accept our disabilities, or giving learned lectures about the "psychology" of disablement. We already know what it feels like to be poor, isolated, segregated, done good to, stared at, and talked down to far better than any able-bodied expert. We as a Union are not interested in descriptions of how awful it is to be disabled. What we are interested in, are ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top our physical impairments by the way this society is organised to exclude us. In our view, it is only the actual impairment which we must accept; the additional and totally unnecessary problems caused by the way we are treated are essentially to be overcome and not accepted. We look forward to the day when the army of "experts" on our social and psychological problems can find more productive work UPIAS Founding Statement http://disability- studies.leeds.ac.uk/files/library/UPI AS-UPIAS.pdf

Vic Finkelstein http://www.theguardian.com/society/2011/dec/2 2/vic-finkelstein Co-founder of UPIAS Civil rights and Anti-Apartheids activist in 1960s, 1970s Wheelchair user, psychologist Rejected compensatory or medical understanding of disability Attention towards structural and social barriers that oppress people with physical impairments and render them disabled Foundation for the social model of disability in the UK

Experience matters Nothing About Us Without Us (Charlton, 1998; Stone, 1997) has often been invoked to demand the inclusion of people with disabilities in policy making and research concerning disability

Americans with Disabilities Act (ADA) Disability Discrimination Act (DDA) 1972 Union of the Physically Impaired Against Segregation (UPIAS) UN Convention on the Rights of Persons with a Disability 1990 2006 1995 2001 WHO International Classification of Functioning, Disability and Health (ICF) 1962 Roots US Independent Living Movement

Definitions Public health Statistical definitions (Disability-adjusted life years or DALYs: Years lost due to premature mortality plus years of life with a disability adjusted for severity

Medical model The medical model understands a disability as a physical or mental impairment of the individual and its personal and social consequences. It regards the limitations faced by people with disabilities as resulting primarily, or solely, from their impairments. A proxy for all that is wrong with traditional attitudes to disability Personal tragedy theory or the individual model (Oliver, 1996) Impairment vs disability Very difficult to find in practice. Very few practitioners subscribe to uni-directional causal models (Kelly & Field, cf Shakespeare, 2006)

Social model The social model understands disability as a relation between an individual and her social environment: the exclusion of people with certain physical and mental characteristics from major domains of social life. Their exclusion is manifested not only in deliberate segregation, but in a built environment and organized social activity that preclude or restrict the participation of people seen or labelled as having disabilities. Minority group model

Social Model Hence disability, according to the social model, is all the things that impose restrictions on disabled people; ranging from individual prejudice to institutional discrimination, from inaccessible buildings to unusable transport systems, from segregated education to excluding work arrangements, and so forth. Further, the consequences of this failure do not simply and randomly fall on individuals but systematically upon disabled people as a group who experience this failure as discrimination institutionalised throughout society - Oliver 1996

Nordic relational model (Tssebro, 2004, cf Shakespeare, 2006) Funksjonshemming = disability (disabling barrier; not disabled as a person descriptor) 1967 Stortingsmelding 88 reversed adaptation Rather than expecting that disabled people one-sidedly shall adapt to society, we also need to adapt the environment to them

Core features of the Nordic relational approach Disability is a mismatch between the individual and the environment (impairment + environment) A disability is also situational (e.g. visual impairment and using a telephone) A disability is relative, a continuum rather than a dichotomy

UN Convention on the Rights of Persons with Disabilities (2006) Article 1 Purpose The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. http://www.un.org/disabilities/convention/con ventionfull.shtml

Convention on the Rights of Persons with Disabilities What is unique about the Convention? Both a development and a human rights instrument A policy instrument which is cross-disability and cross-sectoral Legally binding

Convention on the Rights of Persons with Disabilities A Paradigm Shift The Convention marks a paradigm shift in attitudes and approaches to persons with disabilities. Persons with disabilities are not viewed as "objects" of charity, medical treatment and social protection; rather as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society. The Convention gives universal recognition to the dignity of persons with disabilities.

Convention on the Rights of Persons with Disabilities What is Disability? The Convention does not explicitly define disability Preamble of Convention states: Disability is an evolving concept, and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders full and effective participation in society on an equal basis with others Article 1 of the Convention states: Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

Convention on the Rights of Persons with Disabilities What is Disability? Disability results from an interaction between a non- inclusive society and individuals: Person using a wheelchair might have difficulties gaining employment not because of the wheelchair, but because there are environmental barriers such as inaccessible buses or staircases which impede access Person with extreme near-sightedness who does not have access to corrective lenses may not be able to perform daily tasks. This same person with prescription eyeglasses would be able to perform all tasks without problems.

Convention on the Rights of Persons with Disabilities Rights in the Convention Equality before the law without discrimination (article 5) Right to life, liberty and security of the person (articles 10 & 14) Equal recognition before the law and legal capacity (article 12) Freedom from torture (article 15) Freedom from exploitation, violence and abuse (article 16) Right to respect physical and mental integrity (article 17) Freedom of movement and nationality (article 18) Right to live in the community (article 19) Freedom of expression and opinion (article 21) Respect for privacy (article 22) Respect for home and the family (article 23) Right to education (article 24) Right to health (article 25) Right to work (article 27) Right to adequate standard of living (article 28) Right to participate in political and public life (article 29) Right to participation in cultural life (article 30)

UN CRPD Article 25 - Health Article 25 - Health States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall: Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes; Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;

UN CRPD (continued) Provide these health services as close as possible to peoples own communities, including in rural areas; Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care; Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner; Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Health Condition (disorder/disease) activities Body functions and structures participation environmental factors person factors ICF - International Classification of Functioning, Disability and Health (WHO, 2001)

Diversity of disability

Richard Devylder http://www.youtube.com/watch?v=l96aNpaZ-xc

Challenges in counting disability What is it? - Definition and operationalisation How is it counted/measured? Who collects the data for what purpose? What is the socioeconomic context (resources)? What about social, economic development over time? How is it legislated?

Prevalence estimates WHO World Health Survey 2004 WHO Global Burden of Disease 2004 WHO ICF Framework (2001) Washington Group on Disability Statistics (UN Statistical commission, 2001): 6 questions (e.g. Do you have difficulty seeing, even if wearing glasses?)

Report United Nations Expert Group Meeting on Disability Data and Statistics, Monitoring and Evaluation: The Way Forward- a Disability- Inclusive Agenda Towards 2015 and Beyond UNESCO / UN DESA Paris, France (8-10 July 2014) http://www.un.org/disabilities/documents/eg m2014/EGM_FINAL_08102014.pdf

Setting the scene An estimated 1 billion people (15% of the worlds population) are living with disabilities (WHO World Report on Disability, 2011) In all regions, people with disabilities disproportionately represented among the poorest An estimated 80% of people with disabilities live in developing countries Ageing and growing chronic health conditions will increase the number of people with disabilities

Background: Millenium Development Goals and Disability The Millennium Development Goals (MDGs) represent a concerted effort to address global poverty. Yet there is a striking gap in the current MDGs: persons with disabilities, that is, the estimated 1 billion people worldwide who live with one or more physical, sensory (blindness/deaf- ness), intellectual or mental health impairments, are not mentioned in any of the 8 Goals or the attendant 21 Targets or 60 Indicators, nor in the Millennium Declaration (UN DESA Report 2011). This absence is of particular concern because a growing consensus of disability advocates, experts and researchers find that the most pressing issue faced globally by persons with disabilities is not their specific disability, but rather their lack of equitable access to resources such as education, employment, health care and the social and legal support systems, resulting in persons with disabilities having disproportionately high rates of poverty (UN DESA Report 2011).

Background: UN CRPD UN Convention on the Rights of Persons with Disabilities (UN CRPD, 2006) 159 State signatories (151 ratifications) as of 15 Dec 2014 The purpose is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Adopts a social model perspective, a shift away from seeing persons with disabilities as "objects" of charity, medical treatment and social protection towards viewing persons with disabilities as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society (UN Convention).

Defining and operationalising disability according to the UN Convention on the Rights of Persons with Disabilities The Convention does not explicitly define disability Preamble of Convention states: Disability is an evolving concept, and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders full and effective participation in society on an equal basis with others Article 1 of the Convention states: Persons with disabilities include those who have long- term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. Convention on the Rights of Persons with Disabilities

Challenges No common definitions, concepts, standards and methodologies within and between UN Member states Inconsistencies and incomparability of data over time and between countries Counting (categories) vs measuring (degree, relationally weighted against environmental characteristics) Need for a clearer picture of what it means to live with a disability access to all mainstream policies, systems, services (e.g. education, employment, leisure, transportation) - inclusion

Challenges 2 Resources to support data collection Fidelity and quality of data Capacity for data collection and training of enumerators Geographical reach of data collection (infrastructure) Inclusiveness (e.g. institutionalised population; enabling assisted response; alternative response formats)

International and national efforts: search for indicators Regionally: e.g. Academic Network of European Disability Experts (ANED) since 2007 Multiple Indicator Cluster Survey (MICS) focused on children WHO/World Bank Model Disability Survey based on WHO ICF, population survey to address Art 31 (impairments activity limitations participation restrictions)

Model Disability Survey: Guiding Principles People with disability have a right to participation in society on an equal basis with others. Disability is an outcome of the interaction between a person with a health condition and contextual factors. It is not merely an attribute of the person. Disability is a continuum, a matter of degree. The experience of disability is diverse. Disability measurement should consider societal or environmental barriers that can have a strong disabling effect, as well as an individuals impairments and health condition. Questions that focus on the respondents lived experience and real-life environment will yield a better understanding of how disability affects peoples daily lives, and what can be done to improve their lives. Cross-national relevance and standardization of the questionnaire are essential. A modular format allows it to be used as a stand-alone survey or incorporated into other national surveys.

Cieza et al. WHO

Repositoryhttp://disabilitysurvey.checkdesign.de/Cierza et al. WHO

Washington Group on Disability Statistics 6 question core set http://www.cdc.gov/ nchs/washington_gro up/wg_questions.ht m

WG Short Set The recommended short set of questions will identify the majority of the population with difficulties in functioning in basic actions; difficulties that have the potential to limit independent living or social integration if appropriate accommodation is not made.

Disability as a demographic: problems and opportunities ProblemsOpportunities Location of disability in the individuals capacity for functioning Linking disability to a HEALTH problem Not sensitive to situational and temporal variability Not related to environmental context Not indicative of the dynamic interaction between person and environment characteristics Inconsistency in the incorporation of assistive devices Functional areas missing (e.g. upper limb) Mental health and intellectual disabilities not reflected Non household population not represented Disaggregation of census and national data sources by functional activity variables as a proxy of disability Cost efficient inclusion in ongoing data collection efforts Consistency over time and between countries Data linkage with other, especially environmentally sensitive data sources, variables and measures Monitoring of international development programmes (e.g. Sustainable Development Goals)

The need to supplement data collection of the demographic category with measures of disabling factors (relational measures) Ecological measures of the environment Mobility measures Temporally and situationally/environmentally sensitive measures

Overall Recommendations for international comparability of disability data, analysis and reporting Include Washington Group short question set (6 questions) in censuses and ongoing periodic surveys conducted or financed by national statistical offices, government ministries and United Nations agencies and encourage its inclusion in data collections sponsored by NGO funded agencies disaggregate and monitor progress Improve comparability of data by adopting a common framework and that different types of data collection include the Washington Group short set and that survey modules use the extended set; new methodologies such as the Model Disability Survey (MDS) should complement and extend question set

Member StatesUnited Nations Short-term National office to adopt standardised methodologies (Wg 6) Nominate country focal point Collaboration between UN agencies (ICF model) Mapping of data sources across member states; quality appraisal UN Statistical Commission to encourage UN SD to provide technical assistance Regional offices to facilitate training Annual data briefs/reports Open Expert Group Platform Medium-term Include short set in census; report disaggregated data using UN standard formats Accessibility of data reports New data tools; assess attitudes, experiences Establish Disability Data, Method and Evidence Synthesis Working Group Specific report by 2020 required in country reports New standardised questions on environment and participation (UN Stat Comm) Partnerships with donors funders and data user/producers Immediate involvement of people with disabilities in all processes Long-term Develop innovative data collection techniques Qualitative information Integrated data systems in 5 year cycles Periodic UN Global Disability Report, produced every 5 yeas by the Secretary- General

Sustainable Development Goals (Post 2015)

Opportunity: Sustainable Development Goals (SDGs) post 2015 Goal 1End poverty in all its forms everywhere Goal 2End hunger, achieve food security and improved nutrition and promote sustainable agriculture Goal 3Ensure healthy lives and promote wellbeing for all at all ages Goal 4Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all Goal 5Achieve gender equality and empower all women and girls Goal 6Ensure availability and sustainable management of water and sanitation for all Goal 7Ensure access to affordable, reliable, sustainable and modern energy for all Goal 8Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all Goal 9Build resilient infrastructure, promote inclusive and sustainable industrialization and foster innovation (.) .

Disability and international development post-2015: Sustainable Development Goals Recommendations from the Expert Group Meeting Better coordination and leadership at the UN level to facilitate global knowledge exchange; establishment of technical mechanisms to support countries in the development, collection, analysis and dissemination of high quality data on disability Disaggregation of SDG data (indicators) by disability in surveys and censuses Washington Group 6 questions Development of a broader tool set based on ICF framework New methodologies (intersectorial attention, e.g. disability and homelessness) Address gaps in MDG Framework ensure regular monitoring of SDGs in relation to disability

Specific recommendation To include disability in the preamble of the zero draft of the SDG Outcome document All people, of all ages and abilities, are at the centre of sustainability development. The indicators that track the goals should be disaggregated to ensure no one is left behind, and targets should only be considered achieved if they are met for all relevant income and social groups, including disability, gender, age, and any other social group relevant to the national context.

"At the age of 9, I became deaf as a result of a bout with meningitis. In 2002, I went for Voluntary Counseling and Testing (VCT). The results showed that I was HIV+. I become devastated and lost hope to live because I thought that being HIV+ was the end of world for me. Later, I met a disabled person who spiritually encouraged me to accept my status. Now I have confidence to be able to speak out on HIV/AIDS openly. I have been interviewed widely by print and electronic media and I have been invited to speak in public meetings. I am creating awareness on the importance of VCT and encouraging people to know their status. My work is limited by lack of money. Deaf people living in rural areas have no information on HIV/AIDS. I would like to break the barriers by going to visit them right where they live." Susan WHO WRD 2011

Access to and utilisation of health care services

If you have a disability what affects the risks of developing health problems? Some issues Secondary conditions (e.g. bladder cancer in people with SCI; respiratory complications, pressure ulcers) Lack of screening and health risk behaviour counseling Social and environmental access barriers to health care facilities and diagnostic and treatment devices (e.g. scanners, dental chairs, scales) Insufficient insurance coverage of assistive technology Non-inclusion in health related research and exposure to research and clinical diagnostic instruments that may not have been validated for people with disabilities

Example: Accessing primary preventative services Improving Primary Prevention for People with Chronic Disabling Conditions: Focus Group and Internet Poll Findings from Project SHIELD (Strategies and Health Interventions to Enhance Life with a Disability) Kroll T, Jones GC, Kehn ME & Neri MT (2006)

Primary preventive services based on U.S. Preventive Services Task Force Recommendations General Screenings Physical Exam (every 1 to 2 years) Blood pressure check Cholesterol check Blood stool test (age 40 and older) Height and weight measured Bone mineral density screening Gender-Based Screenings Pap smear (all sexually active women or women 18 and older) Breast exam (women 18 and older) Mammogram (women 30 and older; frequency depends on age and history) Dr. discuss prevention of bone loss Prostate exam (men 50 and older) Immunizations Flu shot (annually) Pneumonia shot (once in lifetime) Tetanus shot (every 10 years) Health Behavior Assessment Dr. asked about diet and eating habits Dr. asked about physical activity Dr. asked about smoking Dr. asked about alcohol consumption Dr. asked about birth control Dr. asked about drug use Dr. asked about sexually transmitted diseases

Health risks: NHIS 2002 Limited refers to adults between 18 and 85 years who identified themselves as limited in activities as a result of at least one chronic condition; weighted data

Research objectives Determine the experiences with primary preventive health care services among people with physical disabilities Develop an in-depth understanding of barriers and consumer-defined solutions to improve access to and use of primary preventive services Develop resource material to address primary preventive care needs

Experiences I felt doctor disregarded normal health concerns as not only secondary to my obvious disability, but unimportant to address entirely Avoid GYN care for years needing help to get onto GYN table for exam I have no insurance and the clinic is so busy and it takes a long time to see a doctor The mammogram machine wouldnt work with my wheelchair (couldnt position it) I dont get preventative GYN exams because I cannot find a doctor who does these exams and takes Medicaid who also has an accessible exam table Internet poll, 2006, US. Kroll et al.

Barriers to receiving primary preventive services Health professional and environmental barriers Inaccessibility of facilities and equipment Lack of disability-specific provider knowledge and training Inappropriate professional behavior, courtesy and manner Insufficient provider-patient communication Visit/Appointment time constraints Insufficient and inexperienced provider office staff and support Service user Lack of knowledge about primary preventive services Insufficient insurance coverage No primary care provider Lack of preventive care seeking motivation General frustration with lack of coordination and responsiveness of health care system

Example: Professional Behaviour No direct communication with Person with disability (PWD) Lack of respect and courtesy Insufficient explanations of procedures Health professional does not listen to what the PWD has to say Inability to look beyond disability PWD perceived as being too complex or difficult

Strategies to Minimize Barriers Health professional Improve facility, equipment, and procedural accessibility Improve disability competent staffing at provider office Improve information, communication and service integration among general and specialist providers Improve scheduling system for preventive services (e.g. reminders) Continuing education programs to focus on disability-specific experiences Communication skills and attitude correction Service user Preparation and planning before and after the appointment Self-education Assertiveness and direct communication with providers Careful selection of suitable providers PWD has responsibility to educate providers on how to best deliver services Record keeping and medical event timeline; request records from providers Calendar to plan annual check-ups

Example: Complex marginalisation Health and housing of low income adults with disabilities Aim: To understand the impact of the living environment on the health and access to health care of low-income working-age adults with physical disabilities Design/method: Mixed method study; focus groups (n=28) and survey (84 homeless individuals in 12 shelters in Washington DC) Service user involvement: Consultation group, community partner (housing), paid trained interviewers with disabilities Key findings: 40% (Ho & Kehn, 2007) respondents perceived their health as deteriorating due to substandard, inaccessible living conditions (poor sanitation, crowdedness, inaccessible facilities, lack of medical and instrumental support; safety/privacy concerns); delayed care (prescriptions; assistive equipment); limited coverage, lack of transportation, lack of knowledge of available services Publications: Ho P-S, Kroll T, Kehn M & Pearson K (2007). Health and Housing among Low-Income Adults with Disabilities. Journal of Healthcare for the Poor and Underserved 18, 902-915.

Before I came here, I had to stay in bed for like three months because I was waiting for my wheelchair to come to my place. Id call my doctor and theyd say it was coming. I had to go up there face-to-face to get something done. Then they told me they lost my paperwork and I had to start all over again. I just stayed in my apartment until the rent got too high and I could not afford it and I got put out. Thats when I became homeless I had a nurse refusing to come in here because of the conditions of the place. She refused to come on the floor because it was not sanitary enough for her to come in here [frequent infections; pressure ulcers]

Health-related research and measurement

Exclusion in two principal ways As essential agents: Agenda setting, project planning, delivery, interpretation and dissemination As essential beneficiaries: Study designs, settings, methodologies dont allow for participation

Who is excluded? People with Physical (Mobility Impairment): Example: Cannot write answer Sensory (Vision, Hearing, Speech): Example: Cannot read question Cognitive (Attention, Memory, Concentration, Learning): Example: Cannot remember question; Cannot understand question Psychiatric (Depression, Psychosis): Example: Does not trust interviewer disabilities People from Socially marginalized groups (e.g. income, education, living conditions) Example: Homeless adult with diabetes-related disability and limited formal education lives in shelter 2 out of 7 nights Ethnic and linguistic minorities (e.g. Spanish speaking adults with cognitive or speech impairments) Multiple social disadvantage

Example: Patient-reported outcome measure (PROMS): Can people with learning disabilities participate? Thilo Kroll, Deepa Jahagirdar, Sally Wyke and Karen Ritchie, Health Expectations (2012)

What we did: Our method We decided to look at one common respiratory condition: chronic obstructive pulmonary disease or COPD We looked at literature reviews that described Questionnaires (PROMs) for COPD Fitzpatrick et al [13] and Davies et al [14] Some or specific to respiratory disease, others general SF36, SGRQ, CRQ and EQ5D We wanted to know if people with learning disabilities had been included in the development

What we found Two forms of exclusion People with learning disabilities and people who cannot read well are excluded intentionally (explicit) Dont want them in the study People with learning disabilities and people who cannot read well have been excluded by omission (implicit) Have not thought about including them

Two principal consequences of exclusion personal: health and safety risks (research findings, interventions based on biased assumptions) societal level: flawed statistical basis for decision- making, quality improvement and resource allocation

Spectrum of inclusion/exclusion Invisible Multiple modifications to standard research practice needed Simple modifications to standard research practice needed No Modifications needed Kroll, 2007

Health and wellbeing promotion

Example: Inclusive health promotion for people with disabilities Peer mentoring and the prevention of secondary conditions after SCI Aim: To develop, implement and feasibility-test a peer mentoring program for people with SCI Design/method: Qualitative, developmental feasibility study; uncontrolled pre-post design 6 months with 6 mos follow-up; peer contact with trained peer mentors by phone or in person; explain, monitor demonstrate, refer; regular supervision Service user involvement: Community partner as subcontractor (peer training, implementation); SCI Educator (person with SCI); peer mentors included in development Key findings: Significant reduction of respiratory complications; ER visits over time; high acceptance; SCI knowledge enhanced (exit interview); after grant funding ceased incorporated into hospital service; integration with inpatient education Publications: Kroll T, Gilmore B, Neri MT, Gordon SA & Towle S (2005). Peer Mentoring in the Prevention of Secondary Conditions in People with Newly Acquired Spinal Cord Injury: Preliminary Findings. Journal of Spinal Cord Medicine, 28(2), 133. Neri MT, Kroll T & Groah S (2005). Towards Consumer-Defined Exercise Programs for People with Spinal Cord Injury: Focus Group Findings. Journal of Spinal Cord Medicine, 28(2), 132.

Program was good psychologically because you share concerns and successes, and get good advice (Male, age 59, C6 incomplete injury). I gained good SCI knowledge I would not have gained without the program (Male, age 32, C4 complete injury). Ljungberg, Kroll, Libin, Gordon (2011)

Thank you! General References WHO and World Bank (2011). World Report on Disability. Geneva: WHO. Lollar DJ & Andresen EM (2011). Public Health Perspectives on Disability: Epidemiology to Ethics and Beyond. New York: Springer. Institute of Medicine (2007). The Future of Disability in America. Washington, DC: The National Academies Press. OHara J, McCarthy J, Bouras N (eds) (2010). Intellectual Disability and Ill Health. Cambridge: Cambridge University Press. Kroll T, Keer D, Placek P, Cyril J, Hendershot G (eds) (2007). Towards Best Practices for Surveying People with Disabilities: Hauppage, NY, NovaScience Publishers. Peterson DB (2011). Psychological Aspects of Functioning, Disability and Health. NY: Springer. Shakespeare T (2006) Disability Rights and Wrongs. Cambridge : Polity Press.

Selected references related to the research presented Kroll T, Jahagirdar D, Wyke S, Ritchie K (2012). If Patient Reported Outcome Measures (PROMS) are considered key Health Care Quality Indicators, who is excluded from participation? Health Expectations. DOI: 10.1111/j.1369-7625.2012.00772.x. Ljungberg I, Kroll T, Libin A, Gordon S, Groah S & Neri M (2011). Using peer mentoring with people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 20(3-4), 351358. Ho P-S, Kroll T, Kehn M & Pearson K (2007). Health and Housing among Low-income Adults with Disabilities. Journal of Healthcare for the Poor and Underserved, 18, 902-915. Kroll T; Kehn M; Ho P-S; Groah, S. (2007). Short communication: The SCI Exercise Self- Efficacy Scale (ESES): Development and Psychometric Properties. BMC International Journal of Behavioral Nutrition and Physical Activity, 34(4), http://www.ijbnpa.org/content/4/1/34.http://www.ijbnpa.org/content/4/1/34 Kroll T, Gilmore B, Neri MT, Gordon SA & Towle S (2005). Peer Mentoring in the Prevention of Secondary Conditions in People with Newly Acquired Spinal Cord Injury: Preliminary Findings. Journal of Spinal Cord Medicine, 28(2), 133. Kroll T, Jones GC, Kehn ME & Neri MT (2006). Barriers and Strategies Affecting the Utilization of Primary Preventive Services for People with Physical Disabilities: A Qualitative Inquiry. Health & Social Care in the Community, 14(4), 284-293.

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