Vancouver Coastal Health Regional Chronic Disease Prevention and Management Strategy Voices for Change Community Engagement Report Executive Summary August 2007 Report submitted by: Belinda Boyd Leader, Community Engagement Vancouver Coastal Health
Introduction: Management and the need for self-management of chronic conditions are critical issues facing the Canadian health care industry today. Technology and advancements in health care services and treatments have resulted in prolonged life expectancy. With this increased longevity, as our bodies age we are prone to develop more diseases and will have to live with them longer than previous generations. This is the paradox we face - longer lives, but lives that are likely beset with multiple chronic diseases that we must manage in order to have an acceptable quality of life. The complexity of the cases presented to health professionals today requires us to seek new methods to support the management of chronic diseases in individuals. We must also encourage individuals to actively self-manage to support a better quality of life, thus reducing costs related to these complex health needs. To respond to the need for a comprehensive and creative approach to chronic disease management, Vancouver Coastal Health (VCH) is developing a regional strategy and service framework that will deliver consistent best-practice care and service for people at risk of, or living with, identified chronic conditions. To support the development of this strategy the Community Engagement (CE) team was asked to conduct a consultation process with caregivers and people living with chronic conditions. The feedback in this report is meant as a guide to how we can efficiently use our limited resources to support people to manage their chronic conditions. By listening to the voices of those who live with the daily challenges of chronic conditions, we can model services that allow people to gain the skills, motivation and confidence to manage their conditions. We can learn how to support their journey and the journey of their caregivers, thus improving their quality of life. VCH needs to take the lead in educating people about the term chronic and help them understand that there is no cure for their disease. However, there are positive choices that can impact both the length of life, but more importantly their quality of living. Following guidelines discussed with, and suggested by, the High Prevalence Continuum Strategy Core Team, feedback from the consultation has been matched to the following themes: 1. Roles and Preferences for Healthcare Providers 2. Role of Community Partnership 3. Self-Management: Education and Support 4. Cultural Competence and Cultural Needs 5. Financial Barriers 6. Communications: Sources of information about our services
Methodology: Collaboration and discussions were undertaken prior to consultation to determine the populations that we wanted to hear from. Various consultation methods were used in order to access a wide range of population groups in our region: focus groups with select populations a survey administered online and in hard copy one-on-one interviews with multi-barrier populations As borne out by population health work, results showed that specific factors impacted participant s motivation and level of confidence to self-manage. Socio economic status, English language proficiency, geographic access to services, support of family and friends and health literacy were some of those factors. A total of 357 people provided their feedback for this consultation. Findings: 1. Roles & Preferences for Healthcare Providers The feedback gathered directs VCH to facilitate partnerships between patients and their care providers, and to establish partnerships in care that focus on communitybased programmes and services. To increase motivation for patients, providers must be open to the inclusion of complementary therapies to enhance selfmanagement options. I see a specialist about medication. I go to the doctor once per month for monitoring. Instead it could be nurse practitioner each month and doctor every 6 months. Could be at local community centres and send the record to GP. John Braithwaite Community Centre Interview When it comes to treatment, the family doctor is not good; just gives medications but won t enter into discussion or provide extra treatment information Mandarin FG Develop chronic disease self-management programs in communitybased settings
Provide VCH health care providers with training and resources on complementary/holistic therapies to support dialogue with patients on their self management programs Acknowledge patients need for use of complementary/holistic therapies in self management programs and consider pilot-testing inclusion of complementary/holistic therapies in self-management programs 2. Role of Community Partnership VCH has limitations in the provision of self management support. Partnerships with community organizations are essential to provide for the full continuum of care. Programs and services need to be culturally appropriate, easily accessible, and offered close to home. Only by partnering with community-based health organizations and cultural groups can accessibility issues and language-specific needs be met. Partnering with other agencies and their staff is needed to provide services - Cantonese FG Develop formalized partnerships with community-based health and cultural organizations to establish or expand support of individuals in the management of chronic conditions 3. Self-Management: Education and Support The capacity of individuals to self-manage is impacted by a number of factors. For some, assets such as their English proficiency, economic status, and family/friend support networks provide them with the motivation and confidence to manage their conditions. Others face barriers due to mental health issues, financial constraints, and cultural needs that reduce their ability to self-manage. Developing a method of identifying the support-needs of a person, focusing on the importance of family and friend support, and delivering education and support for caregivers can improve health outcomes for people living with chronic conditions. Some things that are suggested are not appropriate to an individual. When you re told to do certain exercises for a chronic condition, how do you do this if you re in a wheelchair? Lions Park Housing
I am exercising, I keep moving, am seeing a physio. But I need guidance. I was put on a program but I need help with this part. John Braithwaite Community Centre Interview Develop an assessment tool to determine a person s ability to selfmanage. Capture all factors that are inherent in successful selfmanagement (e.g. stable housing, economic status, friend/family support, mental health and emotional capacity, physical access to services, English proficiency, health literacy level). Use this tool to suggest referrals. Develop awareness-raising campaigns to address the family/social network s role in chronic disease prevention and management Provide caregiver education in various languages in partnership with community groups 4. Cultural Competence and Cultural Needs. The diversity of our communities requires that VCH staff learn about the health care expectations of our various cultural groups. It is also important that staff understand the multicultural values and beliefs of the patients they interact with. Increased understanding will positively impact the patients ability to selfmanage. Communication campaigns in a number of languages that promote the importance of support from family members will raise the profile of chronic conditions and improve outcomes. We need an education campaign in culturally specific print, news and radio to reach ethnic communities. Latin American FG Provide cultural training for staff to increase their sensitivity to cross-cultural health care practise, so they may work with the various cultural communities with openness and cooperation to promote an understanding of self-management Have advertising campaigns in multiple languages that focus on how to support a family member living with chronic disease, and highlighting the fact that when a loved one has a chronic condition
it affects the whole family and therefore needs the support of the whole family 5. Financial Barriers People living with chronic conditions are asking VCH to advocate for increased access to services, programs, and treatments that support chronic disease management. Cost should never be the reason a person does not monitor, participate, or seek help to manage their chronic condition. Strips for diabetes are very expensive!! We have free needle exchange! Should have free diabetes strips. I know people who don t monitor regularly because of the cost of strips. Lions Park Housing FG The cost is prohibitive for making the right choices for you. It becomes a compromise. Powel River Soup Kitchen Interview VCH should consider mechanisms to increase its role in advocacy for low or no-cost provision of health support tools for low-income patients. 6. Communications: Sources of information about our services VCH needs to take a leadership role in developing messages that raise awareness and educate the public on chronic disease prevention and management. By partnering with VCH Population Health, campaigns can be integrated to maximize messaging impact. It's important to me to feel empowered by knowing as much as possible about new treatment options, and also about the experiences of others facing health challenges. Survey Response There is not enough publicity about these diseases, services or treatment, or what kind of place we should turn to for chronic illness Mandarin FG
Develop public awareness campaigns Develop formalised partnerships with VCH Population Health strategic work, to plan campaigns and integrate work plans Conclusion The promotion of health and the prevention of disease must continue to be priorities for VCH. Once chronic disease develops, we need to support people in managing these chronic disease(s), thus minimizing the impact on their quality of life. We need to support people as they gain the motivation and confidence to manage their chronic conditions. Six themes were identified to structure the feedback gathered for this report. Within those themes we have heard the feedback from caregivers and from people living with chronic conditions. The information drawn from their words directs VCH to consider a number of recommendations to support self-management of chronic conditions. Partnerships will need to play a key role in the redesign of services and programmes that support people living with chronic conditions. There is an acknowledgment of VCH s limitations in the provision of self-management support. Therefore, partnerships are essential to provide for the full continuum of care. Needs of individuals vary, and acknowledgement and assessment of the diversity of those needs can provide a clearer referral process, allowing people to get the immediate support they need and improve outcomes. Management of chronic conditions is a global issue and ownership by every person is integral in order to effect change. VCH can take a leadership role in ensuring that people are aware of the impacts of chronic disease. Multi-lingual media campaigns to raise awareness and bring attention to the role each person can play in the prevention and management of chronic conditions are needed. Increased advocacy to remove barriers to self-management is a necessary direction for VCH. To those who participated in this consultation, the direction is clear; to effect change VCH must create barrier-free access to education, treatments and supports for those living with chronic conditions and their caregivers.