Engaging Home Care Stakeholders & Family Caregivers Nadine Henningsen, Executive Director Canadian Home Care Association

What are Home Care Stakeholders Saying?

3 Home Care in Canada An array of services, provided in the home and community setting, that encompass health promotion and teaching, curative intervention, end-of-life care, rehabilitation, assistance with activities of daily living, social adaptation and integration, and support for the family caregiver.

Understanding of “Integrated Palliative Approach to Care ” Feedback and acceptance of The Way Forward National Framework Identify champions to promote The Way Forward Increase understanding of Advanced Care Planning and available tools 4 Listening to Home Care Stakeholders

5 Engagement Approaches Team Interviews o Share local experiences and unique challenges. Service User Group o Discuss front-line issues and opportunities. Crowd Sourcing o Pop-Up Station - diverse input though surveys and dialogue o Social Media o Stimulate Dialogue

WHAT WE NEED … ACTION 1: INTEGRATED POLICY & PROGRAMS Policy and services guidelines to support integrated palliative approach Enable flexible service provision WHAT IS HAPPENING … Provincial Palliative Care Strategies Continuum of care Broad Multi-Stakeholders 6 What We Heard practical actions are achievable and can be implemented.

WHAT WE NEED … ACTION 2: DEFINED POPULATION Develop assessment tools to proactively identify clients who could benefit from the integrated palliative approach Identify clients before their crisis Start the conversation (Advance Care Planning) WHAT IS HAPPENING … Population based planning and implementation User-friendly, downloadable guides and tools to support advanced care planning. 7 What We Heard practical actions are achievable and can be implemented.

WHAT WE NEED … ACTION 3: ENGAGEMENT Focus on front-line providers to engage clients in discussions about their prognosis, treatment options and the benefits and risks associated with these options. WHAT IS HAPPENING … Educational videos Best practices for communicating to and caring for individuals with an advanced illness, as well as caring for their families Targeted to physicians and other health care professionals 8 What We Heard practical actions are achievable and can be implemented.

WHAT WE NEED … ACTION 4: EDUCATION Targeted education All Care Team Members Clear Roles and Responsibilities Cultural Sensitivity and Attitudes toward Death WHAT IS HAPPENING … Jurisdiction wide approach to case management / system navigation Specialized training for all care team members Research and understanding of dynamics of ‘dying at home’ 9 What We Heard practical actions are achievable and can be implemented.

WHAT WE NEED … ACTION 5: TOOLS Develop practical tools and guidelines Access to Easy to Use Tools Tools for Home Support Staff WHAT IS HAPPENING … Service providers tool kit for Home Support Workers Specialized software to communicate with Personal Support Workers 10 What We Heard practical actions are achievable and can be implemented.

WHAT WE NEED … ACTION 6: BROAD LINKAGES Primary care teams, chronic care teams, specialized palliative care teams and hospice programs Support Care Coordination and Access to Specialists Access Volunteers / Hospice Programs WHAT IS HAPPENING … Specialized Populations (Aboriginal, Urban and Rural) Increase funding and access to hospice Focus on volunteers 11 What We Heard practical actions are achievable and can be implemented.

WHAT WE NEED … ACTION 7: ACCOUNTABLE Track indicators of the integrated palliative approach. Measure and Improve Your Integrated Palliative Program WHAT IS HAPPENING … Outcome based pathways for palliative care Lean Quality Improvement applications to Palliative Care 12 What We Heard practical actions are achievable and can be implemented.

Expand scope of education to include public o Public awareness and education o Acceptance of “dying at home” o Understanding of Palliative Approach to Care Engage family caregivers Respite Navigational Support Informed Choices 13 What We Heard.... Ways to Improve the Framework

Uniform Approach – Flexible Implementation o Use The Way Forward as a foundation o Standardized assessments, tools Integrated Quality & Accountability o Alignment with current approaches / models o Measure systems impact 14 What We Heard.... Ways to Improve the Framework

INTEGRATION is Imperative Home Care Lens Tools (Policy & Programs) Decision Support Tools Guides Users through a Logic Process 1. Development - Integrated Models 2. Evaluation - Quality Improvement 3. Awareness – Stimulates Dialogue 4. Team Work 15 What We Heard.... Ways to Improve the Framework

16 Barriers We Must Overcome.... Funding and resources Limited recognition for family caregivers Lack of understanding of hospice palliative care approach Fragmented systems Regular access to and partnerships with physicians Recruitment and training of personal support workers Competing priorities - maintain focus on implementation

17 A Catalyst for Change... The Way Forward is… o Realistic o Achievable o Action Orientated Making It Happen … o Support integrated models of care o Redistribute resources o Access all settings of care

What are Family Caregivers Saying?

Who are Family Caregivers? Family caregivers’ are family members and other significant people (as identified by the care recipient) who provide care and assistance to individuals living with a debilitating physical, mental or cognitive condition. (Canadian Caregiver Coalition, 2014)

20 Home care compliments does NOT replace role of individual / caregiver 8 Million caregivers o hours of care / month – 1 or more years o 41% spend personal savings ($100 - $300 / month) o Miss work, reduce hours, quit job The Burden of Caring

As you provide care to your loved one, what can the healthcare system do or have done to improve the quality of life for you and your loved one? Would you like to have received supports earlier than you did? When would that have been? What supports were missing or were needed earlier? As a caregiver, what supports have worked well for you and your loved one? What supports would you like to see changed and how could they be improved? 21 Listening to Family Caregivers

22 Engagement Approaches Broad Caregiver Engagement o On-line survey o Promotion in Caregiver Magazine One-on-One Interviews o Via Phone o Virtually (Adobe Connect) Facilitated Roundtable

23 What We Heard.... “We may talk a different language or use different words, but it all boils down to the same thing: That everyone deserves dignity, everyone deserves to be in their own bed at home with someone that loves them. You know, that’s the best place to be when you’re not feeling well.” -Barbara, caregiver

What We Heard … 1. Informational and Communication Needs o Knowledge about: o The details, extent and prognosis of their loved one’s illness o What to expect about their loved one’s health o How to prepare and plan for the future. o Services and supports available to both the caregiver and their loved one.

Information Needs… Clear, Up Front Information Want the “Full Picture” Understanding of Available Services “My city has given out this booklet with all sorts of activities and I did notice that there were support groups for all sorts – but no support groups for caregivers of any shape or form.” -Hélène, caregiver

What We Heard … 2. Work Place Needs Not as prevalent Range of supports available - Provincial Variations o CCB Access and Duration Difficult to “plan” time off o Understanding of the needs of caregivers o Awareness by employers of the supports available to employee caregivers.

Work Place Needs … “A caregiver cannot be worried about losing their home while caring for a loved one who’s dying” -Tracey, caregiver

What We Heard … 3. Client Care Supports Primary nurse/primary team involved in their care. Support at times of transition Front-line staff comfortable and knowledgeable Flexibility of services Bereavement support for the caregiver.

Client Care Supports … “Having access to a contact in a crisis situation really worked well, because sometimes it really does need that.” “No matter how much you can do on your own, if someone can take over, when you’re just too drained, have no more energy or time to do anything else or you just don’t know how to solve the problem, someone who can step in, in a crisis really worked well.” -Joanne, caregiver

30 A Catalyst for Change... The Way Forward will: Recognize the vital role of caregivers Increase understanding of the balance between caregiving and work (for employed carers) Support processes to access information and communications Enhance competencies for front line providers Facilitate system alignment and flexibility “Not being my mother’s caregiver? Never once did the thought cross my mind.” -Naomi, caregiver

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