Supporting family caregivers of seniors: improving care and caregiver outcomes in End-of-life care.

Transcription

1 Supporting family caregivers of seniors: improving care and caregiver outcomes in End-of-life care. Dr. Jasneet Parmar, Dr. Suzette Bremault-Phillips, Ms. Melissa Johnson

2 Covenant Health s 25 th Annual Palliative Care Conference Faculty/Presenter Disclosure Presenter/Faculty: Dr. Jasneet Parmar / Dept of Family Medicine Relationships with Commercial Interests: Grants/Research Support CIHR Planning Grants & Dissemination Events Amount: $23,490 Principal Investigators: PARMAR, Jasneet; BREMAULT-PHILLIPS, Suzette C; DUA, Tarun; HOLROYDLEDUC, Jayna M; JETTE, Nathalie;

3 Learning Objectives: Participants will appreciate the need for research into ways to support family caregivers of: seniors at end of life

4 Family Caregivers The World Health Organization (WHO) defines family caregivers as those who provide informal unpaid care*. In Canada: 3.8 million family caregivers caring for seniors with short- or long-term health conditions**. These caregivers provide services valued at $25 Billion***. * World Health Organization and Alzheimer's Disease International. Dementia: A public health priority. Geneva, Switzerland: World Health Organization; ** Turner A, Findlay L. Informal caregiving for seniors. Health Reports. 2012;23(3). *** Hollander M, Liu G, Chappell N. Who cares and how much? - the imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly. Healthcare Quarterly. 2009;12(2):42.

5 Rationale for Conference Family caregivers are an integral, yet increasingly overburdened, part of the healthcare system*. They are often overwhelmed by the many stresses of caregiving, conflicting with other demands like work and childcare, resulting in deterioration of the health (physical and mental), social isolation, loss of income, family conflict and distress. * World Health Organization and Alzheimer's Disease International. Dementia: A public health priority. Geneva, Switzerland: World Health Organization; * Health Council of Canada. Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? Ontario: Health Council of Canada; 2012.

6 Rationale for Conference Literature search indicates that various types of caregiver support have been investigated. There is a gap between what is known to help caregivers and what is available. A better understanding of caregiver expectations and ways to foster their resilience is needed. * Health Council of Canada. Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? Ontario: Health Council of Canada; 2012.

7 Objectives of the conference To consolidate research evidence and leading practices to guide research in the area of caregiver support To analyze strengths, gaps and barriers to the provision of caregiver supports, including resource utilization and costs To initiate the development of at least three grant applications related to research on caregiver support strategies and their outcomes on care, caregivers and the health system

8 CIHR Planning Grant Conference - National and International Stakeholders Health Organizations - Covenant Health, AHS, Alberta Health, WHO (Programme for Neurological Diseases and Neuroscience) Researchers - U of A, U of C, UBC, McGill and McMaster, Stanford, Vrije Universiteit Amsterdam Non-profit Organizations - Alzheimer Society of Alberta and NWT, Alberta Caregiver Association, Institute of Health Economics, Seniors Association of Greater Edmonton

9 Pre-Conference 1. Preliminary environmental scan and literature review of caregiver support initiatives 2. Focus groups to provide input from endusers 3. Development of three research foci 4. Creation of evidence summaries (literature search) to facilitate conference discussions, by Dr. Jacqueline McMillan.

10 3 Research Foci: Detail isupport-canada: Evaluate an online support tailored for caregivers of persons with dementia. Support for Caregivers of Seniors at End-of- Life: Evaluate a multifaceted support tailored for caregivers in end of life care. Support for Caregivers of Seniors with Complex Needs: Evaluate multifaceted support tailored for caregivers of the seniors with complex needs.

11 Stakeholder Conference: Set up Conference Day 1 Presentations and Conversations Café (adapted World Café style discussion) addressing specific questions on caregiver support: 1. What is the evidence? 2. What are the strengths, barriers, and gaps? 3. What are key directions for future research? Conference Day 2 Breakout session discussions and Plenary related to preliminary plans for grant applications

12 Conference: End-of-Life Care Theme Leads: Dr. Wendy Duggleby (University of Alberta) Dr. Robin Cohen (McGill University) Dr. Ann Syme (Covenant Health, Palliative Institute) Literature Review: Dr. Jacqueline McMillan (University of Calgary)

13 Literature Review Dr. McMillan conducted a review of current research specific to each target population of caregivers. Her evidence summaries were presented at the conference. Overall, 28 studies included in review of Caregivers of seniors at end-of-life. 9 systematic reviews 11 randomized controlled trials 8 cohort studies

14 Literature Review findings Summary of evidence from systematic reviews suggests that: 1.Direct emotional support and advice on coping result in: a. Decreased distress b. Improved coping ability c. Increased caregiver quality of life* 2.Caregivers were willing and interested to increase their nursing skills** *Candy, B. Interventions for supporting informal caregivers of patients in the terminal phase of disease. Cochrane Database of Systematic Reviews 2011 **Bee, P. A systematic review of informal caregivers needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing 2008; 18:

15 Literature Review findings Systematic reviews: 3. Compared to a control group, spousal caregivers: a. Have higher knowledge scores b. Achieve activity goals c. Cope better with medical situations* *Harding, R. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine 2003; 17:63-74.

16 Literature Review findings Summary of evidence from Random Controlled Trial (RCT) studies suggest that: 1. Caregiver coping skills interventions lead to decreased burden and increased quality of life* 2. Psychosocial interventions result in a more positive caregiver experience** * McMillan, S. Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer 2006; 106: ** Hudson, P. A psycho-educational intervention for family caregivers of patients receiving palliative care: a randomized controlled trial. Journal of Pain and Symptom Management 2005; 30(4):

17 Literature Review findings Summary of evidence from Cohort Studies suggest that: 1. High caregiver distress is most significantly associated with: caregiver burden dissatisfaction with concrete support patient symptom intensity caregiver female gender* *Dumont, S. Caring for a loved one with advanced cancer: determinants of psychological distress in family caregivers. Journal of Palliative Medicine 2006; 9(4):

18 Literature Review findings Cohort Studies: 3. Positive outcomes of caregiving are more frequent in caregivers receiving bereavement care and in those with a religious affiliation**. ** Kang, J. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psycho-Oncology 2013; 22:

19 What Do Caregivers Have to Say Presentation of focus group findings

20 Caregivers Don t Self-Identify If somebody talked about care of the caregiver - I saw myself as a helper, that didn t qualify [me], I m just helping. Don t see themselves as caregivers, therefore don t think to look for or access supports Focus is on the patient: friends, family, the system, don t see them as caregivers either

21 Caregivers Experience a Wide Range of Emotions What kind of wife would leave a husband at home? The constant demand is like someone sucking all of your energy out of you. Guilt Anger and resentment

22 Interpersonal Issues Arise Abandonment. I feel that particularly with family members who could be helping a little bit more and [are] unresponsive. I feel the system is unresponsive, it contributes to feeling stuck. Loss and grief. My husband and my relationship is not the same as he becomes sicker you lose companionship and friendship. People fade away; Advocating is difficult; Family Dynamics can result in tension & conflict

23 Caregiving Impacts Caregivers Health and Well-Being desperation, exhaustion total mental, physical, everything, like I just can t do this anymore but I have to-there s nobody else. Lack of sleep, stress, physical demands affect health No time to look after their needs

24 Navigating the System it's almost like you're in the dark with the diagnosis, nobody's really going to give you any direction where you go. I feel like I have to steel myself for a battle just to ask for anything. Caregivers want upfront, straight forward practical information with reasonable access

25 Need Support Services with the support groups you get so much information from other people how things have worked for them and the problems they have had. Available Accessible

26 Work and Finances I was laid off I just didn't have the emotional strength to job hunt and my husband was declining. you re left with this bill here and it s time for you to start using your RRSPs and paying for this. Difficult to balance work and care Out-of-pocket expenses Leave work, reduce hours, take time off Impact on long-term financial health

27 Moving to the Positive

28 Caregivers seek to have their voices heard, their knowledge & experience valued, recognized and sought as part of the care team.

29 Conversations Café and Day 2 discussions 1. Diversity in caregiver experience is also related to the person s illness and situation. 2. Family caregivers in end of life care undergo multiple concurrent complex transitions.

30 Conversations Café and Day 2 discussions 3. Focus on relationship building and supporting caregivers themselves is needed. 4. Advocates/navigators to help caregivers access resources is essential.

31 Conversations Café and Day 2 discussions 5. Services and resources that focus on the whole illness experience should be developed. 6. Goals of services should serve both respite needs and support of resilience.

32 Recommendations 1. A synthesis of current literature: caregiver burden, impact on system, best practices, identifying strategies. 2. Designing flexible and practical resources that address intensity of caregiving.

33 Recommendations 3. Development of provincial frameworks for end-of-life care. 4. Formulation of care pathways for Caregivers. 5. Identification of goals of care for caregivers.

34 Recommendations 6. Creation of a public education/awareness campaign. 7. Establishment of appropriate, supportive policies that consider the whole picture.

35 Next Steps: Post-Conference Dissemination and Research Proposal Writing Conference highlights executive summary for dissemination amongst stakeholder groups Conference proceedings detailed manuscript on current evidence, gaps, discussion points, and research directions for publication Further grant proposals being finalized and submitted