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Timing it Right: Giving family caregivers the support they need when they need it! Jill I. Cameron, PhD Ministry of Health and Long-term Care Career Scientist Assistant Professor Adjunct Scientist, Toronto Rehab Institute Department of Occupational Science and Occupational Therapy Creating Leaders in OT Presentation Objectives 1. Describe the Timing It Right framework 2. Share results of framework validation study Highlight caregivers changing needs for support Discuss different mechanisms for providing this support 3. Discuss the next steps in this program of research Department of Occupational Science and Occupational Therapy Why Family Caregivers? One in eight adult Canadians informally providing care in the community Support patient rehabilitation Provide assistance with ADL, IADL, Med care Defer institutional care Health care system encourages brief hospitalization and offers limited formal community services Family members assume caregiver role but receive little to no formal preparation Experience poor mental and physical health Compromise care provided to stroke survivor Department of Occupational Science and Occupational Therapy Intervention Research Sorenson (2002) Caregivers of Elderly (60 + yrs of age) Including Alzheimer’s, elderly, stroke Most comprehensive (78 studies) Small to moderate improvements in caregiver caregiver burden, mental health, quality of life. Larger effects: psycho-educational multi-component individual as opposed to group interventions. Department of Occupational Science and Occupational Therapy Visser-Meily, et al (2005) Stroke informal caregivers (22 studies) Interventions: Specialist Services Psycho-education Counseling Support During or shortly after hospital discharge Not enough focus on caregiver needs Counseling strategies may address caregiver needs Department of Occupational Science and Occupational Therapy Growing Need for Intervention Ontario Stroke System Best Practice Guidelines emphasize: Stroke prevention Transition management 11. Provide opportunities for ongoing access to rehabilitation and community services for stroke survivors and their families… Rehab management 3. … educate family members about stroke prevention. 14. Assess the ability of the family and caregiver to support stroke recovery process… education… caregiver burden Community re-engagement 16. Assist stroke survivor and family…community participation 18. Support caregivers in balancing personal needs and caregiving responsibilities… Department of Occupational Science and Occupational Therapy What are Interventions Missing? Care Continuum Perspective Things are changing: Place where care is provided/received Availability of trained health care professionals Treatment focus Stroke survivor’s functional ability Corresponding change in caregiver role and, therefore, needs for support Department of Occupational Science and Occupational Therapy Timing It Right Framework Comprehensive five-phased approach to support caregivers from the hospital to the home Considers timing, setting, support needs, modifiable outcomes Used with other theoretical approaches (e.g., social learning theory) Premise: addressing phase-specific needs will enhance caregiver preparedness and ease transitions across care environments Cameron & Gignac. Patient Educ Couns (in press) Department of Occupational Science and Occupational Therapy Framework Development Clinical course for stroke Review existing literature Caregiver needs Emotional, informational, training supports quantitative and qualitative research Specified “when” needs occurred Department of Occupational Science and Occupational Therapy Phases 1. Event/diagnosis 2. Stabilization 3. Preparation 4. Implementation 5. Adaptation Acute Care Acute/Rehab Home Department of Occupational Science and Occupational Therapy Social Support Context (Cohen, 1992) Emotional Informational Social Support Appraisal Tangible & Training Department of Occupational Science and Occupational Therapy Phase 1 – Event/diagnosis Timing: short duration Setting: acute care Caregiver Support Needs: Information: diagnosis, prognosis, current treatment options Emotional: fearful, anxious and need someone to talk to Training: N/A Appraisal: N/A Department of Occupational Science and Occupational Therapy Event/Diagnosis Department of Occupational Science and Occupational Therapy Phase 2 – Stabilization Timing: short duration Setting: acute care Caregiver Support Needs: Information: cause of event, current care needs, next steps Emotional: uncertainty, need someone to talk to Training: initial training to assist with ADL and rehab therapies Appraisal: N/A Department of Occupational Science and Occupational Therapy Stabilization Department of Occupational Science and Occupational Therapy Phase 3 – Preparation Timing: short to moderate duration Setting: acute care or inpatient rehab Caregiver Support Needs: Information: availability and how to access community resources Emotional: mounting anxiety and uncertainty about providing care in the home, social support Training: some practice of new ADL skills and rehab therapies (weekend home visits?) Appraisal: feedback about ADL supporting activities Department of Occupational Science and Occupational Therapy Preparation Department of Occupational Science and Occupational Therapy Phase 4 – Implementation Timing: moderate duration Setting: home Caregiver Support Needs: Information: everyday management of ongoing activities Information: potential impact of providing care on caregiver everyday life and health Training: adapt care provision to the home environment Emotional: fear and anxiety of adapting to providing care in the home Appraisal: feedback on how they are managing in the home Department of Occupational Science and Occupational Therapy Implementation Department of Occupational Science and Occupational Therapy Phase 5 – Adaptation Timing: long duration Setting: home Caregiver Support Needs: Information: community re-integration, planning for the future – what if the caregiver gets sick? Emotional: support from others in similar situations (e.g., support groups), relationship changes Training: assisting stroke survivor with community reintegration Appraisal: continued feedback on how they are managing in the home Department of Occupational Science and Occupational Therapy Adaptation Department of Occupational Science and Occupational Therapy Targeting and Tailoring Intervention content “targeted” to caregivers phase in TIR framework General set of needs per phase Intervention “tailored” to caregivers specific circumstances E.g., Aphasia, mobility, incontinence, etc. Department of Occupational Science and Occupational Therapy Framework Validation Study Department of Occupational Science and Occupational Therapy Research Objective To determine the support needs of urban and rural family caregivers as they cross the care continuum. Department of Occupational Science and Occupational Therapy Methodology In-depth qualitative interviews (approx 1 hr) Family caregivers to stroke survivors & health care professionals Urban and rural Structured interview guide “stroke story” Specific support needs When/where needs occurred Professionally transcribed Framework analysis (Ritchie & Spencer, 1994) Department of Occupational Science and Occupational Therapy Participants - Caregivers Family caregivers to stroke survivors (n=24) Rehab (n=9), community (n=15) Community - aphasia centre (n=5) Aphasia/communication issues (n=14) Urban (n=14), rural (n=10) Age – median 65.5 years (36-77) Female – 17 Spouse – 18 Time since stroke – median 11 mths (1-143) Department of Occupational Science and Occupational Therapy Participants – Health Care Professionals (n=14) Acute (n=4), rehabilitation (n=5), and community (n=5) OT (2), PT (2), SLP (3), SW/CM (3), RN/RPN/APN (4) Female (13) Years providing stroke care (mean 10.8, range 1 to 30) Department of Occupational Science and Occupational Therapy Changing Information Needs Phase Needs Event/Diagnosis • Survival • Prognosis • Treatment options (e.g., tPA) Stabilization • Cause of stroke • Process of care, hospital transfers • Preparation for inpatient rehabilitation Preparation • • • • Implementation Adaptation How to assist with rehab, ADL, 2° prevention Process of community adjustment (HCP & peers) Discharge info, community resources Safety in home and community • Care processes at home (HCP & Peers) • Emergency contacts • New information, treatment options Department of Occupational Science and Occupational Therapy Growing Information Needs Information Needs High Low Event/Diagnosis Stabilization Preparation Implementation Adaptation PHASES/TIME → Department of Occupational Science and Occupational Therapy Phase 1 – Information Needs The nurses and the doctors there, they did keep us well informed of what was gong on and what the care would become and how they would switch the medications… which kind of put our mind at ease. Rehab Caregiver, husband Department of Occupational Science and Occupational Therapy Phase 5 – Information Needs … refresher course, refresher appointments… but if there were some way of having smaller groups with ongoing once a year training. Aphasia caregiver, wife Department of Occupational Science and Occupational Therapy Tangible Supports Phase Needs Event/Diagnosis • Practical assistance: parking, blanket, calling family • Referrals Stabilization • Assistance in home environment (family/friends) • Preparation for inpatient rehab • Desired: assistance with transportation, meals, Preparation Implementation Adaptation accommodation, finances • Safety inspection in home, equipment • Preparation for outpatient rehab and home care • Administrative: discharge planning, financial • Home care • Respite • Family support and assistance • Desire continuation of implementation supports Department of Occupational Science and Occupational Therapy Phase 1 – Tangible Supports Everybody was very nice… they would get me a chair so I could stay, asked me if I needed a coffee or something or a blanket. Rehab Caregiver, husband Department of Occupational Science and Occupational Therapy Training Supports Phase Needs Event/Diagnosis • none Stabilization • none Preparation • ADL – transfers (e.g., bed to chair) • Weekend passes – “try” providing care at home Implementation • Assist with rehab exercises • Desired: feed back re care-giving activities • “How am I doing?” Adaptation • Rehab exercises • Communication skills – aphasia Department of Occupational Science and Occupational Therapy Phase 3 – Training Interviewer: Did they teach you anything as you prepared to go home? Caregiver: Not really, not a lot and I guess because I wasn’t there everyday at that point and the days that I was, I could go and watch him (in therapy). But that was about it. Rural Caregiver, wife Department of Occupational Science and Occupational Therapy Phase 4 – Training/Appraisal My needs were “Tell me that I’m doing things right.” And that’s what I didn’t get. Aphasia Caregiver, wife Department of Occupational Science and Occupational Therapy Emotional Supports Constant across care continuum: Moral support Understanding Empathy Optimism Mechanism Health care professionals throughout Family – question availability during acute care (rural) Peers – back in the community, support groups Department of Occupational Science and Occupational Therapy Phase 1 – Emotional Needs you need just someone to prop you up and tell you it’s going to be okay, or you know things are going maybe be different. But not to get into to a great detail with you then, you just need some moral support then. Emotional support. Aphasia Caregiver, wife Department of Occupational Science and Occupational Therapy Phase 5 – Emotional Needs Interviewer: What do you think about when you think to the future? Caregiver: I’m very frightened because, I’ve watched… the last little while you can see him going downhill. I wonder constantly when another one is going to happen. My own well being. Just last week, I was to the doctor and I have high blood pressure now. Rural Caregiver, wife Department of Occupational Science and Occupational Therapy Mechanism of Support Delivery Changes across phases Health care professional during inpatient phases (1-3) Information, tangible, and training Peers during community phases (4-5) Learn from someone who has been through it Mixed HCP, peers, and family Emotional needs Do we need someone to oversee support needs? e.g., Stroke Support Person? Coach? Department of Occupational Science and Occupational Therapy Contribution Family caregivers support needs change across the care continuum Informs support interventions Next steps Compare and contrast urban and rural caregivers Pilot test intervention using TIR framework Full trial of intervention in urban and rural environments – establish evidence! Department of Occupational Science and Occupational Therapy Acknowledgements Family caregivers and health care professionals who participated TRI, Aphasia Institute, Renfrew CCAC Research Team – Monique Gignac, Gary Naglie, Frank Silver, Shelley Sharp, Maureen Murdock Funding – ICE Grant from CIHR Strategic Training Initiative in Health Care Technology and Place (HCTP). Post-doctoral fellowship (JIC) CIHR IHSPR/IA/IGH and CIHR HCTP Department of Occupational Science and Occupational Therapy Thank you! Questions? [email protected] 416-978-2041 Department of Occupational Science and Occupational Therapy