Timing it Right to Support Families as they Transition

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1 Timing it Right to Support Families as they Transition Jill Cameron, PhD Canadian Institutes of Health Research New Investigator Assistant Professor Adjunct Scientist, Toronto Rehabilitation Institute C r e a t i n g L e a d e r s i n O T CESN Symposium, April 4, 2012 Outline Why focus on transitions? Overview of CSS Transitions guidelines 6.1 Supporting Patients, Families and Caregivers How can we use these guidelines? Example from current research: Timing it Right Stroke Family Support Program Why focus on transitions? Acute care, rehab, and community care Distinct units Traditionally, few coordinating efforts Patient and family must manage often challenging transitions unfamiliar territory door closed behind us Limited supports from system in community (Kerr, SM, 2001; Cameron, JI et al 2007)

2 Why focus on transitions? Families report not receiving adequate training to support transition home (Smith, JE, et al 2000; Kerr, SM, 2001) ADL Medication Managing emotions Accessing services Financial aid Overview of CSS Transitions Guidelines CSS Best Practice Guidelines 2010 added section on Transitions! Section 6.0: MANAGING STROKE CARE TRANSITIONS This section for 2010 was created to help patients, families, and caregivers understand and move through the transitions along the continuum of stroke care. The recommendations in this section relate to particular aspects of transition management for healthcare professionals, patients, families, and caregivers.

3 The Canadian Stroke Strategy Model for Transitions of Care Following a Stroke 6.0 Managing Stroke Care Transitions 1. Supporting Patients, Families and Caregivers Through Transitions 2. Patient and Family Education 3. Interprofessional Communication 4. Discharge Planning 5. Early Supported Discharge 6. Community Reintegration Following Stroke Recommendation 6.1 Supporting Patients, Families and Caregivers Through Transitions New for 2010 Patients, families, and caregivers should be prepared for their transitions between care environments by being provided with information, education, training, emotional support, and community services specific to the transition they are undergoing

4 Recommendation 6.1: Supporting Patients, Families and Caregivers Through Transitions New for 2010 Support should include: i. written discharge instructions from care providers that identify action plans, follow-up care, and goals, provided to the patient, family, and primary care giver ii. access to a contact person in the hospital or community (designated case manager or system navigator) for postdischarge queries iii. access to and advice from health and social service organizations iv. referrals to community agencies such as stroke survivor groups, peer survivor visiting programs, and other services and agencies How can we apply these guidelines? Timing it Right Stroke Family Support Program

5 What are family support programs missing? Care Continuum / Timing Perspective Things are changing: Place where care is provided/received Treatment focus Availability of trained health care professionals Stroke survivor s functional ability Corresponding change in family role and, therefore, needs for support Timing It Right Framework Comprehensive five-phased approach to support families from the hospital to the home Emphasizes the timing of support needs across the care continuum Premise: addressing phase-specific needs will enhance family preparedness, ease transitions across care environments, and minimize negative outcomes (e.g., burden) Cameron & Gignac. Patient Educ Couns, 2008:70: TIR Phases 1. Event/diagnosis 2. Stabilization 3. Preparation 4. Implementation 5. Adaptation Acute Care Acute/Rehab Home Stroke families have different support needs across these phases

6 Social Support Context (Cohen, 1992) Emotional Informational Social Support Appraisal Tangible & Training How do you use the TIR framework to improve the timing of support provision across care environments? Intervention Development TIR framework provided outline One chapter for each TIR phase Consider informational, emotional, tangible and training needs Qualitative study (Cameron et al, manuscript) 24 family caregivers, urban and rural 14 health care professionals, across care continuum Leveraged existing educational resources Developed new material as needed Interdisciplinary review committee Reviewed and revised for local context

7 Summary of stroke families key needs for each phase and who can meet these needs (Cameron et al manuscript submitted) Event Phase information: diagnostic testing, treatment, medications emotional: sense of being cared for instrumental: comforts (e.g., blanket), completion of forms, companionship, parking, accommodations, help at home training: none HCP: information & instrumental support F/F: emotional & instrumental support Stabilization information: what is a stroke, medical status, expected recovery, rehabilitation eligibility and options, care processes, roles of HCPs emotional: sense of being cared for instrumental: comforts, completion of forms, companionship, parking, accommodations, help at home, transfers between hospitals, arranging rehabilitation training: support ADL in hospital HCP: information & instrumental support F/F: emotional & instrumental support

8 Preparation ~ what information: care plan, rehabilitation goals and intensity, home care services, secondary prevention, navigating the health care system emotional: more relaxed and optimistic instrumental: participate in rehabilitation sessions, discharge planning, disability insurance application, community care service planning, accessing ongoing rehabilitation, ensuring home safety, coordination of follow-up appointments, someone asking how caregiver is doing training: mobility, transfers, medical care at home, rehabilitation exercises, how to provide care in the home, how to manage behavior changes and depression, weekend visits (passes) Preparation ~ who HCPs: information, instrumental, training F/F: instrumental (home preparation) Peers: information (practical guidance for caring in the home) Implementation ~ what information: secondary prevention, where to go with questions, how to care and support rehabilitation at home, realistic expectations regarding outpatient therapy and recovery, community reintegration, community-based programs/services to support caregiver, emotional: sense of being cared for, sharing experience with peers instrumental: case manager, home safety, more home care services based on needs of survivor and caregiver, respite care, day programs, assistance at home, follow-up call from in-patient HCP to check on survivor and caregiver, person to contact with questions, visits from family and friends, organize long-term care papers training: managing rehabilitation at home, communication (aphasia), stroke survivor mental health, support community reintegration, managing the unexpected (e.g., problem solving skills) appraisal: need for feedback on their care-giving skills

9 Implementation ~ who Peers: information (practical guidance), emotional HCP: instrumental, information, appraisal F/F: instrumental (help around the home, food, assist with care provision) Adaptation ~ what information: communication, stroke affects the whole family, life after stroke, community re-integration, preventing or coping with future health events, longterm care options, caregiver respite opportunities emotional: emotional comfort, sense caregiver is being cared for instrumental: re-assessment for community and rehabilitation services, need for supports received during implementation to continue, respite, peer support groups training: communication, prevention of future events, learning to live with the chronicity of stroke Adaptation ~ who HCP: support not evident F/F: support decreases over time Peers: emotional support

10 How do you deliver support across care environments? Qualitative study one person to coordinate support from health care system follow-up after we have left the hospital What have others done? Telephone support (e.g., Grant, 1999, 2002) Trained nurses (e.g., van den Heuvel, 2002) Family Support Organizers (e.g., Lincoln, 2003) Models of Integrated Service Delivery Case management (PRISMA ~ Hebert, 2003) Stroke Support Person one key individual, in person during acute care, by telephone thereafter. Stroke Support Person Health care professional: Occupational Therapist Nurse Social Worker Other Expertise in stroke management and care delivery options. Key Roles of SSP 1. Provide Emotional Support Ask how are you doing? in each session 2. Provide Informational Support (Guide) 3. Provide Tangible Assistance and Guidance Self-management skills Navigation to appropriate resources 4. Feedback on how they are managing it sounds like you are managing well

11 The result: Giving stroke families the support they need when they need it! Objectives of Pilot RCT Test RCT protocol Determine time required for intervention delivery Collect pilot quantitative and qualitative data Pilot RCT Sites Calgary Pembroke Toronto

12 Pilot Protocol Recruit 30 family caregivers Inclusion Criteria: Stroke Survivors: First stroke hospitalization Ischemic or hemorrhagic stroke At least one rehab referral during acute care Caregiver: Able to speak and read English Primarily responsible for providing and/or coordinating care in the community, not paid position Exclusion Criteria: Terminally ill stroke patients Survivors discharged to complex continuing care, long-term care or assisted retirement residences. Intervention Arms: 1. Standard Care 2. Self-directed TIRSFSP Orientation by Stroke Support Person (SSP) 3. SSP-delivered TIRSFSP In hospital for first session Monthly by telephone for first 6 months poststroke Tailored to individual caregiver needs Assessments Baseline, 1, 3, and 6 months post stroke Valid and reliable measurement instruments Demographics Caregiver Assistance Scale MOS Social Support Survey Centre for Epidemiological Studies Depression Scale Positive Affect Schedule Care-giving Impact Scale Stroke Knowledge Test Qualitative interview at completion of 6-month assessment Stroke Support Person Journal

13 Participant Characteristics (n=31) Characteristic Full (n=10) SD (n=10) SC (n=11) Female 8 (80) 8 (80) 8 (73) Age 55 (10.9) 57 (14.9) 57 (19.4) Spouse of patient 6 (60) 8 (80) 6 (55) Lives with patient 7 (70) 7 (70) 8 (73) Previous care experience 2 (20) 4 (40) 3 (27) Primary Daily Activity working for pay caregiver/homemaker retired/disability 7 (70) 2 (20) 1 (10) 6 (60) 2 (20) 2 (20) 6 (55) 2 (18) 3 (27) University or more education 3 (30) 3 (33) 2 (18) Annual Family income over $70,000 3 (30) 2 (20) 3 (27) Quantitative Findings Using HLM, no significant effect of intervention arm on any outcome variables Stroke support person contact in full intervention arm (n=10): median 5 sessions / participant median 1 hour 53 minutes / participant 3.Qualitative Results Pilot (n=19) Results Hunger Appetite Support Buffet Satiety Factors influencing need for support: - stroke severity - relevant knowledge e.g., of stroke, providing care, health care system Factors influencing support use: -Mastery -Mental Health -Ability to ask questions Support buffet (options): - Stroke Support Person - TIRSFSP educational resource (book) - health care professionals - friends/family/peers Support Outcomes: -Understands what to expect -Feels prepared for care-giving role

14 Qualitative Results Summary Hunger Appetite Support Buffet Satiety Hunger Supports TIRSFSP SC High SSP Satisfied Low SD Not Satisfied Summary from Pilot SSP spends 2 hours over 5 sessions with caregivers Caregivers with high hunger benefit from SSP arm of TIRSFSP Caregivers with low hunger benefit from self-directed TIRSFSP and standard care Educational resource What s next? Full trial of intervention in urban and rural environments (Funded by Heart and Stroke Foundation) Goal is 300 caregivers >235 of sample recruited to date 11 research sites across Canada 2 more years to complete study

15 300 family caregivers; 11 sites Oshawa and Barrie n=60 Calgary Thunder Bay Barrie Toronto Charlottetown Oshawa Kingston Ottawa Pembroke Sydney Halifax Ultimate Goal Evidence that the intervention is beneficial to Stroke families Stroke care delivery ~ cost-effective option Adoption by the Ontario Stroke System Recommendation by Canadian Stroke Strategy as a model of family support education and transition guidelines Summary Supporting Transitions When supporting patients and families across transitions important to consider: 1. Consider what Educate and support patient and family corresponding to specific transition and needs 2. Consider how Identify key individual who provides support Specify service delivery procedures Enable patients and families

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