TAILORING RECOVERY A CIHR SPOR & RxD Innovations

TAILORING RECOVERY A CIHR SPOR & RxD Innovations

TAILORING RECOVERY A CIHR SPOR & RxD Innovations Partnership in Health Systems Improvement CIHR & RxD Knowing, Sharing, Doing: 1st National KT Conference in Rehabilitation Montreal, QC May 5, 2016 Mental Health Commission of Canada 2006

Out of the Shadows at Last (2006) 2009 Toward Recovery & Well-Being: A Framework for a Mental Health Strategy for Canada(2009) 2012 Changing Directions, Changing Lives: The Mental Health Strategy for Canada (2012) There is now a broad consensus across Canada that recovery must be a

defining value and guiding principle for mental health services Whitley, R.(2014) Introducing recovery, CJP, 55 (5) 2014, p. 233 Anticipated Accreditation Standards the challenge O P I L

Y C what are we implementing? Recovery is a deeply personal process (Anthony, 1993) Recovery is recursive (Davidson, 2002) Recovery is chime (Leamey et al, 2016) Connectedness Hope

Identity Meaning Empowerment Participation and inclusion do not involve changing people to fit in, but changing the world. (Patricia Deegan, 1992) will require a change in the culture of practice, itself

(Sloan, 2009:9) Rethink: 100 Ways to Support Recovery: a Guide for Mental Health Professionals client-centered patient-oriented person-driven implementing policy & practice standards social accountability of policy & practice standards

experiential knowledge Constraints & supports in local cultural context, including institutional Underground practices expertise 2013-2016 Our Partners Research Team, SPOT Sarah Sandham (Lead Ethnographer, Project

Coordinator) Rossio Motta, PhD (Ethnographer, Postdoc) Jiameng Xu (MD/PhD Student) Raphael Lencucha (Collaborator) Dept of Psychiatry, JGH Psychiatrist-in-chief Head-Nurse Psychiatry unit Associate Nursing Director Maternal-Child Health, Mental Health, Training and Staff

Development & McGill University Associate Director of Professional Services Clinical Coordinator, Psychiatry Team Department of Social Services Director Department of Social Services Administrative Coordinator

Patients/Family Members practical knowledge Constraints & supports in local cultural context, including institutional Underground practices collective wisdom the black box 1. Local knowledge (values, beliefs, attitudes) 2. Process

3. Barriers and supports inScience local context Implementation what is the effectiveness of our methodological tool-kit tailoring policy/guidelines to fit priority concerns of local contexts? Social Network Analysis [OL based on trust] Engagin

g codesign Participatory Patient-Provider Group Identify priority concerns Develop action steps Theoretical Framework: NarrativePhenomenology (Mattingly, 2010) Distributed expertise

4-5 Patients 10 Providers 2 Peer Support Workers Story works, as an action, if it can engender certain effects in the listener. But whether this occurs depends upon what sort of contract the listener is willing to make. Stories are often acts of this particularly vulnerable kind. (Garro & Mattingly, 2000, p. 11)

Data Type Completed Remaining Interviews - Non Specific Clients Interviews - BPD (Biskin, Zafran & Estein) Interviews Autism (Bond, Park) Focus Groups - Non Specific Family Interviews - Non Specific

Interviews Autism (Bond, Park) Service Providers Interviews Focus Groups Clients & Providers Participatory Groups 9

10 3 7 0 10 5 ?

3 7 0 4 13 8 2

0 14 4 Opinion Leaders Based on Trust Evaluation of Tailoring Participatory

PatientProvider Group Tool-Kit Longitudinal thick description (Geertz, 1973) of cultural practices, situated

in local Participatory context Patient(Process Evaluation) Provider Ethnographic Methods Group Participant Observation Interviews/Focus groups as

2015 MHCC Practice Guidelines for RecoveryOriented Services 2016 Accreditation Canada Standards (published 2015) 2016 Plan dAction en Sant Mentale (and other policies impacting on healthcare) PD culture(s) of care OPD IPD IPD

OPD IPD iterative process emergent standards OPD IPD

Practice Guidelines Accreditation Standards Policy Best practices (renovations) particularities Values Themes IPD

OPD Research ethics amendments 1. Amended SNA questions to be shorter and less intrusive 2. Amended protocol around participatory groups to divide it into outpatient and inpatient as our ethnographic and on-the-ground knowledge grew to see that inpatient and outpatient were two distinct cultures 3. Amended protocol to be able to conduct more

patient focus groups 4. Amended protocol to include youth under age of 18 to capture more perspectives 5. Amended protocol to change from family focus groups to family interviews 3 Initiatives 1 Formation of a User-Led Advisory Council Feb 17, 2016 first meeting scheduled with persons with lived

experience of mental illness and peer support workers to consult on outcome measures for personal recovery (patients from participatory groups, peer support workers from PHSI, T. Tran) 2 Volunteer Program (training/infrastructure) Proposal to fundraisers for volunteer program proposal for coordinator job description, budget, program details, as well as training specific to JGH needs

3 Ward Renovations (in-patient) Input from the 4E PR Group on Recovery in AC Standards 2014 1.1 The organization takes a strengths-based, and client-directed approach to services and supports 1.2 The team's clinical services and supports are recovery-oriented and focused on well-being. 2.6 The organization maintains a safe and comfortable physical environment that promotes client

recovery. 15.2 The organizations process for selecting guidelines includes seeking input from clients, families, staff, and service providers about the applicability of the guidelines to client recovery. Recovery in AC Standards 2014 1.1 The organization takes a strengths-based, and client-directed approach to services and supports 1.2 The team's clinical services and

supports are recovery-oriented and focused on well-being. 2.6 The organization maintains a safe and comfortable physical environment that promotes client recovery. 15.2 The organizations process for selecting guidelines includes seeking input from clients, families, staff, and service providers about the applicability of the guidelines to client recovery. 2016

1.0 Services are designed collaboratively to meet the needs of clients and the community. 1.1 Services are co-designed with clients and families, partners, and the community. 1.3 Clinical services and supports are recovery-oriented and focused on wellbeing. 2.7 The physical environment is safe, comfortable, and promotes client recovery. 9.10 The client's physical activity needs are supported as part of

comprehensive service delivery . Next steps Everyday Ethical Tensions provider, family, patient interviews & focus Groups policy maker interviews

3 Participatory Forums (policy makers, providers, patients, family members, peer support workers) 2015- Catalyst Grant in 2017 Health Ethics Co-PI: Raphael Lencucha, PhD Co-I: Elisabeth Banon, MD Laurence Kirmayer, MD PhD Chryl Mattingly, PhD

Ethnographers: Rossio Motta, PhD Sarah Sandham, MA Knowledge Users: Louise de Bellefeuille,M.Sc.inf Laurence Suzanne Rouleau, MSc OT Collaborators: Hillel Braude, MBBCH PhD Jon Salsberg, PhD Khalil Geagea, MD FRCPC Ginette Duclervil, BScN Arlen Stewart Orly Estein, Bsc Certified Peer Support

Thank you Recovery in AC Standards 2014 1.1 The organization takes a strengths-based, and client-directed approach to services and supports 1.2 The team's clinical services and supports are recovery-oriented and focused on well-being. 2.6 The organization maintains a safe and comfortable physical environment that promotes client recovery.

15.2 The organizations process for selecting guidelines includes seeking input from clients, families, staff, and service providers about the applicability of the guidelines to client recovery. Recovery in AC Standards 2014 1.1 The organization takes a strengths-based, and client-directed approach to services and supports 1.2 The team's clinical services and supports are recovery-oriented and

focused on well-being. 2.6 The organization maintains a safe and comfortable physical environment that promotes client recovery. 15.2 The organizations process for selecting guidelines includes seeking input from clients, families, staff, and service providers about the applicability of the guidelines to client recovery. 2016 1.0 Services are designed

collaboratively to meet the needs of clients and the community. 1.1 Services are co-designed with clients and families, partners, and the community. 1.3 Clinical services and supports are recovery-oriented and focused on wellbeing. 2.7 The physical environment is safe, comfortable, and promotes client recovery. 9.10 The client's physical activity needs are supported as part of comprehensive service delivery .

(how to get out of the box) SJs reference Contextual Events New emergency (new heart of the hospital) Bill 10 and restructuring to CIUSSS Total reorganization of staff, hospitals place in larger community Mindstrong Fundraiser 2015-2016 JGH Financial audit and funding cuts 4E Ward renovation and relocation Transition to online charting system

Guidelines for Recovery-Oriented Practice 2015 Plan daction en sant mentale 2015-2020 3.2.1 Care and services are recovery-oriented Quebec has based care and mental health services on a recovery-oriented approach. The recovery-oriented approach focuses on the persons experience and her journey to a life that she sees as satisfying and fulfilling, despite mental illness and persistence of symptoms. Recovery-oriented care and services differ from traditional services: beyond the intervention on disease and on disability that derives from disease, health providers generate hope, support the person and are guided by the conviction that she can take

action in the retaking of power over her life; the definition of her needs and strengths; the development of his skills; her accountability; her use of available resources as she considers them necessary to fulfill her needs. [I]t is a great comfort to have the groups, to see the psychiatrist, the psychologist. The team, right? The team. And, you know, from my balcony, I see the Jewish. And at night, when Im out there, I look over and I think, Theyre there. Patient If you could change one thing,

what would it be? Environment/Activities PR Group Meetings Nov 13 2015 (physical environment) Jan 05 2016 (activities on the ward) Feb 16 2016 (environment and activities) Mar 22 2016 (renovations on 4East) Apr 05 2016 (feedback on report) Admin Meetings (report preparation) Apr 08, 2016 Apr 11, 2016 Ward environment

1. Reviewed all PR group transcripts related to experiential knowledge of ward environment (Figure 1) 2. Literature search for best practices in recovery-oriented environments (Table 1) Heuristic device (template from systematic review) architectural elements are the more permanent features of the environment (e.g. room size) ambient features have to do with lighting, sound and noise levels, and air quality

social features concerning an individuals ability to control their level of social interaction (e.g. private rooms) interior design elements are the less permanent features of an environment that can be altered and adapted (e.g. furniture) special issues (Karlin, B. E., & Zeiss, R. A., 2006) Charting your practical knowledge on recovery

Figure 1. 30 25 20 Service User Psychiatry Nursing OT Social Work peer support

15 10 5 0 Architecture Ambient Social Features Interior Design

Special Considerations Architecture natural light single rooms demarcates space for particular activities extra space where possible gardens and contact with nature nature views exercise room and facilities shared activity space e.g. facilities for art making, music, food preparation (kitchen) quiet spaces library/reading nook

open nursing stations Orientation/ location of nursing station (differs from idea of nursing station open and clsoed) milieu therapy, therapeutic environment bathrooms Ambient appropriate artificial light warm temperature noise reduction Social Features (patients ability to control their level of contact) locked ward more staff and volunteers (creating opportunities to connect, engage socially) smaller units Interior Design calming colors and textures

TV Home-like environment Special Considerations computer/internet geriatrics restraints safety Architecture Partitioned areas Room for activities Room for meetings Private Space

SPACE Social features Well-situated nurses station Smaller units To lock or not to lock? for With Self Silence Tai chi Yoga Private room

Exercise Music Artistic expression CONNECTING Ambient Natural Light Sound (control) Warm Lighting Warmth (To) Life plants With Others

Volunteers Other patients Family members Groups discussions Music Common Art mural Activities (OT) Impact? Architecture (practical knowledge + best practices)

the more permanent features of the environment (Karlin, B. E., & Zeiss, R. A., 2006) If someone whos not allowed off the ward says, Could you get me a coffee? Heres some money. Could you go?, do you know how good that feels when youre sitting there all alone and feeling sad? You know, to have someone come in your room and say, How are you doing today? How do you feel today? (Tearful). Doctors are busy, people are busy. Just to have someone to care. I always cry when I say that, but its such a big, big, big deal. Like, Do you wanna take a walk? Do you wanna take a walk outside? Something, anything. For someone whos sick, the littlest, littlest things can me so much. (Tearful) I always cry whenever I say that because I so believe in that. And I dont blame

the doctors or the nurses. I see how busy they are. I used to sit there sometimes and thought, Oh, my god! They have to fill out every pill they give out. Theyre giving pills, theyre serving meals, theyre seeing patients. They have no time. But, you know, (it would be great to have) a volunteer coming in who wants to be there for whatever reason and going, Hey, what are you doing? Do you wanna take a walk outside? Just in the front or on the grounds? Do you wanna talk? You know, to feel human. Just to feel human. ACTIVITIES PHYSICAL ACTIVITIES Exercise, Yoga, Tai Chi, Dancing (Bob Marley) MUSIC Musician coming to perform (Brent), Quiet Listening (Jazz CD), Singing with others

ART Therapeutic Art (OT), Artwork sale through the auxillary, Communal Art Wall in the Ward that you can re-paint over RELAXATION/QUIETUDE Mindfulness, Silence, Meditation, Relaxation Exercises, Tai Chi GROUP DISCUSSIONS READING Purposefully picked books, Reading Corner, Book Exchange VISITING Family, Friends, Other consumers, Ward Staff

SHARED RESPONSIBILITES Watering the plants, Organizing and Activity GAMES Chess, Scrabble, Ping Pong OT Activities: More in general Best practices: space for activities (Table 1a, in progress~ AL, RM, SS, JX) Best practices: space for activities (Table 1b, in progress~ AL, RM, SS, JX)

A participatory approach to ward re-design for recovery (St. Josephs Hospital, Hamilton Ontario) pre-renovation post-renovation Space for activities (St. Josephs Hospital, Hamilton Ontario) Architecture

Partitioned areas Room for activities Room for meetings Private Space SPACE Social features Well-situated nurses station Smaller units To lock or not to lock? With Self Silence

Tai chi Yoga Private room Exercise Music Artistic expression for CONNECTING Ambient Natural Light Sound (control)

Warm Lighting Warmth (To) Life plants With Others Volunteers Other patients Family members Groups discussions Music Common Art mural Activities (OT) Architecture/Ambience

(practical knowledge + best practices) Having to do with lighting, sound and noise levels, and air quality (Karlin, B. E., & Zeiss, R. A., 2006) P: Oh, the other thing is, um, the stationary bike. U1: sigh U2: Does it have cobwebs on it? P: Oh, right on. Thats a great thing to ask. (Group laughs) What a metaphor, eh? Times when that bike doesnt work. (Group laughs) I just quietly rot inside. Im like, You know what? Were already biking Were kind of not going anywhere...

Ambience Current state No windows (Conference, group tx, family meeting, HighCare nursing station, OT staff) Cold temperature Broken out of tune piano Broken exercise bike Dead plants Broken Clock (family room) Broken cassette player (RN Station) Chairs held together with tape (conference room) Old abandoned books

Broken ping pong rackets What is needed Bigger windows Less Noise Non-flourescent lights Better views of outside Staff gathering places Best practices: nature/natural light (Table 1c, in progress~ AL, RM, SS, JX) Nature/natural light

(St. Josephs Hospital, Hamilton Ontario) Architecture Partitioned areas Room for activities Room for meetings Private Space SPACE Social features Well-situated nurses station Smaller units

To lock or not to lock? With Self Silence Tai chi Yoga Private room Exercise Music Artistic expression for CONNECTING

Ambient Natural Light Sound (control) Warm Lighting Warmth (To) Life plants With Others Volunteers Other patients Family members Groups discussions Music

Common Art mural Activities (OT) Social features (practical knowledge + best practices) concern individuals ability to control their level of social interaction (Karlin, B. E., & Zeiss, R. A., 2006) U: I can see the hospital from my balcony, out my window, and at night time, when I have my last smoke, I look up and I feel comforted by

knowing its there. (Its like how) Leanne is always bragging about the JGH, in particular, as an institution, as a hospital. I go to visit people and I have different groups I take part in during the week, and I often see the same old people. Theres a 90 year-old woman, who has a residence now, but every day, she walks to the JGH and has her lunch. I think theres a fair group of people among us who have been hospitalized, who have been in the JGH, and we have that pride in the institution, and it brings us comfort to be able to come in. P: So you could imagine if the doors were locked at the entrance. It wouldnt make sense. To lock or not to lock?

Pods / smaller units Nurses stations Locked wards + -Stigma / Secondary Stigma Psychiatric patient as dangerous mad (U-1, P-2, P-4, P-6) Psychiatric ward as a custodial space (P-2, P-4, P-6) Safety Security

Protection (U-1, U-2, P-1, P-3) Facilitates staff work A staff-centered approached (P-2) Monitoring (P-5) Control (P-4) Accelerates transition from closed units to A1 (P-3) Setting boundaries Threatens connection with the ward Privacy (U-1, U-2, P-5) (U-1) Dignity (P-5)

Accountability (P-5) UNlocked Wards -- + More vulnerability, less safety (U-1, P-1, P-3, P-5) Respect of patient rights (P-4, P-2) No boundary setting

Lack of control of who accesses the ward (U-1, P-3, P-4, P-5) Patients autonomy and right to decide (P-2, P-4) No privacy (U-1, P-5) Liberty, freedom, independence (U-1, P-4) Accessibility (U-1, P-2, P-4, P-6) Connection

(U-1) Best practices: [anti]stigma (Table 1d, in progress~ AL, RM, SS, JX) St. Josephs Recovery Renovation Layout of main entrance at St. Josephs Hospital, Hamilton, Ontario Unit door (St. Josephs Hospital, Hamilton Ontario) pre-renovation

post-renovation Nurses station (St. Josephs Hospital, Hamilton Ontario) Ideal Ward: A Synthesis of provider and patient voices The ideal mental health inpatient ward would be a beautiful place that is a safe space that allows for opportunities for connecting with others and also room to be with oneself. There would be a library reading corner with good books and good lighting. There would be an exercise room and the space and staff/volunteer presence for guided active pursuits like yoga, tai chi, and group music sessions. There would be a communal art wall where those on

the ward can contribute to a common project, which can be repainted over so that the communal project can be ongoing and renewed etc. The ward would be safe for both staff and consumers but also have a warmth to the environment. Warm heavy blankets could be used to help calm those in distress and the overall room temperature would be warmer. The ward would have a piano that works and ping pong rackets that work. The ward would model life, not lifelessness; there would be live plants that those who are currently staying on 4E could help take responsibility for in providing watering and care. Those currently on the ward would also have the opportunity to take on some manner of responsibilities in the care and daily activities in the ward, and may have the opportunities to initiate and organize events or activities. The ideal ward will provide both safety but also privacy and dignity to those accessing its services they would have single rooms and adequate privacy and accessibility in the bathrooms. The ward would be flooded with natural light and a view to the outside. In addition to group activities mentioned earlier, there would also be robust and consistent access to Occupational Therapy activities. On the ideal ward there would be

opportunities for group discussions with other peers as well as with staff. There may be smaller spaces where service users can meet quietly with friends and family, as well as an outdoor balcony with an outdoor garden. References for Table 1 Ward Design Recommendations Arya, D. (2011). So, you want to design an acute mental health inpatient unit: physical issues for consideration. Australas Psychiatry, 19(2), 163-167. doi:10.3109/10398562.2011.562506 Borge, L., & Fagermoen, M. S. (2008). Patients' core experiences of hospital treatment: Wholeness and self-worth in time and space. Journal of Mental Health, 17(2), 193-205. Bowers, L., Allan, T., Haglund, K., Mir-Cochrane, E., Nijman, H., Simpson, A., & Van Der Merwe, M. (2008). The City 128 extension: locked doors in acute psychiatry, outcome and acceptability. City University. Cold, B., Kolstad, A., & Larssther, S. (1998). Aesthetics, well-being and health: abstracts on theoretical and empirical research within environmental aesthetics.

Connellan, K., Gaardboe, M., Riggs, D., Due, C., Reinschmidt, A., & Mustillo, L. (2013). Stressed spaces: mental health and architecture. Herd, 6(4), 127-168. Dobrohotoff, J. T., & Llewellyn-Jones, R. H. (2011). Psychogeriatric inpatient unit design: A literature review. International Psychogeriatrics, 23(02), 174-189. Gross, R., Sasson, Y., Zarhy, M., & Zohar, J. (1998). Healing environment in psychiatric hospital design. Gen Hosp Psychiatry, 20(2), 108-114. James, P., Hart, JE., Banay RF, & Laden F. (2016) Exposure to greenness and mortality in a nationwide prospective cohort study of women. Environmental Health Perspectives; doi:10.1289/ehp.1510363 [Online 14 Apr 2016] Karlin, B. E., & Zeiss, R. A. (2006). Best practices: environmental and therapeutic issues in psychiatric hospital design: toward best practices. Psychiatr Serv, 57(10), 1376-1378. doi:10.1176/ps.2006.57.10.1376 Liang, Alice. (2008). Centre for Addiction and Mental Health: Master vision. http://www.camh.ca/en/hospital/about_camh/CAMH_redevelopment/Documents/080215%20CAMH%20Master%20Vision%20Final %20Document.pdff Liang, Alice. (2009). House and Garden in the City A post-occupancy evaluation of the recovery model of care. http://www.montgomerysisam.com/sites/default/files/articles/162/file/msa_al_2009.pdf

van der Merwe, M., Bowers, L., Jones, J., Simpson, A., & Haglund, K. (2009). Locked doors in acute inpatient psychiatry: a literature review. Journal of psychiatric and mental health nursing, 16(3), 293-299. McKellar, S. (2015). Contested Spaces: The Problem with Modern Psychiatric Interiors. Interiors, 6(1), 21-39. Papoulias, C., Csipke, E., Rose, D., McKellar, S., & Wykes, T. (2014). The psychiatric ward as a therapeutic space: systematic review. The British Journal of Psychiatry, 205(3), 171-176. Scanlan, J. N., & Novak, T. (2015). Sensory approaches in mental health: A scoping review. Australian Occupational Therapy Journal, 62(5), 277-285. doi:10.1111/1440-1630.12224 Smith, S., & Jones, J. (2014). Use of a sensory room on an intensive care unit. Journal of psychosocial nursing and mental health services. TAILORING RECOVERY A CIHR SPOR & RxD Innovations Partnership in Health Systems Improvement CIHR & RxD

Knowing, Sharing, Doing: 1st National KT Conference in Rehabilitation Montreal, QC The Emperors New Clothes Bringing Context Back (Image courtesy of Jon Salsberg PhD, Associate Director, PRAM) Real world practice Experiential or practical knowledge

Evidence Technical Knowledge Bringing Context Back Glasgow, R. E., & Emmons, K. M. (2007). How Can We Increase Translation of Research into Practice? Types of Evidence Needed. Annual Review Public Health, 28, p, 417. Study Design A transformative mixed methods research and evaluation paradigm leads to involvement of stakeholders in the design and implementation of

research whose aim/result(s) is to foster and evaluate change. Mertens, D. M. (2009). Transformative research and evaluation. New York: The Guilford Press.

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