This research, Determining the Feasibility of a Medical Respite Intervention Study
for Older Homeless Patients in Vancouver, BC, was made possible by a Pathway to
Patient-Oriented Research (P2P) award funded by The Michael Smith Foundation
for Health Research (MSFHR) in partnership with The BC SUPPORT Unit. The
opinions and interpretations in this publication are those of the authors and do not
necessarily reflect those of MSFHR or The BC SUPPORT Unit.

We respectfully acknowledge that Simon Fraser University is located on unceded
Coast Salish Territory, the traditional territories of the Musqueam, Squamish and
Tsleil-Waututh Nations.

For valuable contributions to the initiation of this project, we thank the BC Support
Unit. We also recognize the time and contributions of the project team and Medical
Respite Task Force members:
  Chris Danielsen, Patient co-lead
  Dorothy Kestle, Patient partner
  Stephen Smart, Patient partner
  Scott Small, Catholic Charities Shelter Services
  Harvey Bosma, Providence Health Care
  Karen Custodio, Providence Health Care
  Celine Mauboules, Homelessness Services Association of British Columbia
  Chloe Good, Homelessness Services Association of British Columbia
  Dustin Lupik, Homelessness Services Association of British Columbia
  Anthony Kupferschmidt, Executive Director, West End Seniors’ Network
  Anita Palepu, University of British Columbia
  Alec Yu, University of British Columbia
  Shayne Williams, Lookout Housing and Health Society
  Megan Kriger, Lookout Housing and Health Society
  Darin Frose, The New Vista Society
  Kara-Leigh Bloch, Senior Services Society
  Tracy Adams, Vancouver Coastal Health

How to cite this report:
Canham, S. L. (2019). Determining the feasibility of a medical respite intervention
study for older homeless patients in Metro Vancouver. Vancouver, BC: Simon Fraser

Report designed by Joe Humphries

 Acknowledgements                                                                         ii

 Background                                                                               5
   Medical Respite Care                                                                   5

 Methods                                                                                  7
   Recruitment                                                                            7
   Participants                                                                           7
   Data Collection                                                                        7
   Data Analysis                                                                          8

 Findings                                                                                 9
 1. What a Program of Research on Medical Respite Should Involve                          9
    Desired Qualities of Researchers                                                      9
 		      Peer researchers                                                                 10
    Suggested Study Design                                                                11
 		      Acceptability of a RCT                                                           11
 		      Qualitative, quantitative, or mixed methods?                                     13
    Participants                                                                          13
 		      Eligibility criteria                                                             13
 		      Participant recruitment                                                          11
 			              When to recruit?                                                        11
 			              Where to recruit?                                                       11
 			              How to recruit?                                                         12
 		      Participant retention                                                            13
 		      Potential participants’ willingness to participate in medical respite research   13
 			              Challenges to potential participation                                   13
 			              Motivation to participate in program of medical respite research        14
 			              Financial incentives for participation                                  15
    Data Collection                                                                       16
 			              Primary or Secondary Data?                                              16
 			              Data collection should be culturally sensitive and trauma-informed      17
 			              Privacy considerations                                                  17
 		      Background data                                                                  18
 		      Physical and mental health data                                                  18
 		      Data on healthcare and service utilization and costs                             19
 		      Outcome data                                                                     20
 		      Data Collection Locations                                                        20
 		      Barriers to Data Collection                                                      21
 		      Opportunities for Data Collection or Pilot Studies                               21
2. What a Medical Respite Program Should Include                                   23
   Culture of the medical respite program                                          23
   Physical design of a medical respite site                                       24
   Who should be involved in the delivery of medical respite?                      24
		      Medical staff                                                              24
		      Allied health professionals                                                25
		      Mental health therapists and drug and alcohol counsellors                  25
		      Social worker, case manager, housing coordinator                           26
		      Non-professional supports and auxiliary staff                              27
		      Research team member                                                       27
   What services should be provided in a medical respite program?                  27
		      One-stop shop                                                              27
		 Transportation                                                                  28
		      Opportunities for social engagement, mental stimulation, and life skills
		 development                                                                     29
   Who should be able to access a medical respite program?                         30
   Existing models of post-acute care for PWLEs                                    30

Discussion                                                                         32
   Study Limitations                                                               34
   Future Directions                                                               34

References                                                                         35
Table 1. Patient Participant Characteristics                                       38
Table 2. Participant Reports on Data to Collect                                    39
Table 3. Participant Reports on What to Include in a Medical Respite Program       40
Appendix A. Semi-Structured Interview Guides                                       42
SFU Gerontology Research Centre         5

Since the mid-1980s, the homeless population          adhering to instructions for rest, nutrition, and
in Canada has grown.1 This is pronounced in           follow-up care.4,7,9 Even when a PWLE secures a
Metro Vancouver where the 2017 homeless               shelter bed following discharge, these locations
count identified 3,605 homeless persons—21%           are suboptimal—there is no guarantee that 24-
of whom were older adults (age 55+ years).2 This      hour rest can be obtained or that shelter staff can
represents a 162% increase in homelessness            assist with healthcare needs.4,9 Safe, clean options
among persons aged 55+ and a 450% increase            for post-hospital recovery are rare for PWLEs,
among persons aged 65+ between 2008 and               increasing the risk for re-hospitalization.
2017.2 In both research and practice, age 50
has been used to characterize older homeless          Medical Respite Care
persons, largely because the mental and physical      One response to fill the continuum of care gap
health of older homeless adults most closely typify   between hospital discharge and recovery for
those of persons 10 years older.3 In addition to      PWLEs is medical respite care. Medical respite
significant substance use and mental health issues    is the provision of post-acute medical care for
experienced by this population, older homeless        PWLEs who are not ill enough to justify staying in
adults are often also living with multiple physical   a hospital bed, yet are too sick or frail to recover
health issues. Persons with lived experience of       from a physical illness or injury on the streets or
homelessness (PWLEs) often present with acute,        in a traditional shelter.8,10 The first medical respite
communicable diseases, which are spread easily        programs were developed in the mid-1980s
through shared shelter spaces, as well as chronic     in the United States, and today more than 200
conditions that worsen over time, including           Health Care for the Homeless programs operate
diabetes, foot and leg problems, congestive heart     nationally and are integrated into the US federal
failure, chronic obstructive pulmonary disease,       healthcare system.1 In Canada, the first medical
etc.1,4 Moreover, respiratory, skin, digestive, and   respite program was not developed until 1999
musculoskeletal conditions are frequent medical       and only three programs have been formally
issues among PWLEs.5–7                                recognized, all of which are in Ontario.11

The poor health of older PWLEs is challenged by       As an intervention, the two primary models of
the lack of access to health services, especially     medical respite are: 1) dedicated beds within a
primary care.7 PWLEs frequently receive care in       homeless shelter or 2) a purpose-built medical
hospital emergency departments, are hospitalized      respite site.12 The range of medical respite
more than the general population, and have            services vary, though they typically include:
lengthy inpatient stays.7,8 Health problems,          medical care, medication management, case
treatments, and care continuity are disrupted by      management (income assistance, benefits
homelessness as individuals often prioritize their    acquisition, housing placement, etc.), onsite
basic needs such as safe shelter and food security    or referral to mental health and substance use
over healthcare.8 Likewise, overexposure to           treatment, transportation, and food.12 Respite
environmental elements, nutritional deficiencies,     patients receive care ranging from one week to
victimization, and negative coping behaviors          one month, though there is significant discrepancy
affect a PWLE’s health management.7 These             in length of stay across programs.6,13–15 Referrals
difficulties are exacerbated following hospital       to medical respite are made by hospital social
discharge because of challenges in affording,         workers, discharge nurses, homeless service
filling, and refrigerating prescriptions and          providers, health and drug clinics, detox facilities,
6   SFU Gerontology Research Centre

                                      police officers, prisons, or self-referrals.6,7,9,16
                                      Program eligibility varies, although most require
                                      patients to be adult PWLEs in need of medical
                                      treatment who lack family support and are not
                                      actively using drugs or alcohol; some programs
                                      require patients to have the capacity for basic
                                      self-care, while other programs support patients
                                      with activities of daily living.7,10,17–19

                                      With the goal of providing safe and supported
                                      locations for PWLEs to continue medical
                                      recovery, medical respite interventions have
                                      resulted in improved health and reduced
                                      healthcare utilization and costs for general
                                      populations of PWLEs.10 Though research on the
                                      impact of respite care has found mixed results
                                      regarding the mortality risk of respite patients vs.
                                      comparison groups,6,19,20 medical respite patients
                                      have been found to experience improvements in
                                      quality of life, medication stabilization, access to
                                      health and community care, insurance, income,
                                      and housing, as well as reductions in substance
                                      use following treatment.7,14,19,21 In addition,
                                      medical respite programs have demonstrated
                                      reduced future hospital admissions, inpatient
                                      days, and hospital readmissions among PWLEs,
                                      resulting in significant health system cost
                                      savings.17,22 As a whole, available literature from
                                      other jurisdictions with general populations
                                      of PWLEs suggests that medical respite can
                                      improve both individual- and system-level
                                      outcomes. However, despite the unique and
                                      growing healthcare needs of older PWLEs,23
                                      no research has specifically focused on
                                      the effectiveness of medical respite for this

                                      In light of the positive outcomes of medical
                                      respite in general PWLE populations in other
                                      jurisdictions, the current study examined
                                      the feasibility of conducting a randomized
                                      controlled trial (RCT) to test the effectiveness of
                                      a medical respite intervention for older PWLEs
                                      in Vancouver, BC. We examined feasibility by
                                      exploring 1) access to patient participants; 2)
                                      data availability and collection; and 3) how the
                                      intervention could be designed.
SFU Gerontology Research Centre       7

Based on principles of community-based                delivery or receipt of health or social services for
participatory research (CBPR), a patient partner      older PWLEs in Metro Vancouver; and able to
was engaged from the outset of study initiation       speak conversational English, participate in an
as a key decision maker on the project team. In       interview for up to one-hour, and give voluntary
addition, a project steering committee, known         and informed consent. Written informed consent
as the Medical Respite Task Force (MRTF) was          was obtained from all participants prior to the
formed and consulted quarterly (four times)           interview.
over the course of this one-year study. The 17
members of the MRTF included the patient              Participants
partner, research trainee (author of this report),    Fifteen patient participants (10 male, 5 female)
two other patients with lived experience, and         were interviewed (Table 1). Patient participants
multidisciplinary professionals in the health and     ranged in age from 36 to 73 years (M: 54 years);
social service sector with experience coordinating    five were living in social housing, six were staying
the healthcare needs of older adults experiencing     in a transitional shelter, three were living in a
homelessness after hospital discharge. This study     general shelter, and one patient participant
utilized the expert knowledge of the project team     reported unstable housing at the time of the
and MRTF as one source of data, and interviews        interview. The majority of patient participants
and focus groups with patients and health and         reported being Caucasian (n=10), while 4 patient
social service providers as an additional source.     participants identified as Indigenous, Aboriginal,
The research trainee carried out day-to-day tasks     or Metis; one patient participant reported being
to ensure project goals were met, coordinated         Asian and one reported being Black.
project team and MRTF meetings, and ensured
MRTF feedback was incorporated into project           The eleven provider participants (5 male, 6
processes and outcomes. In addition, the trainee      female) were professionals working in clinical,
led data collection and analysis, while ensuring      healthcare, shelter, or housing sectors across
project compliance with University research and       Metro Vancouver. Five provider participants
ethical standards. Ethics approval was obtained       were employed by a health authority, three were
from a University Institutional Review Board and      shelter workers, two had an academic affiliation
participant names have been removed to protect        and clinical responsibilities, and one worked for a
identities.                                           social service agency. No additional demographic
                                                      data were collected from provider participants.
Both patient and provider participants were           Data Collection
recruited with the assistance of members of the       Efforts were made to utilize a data collection
MRTF who were asked to invite their colleagues        format most appropriate and acceptable to
and to inform their clients about the project.        both patient and provider participants. Thus, in
Eight of the patient participants were recruited by   consultation with referring providers and patient
the patient co-lead, while other MRTF members         participants the trainee determined whether
recruited the other seven patient participants and    one-on-one interviews or focus groups were
all 11 provider participants.                         more appropriate. All participants indicated
                                                      their preference for either an in-person or phone
Criteria for participation in the study included:     interview, or focus group setting. All preferences
being age 19 or older and involved in the direct      for interview type were accommodated.
8        SFU Gerontology Research Centre

                                                 Provider participants were interviewed between
Patient participants were interviewed between    September 2018 and February 2019. Nine of
July and November 2018. Three of these           the provider participant interviews were one-on-
interviews were conducted over the phone         one interviews conducted by phone, while two
and all others were conducted in-person.         provider participants participated in an in-person
Eleven of the fifteen participants opted for a   focus group. Patient participants received a $25
one-on-one interview, while one focus group      gift card to Tim Horton’s (which was donated
with four patient participants was conducted.    to this project by Catholic Charities) for their
                                                 participation; no provider participants were paid
                                                 for their time in this study.

                                                 Prior to data collection, interview questions
                                                 were developed by the project team and
                                                 subsequently reviewed and approved by
                                                 the MRTF. The interview guide incorporated
                                                 questions from the existing literature, though
                                                 modified to fit the local context (Metro
                                                 Vancouver), as well as others that related to
                                                 the project goals. A semi-structured interview
                                                 guide (Appendix A) was developed for patient
                                                 participants and differed from that developed for
                                                 provider participants. However, these interview
                                                 guides remained the same for both interviews
                                                 and focus groups. For five patient participant
                                                 interviews, in-depth, detailed notes were
                                                 taken as participants opted out of having their
                                                 interview audio recorded or the public setting of
                                                 the interview was too noisy (e.g., coffee shops).
                                                 All other interviews were audio recorded and
                                                 transcribed verbatim.

                                                 Data Analysis
                                                 Interview data were analyzed using five phases
                                                 of thematic analysis24: 1) the project trainee
                                                 conducted two initial rounds of reading and then
                                                 re-reading the transcripts to gain familiarity with
                                                 the data; 2) initial codes were generated and
                                                 patterns of meaning in the data were examined;
                                                 3) all the identifiable codes within themes were
                                                 collated and re-arranged and re-organized;
                                                 4) the initial set of themes were shared and
                                                 discussed with the MRTF and themes were
                                                 subsequently refined and further organized;
                                                 and 5) themes were defined and named, and a
                                                 final set of themes was reviewed with the MRTF.
                                                 The qualitative data management software QSR
                                                 NVivo25 facilitated data analysis.
SFU Gerontology Research Centre        9

Participants’ reports can be categorized into            “They’ve started to see that nobody is listening
two primary categories: 1) what a program of             to them, nobody is doing anything, then that
research on medical respite should involve;              starts to compound on them as well. And then
and 2) what a medical respite service should             it starts that mistrust of service providers. Well,
include. First, we describe participants’ reports        so-and-so told me this, but it never happened.
on the qualities that researchers should have            So, I think for them to be open and honest and
when engaged in research with persons with               open to listening to what the person has to
lived experience (PWLEs) of homelessness who             say.” (Provider participant)
are in a medical respite program and outline
preferences for study design, data collection, and    If someone has a trusting relationship with this
participant recruitment and retention. We then        population, then [engaging some of these folks]
turn to participants’ opinions of what should be      probably would be made easier, depending
included in a medical respite program, including      on who's going to be doing the interviewing. If
the culture of the program, the physical design of    you just get somebody cold off the street, it may
a medical respite site, who should be involved in     work, but we found that because we knew who
the delivery of medical respite services, and what    to [approach], that was kind of helpful.” (Provider
services should be provided.                          participant)

1. What a Program of Research on Medical              It was emphasized that researchers be flexible
Respite Should Involve                                and non-judgemental when conducting research
                                                      in a medical setting because of the unease that
Desired Qualities of Researchers                      some people may experience when involved with
Participants described qualities they felt            institutionalized care.
important for researchers to have in order for a          “You’d have to be very flexible, because
program of research on medical respite to be              everyone has a different kind of reaction when
successful, including qualities that would aide           they’re in a healthcare setting. I think just
participant recruitment and retention, as well            being mindful of the fact that some people
as data collection. In addition to being friendly,        feel like a really kind of, oppressive vibe when
empathetic, open-minded, non-judgmental, and              they come into healthcare settings and some
patient, a key quality of researchers was reported        people are really anxious and scared of it, or
to be their ability to build trust and ongoing            and some people are comfortable. And so just
relationships with potential research participants.       being flexible in that, and knowing that it’s not
As one patient participant stated, “Trust is a            a comfortable environment for everybody, and
privilege.”                                               so some people might require a little more
                                                          time and like, rapport building and flexibility
A provider participant described how building             to be not only in like a medical setting but also
trust and showing potential research participants         participating in a research study. I could see
that the research team cares is highly important.         especially for like some Indigenous people, in
This may particularly be the case for researchers         particular, it could be very challenging, given
engaged in working with medical respite program           the history of everything that’s happened.”
participants, some of whom have historical                (Provider participant)
mistrust of the healthcare system and of persons
in positions of power.
10        SFU Gerontology Research Centre

Respecting research participants’ dignity and            research participants that their story is heard and
being mindful of what’s going on in the moment           valued was considered important to collecting
was reported to be important in determining              data.
whether people are comfortable during data                  “Be mindful of, you’re not just doing this
collection. If discomfort is sensed, participants           because you want to develop a program,
suggested that researchers stop their line of               you’re interested in them at that exact
questioning. As well, questioning potential                 moment. There’s nobody else that you’d
patient participants about sensitive topics needs           rather talk to at this moment but them. And
to be done with skill so that questions are not             ensure that they’re not possibly thinking,
perceived as too blunt or abrupt. Outlining                 ‘She’s only talking to me because I’m in this
protocols for what potential participants can               situation, it has nothing to do with me.’ And
expect over the course of the study in an                   you actually convey that their opinion—no
informed consent document was recommended:                  matter how ludicrous it may be—is valued at
   “Kind of like the consent form that you sent             that moment.” (Provider participant)
   me [for this study], going over what could
   happen and what they’ll get out of it. If they’re     A patient participant also wanted there to be
   ever feeling overwhelmed, it’s totally fine,          recognition among researchers that mental
   just let us know, and we can kind of adjust           illness does not preclude individuals from self-
   things and just try to make it as welcoming as        determination and the ability to make decisions:
   possible.” (Provider participant)                         “As a researcher, too, you need to know that
                                                             just because there are patients in there and
Patient participants, in particular, highlighted that        they are mentally ill, [it] doesn’t mean that
having empathy was important because of the                  they’re not aware of the decisions they’re
trauma and mental pain that often accompany                  making while they’re in there.”
potential patient participants’ physical health.
For instance, one patient participant noted that
researchers should, “Probably [have] some level          "A peer research assistant would be
of emotional connection with the trauma that’s           someone who’s a peer who either is
going on…” Another agreed:
   “It’s just taking a really skilled person who has
                                                         homeless or has been homeless and
   a lot of empathy and understands physical             they’re older and they understand what
   illness or injury. Is it going to trigger and bring   they’re looking for. Because they can
   up other pain that is not physical for that           reach out to these people so much
   person? Because that’s kind of what hospital is       easier..."
   about. So, I think it’s really knowing you’re not
   just talking to someone who has a physical
   injury, you’re talking to someone that has a          Peer researchers
   physical injury that’s triggering and bringing        Patient and provider participants agreed on the
   up other stuff.”                                      value of having peer researchers involved in
                                                         the development of future research on medical
In describing whether there is any type of               respite. A peer researcher was described
information that is too personal for people to           as someone who would be able to relate to
be asked about, a patient participant stated, “I         potential participants on a more intimate
don’t know. Sometimes people don’t want to talk          level because they have also experienced
about the past, some people want to talk about           homelessness.
the past. It’s how you feel about the person [i.e.,         “Well a peer research assistant would be
the interviewer]. Personalities matter, right?”             someone who’s a peer who either is homeless
In addition, being able to convey to potential              or has been homeless and they’re older and
SFU Gerontology Research Centre      11

   they understand what they’re looking for.               “I think a person that’s been through it and
   Because they can reach out to these people              then that’s come out on the other side… Or
   so much easier than someone walking down                maybe the people that have worked in all the
   the street…” (Patient participant)                      situations [and] are very empathetic—those
                                                           people would be good too because they’ve
Because trust and relationship building are                been through it. I’m not saying people right
so important to the research process, a peer               out of school because they don’t got the
researcher was identified as being better                  hands on experience. You want people
positioned to create a sense of security and               with hands on experience to deal with this.
understanding among potential participants and             Because [those without the experience
to obtain more honest reports.                             are] going to go home, they’re going to be
   “I firmly believe in peer-led, peer-based               stressed out, these researchers—they can’t
   conversations. So, I’ve been a part of research         believe what they just heard or what they just
   groups and proposals where there’s actually             saw.”
   a peer-designated researcher role within
   the research team to reach out and to                Finally, having a peer researcher was considered
   talk to people and so there is that level of         an effective way to overcome the barrier of
   acceptance and understanding of community,           participants being unwilling to engage with
   and that’s really a level playing field for trying   persons in positions of power. A patient
   to get those real conversations and a sense of       participant suggested that even at “the expense
   safety.” (Provider participant)                      of a relationship” with hospital or shelter staff,
                                                        researchers should distance themselves from the
One patient participant also suggested that peer        groups who hold the power and tell prospective
researchers who have lived through particular           research participants that they do not have an
experiences may be able to cope better with             affiliation with the hospital or with the shelter: “In
data collection than researchers in ways that           order to get past some of the barriers that are
students just out of school may not be able to:         up, you need to [do this]…”
12       SFU Gerontology Research Centre

                                                        sense, the engagement and motivation might
Suggested Study Design                                  be a little less if they’re not engaged in the
Acceptability of a RCT                                  treatment program because it’s probably just
In the present study, which was designed as             run-of-the-mill of what they’ve always been
a feasibility study to inform the development           receiving.”
of a randomized controlled trial (RCT) study
that would test the effectiveness of a medical       One provider participant described how there
respite program for older PWLEs, participants        will be ‘natural controls’ because a medical
were asked directly about the acceptability of a     respite program would reach capacity with only
RCT design. Patient participants did not express     a limited number of beds, and as a result, some
strong opinions about whether a RCT would            patients will be unable to access the program:
be acceptable, stating, “I don’t know how to             “The respite will have [only] so many beds,
respond to that” or deferring to the researcher’s        right, so many spaces? And there may be
knowledge, stating, “You’re the researcher.”             people who would have been eligible, but
When asked whether it is acceptable to have a            because there’s not any space, you could get
treatment group that receives medical respite            consent to follow as just a natural control. Like,
services and compare to a group that does not,           this person would have been good to go to
patient participants felt that this would be no          respite but…we’re at capacity. So, let’s see if
different than treatment as usual, as expressed          we can engage this individual and say we’re
by one participant, “I guess it would be sort            just trying to understand how this affected
of business as usual, right? But you would feel          you and how can we follow you and get
slighted somewhat, for sure. But I think that if         permission to see how you do.”
you’re being part of a study, there can’t be any
expectations.”                                       While the limited capacity of a medical respite
                                                     program and the randomization of potential
                                                     participants into treatment and control arms
"I guess what we’d have to see is whether            was not considered unethical by provider
   or not that model works, and then once            participants, one provider participant felt that
   you’ve got the data to show that model            if potential participants knew that there were
     works, then you can ask for increased           medical respite services that they were not able
                                                     to access this could be ‘discouraging’:
                                  funding."              “That’s so hard. If they know about the
                                                         possibility of having somewhere to stay versus
Similarly, provider participants supported this          being discharged to some crappy shelter,
sentiment; one stated, “The fact that they don’t         then they get the latter option, that can be so
get a bed in respite—it’s probably just one              discouraging for people. And I would worry
more thing that they were expecting.” Another            that it could cause like all sorts of problems
provider participant suggested that this may             for the person but also for the staff.”
be what potential research participants would
expect, but that in order to keep patients in the    Nevertheless, a RCT was also understood as an
control group engaged in the research, there         important first step on the road to advocating for
would need to be incentives:                         increased respite beds. One provider participant
   “You’re always more willing to participate        stated,
   in things when you’re actually receiving the         “If you’ve got a certain amount of funding to
   treatment… Again, it comes to the incentive          only have a certain amount of beds open and
   piece on the other end. So, if you’re having         to run it like that - I mean it’s unfortunate, but
   people in a control group but still giving them      that’s the way it is. I guess what we’d have to
   an incentive for their time to answer their          see is whether or not that model works, and
   questions for the purposes of future research,       then once you’ve got the data to show that
   then I think it’s the same. …I guess from my
SFU Gerontology Research Centre      13

   model works, then you can ask for increased        questionnaires, some of the responses on this
   funding.”                                          document, and then you communicate about
                                                      them afterwards?” A provider participant who
Provider participants also discussed ideas            thought that mixed methods would lead to ‘rich’
about alternate study designs that could be           findings agreed:
considered for a future research proposal, most           “I do think some flavour of the patient
notably a program evaluation inclusive of a               experience would be great. And it may not be
cost-effectiveness analysis. A program evaluation         in the standardized measure, it may be more
study could look “at processes and some                   qualitative. It would be selecting people, and
outcomes” of the intervention and could take              … what was successful for them with respite,
an individual- or systems-level approach. At the          what it allowed them to do – versus their
systems-level, provider participants highlighted          previous experiences being discharged from
the importance of being able to study how a               hospital.”
medical respite program would impact acute            However, as one provider participant
care length-of-stay and discharge planning, and       acknowledged, the methodology should
how resources are allocated. Moreover, as one         ultimately be informed by the question(s) a
provider participant indicated, there is value in     future research study would hope to answer:
“using a population health data approach to put           “I guess it depends on how you’re focusing
some monetary value on [medical respite].”                your research, what is the main thing you want
                                                          to get from it? Because you can get a lot from
Qualitative, quantitative, or mixed methods?              number crunching, but if you want the story,
Participants had a variety of perspectives on             if you want the story, you’re going to have to
whether a future study should use qualitative,            talk to them… I would want to see the stories
quantitative, or mixed methods. Patient                   collaborate with the numbers.”
participants, in particular, indicated a preference
for open-ended, qualitative methods over              Participants
quantitative designs because the latter often         Eligibility criteria
restricted choices without capturing someone’s        In discussions of participant inclusion and
full experience. One patient participant stated,      exclusion criteria for a program of research on
    “Speaking face-to-face, or talking like           medical respite, participants suggested that it
    this, is more advantageous than multiple          depends on what information the research study
    choice. Because multiple choice, you pick         is hoping to gather.
    one, whether it’s right or not. And if you’re         “It boils down to what kind of information
    speaking face-to-face then you’re voicing your        you want, who you want to be the one to give
    opinion and no one is prompting you in one            you that information, and how do we weed
    direction or another.”                                out? So, you’re going to need to weed out
                                                          people. Same thing happened with the At
In addition, in-person data collection was                Home project, they did something that was
suggested by another patient participant to               like the lottery—they had a plentiful amount
result in more honest reporting:                          of questions on a computer and at the end
   “By interviewing them, that’s the only way. If         of the whole thing the computer determined
   you phone me, I’m going to lie to you. If I’m          whether you were feasible and where you
   face-to-face, you know what’s lies and what’s          were feasible to fit into this project.” (Patient
   not. So, if you interview them [do it] face-to-        participant)
                                                      Patients who are frequent users of the hospital
One patient participant suggested using mixed         were identified as one potential group to be
methods: “How about doing a survey where you          recruited for a medical respite program:
have some questionnaires on a document, you              “Definitely people who are homeless or are
have a group of us and they fill out some of the         not safely housed in the community, for sure. I
14       SFU Gerontology Research Centre

   would say, if you look at somebody’s hospital    Some suggested exclusion criteria include
   presentation record, people who have a           persons with cognitive impairment or a
   number of hospital presentations where           substance use disorder, while suggested
   they’re discharged and then come back [to        inclusion criteria include a predetermined age
   the hospital] shortly after for actual health    range and PWLEs who have physical health
   reasons, not just because they’re seeking        conditions that require medical supports.
   support that they don’t necessarily need. But    There were mixed reports on whether persons
   people who are coming back for their health-     engaged in active substance use should be
   related reasons on a regular, consistent basis   included in this study. While some participants
   and they’re homeless. I think it’s clear that    thought all persons should receive an equal
   those people probably need a longer stay or      opportunity to participate, others felt that
   could benefit from the proper support when       persons with substance use disorders would not
   they’re discharged.” (Provider participant)      be cogent enough to participate and/or would
However, it was suggested that any program of       not be honest with researchers.
research on medical respite be as inclusive as         “Well, let me put it this way, there is a lot of
possible. Participants highlighted the importance      drug addicts in places like this [a transitional
of potential participants being able to consent        shelter]. Most of them couldn’t tell you the
to participation, but suggested not restricting        truth if their life depended on it. These
inclusion beyond that:                                 people – and I am one of them, as a matter
   “I mean, obviously consent. I wouldn’t be           of fact. Just so you know, I have a history of
   too restrictive… If they can give consent…          heroin use. I haven’t been using for 6 or 7 or
   because this is the thing, it is such a             8 months or something, I just quit. I was on
   vulnerable population who’s not studied. We         methadone and I brought it down to zero.
   want to see how many we can help and have           I quit using. But, a lot of these people will
   them represented in the sample.” (Provider          tell you anything to get what they want, so
   participant)                                        their word isn’t worth an awful lot.” (Patient
SFU Gerontology Research Centre     15

Finally, it was suggested that persons actively          immediately after or while I’m in the hospital,
using substances should not be included                  it’s just too crazy in my head. So, now some
because there are other programs already exist           time has lapsed so I’m experiencing less pain,
in Metro Vancouver to address their specific care        but I also had some knowledge of this coming
needs.                                                   up.”

Participant recruitment                               Where to recruit?
When to recruit?                                      Participants overwhelmingly identified the
Participants reported that immediately following      hospital as a primary location for recruitment into
hospitalization or discharge was an ideal time        a program of research on medical respite and
to engage potential patient participants in a         hospital social workers as key to recruitment. “I
program of research on medical respite. The           would say talk to social workers at the hospital,
immediacy of the experience was identified            give them the information, and have them pass
as key to someone’s willingness to consent to         the information on to the clients before they
participation and sense of importance in the          leave. (Patient participant)”
research.                                                “Perhaps this could be a task for social
   “For a lot of people, especially in this walk of      workers at the hospital level that says, ‘Here
   life, the immediacy of it is probably important.      are the criteria of what we’re looking for, as
   They seem to have a lot more to say, even to          you go through your day-to-day work, if you
   us [providers], when they do just get out [of         can identify this person and assess him as
   the hospital], rather than when you approach          a viable candidate for our program, you’re
   a week later or two weeks later. (Provider            pre-screening at a local level, which entails
   participant)”                                         some degree of training for them or perhaps
                                                         a protocol—a tick box protocol—assess this,
When one patient participant was asked how               this, this, and this, okay if they meet these tick
willing they would be to be approached about a           boxes, then call us.” (Patient participant)
research study when being discharged from the
hospital, they stated, “That would have probably
been the perfect time.”
                                                      "For a lot of people, especially in this
However, participants highlighted the                 walk of life, the immediacy of it is
importance of remaining mindful that the              probably important. They seem to have
experience of hospitalization and discharge           a lot more to say, even to us [providers],
can be a challenging time, particularly for those     when they do just get out [of the
who are marginalized. A patient participant           hospital], rather than when you approach
suggested that researchers provide potential
participants with information to prepare them for     a week later or two weeks later.."
the study and then give them some space while
they adjust to their discharge:
   “When someone is coming out of the hospital        One provider participant identified that potential
   setting, that’s probably, obviously, not the       patient participants could be identified through
   best time to approach someone… Sometimes           hospital codes that identify which patients do not
   there’s a lot of pain involved. Just the agony     have a location to which they can be discharged:
   of trying to deal with those immediate needs,        “Your target would have to be in acute [care
   for me is a little challenging. I knew about         in the hospital] for the patients that cannot be
   this research prior, so if there were some way       discharged. So, I think your best bet would
   to recruit people prior to being discharged,         be… Have you heard the term ALC [Alternate
   or just as they’re coming out, that might be         Level of Care]? ALC-FS means Family Social,
   a little easier because we’re not in that zone       so anyone under the homeless category or
   yet… I don’t think I would be as available           someone who doesn’t have a place to live…
16       SFU Gerontology Research Centre

   Once they are medically stable, they are ruled      potential patient participant has a relationship
   ALC-FS. So, your target population within           was highlighted.
   acute care would be the ALC-FS patients.”             “But you really got to have that connection
                                                         with them because they get pretty hesitant
Other recruitment sources identified by                  to participate in yet another study and why
participants included detox programs,                    are we doing this and what do you want that
rehabilitation centres that care for high numbers        information for, and all that kind of crap. So, I
of PWLEs, outpatient clinics, community health           think it’s really important that somebody has
nurses, case managers who work for shelter/              that connection.” (Provider participant)
housing organizations, and outreach workers.
   “Finding them, go to the shelters, they’re full     Participant retention
   of them. And if you go to the shelters and          Participants suggested that unstable housing
   you talk to the Housing First workers or the        and limited access to digital resources or phones
   outreach workers, they’ll go in, they’ll kind       can make participant retention in longitudinal
   of be the conduit. They’ll know the ones that       research particularly challenging. For instance,
   have just come out of the hospital and into         one patient participant described how phones
   the shelters and then they can go and talk to       are often stolen or numbers change:
   them.” (Provider participant)                          “Your cell phone number—that’s a changeable
                                                          item with some of them… So, get their
How to recruit?                                           telephone number for texting; if that doesn't
Recruitment posters were suggested by several             work within a reasonable turn, that means
participants who described what information               they’ve changed their phone number—and
these materials should contain: explain what the          that happens on a regular basis because
study is about, who can participate, what will            people get their phone stolen…their
be required of participants and for how long,             telephone number changes, so that’s a
whether there is compensation, and two contact            changeable device, but their emails generally
names and phone numbers. One provider                     remain static.”
participant highlighted the need to be mindful
that recruitment materials account for PWLEs’          In order to stay engaged with PWLEs over time,
accessibility barriers:                                participants suggested that study participants
   “You see the classic research flyers that are       be attached to a case management team (e.g.,
   up with a phone number and email. A lot             ACT [Assertive Community Treatment]) or an
   of clients within marginalized populations          individual caseworker who researchers can
   don’t even have a phone or they have limited        contact if they are unable to directly contact the
   access to email if they know how to work the        study participant. In addition, it was suggested
   computer at the library. So, it would be great if   that multiple forms of contact information
   you’re going to do it, even just to do drop-ins.    be collected from study participants and be
   Say, “Hey the researcher is going to be here        regularly updated (e.g., telephone numbers,
   from this time to this time on these days if you    email addresses). As well, making note of
   want to come learn about this.” And then the        the common locations frequented by study
   researchers could go out and actually educate       participants can offer additional ways to locate
   people…versus leaving it up to the clients.”        study participants if their telephone number
                                                       changes or they are unable to access their email.
Finally, participants indicated that peers are an      As one provider participant stated, “Catching
important source of recruitment. Without using         them in areas where they might be and whether
the term “snowball sampling,” this was identified      there's drop-ins where they could flag those
as another recruitment source. Regardless of           folks. The shelters certainly do have a good eye
who was doing the recruiting, the importance           for this because they know these guys need a
of it being done by someone with whom the              ton of support.”
SFU Gerontology Research Centre    17

                                                         on a MoCA they can still understand, right?
Potential participants’ willingness to participate       It may be just more the higher executive
in medical respite research                              functions, but they can comprehend what
Participants described both challenges to and            you’re saying and doing.”
motivations for participation in a program
of research on medical respite. Challenges             Participants reported that individuals might be
identified were the cognitive state and mental         hesitant to participate in research because they
health status of individuals, potential participants   fear that their report could jeopardize them. This
not wanting to be involved with other people,          might be a particularly important consideration
potential participants not wanting to get              for individuals who are vulnerably housed and
in trouble or compromise themselves, and               reliant on others for housing and services.
language and cultural barriers. Reportedly,               “But then again you can get into trouble
motivations for participating in a medical respite        talking to some people—they would take what
intervention study would range from wanting               you said and use it against you somehow. I
to help oneself or others in a similar situation          don’t even know that that’s realistic, but it’s
and wanting to be heard and acknowledged, to              possible… I wouldn’t like to be out on the
financial incentives such as money, gift cards, or        street with one leg—you’re kind of vulnerable
the opportunity to find permanent housing.                you know?” (Patient participant)

                                                       Other patient participants reported that
       "Most of them actually want to help             regardless of what researchers do to
      better themselves and anybody else               accommodate potential participants, there
   that’s going to be in that situation. The           would be some who are unwilling to participate
                                                       because they do not want to be involved with
older people actually see that the system              other people. When asked who might not want
  is broken and they want to be a part of              to be involved research, a patient participant
   fixing it. They would love for people to            stated,
                                hear them."               “People who are happy without being under
                                                          the observation of people like you, they sleep
                                                          in the bush and come and get a sandwich
Challenges to potential participation                     [from the shelter], there’s a fine example. That
The cognitive status of potential participants            guy don’t have to sleep in the bush, but he
was identified by both patient and provider               chooses to because he doesn’t like people.”
participants as one potential challenge to
engaging potential participants in research.           Finally, another patient participant suggested
Participants suggested that anxiety, active            that willingness to participate may be affected
substance use, and cognitive impairment will           by an individual’s cultural background or
affect someone’s willingness and/or ability            understanding of language and medical or
to participate in research. As one provider            research jargon; researchers should overcome
participant stated, “One challenge with people         these language and literacy barriers by changing
who are older who are vulnerably housed and            the language used:
homeless is often cognitive impairment.” This             “Depending on their cultural situation,
provider suggested a way for researchers to               research language often can be beyond
overcome this challenge:                                  the scope of a lot of people in general. And
   “We do an occupational therapy assessment              when you define older, …depending on their
   on a lot of these patients, so the data                cultural background there might [also] be
   should be in their clinical assessment, like a         language barriers. So, are you able to do this
   MoCA [Montreal Cognitive Assessment] or                research in languages other than English?
   something. There should be something. And              And, also, just jargon in general—that needs to
   it’s interesting, because even if they score low       be tweaked somehow to meet the potential
18   SFU Gerontology Research Centre

                                         level of the individual. So, if they are from
                                         another cultural background and they are
                                         older, you have two variables there that might
                                         be challenging in terms of the jargon, the
                                         academic language used in research often.”

                                       Motivation to participate in program of medical
                                       respite research
                                       As summarized by one patient participant,
                                       participants suggested that people engage
                                       in research “for the betterment of everybody.”
                                       Other patient participants agreed that they
                                       would “want to help you help others like me.”
                                       Moreover, participating in research studies was
                                       identified as a way that people can contribute
                                       and feel good about themselves. “It comes down
                                       to self-esteem. The more you help others, the
                                       better it is…” Participants suggested that older
                                       adults may be especially apt to participate if
                                       they feel that they can help improve their own
                                       circumstances or improve systemic problems.
                                           “Most of them actually want to help better
                                           themselves and anybody else that’s going to
                                           be in that situation. The older people actually
                                           see that the system is broken and they want
                                           to be a part of fixing it. They would love for
                                           people to hear them.” (Provider participant)

                                       The ability for research participants to have their
                                       stories heard or to engage in conversations
                                       with friendly researchers was also highlighted
                                       as a potential motivation for research. As one
                                       provider participant stated, “People want to
                                       be heard, right? Because a lot of times, no one
                                       is paying attention to what they want. Being
                                       listened to. Being asked questions. Getting their
                                       opinion.” Another provider participant agreed:
                                           “There would be a willingness, it’s just that
                                           also, time. If it was quick, I’m sure anyone
                                           would be interested. I think the patients [in
                                           the hospital] would definitely be interested.
                                           It would be a conversation – a lot of them just
                                           want to have human conversation. So, a study
                                           and asking questions… might be something
                                           that could pass the time.”

                                       Financial incentives for participation
                                       Both patient and provider participants suggested
                                       that the biggest motivation for research
                                       participation would be incentives such as money
SFU Gerontology Research Centre        19

or gift cards, or the belief that participation will            disempowerment of marginalized populations.
lead to permanent housing.                                      Other patient participants, however, assigned a
   “I’m just going to go ahead and say money                    dollar value to their time, with several suggesting
   because this is the most expensive city there                that minimum wage be offered as a minimum.
   is in this country, so what else is there? It has            One participant cited the BC Centre for Disease
   to be something of value. And, unfortunately,                Control peer payment standards as an examplei:
   barely anyone does anything for free                         “The CDC, the Centre for Disease Control, has
   anymore.” (Patient participant)                              a standard rate of honorariums and this is their
                                                                basic flat rate. It’s $25 an hour.”
Financial incentives were thought to be
particularly motivating for PWLEs, as one                       Provider participants generally agreed that cash
provider participant stated, “Because people that               honorariums should be offered as compensation
are in that situation don’t have a lot of money                 to patients participating in a medical respite
and that’s always a struggle.” Another provider                 research project.
participant described this in more detail:                         “People [who] work on the frontline in the
   “To be very honest, any sort of incentive-                      community, they get roughly $20 an hour. So,
   based participation always works well, just                     it’s kind of keeping them in line with that, and
   because the world of medical respite that                       just gives them a bit of incentive. I think it’s
   I’m sitting in—it is with a very marginalized                   really important that we value that their time
   population. So, there has been a lot of success                 is also important. So [whether] it’s an incentive
   with some of the programs that we’ve run                        or an honorarium or however we can do it, I
   where there’s gift cards for time, and any sort                 think it’s a win-win. We’re getting paid, why
   of food security. I know that’s not always the                  shouldn’t they?”
   best approach, sometimes that’s frowned
   upon, but really, I think we already ask a lot               Others, however, felt gift cards might be
   from this population in terms of trying to get               more appropriate than cash so that research
   ideas and information and try to find ways                   participants were restricted in how they could
   to help, but we also don’t recognize that                    spend the honorarium.
   sometimes they are not able to provide for                     “A lot of these people don’t have their own
   themselves…”                                                   money with them [in the hospital], so if we
                                                                  were to get them a gift card for our Tim
Because financial incentives can motivate                         Hortons, we know that the person is not using
a larger number of people to participate in                       cash to go either purchase alcohol or drugs
research than might otherwise, there were some                    or anything like that, they are using the money
considerations suggested about the amount                         specifically, it’s a gift card at Tim Hortons.”
of incentive individuals be given. One patient                    (Provider participant)
participant suggested, “I would say, depending
on what the research study is—if you’re looking                 Additional incentives that participants suggested
for real, down to earth information, I would go                 should be incorporated into research proposals
with the lower honorarium to bring in the people                include the provision of food and drinks and
that are going to do it for [the right motivations].”           reimbursement for transportation costs.
                                                                   “Money, I think, would be the best way. Maybe
In general, when patient participants were                         even bus passes, Compass cards so they can
asked to put a dollar value on their time, there                   get around. I’m sure some of them would feel
was some hesitation to do so. Several patient                      good about not having to get on the bus and
participants deferred to the opinion of the                        just say, can I get this ride for free.” (Patient
researcher or put a low dollar amount on                           participant)
their time, potentially as a result of historical

i See:
20         SFU Gerontology Research Centre

Data Collection
Patient and provider participants provided a                     Data collection should be culturally sensitive and
range of suggestions on what data to collect                     trauma-informed
for a program of research on medical respite                     Regardless of the data that would be collected,
(see Table 2), as well as ideas about the                        participants highlighted that the approach to
willingness of potential research participants to                collection should be culturally sensitive. While
share different types of data. Participants also                 patient participants mostly felt that there would
described other considerations to be mindful                     not be anything too personal to ask, they did
of during data collection, including where data                  indicate that other people may not agree. One
collection should take place, potential biases                   patient participant stated that no data would
and limitations, and privacy issues.                             be too intrusive to collect from her perspective,
                                                                 but this may be different for persons of other
        "If the question is worded correctly,                       “Not for me. When I initially was hospitalized,
     people would be more than willing to                           maybe there would have been a bit of
     tell you because someone is listening,                         embarrassment. I still would have shared.
       someone is expressing some sort of                           There would have been some embarrassment
                     caring, they’re going to                       about my situation and the situation that I
                                                                    found myself in, but…I do know that there
                           want to open up."                        were—at the time I was in the [name of] clinic
                                                                    and there were people of different cultures
Primary or Secondary Data?                                          there and they did not discuss certain things.
Participants were asked to report on any                            So I think it’s culturally sensitive.”
existing data they were aware of that could
be considered accessible for inclusion in a                      Among the data too personal to collect,
future program of research on medical respite.                   participants indicated that people might not
Though provider participants indicated that                      want to be asked questions about stigmatized
shelter providers track PWLE data in HIFIS [the                  topics (e.g., sex offenses) or topics that would
Homeless Individuals and Families Information                    be ‘triggering’ and remind people of past
System]ii or shelter log books; and healthcare                   experiences of trauma. Such reports relate to
providers track PWLE data in PARIS [the health                   the need for researchers to have empathy, be
information system for Vancouver Coastal Health                  responsive to participants’ past, and engage
Authority], Medi-tech [the electronic health                     with potential participants by building trust using
records for Fraser Health Authority], and iTracker               a trauma-informed lens. Patient participants
[a health surveillance system used in the Fraser                 suggested that “it probably comes down to how
Health Authority], these databases are not set                   [the questions are] framed” and “if the question
up to be compatible with one another. One                        is worded correctly, people would be more than
provider participant stated, “They’re completely                 willing to tell you because someone is listening,
separate systems.” Moreover, the administrative                  someone is expressing some sort of caring,
challenges involved in overcoming privacy                        they’re going to want to open up.” One patient
regulations were thought to create barriers                      participant indicated that if there is a question
to using these data. Instead, one provider                       someone does not want to answer, they will let
participant suggested that a project-specific                    the researcher know:
database would need to be created whereby                            “You should be able to ask anything you want
secondary data from various sources are entered                      and if the person doesn’t want to answer, they
and supplemented with primary data: “You need                        could say, ‘I’m not telling you.’ Some people
to establish your own measurement and your                           have a hard time doing that, but a lot of
own scales [for] what would be appropriate.”                         people don’t.”

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