DETERMINING THE FEASIBILITY OF A MEDICAL RESPITE - HOMELESS PATIENTS IN METRO VANCOUVER - BC SUPPORT Unit
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DETERMINING THE FEASIBILITY OF A MEDICAL RESPITE INTERVENTION STUDY FOR OLDER HOMELESS PATIENTS IN METRO VANCOUVER
Acknowledgements 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 University. Report designed by Joe Humphries
Contents
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
Background
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
population.
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
Methods
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.
Recruitment
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
Findings
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 andSFU 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 mySFU 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)
face…”
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. I14 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
participant)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 potential18 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 moneySFU 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: http://www.bccdc.ca/resource-gallery/Documents/Educational%20Materials/Epid/Other/peer_payment-guide_2018.pdf20 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
cultures:
"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.”
ii https://www.canada.ca/en/employment-social-development/programs/communities/homelessness/nhis/hifis.htmlYou can also read
