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Abstract
Objectives This study aimed to explore informal rural caregivers’ perceived preparedness to detect and respond to the signs of worsening health conditions in patients recently discharged from hospital and at risk for readmission.
Design A qualitative descriptive design and semistructured interviews were used. Data were thematically analysed.
Setting Data collection occurred in 2018 and 2019 in rural communities in Southwestern and Northeastern Ontario, Canada.
Participants The study included sixteen informal caregivers who were all family members of a relative discharged from hospital at high risk for readmission following hospitalisation mostly for a medical illness (63%). Participants were mostly women (87.5%), living with their relative (62.5%) who was most often a parent (56.3%).
Results Three themes were identified: (1) warning signs and rural communities, (2) perceived preparedness, and (3) improving preparedness. The first theme elucidates informal caregivers’ view that they needed to be prepared because they were taking over care previously provided by hospital healthcare professionals yet lacked accessible medical help in rural communities. The second theme captures informal caregivers’ perceptions that they lacked knowledge of how to detect warning signs and how to respond to them appropriately. The last theme illuminates informal caregivers’ suggestions for improving preparation related to warning signs.
Conclusions Informal caregivers in rural communities were largely unprepared for detecting and responding to the signs of worsening health conditions for patients at high risk for hospital readmission. Healthcare professionals can anticipate that informal caregivers, particularly those whose relatives live far from medical help, need information on how to detect and respond to warning signs, and may prioritise their time to this aspect of postdischarge care for these caregivers.
- QUALITATIVE RESEARCH
- Health Equity
- Health Education
Data availability statement
No data are available. According to the guidelines of our hospital site’s Research Ethics Board, we are not permitted to post the study data for public consumption. Given that our sample was recruited from small towns and participants’ narratives may be recognisable to others even in deidentified data, we are also unable to share the data by request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
This study builds methodologically on broader, more exploratory work by illuminating informal caregivers’ experiences of a key aspect of preparation in detail using semistructured interviews.
The use of an established rurality index to determine participant eligibility facilitated the use of rurality as a demographic comparator throughout analysis thereby strengthening credibility of the findings and their applicability to the rural context.
The eligibility criterion of caring for a relative at risk for hospital readmission limits the transferability of the study findings beyond this caregiver population.
Introduction
Patients at risk for hospital readmission are typically older in age1 with serious comorbidities such as liver and kidney disease, heart failure, pulmonary disorders and/or diabetes.1–3 These patients are increasingly discharged home ‘sicker and quicker’4 5 with high care needs.6 7 Consequently, informal caregivers such as their friends and families often play a key role in providing postdischarge care to these patients.8 A critical aspect of postdischarge care is identifying the signs of worsening health conditions and determining what to do9 10 yet, few studies have examined caregivers’ perspectives of their preparedness to do so.
The literature on caregiver preparedness has overwhelmingly focused on preparedness for the caregiving role in general8 11 12 or preparedness for supporting patients’ physical needs.13–16 Only a few studies have reported on the experiences of caregivers pertaining to warning signs. For example, one study reported that caregivers of patients with mild stroke worried about not recognising the signs of a new stroke.17 In studies of caregivers of adult orthotrauma and transplant patients and critically ill children, caregivers reported needing information on warning signs.18 19 However, the studies only touched on these findings incidentally and did not explicitly explore this aspect of postdischarge care in detail, supporting the need for further research in the area.
Perhaps most importantly, there is a lack of research on this topic in rural communities. We found only one study focused on rural caregivers; in that study, caregivers’ inability to assess warning signs was the main barrier to their perceived competence as caregivers20 but the study was not restricted to the postdischarge period and was conducted in Thailand limiting its applicability to the postdischarge period in rural North America.
In rural North America, patients tend to have limited access to professional support services because of inadequate health system infrastructure and human health resources, and barriers related to distance and widely dispersed patient populations.21–23 Yet evidence suggests that rural patients experience significantly higher emergency room (ER) visits and hospital readmissions than their urban counterparts. For example, one study found that, during the 30-day postdischarge period, almost 60% of rural patients visit the ER for a non-urgent health problem and up to 59% of their hospital readmissions are preventable.24 The lack of research on caregiver preparedness for identifying and responding to warning signs in rural communities is highly problematic because nowhere is the role of caregivers more integral to patients’ postdischarge care. Rural caregivers typically care for a relative who is older in age with multiple comorbidities,25 which are major risk factors for hospital readmission.2 Furthermore, although patients play a key role in communicating warning signs to healthcare professionals, older patients tend to have atypical illness presentations, which may manifest as reduced cognition26 and undermine their ability to do so independently. Many older patients, thus, rely on their caregivers to relay indicators of declining health to healthcare professionals.
In short, understanding rural caregivers’ perceived preparedness to detect and respond to warning signs is fundamental to knowing how to help them manage this critical aspect of postdischarge care. Accordingly, this study aimed to address this knowledge gap.
Research questions
What are rural caregivers’ perspectives on their preparedness to detect and respond to the warning signs of worsening health conditions in a relative at risk for hospital readmission?
How can caregiver preparation to detect and respond to warning signs be optimised?
Methods
Study design
This study was part of a larger project on caregiver preparedness for multiple aspects of postdischarge care.27 We used a qualitative descriptive design which aims to capture the key elements of social phenomena in the terms of the actors involved28 and thus provides a useful approach to explore poorly understood phenomena, such as caregivers’ preparedness for warning signs.
The purposeful sample of rural caregivers targeted: English-speaking and reading adults aged 18+, who were a relative, friend or neighbour and the unpaid, primary caregiver of an adult who was admitted to hospital for a medical illness or surgical procedure, discharged home to a rural community, and at risk for hospital readmission. Caregivers of patients transferred to rehabilitation services or receiving rehabilitation, palliative, long-term or alternate levels of care (ie, no longer in need of acute care) were excluded.
Recruitment involved both passive and active strategies. Passive strategies included circulating a flyer advertising the study via email and posting it in settings where potential participants were likely to see it (eg, bulletin boards in public libraries, community centres, pharmacies and healthcare institutions) in rural Southwestern and Northeastern Ontario. Potential participants contacted, via email or telephone, the research associate (RA) who answered any questions and screened them for eligibility. Active strategies included having nurse research assistants liaise with staff nurses and discharge planners to identify caregivers meeting the study eligibility criteria. Eligible, consenting participants were enrolled in the study. Participants received a CAD$75 honorarium in the form of a gift card in appreciation for their time. All data were collected within 30 days following caregivers’ relatives’ hospital discharge because 30 days is the conventional quality metric for patients discharged from hospital.29
The sampling plan targeted 8–12 caregivers per region (for a total of 16–24 caregivers) until informational saturation was reached (ie, the point at which data became redundant and interviews no longer yielded new codes or categories). Both authors (MTF and JIB) independently determined that saturation was achieved with 16 caregivers by reviewing and analysing the transcripts as interviews were conducted.
Data collection
Data collection occurred in 2018 and 2019 and involved screening and sociodemographic measures and semistructured qualitative interviews which were pilot tested for clarity and comprehension.
Screening and sociodemographic measures: To determine if participants were caring for a relative at risk for hospital readmission, the LACE index was used. The index employs four variables to predict risk for hospital readmission during the 30-day postdischarge period: length of hospital stay (L), acuity of hospital admission (A), comorbidities (C) and ER visits in the 6 months before admission (E).3 Data for the LACE were obtained through report from caregivers recruited via study flyers and through extraction from the medical record for caregivers recruited at hospitals. LACE indices between 5 and 9 indicate moderate risk of hospital readmission whereas indices >9 indicate high risk.3 The quality of the psychometric properties of the LACE are reported elsewhere.30
To determine if caregivers were caring for a relative living in a rural community, the Rurality Index of Ontario—a census-based metric, derived from population size and travel time to nearest healthcare centres31—was employed. Scores were obtained by entering the relative’s postal code into an online calculator; >40 indicates that the person lives in a rural community and higher indices indicate higher rurality.32 Other eligibility criteria (eg, age) were screened with standard self-report measures as were caregivers’ sociodemographic profile (eg, education).
Qualitative interviews: one-to-one interviews were conducted by the study RA (JIB), a doctorally prepared man with extensive qualitative research and interviewing experience who had no prior or existing relationship with participants. The RA informed participants that the interviews were being conducted to better understand their experiences and to inform initiatives to help prepare caregivers of a relative returning home after a hospital stay.
A semistructured interview guide (online supplemental appendix A) was used to capture participants’ perspectives on both their perceived level of preparedness for their relative’s postdischarge care with respect to warning signs as well as the process of preparation in which they were engaged. Participants were asked to think back to their recent experience of transitioning from the hospital to home and describe the preparation they had received for their relative’s care and if/how they could have been better prepared. To mitigate geographical distances in rural communities, interviews were conducted remotely via telephone. Only the interviewer and participant were present during the interviews, which lasted between 19 and 78 min and were audiorecorded and professionally transcribed verbatim. Fieldnotes were also recorded by the RA. Participants were offered the option to conduct the interview in two sessions and three participants elected to do so. Participants were also invited to follow up with the RA if ideas came to mind after the interview, but none did so.
Supplemental material
Data analysis
Descriptive statistics summarised participants’ average standing on the screening and sociodemographic measures. Thematic analysis of the interview transcripts was conducted concurrently with data collection and involved developing preliminary inductive codes and synthesising them into interpretive, hierarchically organised categories and subcategories.33 Definitions were developed for each code, category and subcategory and their interconnections documented; exemplars for each were identified. Codes and categories were then collapsed into unifying themes. To help contextualise the thematic analysis, conceptually clustered matrices were used to map out participants’ demographic characteristics (eg, rurality indices) and the key features of participants’ narratives (eg, perceived preparedness, opinions on preparation received). This approach helped us to search for trends in participants’ narratives; we report all identified trends. We also accounted for negative cases to ensure that we did not assert informational saturation prematurely. To reduce burden, transcripts were not returned to participants and we did not engage in participant checking of the findings, but other strategies for trustworthiness were employed throughout the study (table 1).34
Strategies used for trustworthiness
Patient and public involvement
Members of the public contributed to the development of the research idea via telephone and teleconference engagement activities conducted by MTF. The larger project, from which this study evolved, included a patient and family representative, a nurse and two healthcare administrators who live and/or work rural communities in Ontario. They contributed to the proposal by sharing their experiences validating the need to focus on family and other informal caregivers surrounding postdischarge care in rural communities.
Findings
Sample
In total, 56 caregivers were interested in the study and contacted, or were contacted by, the RA, but 6 declined to participate. The RA screened 50 caregivers; 22 did not meet the eligibility criteria. The remaining 28 caregivers consented to participate in the study but 2 became ineligible because their relative’s status had changed, 3 explicitly withdrew because of competing demands and 7 implicitly withdrew when they did not respond to requests to schedule an interview. The final sample size was 16.
Participants were mostly women (n=14; 87.5%) with a median age of 49 years (range 26–67). All identified their ethnicity as white. Most were married or common law, had a college diploma, trades certificate or apprenticeship as their highest level of education, were employed full-time outside of the home, and reported coping on their present income (table 2).
Participant sociodemographic characteristics
All participants were family members of the person to whom they were providing care which was most often a parent (n=9; 56.3%). Most participants were living with their relative (n=10; 62.5%) who had a median age of 69 years (range 20–87) and lived in an area with a median rurality index of 50 (range 41–89). Most participants were caring for a relative who had been admitted to hospital through the ER (n=15; 93.8%) for a medical illness (n=12; 63%), was discharged after having been in hospital for a median of 8 days (range 2–19 days) with high risk for hospital readmission, indicated by a mean LACE index of 10.9 (±2.7).
Qualitative findings
Participants narratives revealed three related themes. Below, we present each theme in turn.
Theme 1: warning signs and rural communities
Participants’ narratives highlighted that they were keenly aware of the importance of them being able to identify and respond to warning signs because they viewed themselves as ‘taking over’ the care previously provided by healthcare professionals in hospital. As FC7 asserted, ‘I essentially had to become the nurse when he [FC7’s father] left the hospital’.
Also, participants knew their access to healthcare resources and support once home would be limited. As FC3 put it, ‘when you leave the hospital, you’re on your own.’ FC8 explained that ‘they [nurses] won’t travel and if they do it’s once every three months…we can’t get home care out here, we live in the bush’ and as a result was conscious of the need to be prepared. Participants whose relatives were residing in highly remote areas (ie, had higher rurality indices) expressed feeling particularly wary about being unprepared to detect and respond to warning signs because they were so far from medical help. FC5 recounted:
rurality definitely is a big thing. And you know, all of his [FC5’s father] specialists are in Ottawa, because like I said, that’s three and a half hours away for us.
Consequently, they described the first few weeks after their relative’s discharge as extremely stressful and overwhelming, and recalled feeling ‘uncertain’, ‘nervous’, and ‘worried’ about the precariousness of their relative’s ‘health and what to do…if it declines’.
Theme 2: perceived preparedness
Most participants underscored their inability to judge whether changes in their relative’s health conditions were ‘normal’ or cause for concern. Participants described being unknowledgeable about the signs indicating that their relative’s health may be worsening and hence struggled to interpret and respond to changes in their relative’s health conditions.
Detecting warning signs
In terms of lacking knowledge, participants were deeply concerned that they did not know the actual warning signs specific to their relative’s health conditions that they needed to monitor and described receiving minimal preparation in hospital or at home in this regard. FC15, for instance, recalled that ‘in hospital there was nothing given to her [FC15’s mother] or me about what to monitor after discharge…there really wasn’t any information given in terms of what to look for—for improvement or deterioration.’ Consequently, caregivers were unsure of how to understand changes in their relative’s conditions or determine the significance of these changes. For example, when confronted with confusion in her husband, FC4 felt lost about how to interpret what she was seeing. She conveyed frustration that she could not make sense of her husband’s sudden change in behaviour and what this change might mean: ‘like why are you [husband] acting like this?…What’s going on? I can’t figure this out.’ She noted that ‘it’s hard to recognize some of these warning signs…that’s one thing I find hard and not really exactly prepared for.’
Similarly, FC7, explained that she found it disconcerting that she was unaware of ‘what could happen’ with her husband’s condition and what specific issues she should be vigilant in monitoring.
FC14 likewise explained that:
nobody said to me, for instance, [watch for] water in my mum’s heart … if somebody would have given me more clear a picture of what to expect, I think I would know better instead of making my own assumptions, right? Considering that she has a little water on her heart and her lung, and the aneurism, you would think that they would say ‘hey, here’s some really good indicators that she needs to come back [for]’, and they didn't.
Responding to warning signs
Poor preparation on detecting warning signs left caregivers uncertain of how to respond to changes that may signify deterioration in their relative’s health conditions. As FC10 bluntly conveyed she did not know the steps to take ‘if something goes wrong’. FC8 conceded that ‘I do the best I can but I'm not 100% certain if I'm doing what I'm supposed to be doing or if I'm, because, again, I don’t have the training. I don’t have what I should have’ regarding warning signs and was fearful about potentially mismanaging his mother’s health condition. Without such knowledge, many struggled to respond appropriately to changes in their relative’s health and determine the level of urgency required.
Those who were unsure if it was safe to wait for their relative’s next scheduled medical appointment attempted to reach out to their primary care provider but found them to be difficult to access in a timely way, and had no choice but to go the ER. WF10 explained:
You could never get a hold of him [family physician]. You can phone up to the office, but…You’d never get in…Try to get in or whatever, and they usually tell you, go to—take him to Emerg [ER].
FF9 similarly noted:
there’s been no help for my mom…If I have an emergency with her now, I have no choice but to either call 911 or take her to Emerg [ER]. I cannot get in to see her family doctor except for once every three months and that’s only to refill her prescriptions.
FF9 went on to explain that he had tried getting guidance from Ontario Telehealth, a public telephone helpline that connects patients and caregivers with nurses to answer health questions, but found that ‘when you’re calling somebody [who doesn’t know you], they don’t always get the gist of what the medical issue is’ and he did not see this as helpful in navigating the potential warning signs in his mother.
Theme 3: improving preparedness
Against this backdrop, participants described the type of preparation they would ideally have received on how to identify and respond to warning signs. For example, FC5 suggested she would have liked more ‘predischarge education and what might be expected at home…realistic views of what you might see, look for; a little more teaching and what a person might look for after something like that…with a surgery to that degree.’ FC7 recommended that healthcare professionals tell caregivers, ‘This is what you can kind of expect when you get home. This is what you can look out for… here’s what could happen, here’s what you do if this happens’. FC11 similarly asserted that she would have benefited from healthcare professionals letting her:
Know more of the things that I should be looking for to indicate whether he’s [FC11’s husband] getting worse or getting better, or just, this is the way it’s supposed to be [it is normal].
Once home, caregivers wanted access to medical help during the postdischarge period from someone familiar with their relative’s medical history. For instance, FC4, whose relative’s risk for readmission was among the highest in our sample and had made seven ER visits in the previous 6 months, wanted quick access to support, rather than waiting weeks for the next scheduled medical appointment. She explained that she did not want to bring her husband to the ER but, rather, wanted someone to either validate her interpretations and her planned course of action or to correct her if she had missed something important. She noted that ‘I need to have a second opinion if I am on the right track.’ She described a program that had previously provided her with support in managing her husband’s chronic obstructive pulmonary disease (COPD) and now wanted something similar to help her manage her husband’s cancer:
We were on the COPD programme that was offered by Ontario Health. And just being able to call and talk to that nurse who was familiar with my husband and having an unbiased talk with her. And she would help me. You know, well, ‘you should be bringing him in, and you should be telling the doctors, the emergency crew this.’ Having someone like that I found very helpful…just being able to call and talk to someone who was familiar with my husband and could guide me along the way and see what symptoms I’m overlooking.
In summary, participants recognised that they would not have easy access to medical help once home and were conscious of their need to be able to identify and respond to warning signs. Yet, most participants stressed they lacked the knowledge to do so. Participants explained that, ideally, they would have received more preparation on how to identify and respond to warning signs starting in hospital and receive follow-up once home from someone familiar with their relative’s medical history.
Discussion
This study adds to the limited research on rural caregivers’ preparedness for the postdischarge care of patients at risk for hospital readmission, for whom knowledge of warning signs is particularly imperative. Consequently, the study findings shed much-needed light on caregiver preparedness for this aspect of postdischarge care in rural communities, which has been neglected in prior research. We identified three themes capturing caregivers’ perspectives on their preparedness for identifying and responding to warning signs.
The first theme underscores the urgent need for caregiver preparedness in this aspect of postdischarge care in rural communities. Caregivers’ narratives revealed that they expected to take over the care that had previously been provided in hospital by healthcare professionals and, because of the limited access to healthcare resources and support in rural communities, were cognizant of the importance of being able to competently identify and respond to warning signs. Our use of an established rurality index to put participants’ narratives in context revealed a pattern that has not previously been documented—caregivers of a relative with a high rurality index expressed feeling less prepared for identifying and responding to warning signs than those with lower indices.
As we seek to explain this finding, we propose that caregivers of relatives with high rurality indices were conscious that timely access to medical help was likely to be limited once home and thus had higher expectations for their preparedness. That the lack of access to healthcare professionals was a concern for caregivers is understandable given the stark realities of healthcare in rural communities where deaths from preventable and treatable health conditions are substantially higher in remote areas than those that are easily accessible (even when studies controlled for age, level of education and income).35
The second theme captures the ways in which caregivers perceived they lacked knowledge of warning signs—knowing and recognising the signs and symptoms indicating their relative’s health conditions may be worsening, interpreting if changes in their relative’s health conditions are indeed warning signs or not, and determining how to respond and the urgency of response required. Although we were unable to find published data pertaining to caregivers, insufficient knowledge regarding warning signs is an issue for many patients after discharge. Studies estimate that 41%–50% of patients discharged from hospital are unaware of the signs indicating their health conditions may be worsening36 37; it is likely that caregivers are equally unaware. Yet, awareness of warning signs is considered a key aspect of preparedness for managing postdischarge care10 and evidence suggests that it is closely tied to hospital readmission. A recent study, for instance, found that compared with medical patients who knew the warning signs to monitor after hospital discharge, those who did not know the signs were almost 3.5 times significantly more likely to visit the ER or be readmitted to hospital.9 However, that same study found that other aspects of preparedness (eg, managing medications) and overall preparedness for postdischarge care did not predict ER visits or hospital readmission.9 Despite this prior research, our study findings suggest that there appears to be a fundamental gap with respect to preparing caregivers for this critical aspect of postdischarge care.
Finally, the third theme highlights how rural caregiver preparation for identifying and responding to warning signs can be optimised. Participants in our study welcomed the opportunity to learn about this aspect of postdischarge care. Consequently, healthcare professionals can anticipate that caregivers will be amenable to learning about the warning signs relevant to their relative’s health conditions. Participants in our study wanted to receive such preparation before hospital discharge. Consequently, preparation should begin in hospital and include what to expect once home, particularly regarding what is ‘normal’ or typical and what is not, what could possibly go wrong, as well as what to monitor and, if a warning sign is observed, what to do about it. This recommendation is supported by prior research in paediatric settings, which found that in-hospital education predicted parents’ preparedness for their child’s postdischarge care.38 39 Healthcare professionals can also anticipate that caregivers, particularly those whose relatives live far from medical help, need information pertaining to warning signs, and may allocate more time to preparing these caregivers on this aspect of postdischarge care.
There is a growing recognition of the importance of educating caregivers in hospital on postdischarge care. For example, in the USA, most states have adopted the Caregiver Advise, Record, Enable Act which formally requires hospital healthcare professionals to prepare family caregivers in providing postdischarge care.40 The fact that there is no comparable legislation in Canada is concerning given the move to decrease hospital lengths of stay.41 Our findings reinforce that educating caregivers regarding warning signs and ensuring that this education is part of postdischarge care instructions are highly needed.
Following discharge, caregivers wanted timely access to professional support given their difficulties in securing an impromptu medical appointment. They also wanted support from a healthcare professional familiar with their relative’s care to either validate their interpretation of changes in their relative’s health conditions, to corroborate their actions in responding to a potential warning sign or to correct them if they had missed something important or had taken the wrong course of action. For such caregivers, telephone follow-up from a nurse familiar with the patient’s situation may be a viable alternative to home or outpatient follow-up. Prior research has found telephone follow-up on warning signs, as part of a multicomponent postdischarge intervention, to be effective in reducing rural hospital readmissions42 43 and has been successfully implemented by hospital nurses,44 highlighting its potential for wider scalability.
Equipping caregivers with the knowledge to identify and respond to warning signs may allow them to seek timely professional help and early treatment for their relative to prevent complications and death,45 as well as increase caregivers’ sense of competence. Enhancing caregivers’ ability and competence can also potentially decrease their worry, which was evident in participants’ narratives. Better preparation also has the potential to decrease caregivers’ chances of overestimating the severity of a change in their relative’s health conditions thereby preventing unnecessary trips to the ER,9 which was a source of stress due to the extensive travel involved.
Future research in rural communities is needed to validate the findings of this study as well as to explore the perspectives of patients and healthcare professionals on preparation for identifying and responding to warning signs. Additionally, our findings suggest that quantitatively examining the relationship between perceived warning signs preparation and level of rurality is a viable and important avenue for future research. Future research may also assess caregivers’ knowledge of the specific warning signs pertaining to their relative’s health conditions.
Limitations
This study was conducted in two rural regions of Ontario, Canada, which may limit the transferability of the findings to other rural regions. The eligibility criterion of caring for a relative at risk for hospital readmission limits the transferability of the study findings to caregivers of this patient population. Also, all participants were family members of a recently discharged patient. Consequently, the findings may not capture the full range of informal caregivers’ perspectives such as those of neighbours and friends. Additionally, given that the sample identified as white, it may not be representative of the full diversity of caregivers in rural Northeastern and Southwestern Ontario.
Conclusions
This study identified that rural caregivers of predominantly medical patients at high risk of hospital readmission are largely unprepared in detecting and responding to warning signs. Given that caregivers play a pivotal role in rural healthcare, it is extremely troubling that they report being poorly prepared. The discharge home from hospital marks a particularly pronounced shift from healthcare professional-driven to family-managed care in rural communities. Our findings, thus, foreground the precarity of the transition home for many caregivers and their relatives. Healthcare professionals can anticipate that caregivers, particularly those whose relatives live far from medical help, need information on warning signs, and may prioritise their time to this aspect of postdischarge care for caregivers of a relative living in a remote area with limited access to healthcare professional follow-up.
Data availability statement
No data are available. According to the guidelines of our hospital site’s Research Ethics Board, we are not permitted to post the study data for public consumption. Given that our sample was recruited from small towns and participants’ narratives may be recognisable to others even in deidentified data, we are also unable to share the data by request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and ethics approval was obtained from the Office of Research Ethics at York University, Certificate#: e2018-014, and from the Research Ethics Office at Health Sciences North, Project# 18-053. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We thank the family caregivers for sharing their experiences with us, our research sites for facilitating recruitment and undergraduate nursing student research assistants, Shannon Gordon and Naomi Zehdee, for their editorial feedback on an earlier draft of this manuscript.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors MTF conceived the study and MTF and JIB designed the study. Data collection was performed by JIB, and analysis by MTF and JIB. Both authors drafted and revised the manuscript and approved the final version. MTF is responsible as the guanrantor for the study. Both authors agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Funding This work is supported by the Ontario Ministry of Health and Long-Term Care, Health System Research Fund, Grant No. 484, and York University Faculty Association Leave Fellowship. The Ontario Ministry of Health and Long-Term Care and York University Faculty Association had no role in the design of the study or in the writing of this manuscript.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.