Annals of the American Thoracic Society

Rationale: Several studies have explored the experiences of ventilator-assisted individuals living at home with family caregivers. However, few explore the experiences of these individuals as they transition from a hospital setting to living at home with a view to identifying modifiable processes that could optimize transition.

Objectives: This descriptive, qualitative study sought to elucidate barriers to, and facilitators of, transition to home mechanical ventilation from the perspective of Canadian ventilator-assisted individuals and their family caregivers.

Methods: Participant recruitment occurred through hospital and community respiratory clinicians based in the four Canadian provinces of Alberta, British Columbia, Ontario, and Saskatchewan. Semistructured telephone or face-to-face interviews at home were undertaken with 33 individuals, including 19 ventilator-assisted individuals and 14 family caregivers, after 3 to 24 months of transitioning to home mechanical ventilation. Interview data were analyzed by content analysis.

Results: Formal teaching of knowledge and skills relevant to home mechanical ventilation within the hospital setting before transition was perceived as having an immediate and enduring positive impact on transition. However, family–clinician conflict, information gaps, and persistent lack of trained personal support workers to provide care in the home contributed to maladjustment relating to transition. Participants strongly recommended improved transitional care in the form of respiratory health professional telephone support, home outreach, and training of personal support workers.

Conclusions: Transition to home mechanical ventilation is a complex and demanding process. Extended home mechanical ventilation training and support may be helpful in mediating adjustment challenges, thus reducing stress and caregiver burden, and improving health-related quality of life for ventilator-assisted individuals and family caregivers.

Home mechanical ventilation is a viable and effective means of supporting individuals experiencing chronic respiratory failure (1). Delivered invasively via a tracheostomy or noninvasively by a mask, nasal pillows, or mouthpiece, home mechanical ventilation enables individuals with complex medical conditions to live with greater autonomy in the community (2). Improvements in ventilator technology have resulted in smaller, portable ventilators, further enhancing the mobility and independence of ventilator-assisted individuals. Home mechanical ventilation confers other important benefits including prolonged survival, decreased hospitalization, reduced symptom burden, and a favorable impact on health-related quality of life (3, 4).

Increasing transition of ventilator-assisted individuals from hospital to home mechanical ventilation is credited to a number of factors including increased survival of the critically ill, an aging population, and the obesity epidemic (5, 6). Although prevalence patterns vary (3, 710), reports demonstrate exponential growth of home mechanical ventilation among patients with neuromuscular conditions, parenchymal lung disease, sleep-disordered breathing, and chest wall deformities (4, 11). Individuals who require ventilation in the long term are high-cost users of acute health care services; therefore appropriate timing and optimization of home mechanical ventilation transitional processes is an imperative (12). As well, planned transition may improve the health-related quality of life of ventilator-assisted individuals, enable independent management of home mechanical ventilation, prevent hospital readmission, and reduce costs of health care services (13).

One criticism of the health transition literature in populations experiencing chronic health conditions is its narrow focus on patient and caregiver education for transition readiness (14, 15). Understandably, education alone cannot account for the social and environmental challenges faced by ventilator-assisted individuals and their caregivers. Modifiable transitional processes may be viewed through an ecological framework; a perspective that attends to the dynamic interplay among individual factors (e.g., knowledge, health status, beliefs/expectations, and skills), social factors (e.g., relationships and psychosocial issues), and environmental factors (e.g., access to services, home functionality, community participation, and policy) (16).

Although several studies have explored the experience of ventilator-assisted individuals living at home (1719) and their caregivers (20, 21), particularly in terms of health-related quality of life (2224), few studies have explored transitional experiences of these individuals with a view to identifying modifiable processes that could optimize transition. Therefore, using an ecological framework, we sought to elucidate issues associated with transition to home mechanical ventilation including the barriers to, and facilitators for, transition to home from the perspective of Canadian ventilator-assisted individuals and their family caregivers.

Study Design

We conducted a descriptive, qualitative study using semistructured individual and ventilator-assisted individual–family caregiver dyad interviews.

Sample and Sampling Strategy

Eligible participants were those ventilator-assisted individuals requiring tracheostomy or noninvasive ventilation for at least 6 hours a day on a presumed indefinite basis and having experienced one of the following transitions within the last 2 years:

1.

New transition to ventilation at home without admission to an acute care setting

2.

Transition in the mode of ventilation required (e.g., noninvasive to invasive ventilation)

3.

Transition from ventilation in an acute care setting to ventilation at home

Caregiver participants were defined as the family member or friend responsible for providing and/or coordinating the ventilator-assisted individual’s care without financial compensation. Both ventilator-assisted individual and caregiver participants were eligible if at least 16 years old and able to read and speak English. Exclusion criteria for ventilator-assisted individuals included a primary diagnosis of obstructive sleep apnea requiring continuous positive airway pressure therapy or home oxygen only. There were no exclusion criteria for family caregivers.

Ventilator-assisted individuals and family caregivers were recruited through the Home Ventilation Program at West Park Healthcare Centre (York, ON, Canada), the Provincial Respiratory Outreach Program (Vancouver, BC, Canada), Wascana Rehabilitation Centre (Regina, SK, Canada), and the Calgary Zone Chronic Ventilator Program of the Peter Lougheed Centre (Calgary, AB, Canada). Clinical staff within these organizations provided study information to eligible participants who had experienced transition, and informed consent was obtained before study participation by research staff. Consent was reached for 60% of eligible individuals; insufficient time was the most common reason for nonparticipation.

Data Collection

We developed an interview guide to address our study objectives, that is, identifying and exploring barriers to and facilitators for transition from the perspective of ventilator-assisted individuals and their family caregivers. We piloted interview guides with two participants (one home visit and one telephone interview) to assess for unanticipated issues, and to provide an opportunity for revision. We sent the appropriate guide (ventilator-assisted individual or caregiver) in advance to enable participants to consider their responses before the interview (Table 1). Interviews were scheduled and conducted by one of two interviewers (C.M.D., J.K.) either in the home or over the phone, based on participants’ preference. Both interviewers were experts in mechanical ventilation and had no prior relationship with participants. All interviews were audio-recorded and transcribed verbatim.

Table 1. Ventilator-assisted individual and family caregiver interview guide

 Question
1.Can we start with your story of transitioning or moving from receiving ventilation in the hospital (or other setting) to ventilation at home?
• What was the experience like?
• What did you expect?
• What was surprising?
2.What were the positive aspects of this transition?
3.What were the negative aspects of this experience?
4.Do you think transitioning from hospital to home occurred at a pace that was good for you?
5.Did you experience transition delays related to funding, equipment, social support, or home care personnel?
6.Tell me about the information and support you received to help you go through this transition.
7.Looking back, what information or support do you think would have been helpful that you did not receive?
8.What information would you give to other people/families before transition home?
9.Tell me about your day-to-day experience living with support from a ventilator.
10.Tell me about the resources you need on a day-to-day basis with home ventilation.
11.How can the health care system better support individuals and families transitioning home with a ventilator?
Data Analysis

Transcribed interviews were analyzed by deductive content analysis methods (25) and by application of the ecological framework (Schwartz et al. [16]) comprising validated domains relevant to health service transition for young adults with complex chronic health care conditions. Two researchers (C.M.D., L.R.) independently coded interview text with NVivo 11 software (QRS International), using the applied ecological domains, and met to establish definitional agreement. This qualitative step of analysis included the formulation of instructions for the coders to achieve a coordinated assignment of category labels to interview text (26).

Several steps were taken to ensure credibility of the results. Participation of two authors (C.M.D. and L.R.) throughout all phases of data analysis was employed to ensure prolonged engagement. Team meetings occurred at regular intervals to discuss sequential interviews, segmenting of data into ecological categories, and the content of reflexive interviewer memos. Dependability and confirmability were addressed by a third analyst (S.C.) who independently evaluated correspondence between identified ecological categories, definitions, and coded text (27).

Ethical Considerations

Approval for study conduct was obtained from the research ethics boards of the University of Toronto, the University of British Columbia, the University of Saskatchewan, the University of Regina and Regina Qu’Appelle Health Region, and the University of Calgary. Participation was voluntary and all participants provided written consent.

Semistructured telephone (80%) or home (20%) interviews were undertaken with 33 individuals including 19 ventilator-assisted individuals and 14 family caregivers who had experienced transition in the previous 3–24 months. In 10 cases, we interviewed ventilator-assisted individuals alongside their caregiver; four other caregivers were interviewed independently. Mean interview length was 54 minutes (range, 24–106 min).

Ventilator-assisted individuals were more commonly male (58%) with a mean age of 55 years (range, 21–77 yr). More than 50% of ventilator-assisted individuals required home mechanical ventilation via a tracheostomy, with 40% needing continuous (24 h) ventilation (Table 2). All participating caregivers were female (100%); most were spouses (74%). Only one family caregiver had a health professional background.

Table 2. Characteristics of ventilator-assisted individuals

ParticipantAge (yr)SexPrimary DiagnosisInvasive/Noninvasive Ventilation*Full- or Part-Time VentilationCaregiver Interview
VAI 161FemalePostpolio syndromeNoninvasivePart timeNo
VAI 255MaleSpinal cord injuryInvasivePart timeYes
VAI 369MaleSleep apneaNoninvasivePart timeNo
VAI 477MaleAmyotrophic lateral sclerosisInvasiveFull timeYes
VAI 570MaleAmyotrophic lateral sclerosisInvasiveFull timeYes
VAI 664FemaleChronic obstructive pulmonary diseaseNoninvasivePart timeYes
VAI 762MaleHypoventilation syndromeNoninvasivePart timeNo
VAI 868FemaleHypoventilation syndromeNoninvasivePart timeYes
VAI 934FemaleNeuromuscular diseaseNoninvasivePart timeYes
VAI 1062MaleHypoventilation syndromeNoninvasivePart timeYes
VAI 1127FemaleStrokeNoninvasivePart timeYes
VAI 1270MaleEmphysemaNoninvasivePart timeYes
VAI 1325MaleMuscular dystrophyInvasivePart timeYes
VAI 1475MaleNeuromuscular diseaseInvasivePart timeYes
VAI 1528FemaleNeuromuscular diseaseInvasiveFull timeNo
VAI 1660MaleRestrictive lung diseaseInvasivePart timeYes
VAI 1756FemaleNeuromuscular diseaseInvasivePart timeNo
VAI 1859MaleNeuromuscular diseaseInvasivePart timeYes
VAI 1921FemaleSpinal cord injuryInvasiveFull timeYes

Definition of abbreviation: VAI = ventilator-assisted individual.

*Invasive, tracheostomy interface; noninvasive, mask interface.

We present some of the main results organized as facilitator and barrier themes with subsections attending to ecological transition domains including individual knowledge and skill, social relations, and environmental resources (Table 3).

Table 3. Facilitators and barriers to home mechanical ventilation identified by ventilator-assisted individuals and their caregivers

FacilitatorCodeDefinitionVAIFamily Caregiver
Individual knowledge and skillHealth statusOngoing disease or treatment stability; health risks; physical function“Now I have a lot more energy and as I like to say I have a life. Where before all I wanted to do was sleep.” (VAI 3)“Her health, I mean, they were all shocked that she was doing as well.” (Caregiver 8)
KnowledgeKnowledge related to disease, medical technology, and transition“I have a science background; a science degree. So, for me it wasn’t complicated [to understand the ventilator].” (VAI 15)“I understand fully what they, what they were trying to teach me about the vent.” (Caregiver 11)
Beliefs/expectationsBeliefs related to the transition process and professional health services“I did not have any expectations. I’m just using it at night. I didn’t think it was a big deal.” (VAI 13)“We didn’t expect anything different except for the fact that her mobility was more limited.” (Caregiver 19)
Skills/self-efficacySkills related to managing personal health; technology; transition“Now I can do all of my own suctioning. The RT taught me.” (VAI 18)“My nursing background enabled me to know what to do.” (Caregiver 10)
Social relationsRelationshipsRelations with family members, care providers, and community in terms of supporting health“The hospital [RT] came a couple of times to my house, checking things out, looking if the [ventilator] setting is still okay.” (VAI 11)“My daughter came down the day that he came home and spent a week with us to help us with the transition.” (Caregiver 2)
PsychosocialPsychological conditions; emotion strain related to the transition process“I am learning to remain calm.” (VAI 17)“It is good to have medical and social support.” (Caregiver 19)
EnvironmentalAccessAccess to: health services; funding and information for transition“The actual ventilator equipment was provided very, very quickly and early.” (VAI 1)“They got us a backup battery in case the power went out.” (Caregiver 14)
HomeFunctionality of home environment for technology and health care“That Mom and Dad were prepared to do renovations allowed me to come home.” (VAI 19)“Our daughter and son-in-law set up the house for him to come home.” (Caregiver 5)
CommunityAbility to travel outside the home; community participation“We walk in the mall, which is about a half-hour walk. And we walk around the neighborhood.” (VAI 4)“We have a van that’s an accessible van with a ramp. So we just roll it in and go.” (Caregiver 11)
BarrierCodeDefinitionVAIFamily Caregiver
Individual knowledge and skillKnowledgeKnowledge related to disease, medical technology and transition“They gave me the [ventilator] manual. Unless you have the medical training you wouldn’t know what they’re meaning.” (VAI 19)“A lot of them will say to me, ‘Are you a nurse?’ and I’m like ‘No!’ But I have to know this stuff you know.” (Caregiver 4)
Social relationsRelationshipsRelations with family members, care providers and community in terms of supporting health“Right now Mom and Dad are for pretty much 20 hours of the day the primary caregivers.” (VAI 18)“They think either he’s being abused or they think the setup is not adequate or maybe he should be in a home somewhere.” (Caregiver 2)
PsychosocialPsychological conditions; emotion strain related to the transition process“It’s the mental part that really scared me.” (VAI 1)“So as far as the mental health end of it, there is no time off.” (Caregiver 19)
EnvironmentalAccessAccess to: health services; funding and information for transition“To find a [BiPAP] mask you really like is a problem. Actually I don’t like any of them!” (VAI 12)‘We have a few [personal support workers] coming in….But they don’t have the training. You can tell they’ve never seen a vent.” (Caregiver 6)
Policy/guidelinesEstablished policy or guidelines for transition to HMV“Big changes would be making [transition] more transparent. Making it easier to navigate so that it can happen more quickly because the quicker someone is at home, the better it is for the patient…and the health care system.” (VAI 5)“When the people you are dealing with who are supposed to be guiding you through the [transition] process don’t even understand it, that’s where the biggest frustration lies.” (Caregiver 18)

Definition of abbreviations: BiPAP = bilevel positive airway pressure; HMV = home mechanical ventilation; RT = respiratory therapist; VAI = ventilator-assisted individual.

Facilitators
Health status

A mediator of positive transition reflected in most ventilator-assisted individual accounts was their markedly improved health status after the initial transition to ventilation when commenced in hospital:

I couldn’t believe when they put me on the respirator, that I would go to bed at ten, ten-thirty at night, and wake up at six-thirty in the morning and how rested I would actually feel since I was in the hospital. I kind of realized that the darn machine was actually saving my life. (Ventilator-assisted individual [VAI] 13)

Some ventilator-assisted individuals had lived with progressive symptoms, including shortness of breath, headaches, reduced cognitive function, and fatigue, for several years. Ventilation was perceived to have minimized or reversed the symptoms associated with chronic respiratory disease:

My brain was in a fog. I couldn’t wake up in the morning. My wife couldn’t wake me up. I was losing my memory. (VAI 12)

Although mechanical ventilation imposed certain lifestyle restrictions, resulting from being attached to a device, ventilator-assisted individuals described how this therapy advanced their autonomy and quality of life as well as facilitating return to home:

It gave me independence [and] it made my life a lot easier. And it meant I don’t have to be in hospital, which is really good. (VAI 14)

Participants experiencing improved health status after the initiation of ventilation positively appraised their future and capacity to participate in home mechanical ventilation training.

Knowledge

Respiratory therapists (RTs) and nurses were identified as the main sources of transition patient education and skill acquisition whereby VAI and family caregiver participants learned the rationale for ventilation, respiratory physiology, airway clearance techniques, and delivery of home mechanical ventilation through a mouthpiece, mask, or tracheostomy interface:

Some of the things that went really well were the staff at [the rehabilitation center]. The RT there spent a whole day of training, not only me and my immediate family, but extended family and one of my best friends. (VAI 15)

Both ventilator-assisted individuals and family caregivers positively appraised experiential “hands-on” training, although other informational materials including didactic, print, and Internet resources were also identified as important.

Expectations/self-efficacy

Inevitably, both ventilator-assisted individuals and family caregiver participants were required to independently manage the ventilator and associated care or direct others to do so in the home. This included the capacity to address malfunctioning equipment or troubleshoot an unexpected event:

There were a few times early on where things happened and we just weren’t quite sure what to do. And we called [the] nurses who were no longer actively caring for me. One of them spent easily half an hour on the phone talking us through troubleshooting issues. (VAI 6)

Timely telephone support in the first few weeks at home was an expectation of caregivers of ventilator-assisted individuals with high dependency needs. These caregivers were busy coordinating complex health practices (e.g., medication delivery), routines (e.g., bathing or dressings), technology (e.g., feed pumps, suction devices, lifts, and motorized wheelchairs), and paid personal support workers. The opportunity to seek expert advice in a timely manner offered a rapid path to problem resolution, consolidated knowledge received in hospital, and consequently increased self-efficacy in the overall care at home.

Relationships/psychosocial

Ventilator-assisted individuals and family caregivers characterized access to, and support from, a range of people including close family members, neighbors, friends, and clinicians as an indispensable resource for transition:

One of the greatest things and I know that helped D. was support. Like family support, church support and if I was just there to hold his hand or, or just you know, you know just console him or, or encourage him, you know he did so well with that. (Caregiver 9)

Several ventilator-assisted individuals spoke about the importance of developing positive relations with personal support workers who unexpectedly helped assuage the uncertainties associated with transition:

Interaction between [the personal support worker] and patient makes such a difference. And, it impacts the way that the patient is going to get better. It totally makes a difference to your transition home. (VAI 13)

Continuity of support from a range of people reduced VAI and caregiver insecurity and offered family caregivers the opportunity to consider respite needs.

Home/equipment access

For ventilator-assisted individuals using only nocturnal ventilation, home mechanical ventilation planning comprised relatively minor home preparation. However, for ventilator-assisted individuals using continuous ventilation, significant adaptation of the home environment was sometimes necessary. The assistance of hospital and rehabilitation facilities in arranging a mutually agreeable discharge date was identified as an important transition facilitator:

During the time that she was in [rehabilitation] we were busily getting the house renovated, the whole main floor had to be redone, doors open, floors raised, that sort of stuff [and the doctors] were very responsive and kept extending her stay. They were very good. (Caregiver 18)

While home ventilators were most often supplied by publicly funded agencies, employment-related health insurance, donations, or grants from community agencies facilitated acquisition of wheelchairs, ramps, chairlifts, hospital beds, and ventilator-accessible vehicles. Most devices were deemed imperative in the immediate establishment of everyday health practices, which often mirrored the hospital or rehabilitation environment:

We had completely copied exactly how it’s all set up at the hospital. So, we have the ventilator on the right of his bed with the humidifier set up next to it. We have the suction machine right underneath there. We have the cough assist machine on the left side of the bed. I need it exactly the same, because if anything is even slightly different it’s going to confuse me. (Caregiver 4)

For family caregivers, familiarity with equipment setup and routines was perceived to enhance training recall, enactment of new skills, and concordance with recommended care delivery practices such as airway clearance and cleaning of ventilation equipment.

Barriers
Relationships/psychosocial

Despite the welcome freedom from disease symptoms after the initial transition to mechanical ventilation, some participants felt threatened in terms of maintaining their right to transition to home while ventilated. Some family caregivers identified discordance with the intensive care unit team regarding the feasibility and practicality of transition to home mechanical ventilation:

No doctor believed he would come home. I insisted he will come home. (Caregiver 6)

The negatives were from other people. You know the nurses telling me I wouldn’t be able to do it, “You, you cannot do this, you can’t.You know that was a difficult thing. And it took a while to persuade them. (Caregiver 4)

Family–clinician discordance was perceived to result in prolonged hospitalization and delays in the initiation of ventilation training for family caregivers:

If some of those wait periods had not existed, I think that I was ready to come home easily a month or more sooner. (VAI 18)

They really did not train me until the last minute. I thought I was going to get this special training. But it really did not happen. (Caregiver 6)

After their arrival home, some caregivers were similarly challenged by the disapproving attitudes of community health providers:

I’ve encountered some health care workers who don’t like the choices I’ve made on [the ventilator-assisted individual’s] behalf. That’s been the biggest letdown for me. Being questioned on things…it’s not safeor I’mnot doing things in the best interest of him.” (Caregiver 2)

Those needing to access emergency hospital services after the transition home also experienced negative communication with some clinicians. Despite their intricate knowledge of the care requirements of their family member and accountability for care in the home environment, family caregivers perceived they had little or no input into the ventilator-assisted individual’s plan of care during these critical health encounters within the acute care sector:

I told the [emergency department doctor] don’t give him more than two liters of oxygen and keep him on BiPAP. I came back the next morning and the man was begging the nurse for assistance because [they had removed the BiPAP and] those muscles don’t work with ALS. It was the worst thing in my life. I had nightmares after seeing his face like that. I feel that a lot of doctors and medical people don’t know what these machines do. (Caregiver 10)

Family–clinician discordance conflicted with expectations for patient/family-centered care. Moreover, family caregivers worried that health professionals’ disapproving attitudes or inexperience with home mechanical ventilation could negatively influence the presentation of treatment options, shared decision-making, and patient outcomes.

Access/support

For many, the requirement to “fight” for patient-centered care extended to the acquisition of practical information. For example, those using noninvasive ventilation sometimes experienced air leaks, ventilator alarms, or painful facial lesions due to an ill-fitting mask interface. Hard-to-find guidance on such matters led to acknowledged delays in resolving these problems:

We were a bit upset about the mask. We did not know there were different ones available. If they gave you a website to go to, or a printed [brochure] with [troubleshooting] pictures, then you can look into it more on your own. (Caregiver 14)

Those who recalled receiving print or Internet information reported it being helpful. However, caregivers of ventilator-assisted individuals with high dependency needs described insufficient time to translate written guidance into action:

They gave us print information too. Not that I have had time to read it. (Caregiver 6)

The preference for personalized and direct patient and caregiver educational support was especially profound in the initial weeks of the VAI returning home. This need was characterized by telephone appeals for guidance to hospital staff and ventilator providers, as well as the need for home visits by RTs in those provinces where this is funded:

A big problem is nobody comes in and just goes over things to make sure everything is working and makes sense. I think that’s the first thing. An important piece is the in-home follow-up. (Caregiver 8)

The termination of regular contact and access to ventilator experts at hospital discharge was negatively experienced as service fragmentation and counterintuitive to their expectations for oversight during receipt of home mechanical ventilation.

Knowledge/policy

Ventilator-assisted individuals and family caregivers reported incomplete understanding of home care funding policy, the roles of service agencies, and skills of personal support workers before and in the early weeks of transition. As a result, many participants were surprised by the unavailability of personal support workers experienced in home mechanical ventilation:

One of the big slogans is “home is best” but they really don’t make it easy. Now, I have a couple of [personal support workers] for 4 hours a day but they’re not actually going to touch the vent. (VAI 18)

A lack of home health workers experienced in home mechanical ventilation particularly adversely impacted the families of ventilator-assisted individuals requiring continuous ventilation. Participants highlighted an overwhelming duty to train and supervise inexperienced personal support workers, which increased family caregiver burden and resulted in hidden costs, for example, lost wages as well as social isolation for the family caregiver who was required to remain at home.

In this qualitative interview study of ventilator-assisted individuals and their family caregivers, participant perspectives suggest the transition to home mechanical ventilation was a complex and demanding process. Facilitators of transition included improved VAI health status through establishment of ventilation; development of knowledge, skills, and self-efficacy in home mechanical ventilation management; availability of social support; and advanced preparation of the home environment to accommodate home mechanical ventilation and other technology. Barriers to transition included conflict with health professionals in relation to perceived capability of family caregivers and ventilator-assisted individuals to manage home mechanical ventilation; limited or difficult access to needed information; and lack of personal support workers skilled in the management of home mechanical ventilation. Participant recommendations to improve the transition process comprised ongoing and timely telephone access to respiratory health professionals experienced in ventilation; availability of home follow-up, particularly in the early stages of transition; and increased availability of formal ventilation training for home personal support workers.

Unique findings within our data include perceived family–clinician discordance regarding home mechanical ventilation. Delays in achieving consensus regarding the feasibility and practicality of transition to home mechanical ventilation may unnecessarily prolong hospital stay, resulting in increased costs to the health care system. Previous studies have identified limited knowledge of home mechanical ventilation among health care professionals in the acute health care sector (28) and underestimation of the positive impact on VAI health-related quality of life (29). Participant narratives suggest both nurses and physicians may unwittingly impose restrictive values when discussing home mechanical ventilation or limit disclosure of transition opportunities (30). Education targeting hospital and community-based clinicians may assist in the early identification of home mechanical ventilation candidates and topics for discussion with ventilator-assisted individuals and family caregivers.

The need for ongoing professional contact by the ventilator-assisted individuals and their caregiver is likely due to the absence or limited availability of health care professionals with ventilation expertise on transition home. For study participants, the ability to contact respiratory health professionals may ameliorate perceived service fragmentation and contribute to perceptions of safety and well-being (31). Prior research suggests quality of life of individuals experiencing chronic illness depends on their capacity to direct their own personal care (17). Ready access to ventilation experts may function to consolidate new knowledge, resolve informational gaps, and contribute to feelings of self-efficacy (18). This may include guidance for the configuration of the home environment. Participant recommendations for respiratory health professional telephone support and home outreach align with Canadian home mechanical ventilation guidelines and reinforce the importance of accessible information and psychosocial support for a successful transition (11).

Limited access to ventilation experts in the community is a potentially modifiable transition variable and reflects differences in the organization of home mechanical ventilation services across Canada (11). For example, provision of home mechanical ventilation equipment and training is centralized in some Canadian provinces (e.g., British Columbia), but not others (3). In addition, caregiver competence is highly valued by ventilator-assisted individuals (32). Inadequate knowledge and skill among paid and family caregivers may result in poor outcomes including use of emergency health services and hospital readmission (1, 12). Initiatives aligning participant and provider priorities include provision of standardized home mechanical ventilation training and outreach that may mitigate ad\ment challenges, thus reducing stress and caregiver burden and improving health-related quality of life for ventilator-assisted individuals and family caregivers (33).

Strengths of this study include participant recruitment from multiple provinces with varying models of care for home mechanical ventilation, inclusion of both ventilator-assisted individuals and family caregivers, and use of multiple investigators. An ecological framework was helpful in orienting attention beyond individual transition readiness to potentially modifiable social and environmental variables. Limitations include family caregivers who were homogeneous regarding sex (female) and relationship to the VAI, which may limit the generalizability of our findings, although other studies have demonstrated that the vast majority of caregivers are indeed female. As well, data were gathered at a single time point and based on participant recall.

Conclusion

In this study, we identified important facilitators (VAI health status, knowledge of and self-efficacy in home mechanical ventilation management, social support, and advanced preparation of the home environment) and barriers (conflict with health professionals, limited access to information, and lack of skilled personal support workers) to home mechanical ventilation transition. Participants identified the opportunity to optimize their transition experience through respiratory health professional telephone support, home follow-up, and increased and standardized training of personal support workers.

Members of the CANuVENT Group: Reshma Amin, Hospital for Sick Children; Monica Avendano, West Park Healthcare Centre; Sandra Dial, Montreal Chest Institute; Eddy Fan, Mount Sinai Hospital; Ian Fraser, Toronto East General Hospital; Robert Fowler, Sunnybrook Health Sciences Centre; Roger Goldstein, West Park Healthcare Centre; Sherri Katz, Children’s Hospital of Eastern Ontario; Judy King, University of Ottawa; David Leasa, London Health Sciences Centre; Cathy Mawdsley, London Health Sciences Centre; Douglas McKim, Ottawa Hospital; Mika Nonoyama, University of Ontario Institute of Technology; Jeremy Road, Provincial Respiratory Outreach Program, Vancouver Coastal Health; Louise Rose, University of Toronto; Gordon Rubenfeld, Sunnybrook Health Sciences Centre.

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Correspondence and requests for reprints should be addressed to Craig M. Dale, R.N., Ph.D., CNCC(C), Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Suite 130, Toronto, ON, M5T 1P8 Canada. E-mail: .

Supported by a grant from the Partnerships for Health Systems Improvement competition of the Canadian Institutes of Health Research.

This work was conducted at the Centre for Research in Inner City Health at St. Michael’s Hospital, the University of Ottawa, and the University of Toronto.

Author Contributions: Conception and design of the study: L.R., C.M.D., J.K., M.N., D.M., J.R.; data acquisition: C.M.D., J.K.; analysis and interpretation of data: C.M.D., L.R., S.C., J.K.; drafting the article or revising it critically for important intellectual content: all authors. C.M.D. is the guarantor of the article, taking responsibility for the integrity of the work as a whole, from inception to published article.

Author disclosures are available with the text of this article at www.atsjournals.org.

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