BACKGROUND AND OBJECTIVES

Caregivers of children with medical complexity (CMC) face many stressors related to their child’s medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature.

METHODS

We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data.

RESULTS

Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child’s illness and medical needs. In addition, parents indicated their child’s illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver’s housing preferences and possibilities.

CONCLUSIONS

Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child’s health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC.

What’s Known on This Subject:

Caregivers of children with medical complexity (CMC) face financial, social, and emotional stressors. Housing is known to be a determinant of health, but little research about the experience of housing and its relationship to health in this high-risk population has been explored.

What This Study Adds:

We expand on existing research in which housing is described as a determinant of health to explore the relationship between housing and health in CMC. In our study, we found that the health status of CMC affects families’ housing needs and options available to them.

Children with medical complexity (CMC) are a subgroup of children with special health care needs who may have a congenital or acquired multisystem disease, severe neurologic impairment with marked functional dependency, and/or technology reliance for activities of daily living.1,2  Families of CMC experience a multitude of financial, social, and emotional stressors as a result of the demands of their child’s condition(s) on parental caregivers.1  Housing need is one such stressor that has yet to be examined in the literature.

Although no universal definition exists, current literature uses the term “housing need” to describe various substandard living conditions.3  One definition of housing need includes inadequate housing (in need of major repairs), unsuitable housing (crowded: fails to meet the Canadian National Occupancy Standard requirements for number of bedrooms for the size and makeup of the household), and unaffordable housing (≥30% of gross household income spent on shelter costs).3,4  There is limited research on CMC (representing the most severe end of disability) and other unique types of housing need potentially experienced by CMC, including medical service access, disability accommodations in the home, and housing space. Therefore, the primary aim of this study was to explore families’ perspectives and experiences of housing need and its relationship to their child’s health status as it pertains to CMC.

We conducted a qualitative study using semistructured interviews to identify themes representative of families’ experiences of housing need. Qualitative methodology was used because it allows for in-depth exploration of thoughts, feelings, and experiences.5  This study took place in Canada at a tertiary pediatric health sciences center. Data were collected between June 2017 and December 2020. Institutional research ethics approval was obtained (institutional review board 6130100163). Caregivers were eligible to participate in this study if their child was <18 years of age and enrolled in the Complex Care Program. The Complex Care Program is aimed to assist families of CMC with care coordination, continuity of care, informed decision-making, and goal setting and is a first point of contact for medical concerns. To access the program, the criteria of CMC must be met, as defined by at least 1 criterion from each of the following conditions: technology dependence and/or users of high intensity care (eg, mechanical ventilator or constant medical and/or nursing supervision), fragility (eg, severe and/or life-threatening condition or an intercurrent illness causing immediate serious health risk), chronicity (condition expected to last at least 6 more months or life expectancy <6 months), and complexity (involvement of at least 5 health care practitioners and/or teams at 3 different locations or family circumstances impede their ability to provide day-to-day care of decision-making for a CMC).6  Typically, CMC have genetic disorders, neurologic impairment, and/or cerebral palsy.

Caregivers were excluded if they could not communicate in English, if their child was deceased, or if their child was living in an institutional setting outside of the caregiver' home. Purposive sampling was used, with frequent reviews of participant demographics and active efforts to recruit participants from groups underrepresented in the data. This sampling method was chosen to ensure representation from caregivers of diverse ages, socioeconomic statuses, and geographic locations.

Eligible caregivers were invited to participate in the study via letters sent by mail. Two weeks after the letters of invitation were sent, caregivers were either contacted about the study via telephone or caregivers of children who were inpatients were introduced to the research assistant by a member of the care team. These multiple recruitment methods were used in an attempt to reach all families, even those with the most unstable housing. All caregivers who chose to participate provided written informed consent.

Semistructured interviews took place in person at a location of convenience or via telephone. Two interviews were completed in person, as the CMC was admitted to the hospital, and all remaining interviews were completed over the phone at the parent’s request. Interviews were conducted systematically by using a standardized interview guide by a research team member (K.G.H. or K.E.) and lasted between 15 and 75 minutes (mean = 36 minutes). The goal of the interview was to explore families’ perspectives and experiences of housing need and its relationship to their child’s health. The interview guide was developed iteratively by the research team. Initial interview questions were informed by a review of the literature. After the first 2 interviews, the data generated were reviewed, and the interview guide was refined to clarify wording and broaden the scope of the open-ended questions to elicit more descriptive and in-depth responses regarding participants housing experiences. Interview questions were developed to explore caregivers’ perceptions of housing experience, whether their child’s condition affected housing preferences, and potential housing supports (Supplemental Information). Parental caregiver demographic data were obtained through a questionnaire. Data collection and analysis occurred concurrently with recruitment. Thematic saturation, as determined by consensus of the research team, was reached after 16 interviews.7  An additional 4 interviews were conducted to increase diversity and further confirm data saturation.

Interviews were audio-recorded, transcribed verbatim by a professional transcriptionist. All transcripts were deidentified. Thematic analysis was used to analyze the transcripts. First, 2 transcripts were reviewed independently by members of the research team (K.G.H., D.A., and J.O.), and an initial coding tree was developed by consensus. The coding tree was revised iteratively and was finalized after review of the fifth transcript. Consensus was determined through meetings in which the research team reviewed, discussed, and revised emerging codes. Once the coding tree was finalized, the transcripts were independently coded by research team members (K.G.H., D.A., J.O., C.M., and K.E.). Final coding for each transcript was determined by consensus and was entered into a qualitative data analysis software.8  Themes were developed by the research team by examining patterns in the relationships between codes.

Twenty caregivers completed the interview, all of whom lived in Canada, and 42% identified a non-English language as their first language (eg, Somali, Dari, and Tagalog). Women represented 89% of the participants. The median annual household income was in the $50 000 to $79 999 bracket, and 63% of participants rented their home (Table 1).

TABLE 1

Participant Demographics (N = 19)

Characteristicn (%)a
Sex  
 Female 17 (89) 
 Male 2 (11) 
Age, y  
 18–35 8 (42) 
 36–40 5 (26) 
 41–50 6 (32) 
Marital status  
 Married 15 (79) 
 Single 3 (16) 
 Separated 1 (5) 
Education  
 Completed secondary school or less 3 (16) 
 College or diploma program 9 (47) 
 Bachelor or undergraduate degree 5 (26) 
 Professional degree 2 (11) 
Household income, CAD$  
 10 000–29 999 5 (26) 
 30 000–49 999 4 (21) 
 50 000–79 999 2 (11) 
 ≥80 000 8 (42) 
Geographical region  
 Rural area, small city or town (ie, <100 000 people), or suburb 7 (37) 
 Medium-sized city (ie, 100 000–499 999 people) 1 (5) 
 Large city (ie, >500 000 people) 11 (58) 
Current home type  
 House 9 (47) 
 Apartment 5 (26) 
 Townhouse 4 (21) 
 Social housing 1 (5) 
Own versus rent  
 Own 7 (37) 
 Rent 12 (63) 
Language  
 English only 11 (58) 
 English as a second language 8 (42) 
Immigration status  
 Born in Canada 12 (63) 
Characteristicn (%)a
Sex  
 Female 17 (89) 
 Male 2 (11) 
Age, y  
 18–35 8 (42) 
 36–40 5 (26) 
 41–50 6 (32) 
Marital status  
 Married 15 (79) 
 Single 3 (16) 
 Separated 1 (5) 
Education  
 Completed secondary school or less 3 (16) 
 College or diploma program 9 (47) 
 Bachelor or undergraduate degree 5 (26) 
 Professional degree 2 (11) 
Household income, CAD$  
 10 000–29 999 5 (26) 
 30 000–49 999 4 (21) 
 50 000–79 999 2 (11) 
 ≥80 000 8 (42) 
Geographical region  
 Rural area, small city or town (ie, <100 000 people), or suburb 7 (37) 
 Medium-sized city (ie, 100 000–499 999 people) 1 (5) 
 Large city (ie, >500 000 people) 11 (58) 
Current home type  
 House 9 (47) 
 Apartment 5 (26) 
 Townhouse 4 (21) 
 Social housing 1 (5) 
Own versus rent  
 Own 7 (37) 
 Rent 12 (63) 
Language  
 English only 11 (58) 
 English as a second language 8 (42) 
Immigration status  
 Born in Canada 12 (63) 

One participant declined to provide demographic information, and 2 participants represent a married couple (009 and 009B). CAD$, Canadian dollar.

a

Percentages may not add up to 100 because of rounding.

Two major themes emerged from the data: (1) impact of health on housing and (2) impact of housing on health.

The impact of health on housing can be illustrated through 3 interrelated subthemes that emerged from the interviews: (1) housing preferences, (2) housing possibilities, and (3) housing outcome as a trade-off (Fig 1 and Table 2). Subthemes 1 and 2, housing preferences and housing possibilities, are influenced by the child’s health status. Subtheme 3, the housing outcome, is the result of a trade-off between a family’s housing preferences and the possibilities available to the family.

FIGURE 1

Conceptual model depicting the impact of health on housing among CMC.

FIGURE 1

Conceptual model depicting the impact of health on housing among CMC.

Close modal
TABLE 2

Theme 1: Impact of Health on Housing

Subthemes of Theme 1Quotes
Housing preferences  
 Perferences as ideals “We prefer to have a wider common area, to get into their wheelchairs … because it’s 15 floors, it’s harder to get us out of the apartment in case of fire because wheelchair needs bigger equipment and trained fire fighters do that” (parent 035). 
 “Because of her condition, we want her to be very comfortable. We would never live in a condo. We do like to be in a setting where we’re in a house. Only because, it gives us a better opportunity to be able to take her outside” (parent 030). 
 “It [son’s medical complexity] affects all the choices, everything that we have to do or where we want to live. I mean, we love, two-story houses… but with [son] we will have to really consider having something that has a room in the first floor with a washroom and shower…” (parent 006). 
 Preferences as needs “There’s a lot of moving pieces that you have to take into consideration and also, space. Because she has so much equipment, you have to have a room or a place to place her where there’s enough room to be able to exercise her to the stander or wheelchair. A typical bedroom, like in a small home, would never work” (parent 030). 
 “We need to stay close to this hospital because her health situation is very fragile, she might pass away during the commute” (parent 009). 
 “We moved from [4 hours away] to [city] to be closer to [hospital] … and initially it was temporary, as [daughter]’s obviously, more complex than we had originally anticipated, we just had to stick around” (parent 103). 
Housing possibilities  
 Family resources “Her health condition has affected us because we do not have a choice. If she [didn’t] have those health issues, I would be able to work…” (parent 009B). 
 “If things were a little bit different I would’ve been done school and I would probably have a higher paying job, too… My earning potential would go up. But everything’s a little bit on hold, because of [daughter]’s medical issues” (parent 074). 
 “When she was born, we had so many different doctors’ appointments and so many new diagnoses, and I’m taking 4 out of 5 days off work, nobody wanted to keep me, right? So, you’re straight up looking at not having the income that you would have with both of you working” (parent 088). 
 Systemic supports “I’ve thought about applying for subsidy house, and it doesn’t matter if you have one or two children with disabilities, they go by how many years you applied, like you have to go by the waiting list… it can be 10, 15 years” (parent 006). 
 “Our apartment building, it’s a rental unit, and we have talked to [management], they say they wouldn’t change the structure or take off the door or any other help because they rent as it is. And when we go to [city community] housing, they say we will put you on our transfer list but not on a priority [list]” (parent 035). 
 “There’s absolutely nothing available in the way of accessible housing… we have to try and find a bungalow and then do everything yourself. To find something that’s accessible is very far and few. Unfortunately, you always have to wait for somebody to pass away in order to be able to access that housing” (parent 088). 
Housing outcome as a trade-off  
 “Unless we decide to go far away… We can get a big house but, it will be a challenge for us to come here, at Sick Kids, for different appointments” (parent 009). 
 “As much as I’d like to leave the city because she’d breathe better air out of the city, everything is so close, and the nursing is available here, so that’s why we stay” (parent 099). 
 “We [can’t] find an accessible washroom, so our own personal preference, like next to the market, next to the highway, next to our other amenities, it’s not anymore preference. Our only aim is just an accessible washroom” (parent 035). 
 “Being out in the country with [son] and his mobility issues would be more challenging for us, so, we looked in town... We just lucked out on finding a home... It could fit kind of our needs, but it certainly wasn’t in the most ideal location, and it doesn’t have a backyard” (parent 024). 
 “I would have to go in the boonies where we would not have any work… Right, so if I go any closer to more civilization where you’re going to find it, oh then you’re looking at 1 million, 1.5 [for a home]... Which is really out of my league” (parent 088). 
 “We’re still renting… in an area that’s extremely, extremely expensive because we have to be in the right zone for [daughter’s] school, for home care, to get the maximum coverage, because if you’re part of [this area], you get the most amount of hours... And we also want to be close to the hospital” (parent 030). 
Subthemes of Theme 1Quotes
Housing preferences  
 Perferences as ideals “We prefer to have a wider common area, to get into their wheelchairs … because it’s 15 floors, it’s harder to get us out of the apartment in case of fire because wheelchair needs bigger equipment and trained fire fighters do that” (parent 035). 
 “Because of her condition, we want her to be very comfortable. We would never live in a condo. We do like to be in a setting where we’re in a house. Only because, it gives us a better opportunity to be able to take her outside” (parent 030). 
 “It [son’s medical complexity] affects all the choices, everything that we have to do or where we want to live. I mean, we love, two-story houses… but with [son] we will have to really consider having something that has a room in the first floor with a washroom and shower…” (parent 006). 
 Preferences as needs “There’s a lot of moving pieces that you have to take into consideration and also, space. Because she has so much equipment, you have to have a room or a place to place her where there’s enough room to be able to exercise her to the stander or wheelchair. A typical bedroom, like in a small home, would never work” (parent 030). 
 “We need to stay close to this hospital because her health situation is very fragile, she might pass away during the commute” (parent 009). 
 “We moved from [4 hours away] to [city] to be closer to [hospital] … and initially it was temporary, as [daughter]’s obviously, more complex than we had originally anticipated, we just had to stick around” (parent 103). 
Housing possibilities  
 Family resources “Her health condition has affected us because we do not have a choice. If she [didn’t] have those health issues, I would be able to work…” (parent 009B). 
 “If things were a little bit different I would’ve been done school and I would probably have a higher paying job, too… My earning potential would go up. But everything’s a little bit on hold, because of [daughter]’s medical issues” (parent 074). 
 “When she was born, we had so many different doctors’ appointments and so many new diagnoses, and I’m taking 4 out of 5 days off work, nobody wanted to keep me, right? So, you’re straight up looking at not having the income that you would have with both of you working” (parent 088). 
 Systemic supports “I’ve thought about applying for subsidy house, and it doesn’t matter if you have one or two children with disabilities, they go by how many years you applied, like you have to go by the waiting list… it can be 10, 15 years” (parent 006). 
 “Our apartment building, it’s a rental unit, and we have talked to [management], they say they wouldn’t change the structure or take off the door or any other help because they rent as it is. And when we go to [city community] housing, they say we will put you on our transfer list but not on a priority [list]” (parent 035). 
 “There’s absolutely nothing available in the way of accessible housing… we have to try and find a bungalow and then do everything yourself. To find something that’s accessible is very far and few. Unfortunately, you always have to wait for somebody to pass away in order to be able to access that housing” (parent 088). 
Housing outcome as a trade-off  
 “Unless we decide to go far away… We can get a big house but, it will be a challenge for us to come here, at Sick Kids, for different appointments” (parent 009). 
 “As much as I’d like to leave the city because she’d breathe better air out of the city, everything is so close, and the nursing is available here, so that’s why we stay” (parent 099). 
 “We [can’t] find an accessible washroom, so our own personal preference, like next to the market, next to the highway, next to our other amenities, it’s not anymore preference. Our only aim is just an accessible washroom” (parent 035). 
 “Being out in the country with [son] and his mobility issues would be more challenging for us, so, we looked in town... We just lucked out on finding a home... It could fit kind of our needs, but it certainly wasn’t in the most ideal location, and it doesn’t have a backyard” (parent 024). 
 “I would have to go in the boonies where we would not have any work… Right, so if I go any closer to more civilization where you’re going to find it, oh then you’re looking at 1 million, 1.5 [for a home]... Which is really out of my league” (parent 088). 
 “We’re still renting… in an area that’s extremely, extremely expensive because we have to be in the right zone for [daughter’s] school, for home care, to get the maximum coverage, because if you’re part of [this area], you get the most amount of hours... And we also want to be close to the hospital” (parent 030). 

Subtheme 1: Housing Preferences

Housing preferences refer to caregivers’ desired housing characteristics. Parents identified preferred housing characteristics relating to both the layout of the house (single story versus multistory, size of rooms, etc) and housing location (proximity to the hospital, schools, etc). Housing preferences were often described in relation to children’s health conditions. In some cases, parents’ preferences for a given housing characteristic was so strong that it was described as a need. For example, parents commented that their homes needed to be single story because of the child’s mobility limitations or needed to be close to the hospital given their child’s medical fragility. When parents did not describe needs but still mentioned an unmet housing desire, these preferences were defined as ideal housing preferences (Table 2).

Subtheme 2: Housing Possibilities

Housing possibilities refer to the spectrum of resources and supports available to families to achieve their preferred housing situations. As with housing preferences, the housing possibilities available to families were often influenced by their child’s medical conditions. All parents spoke about household income and home ownership status. For example, some parents (n = 11, 55%) stated that 1 partner had to stop working, or as a single parent they were not working, to support the CMC, resulting in a lower household income. Similarly, some families (n = 11, 55%) stated that they were unable to purchase a home. Among families of CMC, home ownership was desired as a way to meet the basic functional needs of their child. Without home ownership and adequate finances, families (n = 5, 25%) described that they could not make modifications to their current home to make it more accessible for their child. Other factors that affect housing possibilities operate at a systemic level. For example, many families (n = 11, 55%) noted that they rely on and are affected by the level of financial support they receive from the government. Others (n = 12, 60%) described challenges with availability of accessible housing and access to agencies supporting families with housing need.

Subtheme 3: Housing Outcomes as Trade-off

Housing outcomes reflect complex intersections between families’ housing preferences and possibilities. Parents often described that they faced a trade-off when choosing housing, prioritizing the attributes they felt were most relevant to their child’s health and quality of life at the expense of accepting some negative attributes, such as living in a less ideal location at a higher expense. Many parents (n = 11, 55%) described balancing expense with location, proximity to health care facility, and/or accessibility. Among families with higher incomes, several parents described being able to achieve their primary housing priorities, those considered to be “needs.” Some families (n = 5, 25%) were able to renovate their home to make it accessible for their child, but this came at great financial expense and often required additional sources of funding. Lower-income families with fewer available resources reported a lack of choice. Some families (n = 5, 25%) were on social assistance and living in small, inaccessible apartments. Even if these families had the means to do so, these apartments could not be renovated as they wished because of their lack of ownership and rental status.

Within theme 2, 2 subthemes emerged: (1) health of the caregiver and (2) health of the child (Table 3).

TABLE 3

Theme 2: Impact of Housing on Health

Subthemes of Theme 2Quotes
Health of the caregiver  
 Mental health “I felt so low, so like, can’t afford things to my kids, I felt like I was a failure, like couldn’t provide them a home. A house where they can say this is my house…” (parent 006). 
 “It’s extremely stressful because it’s a lot of unknowns. Life is always a lot of unknowns and you’re stressed out, but this is a whole other level. Because we have to make it safe for her, we have to make it comfortable for her, but we really just don’t know what that’s gonna look like in the future” (parent 030). 
 “For my wife… she is using antidepressants, and she is depressed, with all these situations, because she is a mom, and she lives in house for long period, like probably some days, 24 hours, some days 20 hours… So she feels it more than me, and it’s pretty stressful for her” (parent 035). 
 “It was a big challenge, my husband was working 2 jobs, on the side, and we never saw him at SickKids or at home because he was working all the time to provide. It was exhausting, to be honest, and it was really depressing as well cause we went through so much” (parent 104). 
 Physical health “It wasn’t a big issue before, but now he’s 8 and he’s getting heavy, and it’s getting difficult for me to carry him up and down the stairs, and now I’m just feeling the physical burden of that…like I go to the pain clinic, and I get massages… I’ve had cortisones in my knees, cortisone in my shoulders...” (parent 004). 
 “Soon he’s gonna need a lift to take him upstairs to the shower. Like right now, I can’t take him upstairs. He’s huge and heavy… So, I can feel a lot of strain in my back… To go up the stairs, like 2 sets of stairs” (parent 006). 
 “I’m exhausted because I had a very complicated pregnancy myself. I was very sick, I had preeclampsia, and since then, I did not recover 100%. The challenge is still going on, we are fighting for everything” (parent 104). 
Health of the child  
 “The space is not there. Kids should be able to walk and tumble over and you know, have a certain amount of freedom… [I try to] leave an area for the therapists’ things they recommend that I do. I’m not really able to do that because there’s too many obstacles in the way for her” (parent 003). 
 “I want to have more safety features in the house, like a fan when you cook, so you don’t have to open the windows all the time. We have to watch where we’re gonna expose [son] to because of his asthma…” (parent 006). 
 “She needed her own bedroom because of her condition, just keeping her out of her sisters’ rooms…If we put her in a room constantly with 2 little girls that are in school, it wasn’t a great idea, at the time” (parent 033). 
 “Our previous place ended up getting rats inside of it and because he was so fragile, at that point, we had to leave right away” (parent 101). 
 “For my daughter, I cannot go to a place where it’s not well-maintained. If there’s critters or infestations, I don’t know what she’s breathing in, nevermind myself and my older son. So, with that I find I’m a little bit, well, a lot picky, I should say” (parent 003). 
Subthemes of Theme 2Quotes
Health of the caregiver  
 Mental health “I felt so low, so like, can’t afford things to my kids, I felt like I was a failure, like couldn’t provide them a home. A house where they can say this is my house…” (parent 006). 
 “It’s extremely stressful because it’s a lot of unknowns. Life is always a lot of unknowns and you’re stressed out, but this is a whole other level. Because we have to make it safe for her, we have to make it comfortable for her, but we really just don’t know what that’s gonna look like in the future” (parent 030). 
 “For my wife… she is using antidepressants, and she is depressed, with all these situations, because she is a mom, and she lives in house for long period, like probably some days, 24 hours, some days 20 hours… So she feels it more than me, and it’s pretty stressful for her” (parent 035). 
 “It was a big challenge, my husband was working 2 jobs, on the side, and we never saw him at SickKids or at home because he was working all the time to provide. It was exhausting, to be honest, and it was really depressing as well cause we went through so much” (parent 104). 
 Physical health “It wasn’t a big issue before, but now he’s 8 and he’s getting heavy, and it’s getting difficult for me to carry him up and down the stairs, and now I’m just feeling the physical burden of that…like I go to the pain clinic, and I get massages… I’ve had cortisones in my knees, cortisone in my shoulders...” (parent 004). 
 “Soon he’s gonna need a lift to take him upstairs to the shower. Like right now, I can’t take him upstairs. He’s huge and heavy… So, I can feel a lot of strain in my back… To go up the stairs, like 2 sets of stairs” (parent 006). 
 “I’m exhausted because I had a very complicated pregnancy myself. I was very sick, I had preeclampsia, and since then, I did not recover 100%. The challenge is still going on, we are fighting for everything” (parent 104). 
Health of the child  
 “The space is not there. Kids should be able to walk and tumble over and you know, have a certain amount of freedom… [I try to] leave an area for the therapists’ things they recommend that I do. I’m not really able to do that because there’s too many obstacles in the way for her” (parent 003). 
 “I want to have more safety features in the house, like a fan when you cook, so you don’t have to open the windows all the time. We have to watch where we’re gonna expose [son] to because of his asthma…” (parent 006). 
 “She needed her own bedroom because of her condition, just keeping her out of her sisters’ rooms…If we put her in a room constantly with 2 little girls that are in school, it wasn’t a great idea, at the time” (parent 033). 
 “Our previous place ended up getting rats inside of it and because he was so fragile, at that point, we had to leave right away” (parent 101). 
 “For my daughter, I cannot go to a place where it’s not well-maintained. If there’s critters or infestations, I don’t know what she’s breathing in, nevermind myself and my older son. So, with that I find I’m a little bit, well, a lot picky, I should say” (parent 003). 

Subtheme 1: Health of the Caregiver

Parents described both mental and physical health consequences of their perceived housing need. Stress associated with housing was often related to feelings of guilt regarding their current housing situation and its consequences for the child and family. Some parents (n = 8, 40%) described physical health consequences of their housing. Most often, this was due to inaccessible housing, which forced parents to carry their child up and down stairs multiple times per day, sometimes resulting in musculoskeletal injury.

Subtheme 2: Health of the Child

Some parents (n = 4, 20%) suggested that their current housing situation impacted the possibilities and opportunities for their child, which in turn they perceived to limit their child’s development. For example, some caregivers (n = 2, 10%) described not having enough space to allow their child to mobilize, often because of space being occupied by medical equipment. Some families (n = 2, 10%) believed that lack of space affected their child’s cognitive and gross motor skills. Other parents (n = 3, 15%) described physical health consequences of housing, such as asthma due to poor air quality or the spread of infection within the household due to crowding.

Our research complements existing literature on housing and health and elucidates the relationship between housing and health among CMC living in Canada and their families. This study adds novel insight, identifying ways by which poor health can affect housing options, needs, and health impacts for caregivers and CMC.

The impact of housing on health is well revealed in the literature.912  Our study is unique in that we also explored the reverse relationship: the impact of health on housing. In existing literature, researchers focus primarily on how a child’s health can negatively affect caregiver income, which is only 1 determinant of housing outcomes conceptualized within our subtheme of housing possibilities. Notably, an estimated 75% of primary caregivers experience leaving a job voluntarily or involuntarily, taking a reduction in paid hours, or taking a leave of absence, because of the demands of caring for their child.13  Furthermore, families of children with complex chronic conditions are more likely to move to a neighborhood with a lower income quintile or remain in the lowest income quintile neighborhood.13  These studies provide quantitative support for our finding that children’s health status affects parental employment, in turn limiting income and therefore housing options. With our research, we provide novel insight, suggesting that CMC’s health affects not only parents’ income and resources but also their housing preferences, such as the type, layout, and location of homes that caregivers seek. A family’s housing outcome is often the result of a trade-off between housing preferences and possibilities.

Despite the health consequences of housing need for both CMC and their families, few policy initiatives have been proposed to address this issue. Demand for policy solutions will only increase, with greater emphasis on moving children out of hospitals and into their homes14  and with rising numbers and increasing longevity of CMC after advances in technology.15  To date, Canadian policy initiatives have created minimum wage guidelines and child care benefits in the attempt to reduce poverty, which would in turn aid all families experiencing housing need. In the United States, families of CMC may be eligible for Supplemental Security Income, which has been revealed to decrease housing instability in this population, and other government benefits exist, such as housing subsidies, energy assistance programs, unemployment benefits, and cash assistance programs.16  Both Canada and the United States lack policy initiatives that specifically address housing supports for families of CMC. Our qualitative findings suggest that Canadian families of CMC would benefit from policies targeting improved access to subsidized housing, funding to support full-time caregivers, improved funding for accessibility renovations, and regulations allowing families who rent to make accessibility changes. Further research regarding housing supports and policy initiatives for families of CMC is warranted.16 

Our findings offer insight into future interventions. Regardless of home ownership status, participants reported financial difficulties associated with home modifications to improve accessibility. These accounts suggest that families could benefit from additional funding for accessibility not tied to income. Families in social housing described challenges with lengthy wait times to access appropriate units, and caregivers living in rental units frequently described difficulties with introducing accessibility features. Therefore, advocacy on the individual and systemic level may be needed to support families who are renting or using social housing. Further research and consultation will be critical to inform interventions to support the housing needs of CMC and their families. Meanwhile, given the salience of housing issues among this population, we encourage health care providers to discuss housing routinely with families of CMC. Screening questions may be useful in broaching the subject of housing need. Although no standardized set of screening questions exist, we recommend that questions focus on assessing affordability, accessibility, crowding, and safety. Possible questions could include the following: (1) In the past 12 months have you ever had to reduce the amount you spend on basics so you can afford your rent or mortgage?; (2) do you currently need any accessibility accommodations in your home?; (3) is a common area currently used as a bedroom?; and (4) do you have any home safety concerns? Screening families for housing need could provide the opportunity to link them with resources, such as social workers, case managers, local social service agencies, or community organizations, that can support them in accessing benefits and other additional sources of funding.16  Another solution to assess housing need would be the development of a scoring system to provide a quantitative understanding of the level of housing need faced by families. Future research should investigate the creation and validation of a housing need questionnaire or score or the use of social determinants of health screening tools to identify families in housing need.

We acknowledge some limitations in our research. First, because of funding constraints, our study excluded non-English speakers. Consequently, our findings may not reflect other challenges, such as difficulty navigating housing-related services because of language barriers. Despite this, we note that ∼42% of participants spoke a non-English language as their first language (eg, Somali, Dari, and Tagalog) and 37% immigrated to Canada, thus revealing geographic and ethnic diversity among our small qualitative sample. In our work, we present qualitative results in aggregate. In future work, it may be helpful to disaggregate findings by household income to better understand its effect on caregiver experiences and tailor effective interventions. We chose qualitative methods to allow for exploration of themes; however, this methodology does not allow for generalizability, and thus our findings may not represent the experiences of all families of CMC. However, our results are a stepping-stone in understanding the unique housing needs of these families. In future studies, researchers should use quantitative data and a larger sample size to further investigate housing need in this population.

Finally, our research was conducted with a Canadian sample and may not represent the experiences of families of CMC who live in other countries, such as the United States. Directly comparing housing need between countries is challenging because there are no standard definitions for housing need or housing insecurity in either Canada or the United States. In 2 studies that used similar definitions, 54% of Canadian families reported living in housing need,17  compared with 46% of American families, although the American study did not include affordability in their definition.18  Canada has universal health care, whereas the United States does not, which could exacerbate the financial challenges faced by American families of CMC. However, Canada’s housing market is less affordable than the United States when comparing median housing price to median household income.19 

Housing is a recognized social determinant of health.20  Among CMC, health also appears to be a significant determinant of housing: the health of the child impacts families’ housing preferences and the options available to them. Families report that their housing situation is the result of a trade-off due to a complex interplay between housing preferences and possibilities. Families of CMC could benefit from policies targeting improved access to subsidized housing, improved sources of funding, and regulations allowing families who rent to make accessibility changes. Further research is needed to better understand the impact of household income on housing need and to identify interventions to support appropriate housing for CMC.

We acknowledge the time and expertise shared with us by the caregivers who participated in the study.

Ms Hounsell participated in conducting interviews, designing the interview guide, analyzing and interpreting study findings, and drafting the manuscript; Ms Moore participated in participant recruitment, analyzing and interpreting study findings, and drafting the manuscript; Dr Orkin contributed to the conceptualization, design, and supervision of the study, and was also involved in the design of the interview guide and analysis and interpretation of data; Dr Cohen contributed to the conceptualization, design, and supervision of the study; Ms Netten and Ms Soscia participated in conceptualization and design of the study and design of the interview guide and contributed to participant recruitment; Ms Arje, Ms Weiser, and Ms Zahavi contributed to interview guide design, participant recruitment, data collection, and data analysis and interpretation; Ms Esser participated in participant recruitment, conducting interviews, and data collection and analysis; and all authors critically reviewed and revised the manuscript and approved the final manuscript as submitted.

FUNDING: Funded by the Norman Saunders Complex Care Initiative.

     
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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

Supplementary data