The Experience of Housing Needs Among Families Caring for Children With Medical Complexity

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).

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.

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).

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.

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).

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.

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.^9–12  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.

CMC

children with medical complexity