Home modifications are commonly made to address the physical barriers that individuals face within their homes. The effect of home modification on the family unit must be considered when planning and implementing changes. This study explored how transition to a home that was modified to meet an individual's need and according to the principles of universal design affected that individual's roles as a spouse and parent as well as the daily lives of the entire family.
Parents with physical disabilities often face barriers to childcare, household management, and meaningful social engagement that may result in feelings of frustration and loss of autonomy (Kaiser, Reid, & Boschen, 2012; Rasul & Biering-Sørensen, 2016). Kaiser et al. (2012) found that parents with a physical disability caused by a spinal cord injury reported lack of support, imbalance of household responsibility, physical limitations in childcare tasks, and psychological challenges. A parent's physical disability can pose challenges to parenting and affect the dynamic of the entire family unit.
Occupational therapists recognize that health and participation are related to the client's context, including the physical environment and the social environment of the family. Occupational therapy intervention and assessment for home modification consider individual and subjective experiences by addressing the occupations that are performed throughout a typical day and how they are performed (Salminen, Harra, & Lautamo, 2006; Yin, 2014). Law et al. (1996) addressed this complex interaction of the individual and family, their environment, and their occupations with the Person-Environment-Occupation model. These three components are inseparable, interwoven, and interdependent. According to Law et al. (1996), occupational performance describes the dynamic and interdependent relationship of these three factors. This approach helps to define the fit between the person and the environment. Each person has different physical, emotional, and spiritual characteristics as well as personal attributes, such as self-concept, personality style, and competencies. These attributes are expressed through the individual's occupation and the environmental context (Brown, 2019). The environment itself can create disability by limiting participation (Schneidert, Hurst, Miller, & Ustun, 2003).
The interaction between an individual's capacity and the physical and social demands of the environment determines performance for a given task. When environmental demands exceed the individual's capacity, stress or maladaptive behaviors may occur, and the individual cannot maintain the required level of functioning (Clemson et al., 2019; Stark, Somerville, & Russell-Thomas, 2011). A poor fit among the person, the environment, and the activities of daily living can lead to impaired occupational performance, poor health outcomes, and decreased quality of life (Akyurek & Bumin, 2017). Individuals who experience difficulty in everyday tasks and community engagement also experience higher rates of perceived depression and social isolation (Hao et al., 2017).
Home modification has been used as an intervention to improve quality of life by addressing accessibility. Home modification improves individuals' occupational performance by decreasing the difficulty of daily activities and creating a safer environment to prevent falls or injuries that could cause further impairment (Stark, Keglovits, Arbesman, & Lieberman, 2017). Pettersson, Löfqvist, and Fänge (2012) found that home modification led to increased accessibility and autonomy, allowing participants to maintain important roles and participate in valued activities within their homes and in their communities. Most research on home modification involves older adults aging with disabilities, with a focus on safety and fall prevention (Chase, Mann, Wasek, & Arbesman, 2012; Clemson et al., 2019). Limited research has focused on the effect of home modifications on the occupational participation of a family with a parent with a disability.
This case study investigated the changes experienced by one family after their transition to a home that was modified to improve accessibility with the following research question: “How does modifying a home structure for accessibility affect the occupational participation of the family?”
Case study research respects the basic principles of occupational therapy by enabling the investigation of complex systems in real life (Salminen et al., 2006). This study used a single case study design with a mixed methods approach (Yin, 2014) that was designed for two points of data collection: (a) before the move to the newly modified home and (b) 2 months after the move. The home modifications were made by a nonprofit organization in collaboration with an occupational therapist and were based on the principles of universal design to create more accessible and functional spaces in the home. Institutional review board approval was received through Texas Woman's University, and all participants provided signed informed consent.
The case study involved a family of four who moved from a rental home to their own home that was rebuilt for accessibility. The family received their new home from the city in partnership with a nonprofit organization that undertook the remodeling based on the family's needs. The structure of the house was modified with an initial focus on 41-year-old Robert (all names are pseudonyms). Robert had congestive heart failure and was a candidate for a left ventricular assist device. Robert was also undergoing treatment for sores on his left foot in addition to treatment after amputation of the toes of his right foot. His functional capacity varied daily. For mobility, he used a powered wheelchair on days when he was fatigued and a cane or walker on other days. Robert's wife, Liz, was 39 years old and was his primary caregiver. Liz had a history of anxiety and bipolar disorder. They had two children. Their 21-year-old daughter attended college, and their 14-year-old son was homeschooled. At the time of the study, their daughter and their son lived at home.
The first author consulted with a nonprofit organization to design a home for the family. The organization was rebuilding a home that was obtained through foreclosure and abandonment and planned to give the home to the family. Universal design features of equitable use, flexibility in use and space, low physical effort, and size and space for approach and use (Center for Universal Design, 2008) guided the process because of limited interaction with Robert, who was hospitalized periodically before remodeling. The organization provided information on the case, and telephone calls with Liz provided insights into desired use of the space.
The 1,400-square-foot home had a living room, a kitchen, and three bedrooms, with a small common space off of one bedroom. There were two full bathrooms, including one off of the back “master” bedroom. The home also had a large front porch and a back deck that was accessible from the back two bedrooms. Working with the contractor, the first author recommended redesigning the space by opening up the kitchen by placing a half wall between the kitchen and the living room with a built-in table-height surface along the kitchen counter for eating. The kitchen space was reoriented to provide access to appliances, including upper and lower washer and dryer units that were accessible to everyone in the family. Other design features included widening doorways, gutting the “master” bathroom to include a roll-in shower and a free-standing sink, and building a ramp to wrap around the back porch, with access to the side driveway (because the house was on a hill). The doorway to the common space was widened for ease of wheelchair access.
The family consented to participate in the study. They were followed by researchers from before the move to the new home to 2 months after the move. Robert and Liz were interviewed together using the Canadian Occupational Performance Measure (COPM) (Law et al., 2014) along with a semistructured interview guide for specific questions about the home environment. The COPM was administered by the second author to assess the family's performance and satisfaction in desired activities within the context of their environment. The COPM was initially administered while the family was still living in their rental home and again 2 months after they moved to their newly modified home. Although the COPM was designed for individual interviews, it was considered the most appropriate measure to evaluate family occupational performance. To allow Robert and Liz to be interviewed together and express their opinions, the interviewer allowed them to address more than five problems. The children were not interviewed because the daughter was busy with college and the parents did not wish the son to be interviewed directly.
A semistructured interview accompanied the COPM to give the family an opportunity to express concerns that were not addressed by the COPM. Semistructured interview questions included which areas of the home were used most frequently and how the spaces were used. The participants were also asked what they were looking forward to the most about living in their new modified home and what benefits and challenges they experienced after the move. All interviews were audiorecorded and transcribed verbatim, and photographs of the home were taken at each visit.
The study relied on a theoretical proposition that person-environment-occupation fit was necessary for successful occupational participation of the family as a case study. This proposition was tested in the analysis by exploring “how” and “why” questions (Yin, 2014). The COPM data were analyzed with descriptive statistics, with the assumption that a change in score of 2 or greater would represent a clinically important change (Law et al., 2014). Interview data were analyzed according to an iterative process during which the first two authors individually read, reflected, and described data through coding in NVivo, followed by shared analysis and interpretation of the data (Creswell, 2012). Quantitative and qualitative data were compared and supported the developing theoretical proposition on access and occupation. The third author engaged in confirmatory analysis and provided additional interpretation. The participants engaged in member checking of the transcription and preliminary analysis to ensure the trustworthiness of the findings.
Changes in Canadian Occupational Performance Measure Scores
Quantitative data were analyzed by comparing the family's performance and satisfaction scores in three areas of occupation. During the first interview, Robert and Liz listed four problems in the area of self-care, five problems in the area of productivity, and four problems in the area of leisure. The major problem areas listed by the family were related to physically accessing parts of the home, including the entrance, backyard, bedrooms, bathroom, laundry area, and kitchen. The family described barriers related to self-care, caregiving, home management, socializing, leisure, and school activities. Rather than prioritizing 5 occupational performance areas, all 13 problems were rated and reassessed to evaluate the potential broad effect of the home modifications.
The performance score before the move averaged 2.46, and the satisfaction score averaged 1.77. After they moved into the newly modified home, the family's overall performance score increased by 6.31 to 8.77 and their satisfaction score increased by 7 to 8.77 (Table 1). In the area of self-care, the family's average performance score improved by 7 and the satisfaction score improved by 7.75 from before the move to after the move. In the area of productivity, the family's performance score improved by 5 and the satisfaction score improved by 6. In the area of leisure, the family's performance score improved by 7.25 and the satisfaction score improved by 7.5. The only identified problem area that did not show a considerable improvement after the move was access to storage. These scores were consistent with the second interview in which the family described limited storage space for Robert's medical supplies.
Canadian Occupational Performance Measure Problem Areas and Ratings
The interview data showed three major themes: accessibility, opportunity, and relief. Accessibility refers to the physical access enabled by moving to the newly modified home. Accessibility can be seen in Robert's improved mobility into and out of the home as well as his ability to move within the home to areas including the kitchen, laundry area, bathroom, and his son's room. Opportunity refers to social and emotional characteristics that were enabled by the access that Robert and his family now had to the physical environment of their home. Additionally, it refers to the feeling of independence, the ability to socialize, and the family bonding that were brought about by modification of the physical environment. Relief refers to the lifting of caregiver stress that Liz felt while caring for Robert in a home with so many physical barriers. Although accessibility facilitated independence in Robert's self-care, it had a spillover effect on the entire family in terms of social, emotional, temporal, and psychological outcomes.
Accessibility: “I can actually move around”
Modification to the structure allowed Robert the physical access that he required to be functionally mobile around the house. It provided the opportunity to get into and out of the home independently and to access the backyard and the various areas inside the house as a result of wider hallways and doorways, areas that were inaccessible to him in his former environment. This ease of access within his own home resulted in lower stress levels, better sleep patterns, and improved energy levels. As a result of higher energy levels, he was able to take on more household and parental responsibilities. During the second interview, Liz mentioned, “Since he is not tired with just moving around the house, if he feels good, he can drive.” Robert was also able to perform self-care independently; engage in household tasks, such as cooking, laundry, and feeding the dogs; and take on more parental responsibilities, such as performing “room checks” on his children and contributing to his son's homeschooling. Collectively, these improvements appear to have had an effect on Robert's self-efficacy because he could now engage in tasks that were meaningful to him. After moving to their new home, Liz observed, “If he feels well enough that he wants to go fix himself something to eat or he wants to go to the refrigerator, he's becoming a little more self-sufficient. I can see that.”
Opportunity: “Being able to hang out together”
Accessibility within the home opened new opportunities for the family. The accessibility of the home created opportunities for “family time” that facilitated family bonding. During the second interview, Liz mentioned the importance of “being able to hang out together . . . and it doesn't seem like everybody is in their own space.” The family was now able to engage in leisure and social activities that they had given up because of Robert's illness. The extra kitchen space provided a convenient place for the family to spend time together. In the second interview, Robert described their new kitchen nook as being a place to gather, stating, “It is more [time] together from the standpoint of two to three times a day we're eating and . . . watching TV or just talking in general.” Robert commented, “I guess [the children] are more free to come in and sit without knocking over something, without being too crowded.” The family also reported that their new space enabled the children to invite their friends to their home.
Relief: “It takes little bit of the load off me”
Before they moved to their newly modified home, the family's occupations and activities often revolved around Robert's illness, his medical care, and physical assistance with his activities of daily living. Liz, who had bipolar depression and anxiety, conditions that can be disabling but are not physically apparent and may be overlooked, noted, “While I may seem okay, this stuff is traumatizing.” During both interviews, when talking about disabling conditions, the focus was primarily on Robert's needs. However, Liz's role as Robert's primary caregiver often negatively affected her health and sense of well-being.
Robert's improved independence and safety in their new home had a direct effect on Liz and the entire family. Before moving to their modified home, Liz was Robert's primary caregiver while managing her own health issues, including anxiety and bipolar depression. After they moved to their modified home, Liz had the opportunity to take some time off to engage in activities that were meaningful and important to her emotional and psychological health. During the second interview, Liz mentioned, “It takes little bit of the load off me, and it helps mentally to see him being productive for himself.” With Robert taking on more of the household and parental responsibilities, the family was able to create new routines. During the second interview, Liz mentioned, “I feel comfortable enough to take an hour or two or even longer to go visit a friend or get my nails done . . . I'm not worried about any falls.” Liz was also able to engage in activities outside the home, such as volunteering, and she considered taking on a part-time job.
This case study explored the changes that one family experienced after their move to a newly modified home. The study sought to answer the following question: “How does modifying a home structure for accessibility affect the occupational participation of the family?” The family's new home was completely rebuilt based on Robert's needs and the principles of universal design. By using these principles to guide the modification of the new home, the occupational therapist and the nonprofit organization responsible for the changes ensured that the other members of the family would also be able to access and use the spaces within the home. Both the quantitative and qualitative results showed a benefit of home modification. The COPM scores showed a clinically important change in both performance and satisfaction for the family's occupational performance (Law et al., 2014). The findings of this case study were consistent with a systematic review by Stark et al. (2017) that found that home modification improved individuals' self-rated performance capacity by decreasing difficulty and increasing safety.
This case study shows how home modification can affect the fit of the person, environment, and occupation. Initially, Robert had a poor person-environment fit that led to lower self-rated occupational performance and satisfaction. The effects of Robert's physical disability were compounded by environmental constraints and limited opportunities based on his interaction with the environment. Before moving to their new home, Robert's barriers to occupational participation led to stress and isolation. Robert shared that the family also felt the effects of living in an environment that was a poor fit for their family occupations. After moving to their modified home, Robert and his family experienced a better person-environment fit. The new environment enabled occupational participation, bonding, and socialization. They experienced new opportunities that had not been possible when their environment was inaccessible and restrictive.
The effect of home modification on parental roles and social participation of the family is an important finding. Aplin, de Jonge, and Gustafsson (2015) found that home modification enabled individuals to engage in everyday tasks, maintain meaningful roles, and take part in parenting activities. This case shows the same phenomenon in Robert's increased participation in childcare and housekeeping tasks and in the family's new social engagement within the family and other social groups. Consistent with the findings of Aplin et al. (2015), physical modifications to the home created opportunities for social engagement through improved access to the community and the family's new ability to invite friends to visit.
Context is critical to occupational participation and co-occupation (Barnekow & Pickens, 2019). The modifications created opportunities for co-occupation in caregiving, parenting, and socialization. Four interrelated aspects of co-occupation are shown by the experiences of the family through shared physicality, communication, emotionality, and intentionality (Barnekow & Pickens, 2019). During early childhood, co-occupation can facilitate a child's motivation, emotion, and self-regulation (Barnekow & Kraemer, 2005). Although Robert's son was an adolescent, creating space for co-occupation not only fostered meaningful, healthy relationships but also may influence the son's social development (Mason & Conneeley, 2012; Price & Stephenson, 2011).
This case study is important because it focuses on how modifying the physical environment for one person affected the entire family. The results suggest that individual benefits from home modification may have even broader effects on the environment of the home and the family. Robert's improved occupational performance led to enhanced performance capacity and satisfaction in other family members. His increased independence reduced the caregiver stress on Liz, who was able to engage in other meaningful activities. The changes in Robert's occupational performance also affected his relationship with his children, especially his son, and allowed for co-occupation through more joint participation in homeschooling and leisure activities.
Home modifications to address the needs of an individual can affect the rest of the family or others living in the home. Occupational therapists need to include family members or other cohabitants in home assessments to better understand the dynamic physical, social, temporal, and cultural environment of the home. This study also illustrates the benefits of incorporating the principles of universal design into home modifications to meet the needs of others living in the same space. A better understanding of the function of the spaces within the home for each member of the family may lead to improved outcomes for clients receiving occupational therapy services and their families.
Limitations and Future Research
Because it was a case study, the results of this study are valid only for the family in the study and are not generalizable. The effect of the home modification on the children was explored only through the perspective of the parents. Interviews with the children would enrich the findings. Future research could include children and other significant family members who provide support to the family. Long-term follow-up at 6 months to 1 year would better demonstrate any lasting effects of the home modifications. Opportunities for further research include exploring the needs and environmental supports for family occupational participation and co-occupation as well as research on parenting with a disability.
This study described the experience of a family who moved from a home that was inaccessible for the father who had a physical disability to a newly modified home, exploring the effect of home modification on the occupational participation of the entire family. The results showed improvement in the father's participation in self-care, productivity, and leisure as well as enhanced satisfaction in these areas. After the move to the modified home, the mother experienced reduced caregiver stress, the father showed improved engagement in household management and parental responsibilities, and the family experienced improved bonding and socialization. Modifying the physical environment of the home created a better fit between the person and the environment that led to increased occupational participation of the individual and the entire family. The study showed that the benefits of home modifications affect both the individual and the family.
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Canadian Occupational Performance Measure Problem Areas and Ratings
|Problem area||Before Move||After Move|
| Functional mobility within the bathroom||3||1||10||10|
| Access to the bathroom||2||1||10||10|
| Ability to care for the family member in the bedroom||2||1||8||8|
| Access to home entrances||3||4||10||10|
| Ability to leave Robert at home safely||7||3||7||8|
| Safety in the kitchen||3||3||10||10|
| Access to storage||1||1||2||1|
| Space for son to study||2||1||10||10|
| Spending time with son||2||2||9||9|
| Socializing within the home||3||3||10||10|
| Access to the backyard||2||1||10||10|