The research literature shows the positive influence of FCC on caregivers. Acknowledging the expertise of the caretaker and providing individualized care facilitates family empowerment, self-efficacy, psychological well-being, and personal control (Almasri et al., 2018; Bellin et al., 2011; Rostami et al., 2015). Caregivers also have reported greater perceived quality of care as a result of providing individualized FCC (Hannum Rose et al., 2007) as well as perceived reductions in unmet health care needs and decreased burden of care (Kuo et al., 2011; Magnusson & Mistry, 2017).
Individualized care is imperative when considering complex family contexts, such as low socioeconomic status, insufficient financial resources and community support, limited language proficiency, cultural differences, divergent health care beliefs, limited education, and nonnuclear family structure (Fingerhut et al., 2013; Russell et al., 2018). However, the literature provides limited insight into how occupational therapists actually provide individualized FCC. In particular, families who have complex contexts are not well represented in the empirical literature, and when families with complex family contexts have been included in past studies, both parents and professionals expressed challenges with the execution of FCC (Casagrande & Ingersoll, 2017; Russell et al., 2018). The following research question was posed: How do occupational therapists carry out FCC with families with complex contexts?
Five themes were identified that addressed the research question: How do occupational therapists carry out FCC with families with complex contexts? Identified themes included “focusing on routines and occupations,” “framing and reframing the family narrative,” “using varied approaches,” “focusing on the mother's role,” and “finding meaning.”
These themes emphasize the need for practitioners to take an individualized approach.
Theme 1: Focusing on Routines and Occupations
All of the participants described attending to the valued routines and/or occupations of the identified families. Although the specific areas of occupation varied among participants, collectively, they included eating and sleep routines, feeding, bathing/showering, communication, shopping, cooking, play, safety and child care, medication management, socialization, holiday celebrations, and schoolwork.
Family occupations included events and activities that were shared with various members of the immediate and/or extended family, such as meals, socialization, and holiday celebrations. At times, select occupations were modified to enable the child to participate in occupations with family members. Other times, the focus of therapy was to find ways for the family to feel successful in incorporating the child into ongoing and established routines (Table B, available in the online version of the article).
Focusing on Routines and Occupations
Co-occupations were performed between the child and the primary caregiver. For some families, the co-occupation entailed the caregiver directly attending to the basic needs of the child. For example, as described by Participant 1:
I told [the mom], “You lie on your back . . . you get comfortable and put him on your tummy so that [the child's] face-to-face with you and play with him that way.” . . . Then, little by little, we started adding different textures underneath his belly, and we started doing tummy time with no clothes on [the child]. . . . And then 3 months later, he tolerates tummy time . . . and mom feels a lot better because he's not crying anymore.
In other examples, the co-occupation entailed including the child in the mother's regular routines (Table B). As described by Participant 1:
[The mom] was concerned because she would go to the grocery store and she always had to put the carrier on and keep [the child] in front of her. She said, “There's going to be a time where he's going to get bigger and I'm not gonna be able to hold him in front of me.” . . . She messaged me last week to tell me that she could actually put him in a cart when she goes to the grocery store . . . now, he's actually sitting in the grocery cart.
The overall goal of therapy was to enhance occupational performance in family occupations and co-occupations and/or to use occupations to promote child development.
Theme 2: Framing and Reframing the Family Narrative
According to the participants' descriptions, at times within the therapy process, new perspectives and insights helped to clarify the strengths and challenges of the child and caregiver, the cultural values and habits of the family, the routines that were unique to the family, and the relationships and dynamics of immediate and extended family members (Table C, available in the online version of the article). The participants first framed the family narrative by determining, in general, the most important concern to address with the family in therapy. Reframing narratives required participants to shift the focus or approach in therapy based on new information or understanding, such as new insights into cultural perspectives, family dynamics, or changing goals for therapy (Table C).
Framing and Reframing the Family Narrative
Theme 3: Using Varied Approaches
The description of interventions suggested an array of distinct therapeutic approaches. Collectively, these approaches included examples of (1) modeling occupations; (2) adapting routines, occupations, and environments; and (3) providing and adjusting levels of support (Table D, available in the online version of the article). Modeling occupations involved direct involvement and engagement with select occupations, including adjusting the amount of support provided to enhance occupational performance. Adapting routines, occupations, and environments involved breaking down occupations and routines, analyzing activities and environments, incorporating smaller steps into routines, and ultimately allowing the practitioner to focus on a select aspect of an occupation to maximize success (Table D). Participants offered additional support by providing educational resources, information, and at times, physical necessities. Participants also reflected on the approach of adjusting the level of support needed by determining how much assistance to provide the caregiver and child and when to push the family toward more independence in select occupations (Table D).
Using Varied Therapeutic Approaches
Theme 4: Focusing on the Mother's Role
Although the participants acknowledged the importance of the principles of FCC by attending to the needs of the family, the primary caregiver (the mom) was the family member who was most essential to the therapy process. She was identified as the primary caregiver and was the most involved in her child's care. The participant's relationship with the mom included partnering with her in her daily occupations, working through current situations or identified problems, attending to the family's immediate needs, respecting her choices and decisions about the care of her child, and recognizing the relationship as meaningful (Table E, available in the online version of the article). (Note: We recognize the sociocultural and political implications that the word “mom” may convey. We chose to use this term because this was the term used by all of the participants.)
Focusing on the Mother's Role
The role demands of the moms were extensive, complex, and ongoing. In addition to providing care for their children, the moms also were taking care of other children, sometimes including other children with disabilities; taking responsibility for meal preparation; attending medical appointments; seeking financial resources; co- parenting; and completing other household and maintenance tasks. In some cases, the moms engaged in additional roles, including caring for aged parents and relatives, working outside the home, attending to regulatory and legal issues, and providing home schooling. The complex sociocultural and economic contexts of the families added another dimension of challenge.
Beyond recognizing the multiple demanding roles of the moms, participants expressed the importance of being sensitive to and, at times, directly addressing underlying contextual concerns. In these circumstances, therapy involved addressing specific socioeconomic, emotional, or relational challenges. Interventions could include assisting the mom in making telephone calls, finding additional health care information and resources, coaching the mom in requesting additional support from family members or agencies, building trust with the mom, and assisting the mom in seeking avenues for increased financial or educational support. Although intervention may not be explicitly related to the child's goals, participants often communicated the importance of working with the family, particularly the mom, to address both the sociocultural political contexts and her roles because the positive effects were believed ultimately to benefit the child and the family.
In addition to the complex role demands of the primary caregiver, the participants perceived that the mom sometimes was overwhelmed or frustrated with her daily occupations. This observation was based on direct engagement with co-occupations during the therapy session or conversations with the mom (Table E). During times that the participants described as challenging, therapy often was centered on assisting the mom through her immediate occupations and routines, and at these times, the interventions were direct and focused. Likewise, participants reported that unexpected, pressing needs sometimes arose during therapy sessions. As a result, the participants adapted to the ebb and flow of the mom's immediate responsibilities and assisted in ways that they could. Overall, participants expressed the need to enter a therapy session, assess what was happening that day, and identify the most important areas to address. The participants showed flexibility and a willingness to change the focus of the therapy session based on the immediate needs of the mom and the family.
The primary caregiver, or mom, frequently was the person who was most central to the child's care, implementing therapy suggestions, raising concerns about intervention strategies, and making decisions about the child's care. Across interviews, the participants found ways to integrate the needs of the caregiver within the therapy process and ultimately support the child and the family. The participants acknowledged that ultimately the mom's priorities for the occupations directed the care process.
As part of the therapeutic interventions, the participants provided recommendations and strategy options to maximize the occupations that the moms identified as important. Participants described situations in which the moms would explain that some therapy suggestions could not be followed. The participants frequently noted that the moms initially were reluctant to disclose their wishes for therapy or share their thoughts about therapy recommendations. However, once a relationship was established, the primary caregiver began to state what she would like to work on in therapy and articulate when a certain recommended strategy was not working.
The participants adjusted the therapy plan to respect the mom's priorities, immediate occupational needs, and goals for therapy. The participants addressed the most pressing occupational needs of the mom, who often was balancing multiple roles and responsibilities. The participants focused on the needs of the mom and accepted her role in directing the therapy process and making decisions about the care of her child.
Theme 5: Finding Meaning
Participants found personal meaning through the therapy process and in their relationships with the individual moms and families. Even as participants noted the inherent stress and difficulties of attending to multiple aspects of the family's complex contexts and occupations, they found the experience and the relationship with the family meaningful. Participant 5 expressed:
They were probably one of my most challenging families, but also my most rewarding. Sometimes I think your most challenging [family] is the one you look back on. I'm never going to drive down that road and not think about that family.
Participants found meaning in connecting and forming close bonds with the moms and/or the families, learning something new, and expressing thankfulness for the experience. Participant 8 noted that she found meaning when she was described as “forever friends” by the family, stating, “They've taught me a tremendous amount of things about grace . . . really asking what's important here. And I've let go of some of the details that I used to pay a lot of attention to.” Participant 2 also described how working with the family changed how she approaches and works with other families. She expressed that at times it was “very stressful and frustrating, but in the long run, I feel like it's definitely been one of the experiences that has helped me grow on a professional and personal level.” All of the participants reported that they gained something valuable through their relationship with the family, whether that was a friendship, skills they could generalize to other clients, or a new sense of perspective about their own life circumstances or insights about cultural ideals and differences.
Participant 1 reported that observing the unique dynamics of one family was a new experience for her. She saw the collective benefits of the family structure, and her experience with the family expanded her cultural insights. She explained:
This family is special. It's a three-bedroom house, but there are five families living in it. . . . There are five men, or husbands, and five women. All of the husbands work, and two of the women work. . . . The other three women who stay home are in charge of all the kids, and there are six kids under the age of 5. The three women who are in charge—one takes the role of cooking during the day for the kids, and the other two women are in charge of [the children], whether diapering or teaching them their letters . . . and numbers and names, and trying to get the ones who are starting to speak to say stuff. . . . I think that [dynamic] makes less stress on the other wives to do whatever duties they need to get done.
There was a certain level of reciprocity in these identified meaningful relationships. The participants recognized that they provided an important service to the mom, child, and family, and these relationships benefited their personal and professional lives.
Summary of Results
When the participants spoke about the families, they described what they did within select therapy sessions to emphasize or elaborate on the construct of individualization of FCC. We did not ask for exact descriptions of therapy sessions, but participants' descriptions of therapy strategies provide insight into the varied approaches they used. The ultimate focus of the therapy process was to enhance occupational performance; the ongoing narratives of the family shaped the occupations that were addressed.
The participants also sought to understand and focus on the roles and occupations of the primary caregivers by recognizing the challenges that the moms faced and helping to decrease those challenges or minimize their effect on daily routines and occupations. Participants recognized the important role of the mom in making decisions about the care of her child and incorporated these goals into therapy. The participants identified the relationships with the families as meaningful and described them as reciprocal. The participants expressed genuine respect for the families and described personal and professional benefits of the relationship.
Literature on individualization and FCC highlights the general need to provide diverse therapy approaches based on sociopolitical and cultural views on illness and disability (Rostami et al., 2015), available community resources and allocation of services (Fingerhut et al., 2013; Russell et al., 2018), and physical limitations or restrictions on participation (Wynarczuk et al., 2019). These considerations help to determine the best overarching therapeutic approach for the child and the family, and they suggest the importance of considering the value of individualized intervention approaches. However, our results indicate an even more diverse way to individualize interventions based on ongoing assessment and analysis of daily and ongoing occupational demands of the family and child and as a way to consider and prioritize therapeutic goals and intervention approaches.
The results of this study point to an occupational therapy intervention approach that considers family occupations and child-caregiver co-occupations when providing FCC. Although the participants described some similar occupations and co-occupations, the vast variety (extent and focus) of occupations central to the therapy process became apparent during data analysis.
Additionally, the participants reported that the priorities or focus of the family often changed over time, based on the family's immediate daily challenges. Individualization of intervention strategies required the practitioner to know what was happening within the family. The ability to engage in the narrative of the family and reframe it, when needed, shaped the focus of each therapy session.
The approach taken and the amount of support and assistance provided varied between participants and between sessions. The ability of the occupational therapy practitioner to assess the level of support and assistance needed and then to provide the individualized therapeutic approaches required for optimal occupational performance suggests the need for practitioners to engage a fluid and complex reasoning process.
Only one previous study mentioned such fluid clinical reasoning in FCC. Researchers assessed how developmental interventions were provided to preterm babies and their caregivers while the infants were hospitalized in a neonatal intensive care unit. The occupational and physical therapists observed the immediate occupational performance needs of the infants, their responses to each therapy session, and the intervention approaches used (Legendre et al., 2011). This description of an individualized therapeutic intervention showed an approach similar to what was described in our study in that applicable occupations were addressed (feeding and handling) and parents were supported in reading to and responding to the immediate needs of the infants. However, in our study, the highly individualized approach to therapy included recognizing and considering multiple roles, routines, and occupations while addressing select occupations based on framed and reframed narratives of the family. The participants described an array of therapeutic approaches to enhancing occupational performance for the clients and families.
This study emphasizes the central role of the primary caregiver when therapists involve the family. The participants believed that they navigated the complex contexts of each family by building a relationship with the primary caregiver. Half of the participants noted that the families had dismissed previous care providers based on differences in opinion or perceived disrespect. However, the participants were able to build a relationship with the families and the primary caregivers.
Current literature supports a focus on the mother and her role as the primary caregiver and the effect on FCC (Kim et al., 2017). Our study found that the immediate occupational needs and role responsibilities of the mom were essential to address within the therapy process, and they affected the specific demands on the child and the family as well as issues that arose during therapy sessions. By addressing the mom's identified needs, the participants and mothers were able to focus on the child's goals. Graham et al. (2013) found that occupational performance coaching increased both the mother's sense of competence and self-efficacy and the child's occupational performance. Enabling strategies, including emotional support, information exchange, and structured problem solving, were effective in improving the occupational performance of the mother and the child (Graham et al., 2013). However, no current studies discussed the idea of viewing the primary caregiver as the cornerstone of FCC or the notion that her occupational performance needs were vital to address within FCC.
Finally, limited empirical literature shows a reciprocal therapeutic relationship in which the provider is affected by the therapeutic relationship (Humbert et al., 2016, 2018). In our study, the participants indicated that they derived personal and/or professional value from their relationships with the primary caregivers.
Although the literature recognizes the importance of a highly individualized approach to care, our study did not assess measurable outcomes of the various intervention approaches or the level of goals established collaboratively with the families. Therefore, we do not know whether this particular individualized approach was effective in meeting the goals and priorities of the families.
Implications for Practice
Based on the study results, the focus on roles and occupations was central to the occupational therapy process. Framing and reframing family narratives provided the context to address select occupations, and a variety of strategies were used to enhance occupational performance. When working with families who have diverse and complex contexts, it is necessary to provide individualized care by engaging in ongoing dialogue with the family and developing and effectively using occupational analysis. When working with a family who has complex contexts, involvement of the child's primary caregiver is vital, as is deliberately attending to the occupational performance needs of the caregiver and supporting the caregiver when making decisions about the child's care and intervention strategies.
Strengths and Limitations
Participants in this study had a wide range of backgrounds, including years of experience and diverse practice settings in pediatrics. Semi-structured interviews offered rich descriptions of their time with the families. Additional steps were taken to improve the trustworthiness of the data, including audit trails, member checks, and triangulation approaches during data analysis.
Despite these strengths, the study had several limitations. Participants were selected with purposive, convenience, and snowball sampling. First, the use of convenience sampling may have resulted in sampling bias because researchers recruited individuals based on personal or professional connections. Second, the participants focused primarily on the mothers as the primary caregivers, an identified source of bias. Third, the nature of semi-structured interviews could have affected the results of this study because the format allows for flexibility in questions and probes and could vary among researchers and lead to variance in responses. Although an expert researcher supervised data collection and all of the researchers conducted data analysis, led by an expert researcher, the interviews were conducted by multiple novice researchers who may have used inconsistent interview approaches.
This study introduced the idea of individualized FCC with families with complex contexts and described the approaches used by occupational therapists to enhance occupational performance. Further research is needed to assess how these varied approaches may affect occupational performance and assess the perceived benefit of therapy services by the recipients of services.