Annals of International Occupational Therapy

Original Research Supplemental Data

Individualization: Perspectives of Occupational Therapists on Complex Family-Centered Care and Family Participation

Tamera Keiter Humbert, DEd, OTR/L; Esther Cargill, MS, OTR/L; Abigail Sanders, MS, OTR/L; Courtney Wood, MS, OTR/L

Abstract

Objective:

Family-centered care (FCC) is promoted as an approach to empower families in making decisions about and implementing care for their children. This type of care highlights the importance of individualization when providing therapeutic services; however, practitioners often are challenged to provide personalized care when diverse and complex family contexts are considered. The goal of this study was to understand how occupational therapists provide individualized FCC within complex socioeconomic and cultural contexts.

Methods:

Eight occupational therapists who provide pediatric FCC completed extensive qualitative interviews. Three levels of cyclical coding were completed. Triangulation of data, member checking, and an audit trail were used to ensure credibility.

Results:

The following major themes arose: “focusing on routines and occupations,” “framing and reframing the family narrative,” “using varied approaches,” “focusing on the mother's role,” and “finding meaning.”

Conclusion:

Despite the challenges of complex family contexts, the participants attended to the needs of the primary caregiver (the mom) and described distinct but variable strategies that they used to address identified roles and occupations. Understanding the dynamics of the primary caregiver's relationship in the family can assist practitioners in providing sustained FCC. The results suggest the need to respond to client and family narratives while using therapeutic strategies that enhance occupational performance. Limitations of the study included convenience sampling bias, limited diversity of the participants, focus on the mother's role, and the use of semi-structured questions. Future research should address the family's perspective on care and greater diversity in practitioner and family dynamics. [Annals of International Occupational Therapy. 2021;4(x):xx–xx.]

Abstract

Objective:

Family-centered care (FCC) is promoted as an approach to empower families in making decisions about and implementing care for their children. This type of care highlights the importance of individualization when providing therapeutic services; however, practitioners often are challenged to provide personalized care when diverse and complex family contexts are considered. The goal of this study was to understand how occupational therapists provide individualized FCC within complex socioeconomic and cultural contexts.

Methods:

Eight occupational therapists who provide pediatric FCC completed extensive qualitative interviews. Three levels of cyclical coding were completed. Triangulation of data, member checking, and an audit trail were used to ensure credibility.

Results:

The following major themes arose: “focusing on routines and occupations,” “framing and reframing the family narrative,” “using varied approaches,” “focusing on the mother's role,” and “finding meaning.”

Conclusion:

Despite the challenges of complex family contexts, the participants attended to the needs of the primary caregiver (the mom) and described distinct but variable strategies that they used to address identified roles and occupations. Understanding the dynamics of the primary caregiver's relationship in the family can assist practitioners in providing sustained FCC. The results suggest the need to respond to client and family narratives while using therapeutic strategies that enhance occupational performance. Limitations of the study included convenience sampling bias, limited diversity of the participants, focus on the mother's role, and the use of semi-structured questions. Future research should address the family's perspective on care and greater diversity in practitioner and family dynamics. [Annals of International Occupational Therapy. 2021;4(x):xx–xx.]

Family-centered care (FCC) is a conceptual framework that practitioners often use when providing pediatric therapeutic services (Committee on Hospital Care & Institute for Patient- and Family-Centered Care, 2012; Rostami et al., 2015). One proponent of FCC surrounds the construct of individualization, asserting that professional services should be tailored to fit the family's specific beliefs, values, and needs (Committee on Hospital Care & Institute for Patient- and Family-Centered Care, 2012; Foster et al., 2013). Individualization entails providing care that is unique to each recipient or family unit and recognizing the permanent influence that the family has on a child's life (Legendre et al., 2011; Rostami et al., 2015). Practitioners are encouraged to respect each member of the family (Miyagishima et al., 2017) and honor the family's decision when determining their preferred level of involvement in the care process (Hiebert-Murphy et al., 2011; Miyagishima et al., 2017).

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?

Methods

Research Design

This study was guided by a phenomenological approach with a hermeneutic lens, where in-depth inquiry is used to understand the experiences and perceptions of individuals of a particular phenomenon (Glesne, 2016). The primary investigator had a decade of experience in early intervention; the remaining researchers were aware of the principles of FCC but had no related clinical experience. We believed that we could identify practitioners who could provide rich descriptions of relationships with families with complex contexts and offer personal insights into how they provided such care.

Procedures

Before participant selection and data collection were undertaken, approval was obtained from the institutional review board at Elizabethtown College. The study followed an intentional and constructed plan (Figure 1).

Methods flow chart. Abbreviations: FCC = family-centered care; IRB = institutional review board.

Figure 1:

Methods flow chart. Abbreviations: FCC = family-centered care; IRB = institutional review board.

Participant Recruitment and Selection

We used convenience, purposive, and snowball sampling to identify and secure participants (Anney, 2014). Included in the study were occupational therapists who (1) had at least 1 year of work experience in pediatrics; (2) provided FCC; (3) were able to identify a current or past client whose family experienced one or more of the following during the therapy process: low socioeconomic status, insufficient financial resources and community support, limited English proficiency, cultural differences, health care beliefs that differed from the therapist's, limited education, or nonnuclear family structure; (4) identified that they had a meaningful relationship with that family; and (5) were able and willing to participate in an in-depth interview. For this study, we did not define “meaningful relationship” for the potential participants and allowed each practitioner to select a family whose relationship the participant perceived as meaningful.

Nine female occupational therapists were identified as potential participants. The therapists were e-mailed a demographic questionnaire to ensure that they met the pre-established study criteria. Participants self-rated their perceived level of involvement with the identified families according to Brown's seven-level hierarchy (Brown et al., 1997). This scale, based on a survey of 302 occupational therapists, showed that the level of involvement in therapy ranged from no family involvement to family as director of service (Brown et al., 1997). The participants identified multiple levels of involvement with the identified families, with scores ranging from level 2 (family as informant) to level 7 (family as director of service), with level 6 (family as team collaborator) reported most frequently. One individual was excluded from the study because of inability to identify a family who had one or more complex contexts where a meaningful relationship was developed.

Participant and Background Information

Participants included female occupational therapists (n = 8) practicing in pediatric settings, including early intervention, home school and home-based therapy settings, and an outpatient clinic. Their experience in occupational therapy ranged from 4 to 32 years, and their pediatric experience ranged from 4 to 28 years. Seven participants identified as White, and one identified as Hispanic, Latino, or Spanish origin. Families often had more than one complex context, and the most commonly reported were insufficient resources and support, low socioeconomic status, and cultural differences. In all of the descriptions, the mother was the primary caregiver. Participants spoke in detail about their relationships with the families, which spanned several months to years.

Data Collection

Semi-structured, in-depth interviews were used to collect data (Stanley & Nayar, 2014). An interview guide was developed to engage participants in reflection about their experience providing FCC to the identified family. Interview questions, developed before data collection, were guided by the research question and concepts explored in the literature (Table A, available in the online version of the article). Before meeting with participants, we engaged in multiple preliminary mock interviews with an experienced researcher to practice the skills needed to collect rich data, ensure the effectiveness of the interview guide, and facilitate consistency of interview styles. Interviews were scheduled based on participant convenience and took place either by telephone or in a location identified by the participant. Interviews were 31 to 95 minutes long and were audiorecorded and transcribed verbatim.

Interview Guide

Table A.

Interview Guide

Data Analysis

Verbatim transcriptions were coded for thematic data analysis (Glesne, 2016; Saldana, 2009). Under the direction of an experienced researcher, three layers of axial coding took place to refine preliminary themes (Given, 2008; Saldana, 2009). For each cycle, all four researchers coded each transcript independently, and only the themes that reached full consensus were included in the final analysis. Data saturation was achieved through the eight interviews.

Trustworthiness

To establish trustworthiness, we took several steps to ensure credibility, including completing multiple mock interviews to refine interview skills, using triangulation with data analysis, performing member checking, and completing field notes during data collection and using the notes during analysis (Anney, 2014). Transferability was supported by purposive sampling and through the collection of thick descriptions that provided nuanced interpretation of the phenomena (Anney, 2014). Dependability and confirmability were established through clear and consistent procedures that are repeatable, as determined by an audit trail and shown in Figure 1 (Anney, 2014).

Results

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

Table B.

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

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

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

Table E.

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.

Discussion

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.

Future Research

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.

Conclusion

Within complex family contexts, occupational therapists perceived that they provided therapy that enhanced occupational performance by listening to the narratives of the families and using select strategies in therapy sessions. The focus of an individualized approach to FCC included attending to the identified occupations of the family and altering the focus as the demands and needs of the family and caregiver changed. In addition, it was vital to attend to the occupational and immediate needs of the primary caregiver and respect her decisions about the care of her child. The participants acknowledged the significance of these relationships on their personal and professional lives.

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Interview Guide

How do you define family-centered care?

Tell me about your relationship with your identified family.

How did you navigate the unique context of this family?

Common principles in family-centered care are collaboration, individualization, and family involvement.

Can you share some times when maybe collaboration happened?

How about individualized care?

How about family involvement?

Were there any times where you faced challenges or conflicts when working with this family? Could you provide examples? How did you overcome these challenges?

Tell me what you've learned from your experience providing family-centered care.

What about from the family you identified?

What advice would you give to a therapist in a similar situation?

Focusing on Routines and Occupations

Family Routines and Occupations[Siblings] did not play well together. So I did a lot of work to help them play better together. I would show [mom] how they could all play together (Participant 5)
[Child] would throw stuff or he'd throw up or gag. Then the older [child] would see him do that and repeat it. And so managing those behaviors was really pretty overwhelming. Dad really saw his role as he could manage one child but not the others. So whichever one [dad] would take [mom] would still have two [children] and make the meal and clean up. (Participant 5)
The older son was great about interacting with the two younger ones. And I [said] ‘give your older son some responsibility and have him [say], Oh, hey, guys, we're going to go to Aunt Sue and Uncle Bob's house’. Include everybody. All of them could probably benefit from knowing where they're going [to dinner], even your daughter. (Participant 6)
Mom would say, ‘Well, you know, we have a family of six. It would be really helpful if [client] could help fold laundry’. So I was teaching him how to fold towels.(Participant 8)
If it was the night that everybody's at their house for dinner, then there were aunts and uncles trickling in and out. And grandma was there and they were doing all the cooking. And so without a doubt, they all came and joined me for my OT session. (Participant 6)
All of the kids in the family were playing video games together. They had one of the music games that has simulated instruments. Those things move a little too fast for [client] to understand and participate. I pulled the sister in…We were trying to figure out how we could help him to participate in that family activity…and when friends came over, how could he still be a part of it? (Participant 8)
Co- OccupationsOne of the things we were working on was [child] taking pills. He wouldn't take pills and he needed to take his medicine for the seizures he was having. He finally started taking pills; [mom] was crying and she was so happy. She sent us a video of him playing at the playground and how excited she was that he could play and he was seizure free. (Participant 3)
The [child] just loved to move around fast. And the dad would sit on the therapy ball and bounce her or he'd go and stand on the trampoline for 20 minutes during a session and just jump with her and she would come alive and smile and giggle. (Participant 4)
We came up with a written schedule, a routine so that [client] he knew exactly what became a part of the evening. He would begin to wind down in a very predictable way. He would take a shower and then, [mom and child] would read for 10 or 15 minutes, and then he would listen to music for five minutes. And then it was lights out so was really a predictable pattern to help him wind down at the end of the day. (Participant 7)
Every Christmas, he makes presents and wraps them and writes out the cards… As a way of giving secretly to the family… He and I will go on Pinterest, and we'll pick out what we're going to make. And he'll pick the colors…so it's coming from him as much as possible. (Participant 8)

Framing and Reframing the Family Narrative

Framing the Narrative -The dad was always working. And the brother would come sometimes too so I would have them play. They didn't play together at all. That was the only goal that [mom] was working on, to get them to play together. Reframing the Narrative- [Mom] wanted him to work on the playground. We have a playground so I would take both boys out with me…so she could learn how to get the boys to play more on their own. And I think too that she didn't know how to play with them either.(Participant 3).
Framing the Narrative - [Dad] actually could put [child] to bed…. it was okay for the month and a half until we got a bedtime routine..'til we could get and establish a routine where he is sleeping through the night. Reframing thee Narrative – ‘If sleeping through the night for [child] is the priority and it's working if your husband takes him up, let it happen. If the priority is really, you want to put him to bed, then that's a different goal and we need to talk about it’ (Participant 5).
Framing the Narrative - And for [the family] it was a new idea to consider that [child] had a developmental disability or autism in this case, because when I started, mom was like, ‘It's just a label that you Americans throw around.’ Reframing the Narrative-[Child's] grandmother had limited English but just kept saying, ‘He be okay?’ and ‘You fix him?’ And…the mom then was like, ‘No, [child] has autism. It's not a label, mom… he has it, but don't worry, we're doing all of these things to help him.’ …I looked to mom and I was like, ‘That was wonderful”. And she was like, ‘I really, I really wanted her to understand.’ It showed that she had come around (Participant 6).
Framing the Narrative – We (mom and participant) were really trying to figure out what exactly was going on, so that we could address it. We were trying to get to the deepest level of the why, of why he couldn't attend a task… because we tried all of the typical things, like all the sensory input, to try to get him to focus. And some of that would work just so much, but he just had this powerful imagination…it was really hard to have [child] provide input, especially when he was younger, because his language wasn't average. Reframing the Narrative- [Child's] language improved and he was able to start to really better explain what his experience was like, so that we could best support him. And that was through a lot of what we did through OT, we started really working hard on giving him words for exactly what he was experiencing. And that obviously was powerful, because if you can understand exactly what someone's going through, you can be a better therapist and really meet their needs.(Participant 7).
Framing the Narrative- He is the third child of four. Mom is a preschool teacher and dad is a self-employed painter…there's two boys and two girls in the family. The oldest boy is now a manager for a [fast food restaurant]. The older sister works for a radio station and then he of course, lives at home. And then he has a younger sister who is a sophomore at [college] is as a nurse practitioner student. It's a close family. Reframing the Narrative- I got to their house on Wednesday for our appointment. And the dad said, ‘our latest challenge is that eight people tried to administer and help subdue him to allow this tetanus shot. And we could not succeed’…They do have some good family friends who have a daughter who's autistic, and they've gone through the same school system, but that family has moved away now. And they would do things together socially, and the kids knew each other… But now, it's not like [mom] has any friends that have had that situation in common. (Participant 8)

Using Varied Therapeutic Approaches

ModelingI couldn't really do a lot of physical handling with him, but I would try to show her with myself. I would get down on my stomach on the floor and tell her how to prop him up. (Participant 2)
I made up a mock place setting. I drew a big circle on it, where the plate goes, a little circle where the cup goes, I outlined the knife, the fork and spoon and the napkin and just laminated a paper napkin right into it…So I would encourage the family to… have him set up a mock table setting just to practice. (Participant 8)
We would go to the park and [child] would stay right beside me. We would do the slides together…I would just set up the rules ahead of time and I would model it for mom. (Participant 5)
Strategies/Problem-solvingThey wanted to take a surprise trip to Disneyland. And so we did a lot ‘let's plan, let's talk it through…It's going to be loud. Let's think of ways that we can help your son get through when you're in a situation and it's loud, and you can't physically get up and leave’. (Participant 6)
I don't know if he sleeps or not…the mom was lamenting, ‘I really need him to be able to settle down and sleep’. I said, ‘Well, let's try some deep pressure’. (Participant 8)
I remember that being a big thing that we talked about, give [child] 10 to 20 seconds to respond if she doesn't just respond. (Participant 4)
AdaptingEach session, each discipline would only write down one thing they wanted [mom] to work on for the upcoming week, so that it wasn't as overwhelming for her. (Participant 2)
Push the bed up against the wall so [child] can't roll out. We put a noodle under the covers to give him a barrier on both sides of him. (Participant 6)
[Mom] would do two steps and I would do one. She would do three steps… Fading it out so she could learn how to get the boys to play more on their own. (Participant 3)
Additional SupportIf there's a family that's really in need of toys or even sometimes clothing, we can reach out to [donation agencies] and see if they have anything, (Participant 2)
[Mom] really understood autism. She really loved when I would bring new research, talk about new research. She wants to know all the research. So there was a lot of education happening.
Reflecting/Adjusting SupportThe families that I'm working with that aren't following the strategies, I'm realizing, ‘Okay, why aren't they following the strategy? Am I giving them too many? Am I focusing on the wrong things, am I putting my own priorities above theirs?’ (Participant 2)
That was my question, who does the baby cling to then, when mom is not here? There's another mother…one of the other moms takes the role of mom. But with her, he's clingy to her, but not so much in the aspect of wanting to be picked up 24/7. He just wants to be in the same room as she's in. (Participant 1).
[Mom and dad] talked about how difficult it was because [child] was getting heavier and bigger, and mom having to go up and down the steps. They talked about moving and they weren't sure where they were going to move…that was a really difficult conversation to have with them, encouraging them to move into this one story home because I really felt like that would be the best. (Participant 4)

Focusing on the Mother's Role

Quotes
We all had goals that we were there for primarily, but there were many sessions where [I was] talking about and addressing something totally different, because other things came up in that day, in that week… So it's not really as rigid as ‘Oh, sorry, that's not what I'm here for’... It's ‘what's the priority?’ and ‘what's meaningful to the family at the time that you're there?’ (Participant 2)
I became the playmate [for the child] because it was a way for [mom] to get a break. And truthfully she needed a break. (Participant 5)
[The mom] would comment quite often that she felt like I was just as much her therapist as I was her son's therapist (Participant 7)
One week, I said to her, ‘so how did it go?’, and she was like, ‘I have to be honest, we're not doing what you're telling us to do at home.’ And for me, that was a huge pivotal moment, because that meant, wow, she trusts me enough to put down her guard. (Participant 3)
Two out of the three grandparents [living with mom] have a lot of health concerns. And so, mom is not only home, trying to take care of her child with autism, but now also trying to deal with her own health concerns. [She] is expecting another child, taking care of her parents, but wants to also get a job. She has a lot on her plate... She's really in survival mode, and adding any additional strategies or suggestions, is not happening. (Participant 2)
They were constantly going to appointments, so trying to help [mom] to navigate that and help her plan those things out and helping her call to make appointments… I think helped to take some of the burden and stress off of doing those things outside of the session... So, if we could help her to call and make appointments, then later on in the day that was checked off of her list, so she could spend time on the floor doing tummy time. (Participant 2)
Mom had an emergency that the toilet [backed up] so she had to go tend to the toilet, and then I just stayed watching and supervising the kids to make sure that they were eating their food or if they needed help cutting any food, or how to use their utensils. Even though [her other children] were technically not on my caseload I was watching and was there to help out if they needed anything. (Participant 1)
The school was trying to get [child] to eat goldfish and [mom] said ‘we don't eat goldfish in our house’. I'm like, ‘what do you want us to work on’? So she'd bring all kinds of foods [to therapy].(Participant 3).
It was dependent on how mom thought I might interpret [comments]. I think if mom thought I was going to take it personally she hid the fact that it didn't work until I pulled it out of her. Versus I could see as we went on, I'd get a message like ‘hey, didn't work, what else can I try?’ (Participant 6)
Authors

Dr. Humbert is Professor, Department of Occupational Therapy, Elizabethtown College, Elizabethtown, Pennsylvania. Ms. Cargill is an occupational therapist, Saygeh Therapy Services, Whitehall, Pennsylvania. Ms. Sanders is an occupational therapist, Kuhl Therapies, Crofton, Maryland. Ms. Wood is an occupational therapist, Holy Spirit Hospital, Camp Hill, Pennsylvania.

The authors have no relevant financial relationships to disclose.

Address correspondence to Tamera Keiter Humbert, DEd, OTR/L, Professor, Department of Occupational Therapy, Elizabethtown College, One Alpha Drive, Elizabethtown, PA 17022; e-mail: humbertt@etown.edu.

Received: January 02, 2020
Accepted: July 02, 2020
Posted Online: August 19, 2020

10.3928/24761222-20200811-03

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