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

2020; Volume: 4; Issue: 2 Linguagem: Inglês

10.3928/24761222-20200811-01

2476-1230

Tamera Keiter Humbert, Esther Cargill, Abigail Sanders, Courtney Wood,

Geriatric Care and Nursing Homes

Original Research freeCollaboration: Perspectives of Occupational Therapists on Complex Family-Centered Care and Family Participation Tamera Keiter Humbert, DEd, OTR/L; , DEd, OTR/L Esther Cargill, MS, OTR/L, ; , MS, OTR/L Abigail Sanders, MS, OTR/L, ; and , MS, OTR/L Courtney Wood, MS, OTR/L, , MS, OTR/L Tamera Keiter Humbert, DEd, OTR/L , Esther Cargill, MS, OTR/L , Abigail Sanders, MS, OTR/L , and Courtney Wood, MS, OTR/L Published Online:August 20, 2020https://doi.org/10.3928/24761222-20200811-01PDFAbstract ToolsAdd to favoritesDownload CitationsTrack CitationsCopy LTI LinkHTMLAbstractPDF ShareShare onFacebookTwitterLinkedInRedditEmail SectionsMoreAbstractObjective:Family-centered care supports collaborative, culturally responsive intervention; however, practitioners are often challenged to provide intervention in the presence of diverse contexts and perspectives. The goal of this phenomenological study was to understand how occupational therapists provide care for families in complex socioeconomic and cultural contexts.Methods:Eight occupational therapists who provide pediatric family-centered care completed extensive interviews. Three levels of cyclical coding were completed. Triangulation of data, member checking, and an audit trail were used to ensure credibility.Results:One overarching theme on collaboration emerged: "we're in this together." Subthemes included: "it takes time," navigating therapeutic conversations and highlighting successes," "going above and beyond," "include everybody," and "learning from one another."Conclusion:Despite the challenges associated with complex family contexts, participants used specific strategies to facilitate collaboration when building relationships with families. Understanding complex factors and incorporating an ethos of collaboration can assist practitioners in providing responsive intervention with families. [Annals of International Occupational Therapy. 2021;4(2):76–84.]IntroductionIn pediatric practice, family-centered care (FCC) often is used as a framework for providing services. According to Kyler (2008), "[f]amily-centered care assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to the relationship" (p. 106).Considered best practice, FCC allows for the needs of both the family and the child to be met, with the family's priorities guiding the process through evaluation, intervention, and discharge (Committee on Hospital Care & Institute for Patient- and Family-Centered Care, 2012; Rostami et al., 2015). Collaboration is a component of FCC (Committee on Hospital Care & Institute for Patient- and Family-Centered Care, 2012; Rostami et al., 2015), and the health care provider and the family work together through evaluation and intervention. Individualization suggests the need to consider each family as unique and emphasizes the importance of understanding the influence that the family has on the child's life (Bellin et al., 2011; Rostami et al., 2015). Family participation encourages practitioners to support families in contributing to care and decision making at the level they choose (Committee on Hospital Care & Institute for Patient- and Family-Centered Care, 2012; Miyagishima et al., 2017). The components of FCC are prevalent in the occupational therapy literature and have evolved over time. According to the description of the American Occupational Therapy Association on the role of practitioners in early intervention services: Family-centered philosophy is a model whereby the family defines the priorities of the intervention. It is based on the premises that families know their children best, that optimal developmental outcomes occur within a supportive family and community environment and that each family is unique. This model aligns with . . . the value that occupational therapy practitioners place on collaborating with families . . . to identify a child's strengths and challenges.(Stoffel & Schleis, 2014, p. 2)With FCC, the family context is recognized and honored; however, the complexity of family contexts can add challenging dynamics to the family-practitioner relationship. Complex contexts can include one or more of the following factors: low socioeconomic status, insufficient resources and support, limited language proficiency, cultural differences, divergent health care beliefs, limited education, and nonnuclear family structure (Dunn, 2011; Fingerhut et al., 2013; Russell et al., 2018; Vajravelu & Solomon, 2013). In earlier studies, health care professionals noted greater difficulty developing relationships with families in these complex contexts, suggesting that such contexts can act as a barrier to quality care and ultimately may diminish outcomes (Broggi & Sabatelli, 2010; Casagrande & Ingersoll, 2017; Russell et al., 2018).Recognizing that family dynamics are unique, with and without complex contexts, the literature suggests that families with more complex contexts may require higher levels of cultural sensitivity and responsiveness to their feelings, beliefs, and attitudes (Fingerhut et al., 2013; Lee, 2015; Lindly et al., 2017); more individualized recommendations (Fingerhut et al., 2013; Lee, 2015; Miyagishima et al., 2017); and greater attention to respectful communication (Foster et al., 2013; Michalopoulou et al., 2018).Review of the empirical literature on FCC suggests two major concerns. First, most outcome studies have excluded participants with language barriers or have not clearly represented those with complex contexts. Second, in studies of complex family contexts, both parents and professionals have expressed challenges with family-centered components and the development of collaborative relationships (Lindly et al., 2017). Although studies suggest the qualities that practitioners must embody when interacting with families who have complex contexts, the literature does not describe how occupational therapy practitioners actually deliver such care. Therefore, we attempted to answer the following question: How do occupational therapists carry out FCC with families who have complex contexts?MethodsResearch DesignThe 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, 2016a, 2016c).ProceduresBefore participants were selected and data were collected, approval was obtained from the institutional review board at Elizabethtown College. The study followed an intentional and constructed plan (Figure A, available in the online version of the article).Figure A. Methodology Flow ChartParticipant Recruitment and SelectionConvenience, purposive, and snowball sampling methods were used to identify and recruit participants (Anney, 2014; Given, 2008). 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 family or community support, limited English proficiency, cultural differences, health care beliefs that differed from the therapist's, limited education, and nonnuclear family structure; (4) reported a meaningful relationship with the identified family; and (5) were able and willing to participate in an in-depth interview. For this study, we chose not to define "meaningful relationship" for the potential participants and allowed practitioners to self-select a family with interactions that they perceived as meaningful.Nine potential participants were identified initially. All were women. The occupational therapists were e-mailed a demographic questionnaire to ensure that they met the pre-established study criteria. One individual was excluded from the study because she could not identify a family with one or more complex contexts where a meaningful relationship was developed.Data CollectionSemi-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 with providing FCC to the identified family. Questions were guided by the purpose statement and research question and by concepts explored in the current literature. These were identified before data collection took place (Table A, available in the online version of the article). Before meeting with participants, we held multiple mock interviews with an experienced occupational therapist 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 over the telephone or in a location selected by the participant. Interviews were 31 to 95 minutes long and were audiorecorded and transcribed verbatim.Table A. Interview Guide1.How do you define family-centered care?2.Tell me about your relationship with your identified family.3.How did you navigate the unique context of this family?4.Common principles in family-centered care are collaboration, individualization, and family involvement. a.Can you share some times when maybe collaboration happened?b.How about individualized care?c.How about family involvement?5.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?6.Tell me what you've learned from your experience providing family-centered care. a.What about from the family you identified?7.What advice would you give to a therapist in a similar situation?Data AnalysisVerbatim transcriptions were coded for thematic data analysis (Glesne, 2016b; Saldana, 2009). We performed three layers of axial coding to refine the preliminary themes (Given, 2008; Saldana, 2009). With each cycle of coding, four researchers coded all transcripts independently. Only the themes with full consensus were included in the final analysis. Data saturation was achieved.TrustworthinessTo establish trustworthiness, we took several steps to ensure credibility, including completing multiple mock interviews to refine interview skills, using triangulation with data analysis, completing member checking, and recording field notes during data collection and using the notes during analysis (Anney, 2014). Transferability was supported by purposive sampling and collection of thick descriptions that provided nuanced interpretation of the phenomena (Anney, 2014). Dependability and confirmability were established through clear and consistent procedures that were repeatable, as determined by an audit trail and shown in Figure A (Anney, 2014).ResultsParticipant and Background InformationParticipants included eight female occupational therapists practicing in pediatric settings, including early intervention, home school and home-based therapy, 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 participant identified as Hispanic, Latino, or Spanish origin.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. Families often had more than one complex context. The most commonly reported were insufficient resources and support, low socioeconomic status, and cultural differences. In all of the descriptions of the identified families, the mother was the primary caregiver. Participants spoke in detail about their relationships with these families, which continued over a span of several months to years, and several themes emerged from their descriptions.Theme: We're in This TogetherParticipants noted that they ultimately formed a team with the families to address their socioeconomic, emotional, relational, and developmental needs. The participants were present during family routines, such as at mealtime, during play, while schoolwork was being completed, and on family outings. Often participants observed difficult or challenging moments, including the need for caregivers to attend to multiple children at one time or address the needs of children in distress, and sometimes they observed disagreements between the parents on approaches to therapeutic intervention. Participants described their relationship with the families as an ethos of attention: being careful to meet the family wherever they were and building trust, sometimes very slowly, through consistency and communication. The participants described breaking down tasks and relationship strategies into small steps that could be accomplished successfully over time. They also expressed the need to attend to cultural differences and look for opportunities for their own personal and professional growth (Figure B, available in the online version of the article).Figure B. Representation of Theme and Subthemes on CollaborationSubthemesIt Takes TimeParticipants noted that the therapeutic process develops over time as the primary caregiver-practitioner relationship is built and therapeutic goals are slowly but methodically achieved (Table B, available in the online version of the article).Table B. Thematic Analysis and Representative Quotes: We're In This TogetherSubthemesQuotesIt Takes TimeBuild your relationship first, before you move forward with any intervention.... you can't make any progress on any of that if you don't have a relationship first." (Participant 7)When you first start with a new family...get to know them before building your routine with [the] child...You can't just...barge into someone's home and be like, 'okay, this is how I work and this is what we're doing.' (Participant 1)I think the rapport came from just coming, just showing up. I didn't just give up because they couldn't understand me, or I didn't just ask for them to be transferred to a different therapist because it was challenging. I think [mom] just learned to trust us, because we came…we just kept showing up and supporting her and not only supporting the goals and the plan, but supporting the whole family and trying to help get the proper services in place and get appointments made. (Participant 2)[Mom] had a list of questions already for me. She knew I'd be able to answer her questions or help her get answers she wanted. Whereas before, it was kind of like pulling teeth to get her to let us help her...so I just felt like at that point, I'm like, alright she trusts us now." (Participant 3)Navigating Therapeutic ConversationsSaying, 'Okay, what is your priority for your child? What do you really want to work on? How can we get there, what's a good way you think we can measure this? So each week that I come, you can say, Hey, you know, he did this"…the most important thing is making sure that it's an outcome and a goal that the family actually is interested in." (Participant 4)[Mom] didn't believe that she had the skills to be able to take those two kids to Target. So, one time I went in the car the first time with her. And then the second time, I met her in the parking lot. [The] third time I met her in the store...each time [she would] do a little more herself….Each [time] I did a little less until the very last time I went with her. I just met her in the parking lot at the end. (Participant 5).I think no matter who you work with, as a therapist...you always know what the goals are. But there are a million different ways to get to that goal... I can make any activity therapeutic. (Participant 4)Going Above and BeyondI think I definitely dressed more conservatively on the days that I saw them just out of respect for their culture. (Participant 4)I actually did some research myself on Puerto Rico and the healthcare system because I'll be honest I didn't understand at all what she was telling me. (Participant 3)Include EverybodyShe was worried she was going to have to entertain [her daughter] while I worked with her son. And I was like, "No, they can play together… She's a wonderful role model' … Your daughter is flourishing, here's how we can change it slightly to help your son. (Participant 6)Learning from the One AnotherI learned a lot. I don't know how to even summarize it. I just learned so much about autism [and] how it affects a family dynamic. (Participant 7)I learned so much about their needs and their culture. And it was eye opening." (Participant 6)One of the biggest things that I've learned is you have to listen. So [if] my conversation with the mom lasts 20 minutes or half an hour after the session's over… It might be the only chance she gets all week to ventilate to somebody.(Participant 8)Participants described the therapeutic relationship in terms of a beginning phase, where trust was built and established, and a subsequent phase, where the primary caregiver began to trust the therapist and disclose her concerns and her opinions about the intervention strategies. This initial relationship took weeks or months to develop and required consistency and openness. Participants noted that the relationship developed slowly because of factors that included earlier negative experiences with health care professionals, language and/or cultural differences, an unstable or overwhelming socioeconomic situation, and the newness of the child's health care status. Participant 4 shared: Initially, we're often going into these families' [homes] at such a time of crisis, when they're just getting a diagnosis or their child's been in the [neonatal intensive care unit] for 6 months, and they're coming home and now they're so overwhelmed because they go from this structured environment, with many helping hands, to just themselves. So sometimes it takes a while to establish that relationship.As a therapeutic relationship developed between the participants and the primary caregivers, a noticeable shift occurred in communication styles as the mother started to express her fears, desires, and opinions about the therapy process. Participant 3 shared: One week, I said to her, "So, how did it go?" She said, "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 let down her guard.Participants also communicated that progress in the therapy process often was slow because more pressing issues, such as financial insecurity and the need to meet basic needs, took precedence. Participant 2 said, "I kind of went through a period of feeling really frustrated that [the child] wasn't making any progress. . . . [Another therapist] helped me to reflect on the fact that we've helped [the parent] with so many other things."Participant 5 echoed this sentiment, stating, "Some of that is being humble, and realizing that . . . you're not going to make progress every session." Progress toward therapy goals often was slow, but it also was intentional and was framed by the immediate needs of the family. Participants developed relationships with caregivers gradually and tried to maintain realistic expectations as they addressed the reality of the family's situation. Participant 5 shared the following story: Baby's crying. . . . [The mom] pushes the timer on the microwave, but she messes up and doesn't hit the timer but hits the cook button. The microwave's running with nothing in it, and the dad starts to read from the microwave manual about how bad it is for the circuits in the microwave to be running with nothing in it. [The oldest child] is now crying, [the middle child] is throwing food . . . and I looked at [the mother] and said, "This is not every day?" and she said, "This is every dinner, every dinner."Additionally, progress in therapy often seemed slow because of the nature of the developmental process and the needs of the child as well as the caregiver's desire to see success with the therapeutic approaches. The participants used small steps, or a "little by little" approach, to the goals set by the family. Initially, this approach involved breaking down occupations into manageable activities and building on those activities over time to create routines and ultimately integrate occupations. Participant 5 described this strategy, stating: [The mom] had these lofty ideas of going to the park, but she wouldn't go out in her own backyard and play a game with the kids for 20 minutes. So we started with, "Let's just get out to the backyard" or "Let's just play a game."Participants often used this small step strategy to help families to find an activity that the child and family could complete together successfully. For one participant, this strategy involved the family including their daughter in mealtime to reach a feeding goal. Participant 4 noted: Even though [the child] wasn't eating by mouth and didn't really have a high chair, I said, "You know, your family's so interested in these big meals; you need to include her.' . . . The dad would come home from milking the cows, and they would sit around the table, and they would bring her up [to the table]. She was so much more engaged when she was part of the family. . . . It became such an integral part of their daily morning routine.Navigating Therapeutic Conversations and Highlighting SuccessesThroughout the therapy process, participants expressed a need for ongoing, open, and flexible communication with the family. Therapeutic conversations often were essential moments for the family-practitioner team, when the therapist checked in with the primary caregiver and family, listened actively, and provided a response to meet the needs of the family at that moment. These conversations could be highly sensitive (Table B).All of the participants articulated the value and importance of collaborating with the family on the most meaningful occupations that needed to be addressed; they did not have preconceived agendas. Open communication was vital. Participants also reported discussing with the primary caregivers possible options for therapeutic approaches that could be used in daily routines. Participant 4 noted: We were really on the same page. I think it's because we had such open communication. We really communicated every single week I was in there and in between with texts. If something would come up, [the mom] would text me and ask my opinion. So, I feel we had a great rapport and a great therapeutic relationship and great communication . . . there were never any surprises. And I always gave options. . . . "Here's some things that we can do." I never just said, "You need to do this."At other times, the primary caregiver would be the one initiating the conversation and sharing what approaches she found helpful, and the participants reported honoring those discoveries. Participant 6 shared: [The family] wanted to take a surprise trip to Disney World. . . . I said, "Okay. If you're going to Disney World, let's talk it through. Let's think of ways your son can get through when you're in a situation and it's loud." We did a lot of collaborating. They had my phone number. Every now and then, I'd get a text . . . and [the mom] would say, "We made it through rides today!" . . . and I would say, "That's great! Awesome!"At other times, the participants needed to provide more direct conversation, often affirming the work of the primary caregiver when she seemed to need emotional support. Participant 4 noted: I'll say, "Hey, look how much better she's doing this week. You must have really practiced. Look at how well that went. You know, all those opportunities for practice have really helped her." So, just constantly putting it back on [the mom] and letting [her] know, "Hey, you're doing a great job!"The participants validated the primary caregiver in her role and offered encouragement when she was frustrated or when she questioned her ability to care for her child. Participant 5 noted, "I did a lot of saying . . . "This does not mean you're a bad mom. It just means that you're not ready for [sitting for half an hour and eating dinner]."Beyond open and direct communication, the participants provided hope. These conversations provided an image of what the future could look like for their child and highlighted the successes already achieved. Participant 2 explained: The family asked . . . "Will he be allowed to go to school? Because he has autism, does that mean that he can't go to school?" And [the mom] had no idea what resources were available, what societal norms were for people with disabilities here versus in the country that they're from. So it's been a really unique opportunity for us to be able to support them, even from an emotional perspective, teaching them that, absolutely, he will go to school and he will learn new things. He might do things a little bit differently, but there are opportunities for progress.Going Above and BeyondParticipants were willing to go beyond their regular routines and gain knowledge to accommodate the family's needs and provide the best care possible within the therapeutic context and relationship (Table B). Examples included paying for therapy items personally, adjusting their work schedules and routines, and staying after the therapy session ended to ensure that the primary caregiver understood the therapy goals and intervention strategies. According to Participant 4: I have had families who, all of a sudden, needed to go back to work, and their child's going to stay with a babysitter or grandparents. So my job as a therapist is to continue to support the family, wherever that child is, as long as they're in the area. . . . I can switch my time. My priority is helping [families] reach [their goals]. And if that means that we need to switch schedules, that's part of being flexible . . . and there are some families who have not let me come into their homes because they're embarrassed about where they live. So I came up with the idea of meeting them at the library.When offering intervention strategies, participants took the time to consider cultural differences, such as sleeping and eating arrangements and relationship dynamics. For example, when discussing the need to understand a family's bedtime routines, recognize cultural values, and devise creative solutions to honor the wishes of the family while prompting better sleep routines for the child, Participant 6 explained: [The child] is not sleeping because he is in the bed with five people. But I had to say, "Okay, take a step back. Let's look at this from the mom's perspective." In their culture, that's how they do it. They grow up, and everybody sleeps in the same bed . . . so no wonder he was not sleeping. It was a huge learning curve. . . . I spent a lot of time standing in their bedroom, maneuvering things. I said, "Okay, well, show me how everybody lies in bed. Show me what it looks like. Talk me through how you do a whole bunch of different bedtimes all in one bed."Participants acknowledged that, at times, it was important to extend the therapeutic boundaries to support the caregiver. Participants shared their cell phone numbers and frequently received texts from caregivers. Participant 6 stated: I gave the mom my phone number. I said, "If things come up, just text me. I might not be able to get back to you right away, but I will get back to you within a couple of hours." . . . A couple of times she would text me random questions or concerns that she was having. She also then would text me and say, "Oh my gosh, I tried it, and it worked really well."Include EverybodyTherapy sessions often included individuals within the child's context, such as co-parents, grandparents, siblings, or other nonfamily caregivers. For example, one participant worked with a family who shared a house with four other families, and several of the women were involved in raising the child. Participant 1 stated: Everybody has to be on the same page. I try to get everybody there together. So when I go to that family's home, I try to do it during a time [when everyone] is not so busy . . . so that we could all sit and watch a little bit, even if it's just for 15 minutes. They could just sit with me for 15 minutes, and I could show them certain things.Having mutual understanding of the therapy process sometimes involved educating family members about the child's condition or abilities (Table B). In one scenario, therapy sessions coincided with nights that the family hosted their relatives for dinner. The therapist found herself surrounded by grandmothers, aunts, and siblings, all of whom spoke limited English. In these situations, she was fielding questions translated by the caregiver and including seven adults. Other participants encouraged siblings or other children in the home to participate in sessions, worked with fathers intermittently during the therapy process, and even recognized the value of including family pets. Participant 8 stated: The dog they had, even though he was not a good dog, was not obedient at all, knew that my client was special. He would allow my client to take him into the tub and wash him . . . and the dog would sleep on him because he sensed that [the child] needed deep pressu