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RESEARCH REPORTS

The Journey: Parental Expectations and Perceptions of Therapy Services for Children With Down Syndrome

Early, Diana PT, PhD, PCS; Thompson, Mary PT, PhD, GCS; Simpkins, Susan PT, EdD; Luedtke-Hoffmann, Kathleen PT, PhD, MBA; Poskey, Gail OTR, PhD

Author Information
doi: 10.1097/PEP.0000000000000905

INTRODUCTION AND PURPOSE

In the United States, children with Down syndrome may receive occupational, physical, and speech-language therapy services from a variety of providers and in different settings during their development.1 Parents of children with Down syndrome often navigate a complex network of educational and health care settings, services, and providers. Service providers benefit from understanding parental expectations of therapy services because recognizing expectations contributes to parent satisfaction and positive child outcomes.2–5 Identifying parent expectations for therapy services contributes to increased parent engagement4 and avoids frustration or conflict between parents and therapists.3

Understanding parents' perceptions of the services their children receive provides a “mirror” for service providers to gain feedback on the quality of the rehabilitation services they deliver.6 In previously published studies, researchers described parents' perceptions of therapy services for children with cerebral palsy.7–11 Parents have described both positive and negative aspects of their therapy experiences. Parents place a high value on the caregiving aspect of therapy.7 Parents identified the importance of having compassionate and supportive professionals who provide positive communication.8,11 Parents recognized improvement in motor skills, increased confidence, and ability for greater community participation as benefits of an intensive physical therapy intervention for young children with cerebral palsy. Parents, however, had concerns about the stress and fatigue that results from increased frequency of therapy services.9 Additionally, parents acknowledged the challenge of navigating the healthcare system as a negative aspect of their therapy experiences.8

Previous studies using qualitative methods to explore parent engagement and expectations included children with Down syndrome as part of a larger group of children with developmental disabilities.4,5,12 Parents had expectations of organizations, therapists, and of themselves. Parents expected therapists to have knowledge, technical competence, and communication skills. Furthermore, parents' expectations evolved and changed parents' perspectives over time.5 Alignment of expectations between parents and therapists emerged as one of several factors that influenced parent engagement.12 Other researchers have used qualitative methods to explore parents' perspectives on programming and community supports for children with Down syndrome.13,14 While these studies exclusively included parents of children with Down syndrome, none had the primary purpose of evaluating their perspectives of rehabilitation services.

Multiple studies have examined parents' perceptions of therapy services for children with cerebral palsy and developmental disabilities. However, a gap in the literature exists specifically related to the perceptions of parents of children with Down syndrome. Children with Down syndrome do not have the same needs as children with other disabilities because their impairments and activity limitations differ.15,16 Consequently, parents' expectations and perceptions of therapy services may also differ. Therefore, the purpose of this study was to describe parents' expectations and perceptions of the therapy services that their children with Down syndrome received.

METHODS

A qualitative descriptive approach17 was used to identify parental expectations and perceptions of the therapy services received by their children. Procedures used in grounded theory, such as constant comparison and concurrent data collection and analysis, served as tools to reach data saturation.17–19 The authors did not use a preexisting framework to analyze the data; instead, they generated a description of the data in a logical progression by developing themes from codes and categories. The qualitative descriptive approach allowed for presentation of parents' expectations and perceptions in a straight-forward manner through use of methods common to other qualitative research approaches.17 This study received Institutional Review Boards approval from Baylor University Medical Center and Texas Woman's University. The authors obtained informed consent from all participants prior to initiating data collection.

Participants

The authors recruited parents or caregivers of children with Down syndrome whose child (age 6 months to 21 years) had received therapy for at least 3 months at any point in childhood. The authors deliberately sought participants who had varied experiences across multiple service settings for purposes of data triangulation and transferability. As the study was qualitative, the authors purposefully chose mostly parents of younger children because children with Down syndrome primarily receive habilitation services when they are young and tend to age out of services as they grow older. The researchers had the greatest interest in parents with experience in the current therapy delivery system. Authors purposefully chose a few parents of older children to capture their perspectives because they had more experience in their child's development and therapy services. Additionally, their perceptions may have been similar to or different from those parents with younger children.

The initial convenience sample consisted of parents whose child at some point received inpatient or outpatient services where the first author worked. To minimize researcher bias and allow for data triangulation, additional parents were recruited through snowball sampling. Participating parents told other parents about the study and encouraged them to join the focus groups, resulting in a larger sample from which the authors purposively selected participants.

Procedures

Data collection occurred in 2 phases: in-depth one-on-one interviews followed by focus groups with other parents. All interviews and focus groups took place in the participants' homes or in other private locations using semi-structured interview guides (see Supplemental Digital Content 1, available at: https://links.lww.com/PPT/A374). The first author audio recorded all interviews and focus groups. The focus groups were also video recorded to capture facial expressions, gestures, and interactions. The first author transcribed all recordings verbatim for analysis with facial expressions, gestures, and interactions imbedded into the transcripts at the point they occurred. Expressions and gestures helped convey emotion behind spoken words and disagreement or agreement (eg, a head nodding when another participant spoke) between focus group participants.

Data Analysis

All authors were involved in data analysis, subsequent sampling decisions, and interview guide modifications. Initial interview findings informed subsequent focus group data collection. The first author completed interviews and preliminary analyses sequentially to identify emerging ideas and categories that informed further data collection.18–20 The 5 authors together discussed ideas identified from the initial interviews to develop focus group questions, driving the theoretical sampling for the focus groups. The first author took field notes throughout the research process, using memoing to record thoughts and ideas that were shared with the other authors.19 NVivo21 software was used for data management.

Coding occurred in 3 stages (open coding, axial coding, and selective/focused coding) as described by Corbin and Strauss.18 The first author performed open coding of interview transcripts manually. Manual coding facilitated identification of repeated ideas that needed further development.18,19 Two external coders (not therapists), both experienced in qualitative research methods, also assisted in manual data coding. Inclusion of coders who were not therapists increased objectivity and aimed to reduce researcher bias. Initially, the first author and the 2 external coders conducted open coding by carefully reviewing the transcripts and highlighting words, phrases, and quotes containing similar ideas or expressions. Using these highlighted quotes, 3 of the authors identified related ideas and grouped them into categories (axial coding). Finally, the same 3 authors organized the themes into categories summarizing parents' expectations and perceptions of their children's therapy services (selective/focused coding).18,19 All 5 authors reviewed the categories and themes that emerged, and they reached consensus on the labels describing the themes. The authors used this constant comparison method within and across participants and phases. An example of the 3-step coding procedure is in Table 1.

TABLE 1 - Examples of Coding Process
Quote Codes Category Theme
“I think with the therapists we've had have been pretty open, the conversation's been pretty open. I've never felt like they didn't think that we were the expert or that they didn't think they were the expert. I think it was just a mutual respect and understanding.” (Pete) “... And it's always been I feel like a team effort.” (Anna) Parent and therapist working together Partnership “Who's driving the car?”
“I would be much more likely to feel like I could speak about something that my child was doing and point it out to the physician, pediatrician because I am with him all the time. And she's only seeing him for that 20 minutes or however long in the office. And so in that respect, I felt a lot more like the expert on my child who's asking the expert on the medical stuff questions. Versus the therapist where I felt like you're seeing him with his therapy and on a regular basis and so I want you to tell me how the progress is going and how because it's more of an ongoing frequent relationship.” (Marie) Parent as expert Feedback from therapist
“And you felt like that person was an expert, (points up toward ceiling) and you just wanted to see someone who could take away some of the unknown, and when you take away the unknown, it kinda helps you to feel comfortable.” (Baxter) The unknown; parent perceiving therapist as expert Therapist guiding parent
“Communication is a huge deal. OK ... Let me know what you're doing with my kid ... The way in which they did it. . . They were very loving and supportive ... constantly in communication with me.” (Kim) Frequency of communication, manner of communication Communication regarding child's performance “What I really need for this trip”
“You know, they know what they're talking about ... I mean there's sometimes with all across the board, all therapies, people talk sometimes a little over my head, a little bit about medical terms or stuff that like—wait a minute—I don't know what you're talking about. Talk in layman's terms.” (Samantha) Difficulty understanding medical terms; method of communication Subtheme: “Tell me how to get there.”
“Just tell me my kid's OK, you know you kind of want someone to validate, hey you know, I've seen this; I know it's scary for you ... Hey you don't know anything especially first time parent AND Down syndrome ... am I doing the right things?... What do I need to do? You just have no clue. (Throws up hands) It's just like a void.” (Baxter) Need for validation; fear; desire for information Education about how to help child

Analysis continued throughout the entire writing process and included evolving poetic and graphic representations. Direct participant quotes and theoretical models are common in qualitative health research. However, creative expression of scientific observations through short linguistic metaphors and more complex poetic and graphic illustration are additional ways to present qualitative results and were used in this study.22–24

Scientific Rigor

The authors ensured scientific rigor of this qualitative descriptive study by using strategies to establish the trustworthiness of the findings. Trustworthiness developed through the elements of dependability, credibility, confirmability, and transferability. The authors established these elements through strategies including triangulation, member checking, peer review, and use of an audit trail.19,25 For example, data triangulation occurred by comparing data from the individual interviews with data from focus groups of parents whose children received services in different settings. Investigator triangulation took place through inclusion of research team members with different professional and qualitative research backgrounds.19 Parents reviewed the study findings and confirmed the metaphor and the graphic illustration (member checking).19 Additional examples of strategies that contributed to scientific rigor are in Table 2. Supplemental Digital Content 2 (available at: https://links.lww.com/PPT/A375) is a glossary of terms used in qualitative research including those related to scientific rigor.

TABLE 2 - Strategies to Ensure Scientific Rigor and Contribution to Trustworthiness
Strategy Example in Present Study Contribution to Trustworthiness
Triangulation Parents of children who received therapy services in different settings participated in both individual and focus group interviews (data triangulation). Parents of children who were different ages also provided different perspectives. Investigator triangulation occurred by having research team members with different professional and qualitative research backgrounds. Transferability, dependability
Member checking The researchers presented study results to parent participants who provided validation of study findings. Transferability, credibility
Peer review Two peer reviewers and 2 authors with qualitative research experience identified similar significant statements and themes in the transcripts. Confirmability
Audit trail In this study, the researchers' use of an audit trail to record reflections, impressions, and biases provided reflexivity throughout the study. The second author served as a peer reviewer throughout the research process and used the audit trail to track study progress. Dependability, confirmability

RESULTS

Seventeen parents of a child with Down syndrome participated in this study. The first author interviewed 8 of the parents individually. The other 9 parents participated in 1 of 3 focus groups. Two fathers took part in 2 of the focus groups; the remaining 15 parents (88.2%) were mothers. Two focus groups (1 and 2) included mothers and fathers of the same child. The average age of all participants was 39.4 years (SD = 6.1). A description of the participants, their children, and the settings where the children had received or were currently receiving therapy is in Table 3. The average age of participants' children (n = 15) at the time of the interviews was 5.5 years (SD = 5.3). The therapy settings listed include those in which services were provided at any time in the child's development. All but 1 of the children participated in therapy in multiple settings. One child participated in only speech and occupational therapy, but all other children received physical, occupational, and speech therapy at some point in development. More than half of the children (n = 9) continued therapy in 2 or 3 different settings at the time of data collection.

TABLE 3 - Therapy Disciplines, Settings, and Service Model by Parent Participants' Child
Therapy Settings by Model
Parent Pseudonym Participant Number Parent Age Child Pseudonym Child Age Early Intervention Education Medical
Samantha (2) 38 Joshua 23 mo ECI PPS HH, OP, IP
Mindy (FG2) 40 David 30 mo ECI HH, OP
Pete and Anna (FG2) 45,41 Gus 31 mo ECI PPS HH, OP
Will (3) 41 Dill 3 y ECI OP
Kris (4) 40 Jack 3 y ECI PPS OP
Leigh and Baxter (FG1) 33, 35 Jake 3 y HH, OP
Carolyn (FG3) 40 Harrison 3 y ECI PPCD OP
Sara (1) 25 John 3.5 y ECI PPCD HH, OP, IP
Marie (FG1) 43 Andrew 3.5 y ECI PPCD
Christina (FG3) 37 Zachary 4 y ECI PPCD OP
Kelly (FG3) 29 Alex 4 y ECI PPCD OP
Mary (7) 48 James 5 y ECI School OP
Fannie (8)a 42 Brian 8 y ECI PPCD, School OP
Kim (5)a 45 Brittney 16 y ECI PPCD, School OP
Susan (6) 47 Jessica 20 y ECI PPCD, School OP
Abbreviations: ECI, early childhood intervention; FG, focus group; HH, home health; IP, inpatient; OP, outpatient; OT, occupational therapy; PPCD, preschool program for children with disabilities; PPS, private preschool; PT, physical therapy; School, school environment, kindergarten through high school; SLP, speech-language therapy.
aParent had limited recollection of settings where her child had received therapy.

Overview of Findings

The metaphor of “The Journey” emerged as a concept in all interviews completed with the parents in this study. This overarching, participant-derived image provided a central theme to the study and was a means to introduce other concepts. The results that follow are organized by the interrelated themes and subthemes identified in the interviews and focus groups. Three major themes comprise The Journey: Where are we going? Who's driving the car? What I really need for this trip. This last major theme has 4 subthemes: Why are we going this way? More time together makes the journey better. I need you to go with me. Tell me how to get there.

The Journey

Parents repeatedly used the metaphor of The Journey to convey their complex experiences and referenced the term as they discussed their perceptions of therapy services. Parents' expectations and perceptions about The Journey were unique to each family and varied depending on other factors including the age of their children, their family situations, and the birth order of their child with Down syndrome. Samantha recognized, “It's probably more for me ... this whole journey of having a child with Down syndrome and having 2 older children that are typical children.” Parents' perspectives at the beginning of their journey differed based on whether they had a prenatal diagnosis of Down syndrome. Parents with a postnatal diagnosis felt the need to “catch up.” All parents at the time of diagnosis researched Down syndrome on the Internet, conferred with other families who had children with Down syndrome, and/or read books on the topic. As they began their journey, all parents had an emotional limit to the amount of information they could absorb immediately after their children were born. Mary said, “I can tell you when we were at the hospital and James was born and they gave me this package ... I was like, ‘I don't want to see anything.’ I don't because at that point it was very overwhelming.”

The Journey metaphor expanded as parents talked about the destination, route, and driver on this journey. They described being fairly certain that their children would reach the same developmental milestones as other children—the destination. However, parents also knew that their children might progress more slowly than other children and do things in their own time. Parents in one focus group described this phenomenon metaphorically as “the scenic route” (Kelly).

Kelly: Yes ... but I don't think people realize that we're on the scenic route here.

Christina: We definitely are on the scenic route here.

Carolyn: ... because I know he's going to do these things. It's just going to be a slower pace ... He's going to do it when he's ready.

Kelly: Yes. He'll do it when he's ready.

Christina: Top down, we're driving through the country.

Carolyn: We're on the scenic route.

Parents of younger children looked to therapists for guidance in their journeys and trusted that therapists knew the way to the family's and child's destination. Parents of older children had more confidence about the direction of their journey.

Where Are We Going?

The idea of parents' expectations for their children can be expressed by the theme of “Where are we going?” Parents said they wanted their children to do the things other children do. Christina remarked, “You want your child to be as normal as possible.” Parents of younger children indicated they were very focused on their children's achievement of motor milestones, and walking was a universal issue. Parents whose children were not yet walking were very concerned about their achievement of this milestone. Two parents in different focus groups described the walking milestone as a “separator.” One mother observed that the fact her son could not walk fostered social isolation. One remarked, “I think for us, a huge part of it is just socially. Everybody else has been walking for a long time, and he doesn't seem to mind, but I think it does really separate you from your peers.” Her family had occasionally made choices not to attend social functions because they knew her son would not be able to play with other children of his age. One parent noted that when people asked whether their son was ever going to walk, “It just stings ... it's a soft spot, you know?” Parents in another focus group identified walking as the most obvious skill for a child to achieve. Kelly observed, “You know you shouldn't care about what anyone else thinks, but we do. People are ... judgmental.” Christina commented, “I understood the world around us would perceive him differently once he walked.”

Who's Driving the Car?

The theme of “Who's driving the car?” describes the concept of parents' perceptions of themselves (or therapists) as experts. Baxter noted, “You're the therapist ... and I'm trusting you know how to get there. You know, you're driving the car; I'm in the passenger seat, and let's go to this place.” The parents who felt most comfortable with the term expert were those who had older children or who had early childhood intervention (ECI) services for the longest period. As one mother noted, she was responsible for relaying information about her son's developmental progress to the other therapists who came to the house. She perceived herself as an expert in this situation because she was a link between all her son's therapists. A mother and a father whose son had ECI services felt they were treated as experts; they believed that they were part of a team of equals that included therapists. Nevertheless, several parents emphatically described how, when their children were infants, they did not feel that they were the experts on their children. One parent said, “I never, ever have felt like an expert on my child until probably— I don't know.” Instead, parents looked to therapists as the experts on their children because they believed therapists knew about Down syndrome. One mother described the distinction between therapist and parent as expert best. She said, “I've only experienced this 1 child with Down syndrome 24/7, and I feel as a therapist, you have—although it's my child—you have more experience than I do with not my child but with Down syndrome.”

What I Really Need for This Trip

The elements of therapy that parents valued most emerged in the theme of “What I really need for this trip”. The subthemes included Why are we going this way? (anticipatory guidance), More time together makes the journey better (frequency of visits), I need you to go with me (relationships with therapists), and Tell me how to get there (communication).

The subtheme of Why are we going this way? describes the concept of anticipatory guidance. Anticipatory guidance refers to information provided by medical professionals to parents to help parents manage situations of everyday life related to the health of their children and to aid parents in making decisions that affect their children's future health.26,27 Knowledge about The Journey ahead (potential future experiences) could be classified as anticipatory guidance. For instance, many parents wanted therapists to explain the sequence in which their children's developmental skills would occur. Kelly reflected, “I think that it would be healthier to have a road map and say this is what you should expect next.” Christina agreed: “I like those, when you look, when you take the ages off. But if you just look at the sequence, the road map—I like that—I have those charts, and I check them off.” Parents also wished that they had a guide for when children should start each therapy discipline.

Anticipatory guidance included assisting parents in developing goals for their children. Although parents said that therapists often asked about their goals when performing evaluations, many parents acknowledged that they could not identify specific, realistic goals for their children. Several parents referred to “big goals,” such as walking, but needed guidance from therapists about how their children would achieve those goals. Leigh noted, “I just again bring up walking, like that was my big goal, but there were about thousands of steps before getting to that, of things that had to be accomplished. I didn't know those things ... So, I think that communication of what's your overall goal. And the therapist also providing, ‘Well this is my knowledge of what I think is important for your child to do which will lead to this.’” Many parents preferred that therapists provide them with ideas of appropriate goals and then allow parents to add to the therapists' suggestions. Marie said, “I had a lot of trouble articulating the goals. They would ask us on a— I don't know that it was monthly but probably quarterly—they said, ‘What are you goals for your child?’ And I just had no idea, and I feel like, well, give me some options.” (Throws her hands out.) Several parents expressed how much they appreciated therapists who collaborated with them and helped them prioritize their goals. Parents valued having “real-world” goals for their children and preferred having home-based therapy activities that easily fit into their daily routines.

Parents highly valued the frequency of their children's therapy sessions; most parents believed that more therapy was better, the subtheme of More time together makes the journey better. None of the participants complained about having too much therapy. One parent reflected, “Then you're scared, and you'd go 5 times a week to have someone tell you, ‘Hey, things are going good, let me show you.’” Only a handful of parents felt that what they did at home was effective enough to help their children after they received instruction from their therapists. Parents viewed therapists as professionals, as the experts on therapy, and that any additional time their children spent with their therapists was beneficial. Another reflected, “I think for me, the place that I'm in right now, the most important thing is— I think—frequency.” When asked what they might have changed about their children's therapy services, many parents said they wished that their children could have had more frequent therapy sessions.

Parents also valued the relationships they had with their children's therapists; this idea is expressed in the subtheme of I need you to go with me. The concepts of relationship and trust emerged repeatedly in the data. Parents respected their children's therapists and wanted therapists to respect them and their time: “If I'm paying someone to do something, I want them to do it harder than what I'm going to do it on a more consistent level at home. So, every minute is so valuable to me. I want them to completely use every single minute of every single half hour or hour visit.” Parents wanted therapists to see their children as individuals with unique strengths. They wanted their children to enjoy therapy and did not want them to become overly frustrated. They wanted therapists to invest in their children and to be committed to seeing their children succeed. “They were invested in my child, and to me, that is one of the key components of the therapists is to be invested and to learn the child.”

Even if parents did not perceive themselves as experts on their children's therapy, they wanted therapists to consider them valuable, equal members of the team. Parents desired validation from therapists for what they were doing with their children. Some parents stated that the repeated validation was one reason they wanted more frequent therapy sessions. They needed someone to tell them that they were doing things right and doing the right things. “You kind of want someone to validate, ‘Hey, you know, I've seen this, I know it's scary for you,’” and another parent followed with, “You're doing good job.” This relationship and investment in their children resulted in a partnership with the ultimate outcome of parents becoming experts on their children. “We expect expert advice that we can then take and start doing ourselves, and we will become the expert on our child” was Leigh's observation.

Parents desired open and honest communication with their therapists. They also wanted communication and instruction from therapists to be in understandable terms, summarized in the subtheme of Tell me how to get there. “We don't want anything that's more complicated. I think someone that can work on the level of the therapist and use their expertise with the child and use what they have as their knowledge, but don't tell me, in your words. I don't know what it means. Tell me what I need in my language at home, and I think that the best exercises are the ones that we can use in our daily life.” Parents also valued instruction that was specific to their children's needs. Parents who had received large volumes of information about general developmental milestones did not use the information because it was not specific enough to their child. “I want someone to be very specific.” and “a therapist that can be specific and write things down that we can do at home.”

Parents wanted not only instructional communication but also empathic communication from therapists. One parent described a time when she cancelled her son's appointment because he was very sick. She desired more than a terse text-message reply from the therapist. One parent shared:

I wish some of them had been like, “This must be really hard for you.” Or “Is he feeling better?” I had to cancel therapy because he had a 103 (degree) fever, and they'd be like ... “ok.” Well, I would send a lot of texts back and forth, which I love 99% of the time. But I feel like his therapists don't necessarily know how challenging it is ... I have hard days. I have hard weeks. I just–I feel like the therapists sometimes lose how hard it is for the parents and just knowing that would go a long way.

Parents openly shared that they felt scared, overwhelmed, and fearful because so much about their children was unknown to them, especially when their children were very young. “We just can't look too far ahead ... It just gets too overwhelming.” “Just more overwhelming to me. I feel like I need to research and say, ‘ok, what's the best kind of therapy we should be doing?’” Parents looked to therapists to give them direction and to assure them that they and their children were going to thrive. One of the most moving remarks made by a father summarized parents' perspectives: “You just want someone who's that light in the darkness to help you kinda see your way.”

The authors developed the poem Route 321 (see Supplemental Digital Content 3, available at: https://links.lww.com/PPT/A376) and figure (see Supplemental Digital Content 4, available at: https://links.lww.com/PPT/A377) to summarize and graphically represent study data, providing a poetic and a visual illustration of parents' expectations and perceptions. Parents verified the poetic and graphic results of the study. Table 4 includes parent expectations in the context of clinical implications for therapists providing services to children with Down syndrome.

TABLE 4 - Parents' Expectations Inform Recommendations for Therapists Providing Services for Children With Down Syndrome
What Parents Expect: Themes What Parents Said What Therapists Can Doa
Communication “Communication is a big deal OK ... Let me know what you're doing with my kid.” (Kim) Establish 2-way communication and encourage shared decision-making to promote family engagement.
Tell me how to get there “We want information. I haven't met one parent who hasn't been like searching for information to help their child.” (Leigh) Fill in parents' knowledge gaps about Down syndrome and development, including what is known about progression of gross motor skills in children with Down syndrome.
“We can't look too far ahead ... It just gets too overwhelming.” (Samantha) Identify areas for anticipatory guidance and timing of guidance not to exceed parents' limits to process information.
Partnership “Most parents expect to be taught what to do, like different exercises and specific things that are catered to their child.” (Leigh) Promote parents' perceptions as competent partners in their child's therapy.
  • Ensure parents fully understand how to implement child's home exercise program using strategies such as teach back

  • Involve parents in therapy sessions and acknowledge parents' efforts to engage and motivate their child.

Who's driving the car? “I think with ... the therapists we've had have been pretty open, the conversation's been pretty open. I've never felt like they didn't think that we were the expert or that they didn't think they were the expert. I think it was just a mutual respect and understanding.” (Pete) Reinforce parent's contribution to child's progress.
  • Regularly attending therapy sessions

  • Following home program recommendations

Therapy services “They would always ask me what my goals were, and I always felt like they shared the same goals as me, and they would show me things to help reach those goals.” (Carolyn) Collaborate with parents in the development of their child's plan of care to:
  • Prioritize child's therapy goals

  • Determine frequency of services

  • Develop a home program that fits family's routine

What I really need for this trip. “I think for me, like right now, the place that I'm in right now, the most important thing is ... I think frequency.” (Carolyn) Engage in regular discussions with parents on their child's progress toward goal attainment, particularly toward ambulation goals.
aBased on their pediatric therapy experience, the first and third authors holistically derived “What Therapists Can Do” from the comments made by parents and the resulting themes.

DISCUSSION

To successfully meet parental expectations, providers must first know the parents' expectations and understand parents' perceptions regarding their children's care. In this study, parents' expectations reflected tenets of the well-known model of family-centered care.28 This study therefore adds credibility to the existing theoretical model and confirms its validity among families of children with Down syndrome. Individual and group interviews revealed that parents expect to engage in a partnership of care with their children's therapists while on this journey. This partnership, centered on the child, is one of the foundations of family-centered care.29 The data further confirmed the dynamic nature of this partnership. In the beginning of their journey, parents wanted therapists to “drive the car” and tell them where they were going and how to get to their destination. In a family-centered approach, parents and providers work together to plan and implement the services a child receives.28 This partnership works best when both parents and therapists understand the principles of the approach.30 Because family-centered care involves collaboration between parents and providers, understanding parents' expectations and perceptions of services provides a window into how successfully the framework is implemented.

Within the framework of family-centered care, parents are considered the experts on their children.28,30,31 Participants in this study spoke in a way that suggested they knew things about their children that therapists did not. However, not all parents embraced or took ownership of the term expert; they perceived therapists as experts (Who's driving the car?). Some parents' perceived lack of expertise in therapy services echoes Hinojosa's32 findings that parents believed therapists had skills and knowledge they did not possess. MacKean et al33 reported similar results: parents did not necessarily perceive themselves as experts because they often felt overwhelmed.

The fact that parents did not unanimously view themselves as experts begs the question: How well are therapists succeeding in their efforts to incorporate principles of family-centered care into their practice? MacKean et al33 noted that while family-centered care was a theoretical model developed by researchers, parents and therapists are responsible for the model's implementation. Both this study and the study by MacKean et al33 suggest service providers may need to redefine the word expert in the practice of family-centered care. Although parents acknowledged knowing about their children, they did not unanimously sense that they were experts on Down syndrome. Therefore, when working with parents of children with Down syndrome, therapists can help parents identify what they do know about their children: their strengths, preferences, and motivating forces. Therapists could intentionally use the term expert when they talk to parents and specifically acknowledge parents' roles as experts.

The parents in this study described other elements of family-centered care (eg, collaboration, communication, and individualized therapy interventions)28 they experienced and valued. Both the present study and the study by MacKean et al33 convey the idea that parents want to work together with therapists to care for their children. In The Journey metaphor, therapists have a role in teaching parents to “drive the car” as they navigate therapy services for their children. Initially, parents felt overwhelmed and fearful of the future and particularly valued the frequency of therapy services (More time together makes the journey better). As parents gained more information and saw that their children progressed toward their milestones, they expressed a greater sense of empowerment and confidence.

This study reinforces an expectation of service providers in family-centered care: communicating in an understandable manner28,33,34 (Tell me how to get there). Parents in this study viewed communication as “paramount” (Kelly). In a meta-analysis by Almasri et al34 including 3 qualitative studies about family-centered care, the theme of communication emerged as an important factor in parents' perceptions regarding the family-centeredness of services. Parents in other studies8,11,33 conveyed the idea that the interpersonal aspects of their therapy services were as important to them as the outcomes of their children's therapy. Parents in this study also highly valued their relationships with therapists built not only on good communication but also on professionalism and information exchange.

Parents in this study desired to have a roadmap (a sequence of milestones) but not an itinerary (specific ages or dates when they should achieve those milestones). They wanted to receive information individualized to their children that helped them establish appropriate developmental goals. Parents in the present study also desired for therapists to respect them and their time and to access services in a manner that was most convenient for their family. Individualized information, respect from service providers, and access to services are also elements that characterize family-centered care.28 Therapists can individualize children's care by offering parents education that is targeted to their children and their families. Furthermore, when parents cannot implement the suggestions that therapists provide, being nonjudgmental and seeking ways to enable participation in home programs will maintain open communication and maximize parent engagement. Additional clinical recommendations are provided in Table 4 to equip therapists with suggestions for practice based on the data.

Supplemental Digital Content 4 (available at: https://links.lww.com/PPT/A377) is directed to therapists and represents a summary of parental perceptions and themes that emerged from this qualitative study. Kurtz and Loewenstein's35 work in memory and cognition suggests the transfer of useful knowledge across domains—in this case therapy and creative arts—can be a powerful cognitive tool for learning. The knowledge gained through this study may help therapy service providers better meet the needs and expectations of parents of children with Down syndrome.

Limitations and Opportunities

The main limitations in this study relate to transferability (generalizability) and potential bias. This study focused on parents of children with Down syndrome and not children with other diagnoses. Therefore, the findings in this study may not be generalizable to therapy services for other populations. Future studies could address parents' perceptions of therapy services in focused settings (eg, acute care and inpatient rehabilitation) and with children who have other diagnoses. Furthermore, most of the parents who participated in this study had younger children (average age of 5.5 years). While the parents of older children with Down syndrome had similar perceptions as parents with younger children in this study, not all parents of either younger or older children with Down syndrome may hold similar perceptions. Future studies could address parents' perceptions of services available for older children, adolescents, or adults with Down syndrome. Because parents in the sample group resided in only one US metropolitan area, perceptions of families who live elsewhere could vary from those described here because of different resource availability. Perceptions could be biased because many of the children received care at some point in time at the hospital-based facility where the first author worked. Additionally, 2 focus groups included parents of the same child, and this factor may have limited the variety of perspectives in those 2 focus groups. Subsequent research could include more families from each model or setting and from varied geographic regions.

CONCLUSIONS

Parents of children with Down syndrome described their expectations and perceptions of therapy services using the metaphor of The Journey. Although not all parents participating in this study perceived themselves as the experts on their children, a key component of family-centered care, they conveyed that they care about relationships built on mutual respect and want therapists to communicate in understandable terms. While the authors did not initially intend to focus on family-centered care, the results confirm that parents of children with Down syndrome value the precepts of family-centered care studied previously among other pediatric populations.11,30,33,34 Equipped with the findings of this study and integrating available clinical resources, physical therapists can be better prepared to help parents navigate The Journey of therapy services for their children with Down syndrome.

ACKNOWLEDGMENTS

The authors would like to acknowledge and express appreciation to the parents and therapists who participated in this study. They would also like to acknowledge Nikki Hull, PT, DPT, and Beth Niesman, PT, DPT, for their assistance with focus groups. Robin Looper, MA, and Linda Garner, PhD, RN, served as coders, and Mary Early contributed her technical writing expertise. The authors would also like to recognize Randy Webb of Webb Creative Design for his assistance with figure design in Supplemental Digital Content 4 (available at: https://links.lww.com/PPT/A377).

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Keywords:

down syndrome; professional-family relations; qualitative research; rehabilitation

Supplemental Digital Content

© 2022 Academy of Pediatric Physical Therapy of the American Physical Therapy Association