Short-term, Intensive Neurodevelopmental Treatment Program Experiences of Parents and Their Children With Disabilities

Abstract

Purpose: 

Parents' perspectives on intervention and functional changes in children were investigated following an intensive neurodevelopmental treatment (NDT) program of 1 to 2 weeks (5 consecutive days per week; 2-4 h/d).

Methods: 

Thirteen parents and their children (aged 1-17 years) with neuromotor conditions participated in a short-term, intensive program conducted by NDT certified pediatric therapists. A mixed-method design was used: a qualitative phenomenological approach of inquiry for parent perspectives and a pre/posttest quasi-experimental design for weekly intervention changes using Goal Attainment Scaling and the Canadian Occupational Performance Measure.

Results: 

Through interviews, parents reported positive experiences with the intensive NDT program. Child participants demonstrated significant improvements in Goal Attainment Scaling (P < .001) and Canadian Occupational Performance Measure (P < .001) scores pre- to postintervention.

Conclusions: 

A short-term, intensive NDT program was perceived by parents as beneficial and supported functional improvements. Valued were expert, compassionate therapists; collaboration; objective goals; home programming; and individualized intervention. Scheduling, financial support, and fatigue were difficulties.

In Brief

Using both qualitative and quantitative methods, the authors found that intensive NDT was perceived positively by parents and promoted increased function in children with disabilities.

INTRODUCTION AND PURPOSE

Intense activity-based practice for children with neuromotor disabilities has been an issue in pediatrics with increased practice recommended during intervention.^1,2 Traditionally, conventional pediatric physical therapy in the United States has been provided as a continuous process throughout the child's growing years with a frequency of 1 to 3 times per week, 30- to 60-minute duration, often limited by health care benefits.^2–4 In the last decade, further therapy options have been offered to parents of children with neuromotor disorders using differing interventions of varying intensities. The rationale for greater intensity for short periods is to provide breaks in intervention for greater participation in other activities.^5,6 Although evidence is limited on optimal service delivery models of intervention most benefiting children, literature has emerged supporting more intensive therapy; however, alternative intensive programs can be expensive both monetarily and emotionally.^2,5,6

Physical therapy intervention for children has been directed by evolving scientific evidence and theoretical frameworks guiding motor development. For many years, pediatric therapy was guided by the neural-maturation theory, based on predetermined central nervous system organization and dominance over reflexive behavior.^4,7 Over the years, the theoretical basis of intervention has evolved to a more encompassing, interactive systems model.⁸ Bernstein's theory of motor organization based on function, the dynamic systems theory, and the theory of neuronal group selection have components important to the theoretical basis of current therapy recommendations guiding intervention intensity.^8–10 Employing contemporary theoretical frameworks and research guiding intervention, studies on increased intensity of therapy intervention appear warranted.^3,4

Current motor learning principles stress the importance of repetition of skills and functionally relevant practice, both vital aspects of intensive intervention to accelerate the acquisition of motor skills.^10–12 Researchers have reported positive results when examining motor skill acquisition using intensive regimens in both early intervention settings^13,14 and with older children^6,15–17 In addition, researchers examining specific task-related activities with increased intensity such as constraint-induced movement therapy for upper extremities, partial body weight–supported treadmill training for lower extremities, and strength training for children with cerebral palsy (CP) have reported favorable results.^18–24 Literature related to intensive intervention indicates that neurodevelopmental treatment (NDT) is also often used.^5,25–29 Although the effectiveness of NDT continues to be debated, researchers specifically examining intensity of intervention using NDT found positive results.^{5,26,27,29–31} Ottenbacher et al³¹ reviewed 37 studies of the effectiveness of NDT for children, including a meta-analysis of 9 studies. He concluded that subjects receiving NDT performed slightly better than those control-comparison subjects not receiving the intervention. Lack of operational definitions, variability in intervention, and absence of measures of important constructs affected by intense therapy may partly explain why Brown and Burns³² found inconclusive evidence in the research in their systematically review of the efficacy of NDT.^2,33 In studies of NDT with increased intensity, 8 earlier studies with therapists using NDT at a frequency minimum of 2 times/week frequency reported positive results.^28,34–40 Favorable results (improved GMFM scores) were found by Bar-Haim et al²⁶ with intensive intervention provided daily, 2 hours per day for a 4-week duration using either NDT or an Adeli Suit. Studies by Tsorlakis et al,²⁷ Trahan and Maloiun,⁵ and Bierman²⁹ used NDT exclusively as the direct handling intervention, while specifically researching intervention intensity. Tsorlakis et al²⁷ examined the effectiveness of NDT intervention with a frequency of 2 versus 5 times a week for a period of 16 weeks using the Gross Motor Function Measure. Larger improvements were found at the 5 times per week intensity. Bar-Haim et al,²⁶ Trahan and Maloiun,⁵ Bierman,²⁹ Knox and Evans,⁴¹ and Arndt et al,⁴² with short bursts of increased NDT intervention intensity, also found improved gross motor function.

The need for further exploration of therapy outcomes from a family perspective is documented.^2,43,44 Using qualitative methodology, researchers have examined specific therapy interventions such as hippotherapy, strength training, and sensory integration from a parent or users' perspective.^43,45,46 Christy et al² used a qualitative design examining parent, therapist, and children perceptions of intensive intervention provided daily, 4 hours per day for a 3-week duration consisting of strengthening, functional activities, and use of an Adeli Suit. Themes emerging included improved motor function, confidence and independence, participation, and stress and fatigue during the program. No known study has implemented phenomenological methods to investigate changes in function from a parent's perspective after an intensive NDT program. Therefore, qualitative exploration of NDT intervention with increased intensity appears warranted. The purpose of this study was 2-fold: (1) to investigate parental perceptions regarding their child's participation in an intensive NDT intervention program using a collaborative approach and (2) to examine differences quantitatively in functional skills of children with CP and other neuromotor disorders after an NDT intensive program using Goal Attainment Scaling (GAS) and the Canadian Occupational Performance Measure (COPM).

METHODS

Design

A mixed-method design was used to determine perceptions of parents and functional differences of children with disabilities participating in a short-term intensive NDT program. Qualitatively, phenomenological methodology was used to explore the lived experiences of the parents of children participating in the intensive NDT program. Quantitatively, a quasi-experimental repeated-measures design was used to compare differences in functional skills pre- and postintervention using the GAS and COPM. Approval was granted through Rocky Mountain University of Health Professions Institutional Review Board. Informed consent was obtained before conducting parent interviews or other data collection.

Participants

A convenience sample of parents and children enrolled in an NDT intensive program participated in this study. The operational definition of “parent” was the caregiver bringing the child to the intensive program and participating in the sessions. Participants in the quantitative part of the study were children (1–17 years old) with a diagnosis of CP or other neuromotor condition affecting social participation and functional abilities who could participate in at least 70% of the intensive program. The final sample included 13 parents (12 mothers and 1 grandmother) and 16 child participants (11 males) with a mean age of 7 years, 5 months. The children were classified using the Gross Motor Function Classification System. The majority (13/16) had a CP diagnosis, 2 had developmental delay, 1 had a chromosome abnormality, and the majority (13/16) had moderate to severe involvement (Gross Motor Function Classification System levels III to V) (Table 1).

TABLE 1: Demographic Information for Children

Procedures

The intensive intervention consisted of NDT according to a specific protocol (Appendix A, Supplemental Digital Content 1, available at https://links.lww.com/PPT/A72). Intervention was delivered by 2 to 3 pediatric physical therapists (PTs), occupational therapists (OTs), or speech therapists (STs), all with extensive NDT training and/or certification in the specialty area of pediatrics. All participants received physical therapy daily, all but 2 participants received occupational therapy, and 6 participants received speech therapy per parents' priorities of therapy. Parents were provided 2 options for the intensive program, either a 1-week or 2-week duration. The majority participated in the 1-week intensive program; only 3 children participated for 2 weeks. Intervention sessions were held in individualized rooms or a cafeteria in a local church. The intervention sessions consisted of direct therapy for 2 to 4 hours/day, 5 consecutive days for 1 week, or for 2 weeks consisting of a total intervention time of 10 days (with 1 weekend off). Therapy was provided daily in the same facility at the same time, with a 1-hour lunch break between morning and afternoon sessions. Interviews were conducted with parents at the conclusion of the intensive program (after the 1- or 2-week session). Interviews were held in areas away from where children received therapy.

Qualitative Methods

A parent questionnaire consisting of 15 open-ended, semistructured questions was used for the qualitative component of the research (Appendix B, Supplemental Digital Content 2, available at https://links.lww.com/PPT/A73). All interviews were conducted by the first author and were 50 to 85 minutes long. Each interview was digitally recorded, transcribed verbatim, reviewed, and checked using the original audiotape. Field notes and reflective data were documented with each interview.

Standards of Validation and Evaluation. Strategies for internal validity were employed as recommended by Creswell,⁴⁷ including triangulation of the data comprised of verification by the participants during the analysis process, repeated observations, and research verification from an independent researcher. A constant comparative approach was used reviewing each interview to contemplate emerging themes for continued exploration in successive interviews. The epoch process by Moustakas⁴⁸ for phenomenological research methods was implemented with the researcher consciously attempting to separate professional biases and prejudgments, and encouraging sharing all experiences both positive and negative to decrease respondent bias, while interviewing the caregivers. Verification of the data was performed with 2 of the 15 participants checking for accuracy of the information at the midpoint and end of the interview process. To strengthen credibility, all completed transcriptions were sent to participants for modifications and confirmation of accurate representation.

Theme development was confirmed with an independent researcher (the third author). Two interviews randomly selected from the 13 interviews transcribed were independently reviewed by an expert qualitative researcher confirming category construction and improving reliability and agreement of theme development. To ensure external validity, rich, detailed descriptions for future comparisons were documented according to Creswell's recommendations.⁴⁷

Quantitative Method

Quantitative data were collected weekly pre- and postintervention using the GAS and COPM. For therapists conducting the intervention, the first author provided face-to-face training on scoring the GAS and COPM prior to each intensive program's initial data collection with an interim reliability check performed after 1 week of intervention. Each therapist conducting intervention during the intensive program collaborated with the family after the initial evaluation of the child to set discipline-specific, functional outcomes (for an example of discipline-specific goals, see Appendix C, Supplemental Digital Content 3, available at: https://links.lww.com/PPT/A74). The outcomes were written using a 5-point Likert scale specified on the GAS. Therapists not directly providing intervention reviewed the goals to ensure that they were appropriate and an accurate reflection of the child's functional levels. The GAS was scored on the first day and after each week of intervention. According to Mailloux et al,⁴⁹ optimal reliability and validity using the GAS are achieved when (1) goals are accurately identified that are important to the family and client; (2) client's projected outcome is identified; (3) objectives are scaled; and (4) performance is rated following intervention. Goals that are specific, measurable, achievable, realistic/relevant, and timed are recommended^50,51 and were planned and implemented during this study. The COPM was explained to the parent (and child if appropriate) during the first session and scored on the first day and after each week of intervention using functional goals from the GAS. The reliability of the COPM has been found to be well above the acceptable range (>0.84), and content, criterion, and construct validity are supported.^52,53

Data Analysis

Qualitative Analysis. Data analysis for the qualitative component of the research began during data collection and was completed after verbatim transcription of all interviews. A phenomenological approach and constant comparative method of all data were used following procedures described by Creswell⁴⁷ and Moustakas.⁴⁸

A computer software program, NVivo 9, was used to assist with qualitative analysis and management of the data. The 13 interview transcripts were reviewed extensively, and significant statements about caregiver's experiences with the intensive program were placed into individual “nodes.” Multiple forms of evidence supported each node. These categories were then reviewed and grouped into “meaning units” or broader themes with evidence supporting multiple perspectives of each category. To establish the reliability of the data, intercoder agreement was established with a second independent researcher also coding 2 of the 13 interviews to validate meaning units and core themes.

Quantitative Analysis. For the quantitative aspect of the research, statistical analyses using the SPSS 15.0 data-processing program were performed on GAS and COPM data. To compare weekly GAS pre- and postintervention scores, the scaled scores were converted to T-scores. The Wilcoxon signed ranks and paired t tests were used to determine the mean difference between pre- and posttest GAS and COPM scores each week among the individuals receiving the intensive NDT program. The COPM scores were based on a 10-point Likert scale, requiring nonparametric statistical analysis. Although the GAS scores are on a continuous ratio scale, nonparametric statistics were used because of the small sample size and the unmet assumptions of normality and homogeneity of variance required for parametric statistics. For all quantitative measures, a statistical significance of α < .05 was set with a 95% confidence interval level and power of 0.80 used. Power analysis indicated that a sample size of 20 was needed on the basis of unpaired 2-group comparison of pre- to-postintervention change scores with a 1-tailed hypothesis.

RESULTS

Qualitative Results

A total of 26 descriptions or meaning units labeled as “invariant constituents” by Moustakas⁴⁸ were revealed and 7 themes emerged. The themes were categorized into parent (P), child (CH), and combined (C) child/caregiver effects.

• Theme 1. Effects of increased intensity of intervention were viewed as highly beneficial by caregivers.

All 13 parents viewed the NDT intensive program positively. Many expressed the program met their child's needs and goals quickly compared with more traditional (weekly) therapy. Feelings of hope and excitement with expectations emerged from seeing functional improvements in their children with the intensive program.

• (CH) Before the end of the therapy she was sitting up on her own which was one of our biggest goals.
• (CH) Positively I would say—just being able to see (my son)—take a few steps independently with his cane.

Some parents expressed benefits of an intensive program compared with traditional therapy.

• (P) Because I'm thinking maybe if we did the intensive—then we wouldn't necessarily need to see the PT, OT every week—if we could keep it going.”... “I think (regular therapy) is very monotonous. We do this every week and—the intensives—I mean—he's just getting so much out of it.
• (C) I think it gives them a push. I think he gets successful and the feeling that he can do it more—and then overall—he accomplishes more in this week than he might accomplish—in like—a month of regular therapy.
• (CH) You have carry-over—and that's when you get to see more intense progress.

• Theme 2. Unique qualities of the therapists such as expertise, being a good teacher, having compassion, good listening skills, and providing hope were essential keys to the success of the intensive program for caregivers.

Unanimously, parents reported the importance of personal qualities of the therapists providing intervention including demonstrating expertise and professionalism, being passionate and flexible, showing kindness with providing hope, having positive attitudes, and bonding/working well with the individual child. Years of experience and expertise in NDT handling as well as explanations with handling were viewed as valuable to parents and contributed to the success of the program.

• (CH) He just seemed to respond very well to this type of therapy (NDT) so that's why we're here.
• (C) They're all NDT trained and they know very well what they are doing.
• (C) They (the therapists) were very professional, they were very versatile, flexible, they were caring and sympathetic to his needs. They were thorough; they were friendly and helpful and I think generally concerned about children with disabilities—wanting to make a difference.
• (P) One of the things that I think is helpful for me as a parent is to sit down and specifically come up with ways within our daily schedule to implement the recommendations.

Parents shared the importance of therapists reading the child's cues, listening well, and sharing mutual respect.

• (C) I felt like everyone was really gentle in terms of their approach, and getting to know her.... The way they engage her in play...no one is pushing her around too hard. It is yielding to what she can do—but yet-waiting her out—having the patience.
• (C) You guys are nice and you know—you listen to the parents—you guys listen to the child—so that's the most important part—listening to the children and their body—and how much they can take—and how much can you push each child.
• (C) There's a lot of respect with everybody that is here—from the parents, to the kids, to the therapists... Everybody kind of has this mutual respect for who you are, why you're here and what you're doing.

• Theme 3. Team collaboration was highly valued by the parents.

The majority of the parents discussed the importance and positive aspects of team collaboration used throughout the NDT intensive program. The cointervention by different disciplines was highly valued and included PTs, OTs, and STs working together while involving the parents, outside therapists, and other caretakers.

• (C) You're part of the team, and your child is part of the team. Just everybody collaborates.
• (C) Their collaboration with each other has been very impressive. They each consult with each other what they're trying to accomplish... I've observed that visually and verbally too—I feel like they're both working in the same direction.
• (C) They (PT, OT, and ST) all worked together and talked to each other about him. So they were all getting each other's feedback so that was nice—feeding off what the other person had to say and what to do and what to work on.

• Theme 4. Collaboratively setting objective, realistic goals to improve functional abilities of the child was an effective strategy for goal attainment and highly valued by parents.

Setting realistic goals for charting individual progress is a challenge for therapists and families. Goals provide focus of intervention and objective measurement for the therapists, caregivers, and clients. Discussing expectations of the intensive program and setting goals prioritized with the family were motivating and highly valued by parents.

• (C) (It's important to) identify a need and break it down into measurable, attainable steps to which to succeed at—to reach a solution to that need.
• (C) We had those two goals and they were very important for me to take care of him—his personal care and everything... When you set and have a goal that you know can be done—you look at your kids and see—he will do it. You have to be realistic—and the therapists that you have right now can help you with that.

• Theme 5. Home programs with therapists teaching intervention techniques were viewed as essential for carry-over in the home and other settings.

All parents involved in the NDT intensive program viewed education of the caregiver and providing home programming as fundamental to the success of the program. A hard copy of a PowerPoint presentation with written suggestions and pictures of intervention ideas was provided by all disciplines at the conclusion of the intensive program and viewed positively by all 13 parents. Families especially liked having their children's pictures performing activities with a narrative to assist with carry-over from the intensive program to home and school.

• (P) I'm very impressed with the home program and the PowerPoint... I think it's wonderful to be able to have the pictures with the written materials to share with therapists and school staff.
• (C) It's helpful for people who don't know what to do with her.... So that people who were taking care of her—whether it was a nurse or her grandparents or the babysitter—so instead of sitting around and playing with the same thing—or watching T.V.—they could grab the (home program). It also helped keep us, as parents, structure, and following through with things we had worked on.

• Theme 6. Roadblocks caregivers encountered in the delivery of intensive therapy services with insurance coverage and scheduling affected their children's participation in the intensive program.

Many parents expressed difficulties with obtaining therapy they considered necessary for their children with a disability. Many families did not have insurance coverage and paid for the intensive program out-of-pocket. Parents expressed logistical challenges such as time commitment, work schedule conflicts, and sibling activities. Participating was tiring for families.

• (C) Parents can't afford this. The price of therapy now-is—it's outrageous.... And these kids need it. And they thrive so much from getting this—that it's so sad when they're not able to get it because someone gets a piece of paper and says—“no-denied.” That's how it feels.
• (C) We just couldn't afford it last year... he had (specific) surgeries and...we're always dealing with so much at one time...we saved our pennies.
• (P) The hardest is the time commitment and the planning... we pretty much had to put our life on hold with everything else—with the other kids, with my schedule and what I needed to do to take care of things—that nothing really got done this two weeks... The kids weren't able to do things at certain times because we had to be here and so it affected the whole family.
• (C) (the hardest is) Just the scheduling. Rescheduling and keeping everybody scheduled...he has a brother... It's logistics of it all... We just do the summer one—because of school for him at this age...now it's really tough for him to miss that kind of school.
• (C) (The NDT intensive program) is exhausting. But it's also very motivating.

• Theme 7. There's no cookbook answer; each child and family is unique with different strengths, difficulties, and preferences. Intervention must be based on individual needs, priorities, and abilities of the family and the child with the disability.

Strong opinions about therapy and other services for their children were expressed by parents. They identified strengths and difficulties of caregiving with unique qualities of their children shared. Caregivers discussed dissatisfaction with delivery of services outside the intensive program setting for meeting the needs of their children with disabilities. Parents appreciated being involved in the intensive program and meeting other parents of children with disabilities having similar challenges.

• (C) I resigned my job to be able to be with him (at school) 24/7 because of these extensive medical needs.
• (C) Being (in therapy) once a week for 1 hour—and watching what a therapist was doing—was not enough anymore for me.
• (P) We've only had therapy in the school and we've not participated. As parents—guardians—we've never been included in his therapy.... Those evaluations and reports (from school) are very, impersonal—compared to—to what's given here.
• (C) I meet new people and we learn we have more things in common... I think it was cool too that—(another boy in the intensive)—his buddy played together like a little play date for moms.
• (C) I really liked that they asked me questions (in the intensive program) and realized that—I just kind of don't sit back (laughing)—I'm really in it with him.
• (C) I think this is a really good learning experience—for parents...you actually get to meet other parents who have this—I think when you're out in the real world—you look for—there's another parent that has a child with special needs. You know—you look for that...like can anybody else relate? And here you come in...you can exchange notes—you can say—I've been through this—or you can do this... so I think one thing is for parents to bond.

Quantitative Results

A total of 16 participants received intensive NDT intervention. The majority of participants were involved for a 1-week intensive sessions; 3 participants participated for 2 weeks in the intensive sessions. Significant (P < .001) improvements were found in both GAS and COPM mean scores following NDT intensive weekly intervention (Figures 1 and 2; Tables 2 and 3). One participant completed 70% of the intervention sessions, attended the pretesting of the COPM, but was not present for posttesting. An intention-to-treat analysis was performed with no change in statistical significance. No attrition of subjects occurred.

Fig. 1: Goal Attainment Scaling scores pre- and postneurodevelopmental treatment. This figure is available in color in the article on the journal website (www.pedpt.com) and iPad.

Fig. 2: Mean Canadian Occupational Performance Measure scores (performance/satisfaction) pre- and postneurodevelopmental treatment. This figure is available in color in the article on the journal website (www.pedpt.com) and iPad.

TABLE 2: Pre- and Post-GAS

TABLE 3: Pre- and Post-COPM Scores

DISCUSSION

Evidence from this study supported a short-term intensive NDT program for improvement of functional skills when a collaborative approach focused on realistic, quantitative goals of primary importance to children, caregivers, and therapists. Caregivers perceived intensive therapy to be beneficial, and significant functional improvements were documented. The GAS and COPM were found to be clinically appropriate and effective tools for experienced NDT-trained clinicians to document quantitative changes in discipline-specific goals. Negative aspects shared from caregivers included difficulties with insurance coverage, logistics, and fatigue for the child and family during the intensive program. Although a small sample size affected data analyses, statistically significant changes were found in functional skills.

Qualitatively, informants perceived positive benefits from increased intensity of intervention. Themes 1 and 4 from the qualitative results of this study are similar to findings by Trahan and Malouin⁵ and Christy et al,² suggesting that intensive intervention was beneficial for rapid goal attainment and improved motor function. These findings are in accord with those reported by Piper et al,⁵⁴ suggesting that “expecting a 1-hour weekly therapy session to have a measurable impact on motor development may be unreasonable.”^54(p222) Quantitatively, researchers have suggested intense activity-based practice and high-intensity intervention is effective for improving function in individuals with neuromotor disabilities.^{2,11,27,29,41,42} In contrast, researchers have found improved GMFM scores independent of increasing intensity of intervention or intermittent versus continuous therapy.^6,55,56 Questions continue regarding the significance of intensity of intervention and the type of intervention provided. The significant findings of this study corroborate 6 studies involving high-intensity NDT intervention.^{5,25,27–29,42} The high frequency of intervention (5 days a week) and high total amounts of intervention (10–20 hours/week) in this study were similar to Storvold and Jahnsen,¹⁷ Bierman,²⁹ and Christy et al² and may contribute to the positive findings with this study.

Informants participating in the intensive program reported positive effects from focused, realistic, objective goals for charting functional progress (theme 4).^17,29 Bower et al¹⁶ examined intensity of intervention and corroborated the need for specific, measurable goals. In contrast, King et al⁵⁷ reported that therapists continue to place less value on formal measurements, despite current emphasis on evidence-based practice and the importance of using appropriate, standardized outcome measures. For this study, appropriate functional outcomes were scrutinized. The GAS was recommended to measure therapy that may not be captured or measured by existing (quantitative) devices⁵⁸; therefore, it was found appropriate for this study. The GAS and COPM required minimal skill training, were found to be relatively easy to administer by therapists of different disciplines, and included parent and therapist collaboration for goal writing.

The importance of having a knowledgeable and collaborate team was a significant finding (themes 2, 3, and 5). Parent satisfaction from involvement in the program, collaboration, and home programming has been documented in other studies^14,59 and supported by literature on family-centered care.⁶⁰ Parents discussed unique qualities of therapists including their expertise, while providing high-frequency, short-duration intervention (theme 5). Arndt et al⁴² found similar results, using expert clinicians.

Negative effects of intensive programs, including stress on family and children related to travel, scheduling, time commitment, and physical fatigue of children participating, were corroborated in this study (theme 6).^2,6 The time commitment for participation affected not only the child and the parent but the others in the family. Families in this study often expressed added difficulties with insurance coverage and finding appropriate services for their children (theme 7).

Combining both qualitative and quantitative research can be challenging because of sampling strategies. This study had 13 informants, a large sample size for a qualitative study. Yet, limitations of the study from a quantitative study perspective included small sample size and nonrandomized participant selection, a sample of convenience was used. Although quantitative changes pre- to postintervention on the GAS and COPM were statistically significant, no control group was used, all participants received NDT intervention, and previous experience with NDT intervention was not tracked. Therefore, caution is required interpreting these results.

Law et al⁵² suggested that a change of 2 or more points on the COPM indicates a minimal clinically important difference. The NDT intensive weekly COPM pre- to postperformance and satisfaction scores had more than a 2-point difference indicating a minimal clinically important difference, supporting the quantitative findings. However, another limitation of this study is the short time period of intervention (1–2 weeks) and absence of follow-up data for maintenance of skills.

In qualitative research, knowledge of the phenomenon to be researched not only assists in the qualitative process but also introduces bias. The first author implemented Creswell's⁴⁷ and Moustakas'⁴⁸ qualitative recommendations for trustworthiness to limit bias, but realistically, biases exist. The PI has been a pediatric NDT trained therapist for 24 years and participated in the intensive program conducting all interviews. All therapists participating in the intensive program had biases since NDT was the intervention provided by the trained therapists and used with intensive frequency. The first author was part of a collaborative team providing intervention for 3 children included in the study. Although epoche methods for bracketing personal experiences to consciously separate professional biases were forefront and used, these limitations must also be considered.

The quantitative component was an important aspect of the study. Data collected from outcome measures such as the GAS and COPM provide an example of goal setting and examining pre- and postintervention scores.

Further research is recommended on short-term intensive intervention programs using NDT and other interventions. With careful consideration of the operational definitions of intensive intervention and NDT, longitudinal studies examining retention of skills and changes in participation levels are recommended.

In light of the changes in the last 2 decades in prioritizing family-centered services, Rosenbaum discussed “how much richer our studies have become with the active input of families.”^61(p99) Recommendations by caregivers to decrease stress and fatigue with intensive programs would be of interest. Using phenomenological methods, many questions could be explored regarding therapists and families' perceptions of intensive therapy, home programs, education processes, caregivers' needs, and therapy service improvement.

CLINICAL PRACTICE IMPLICATIONS

Specific clinical recommendations for caregivers and clinicians from our findings include the following: (1) consider short, intensive NDT therapy from skilled clinicians for quicker improvements in functional outcomes; however, caregiver stress and child fatigue are factors to be considered. (2) Write objective goals focused on activities prioritized by the family and child. (3) Use easily implemented objective outcome measures, such as the GAS and COPM. (4) Collaborate to improve functional performance. (5) Establish trust and empower caregivers with knowledge including home programs.

CONCLUSIONS

Short-term intensive NDT programs with focused, functional, intervention goals are highly valued by parents. Rapid goal attainment results from an intensive model; however, potential barriers to involvement include financial constraints, fatigue, and difficult logistics involving work and family schedules. Collaboration among therapists and families when coupled with appropriate education and specific home program suggestions is considered a critical priority by parents.

ACKNOWLEDGMENTS

The authors thank Dr Rona Alexander and Linda Kliebhan, founders of Partners for Progress, who initiated the NDT intensive program, where this research was performed. Appreciation is also extended to pediatric therapy colleagues providing intervention and data collection assistance and to the exceptional families and children whose contributions to the study were immense.