Family Involvement in Occupational Therapy
Introduction:
There is a multitude of services that are available to children with special needs, which can be difficult for families to navigate. Occupational therapy is one of the many services that are available to children who qualify for special services. Occupational therapy focuses on helping people improve and maintain daily life activities. This can range anywhere from helping someone learn to brush his or her teeth to sensory integration. Occupational therapy can be provided at home, in hospitals, in private clinic, and at schools and address a myriad of issues.
According the Child Trends Databank, the number of children who require services for special needs has increased dramatically over the past decade. Early intervention is key to improve a child’s development and diminish any developmental delays. In order to have the most effective therapy, families need to be involved. In Bronfenbrenner’s ecological theory, the family is the second most important context to understand an individual’s development. It is vital for families to be a part of therapies because they know a child’s natural environment best and they will be providing care for that child every day. In this paper, I will provide a brief literature review, policy perspectives, and insights from those practicing in the field to explore the importance of incorporating families into occupational therapy.
Literature Review:   
As stated before, many children require special services to encourage development. In fact, the number of children requiring Individualized Education Plans, or IEPs, has increased from six percent to 11 percent between 2001 and 2012 (Child Trends Databank, 2015). One of the services supported by IEPs is occupational therapy. Occupational therapy is the practice of improving an individual’s daily living skills. In pediatric occupational therapy, not only do occupational therapists work with an individual child, they also must work with the families. In Chapter 8 of Best Practice Occupational Therapy for Children and Families in Community Settings, the author states that “services for children and families begin with an individualized plan that outlines the desired outcomes within a family-centered model (Dunn, 2011). In order for a child to receive the best care, families need to be involved in the therapy practice. This paper looks into the importance of integrating families in occupational therapy.
The first study examined was “Enabling occupational performance of children through coaching parents: Three case reports” (Graham, Rodger, & Ziviani, 2010). In this study, researchers wanted to explore if the use of parental coaching in occupational therapy had any effect on the family and/or child receiving therapy. To answer this, the researchers gathered three mothers, whose children were on a waiting list at a university pediatric occupational therapy clinic. The mothers each received one-hour occupational performance coaching sessions from a trained professional for ten weeks. The mothers and their children were given the Canadian Occupational Performance Measure (COPM) and the Goal Attainment Scaling (GAS) to measure performance change at the beginning and end of the ten weeks. Through qualitative analysis, coding was used to generate themes of the parents’ experiences with occupational performance coaching. At the end of the ten weeks, researchers found that there was overall improvement in both parental and child outcomes due to the coaching. The mothers not only saw greater improvements in their children, but also felt that the coaching gave them personal insight and empowerment.
The second study analyzed was “Family-Centered principles implemented in home-based, clinic-based, and school-based pediatric settings” (Fingerhut, Piro, Sutton, Campbell, Lewis, Lawji, & Martinez, 2013). Researchers wanted to investigate the experience of pediatric occupational therapists in terms of implementing family centered principles into their practices. Twenty-eight occupational therapists from a variety of practices (school-based, clinical, home-based, and agency-based) were interviewed on six areas of interest relating to family-centered principles. Qualitative analysis resulted in themes surrounding family-centered principles. After conducting the interviews, researchers found that occupational therapists in home-based practices had the highest use of family centered principles. All of the participants stressed the importance of incorporating families, but many said that there were many barriers that make it hard to use family-centered principles.
The third study reviewed was “Occupational therapy and early intervention: A family‐centered approach” (Edwards, Millard, Praskac, & Wisniewski, 2003). This studied explored the question, ‘what factors encourage family-center practices in occupational therapy?’ To answer this question, researchers gathered four pediatric occupational therapists and six families of children with special needs and interviewed them. Families were interviewed about time and support systems, while occupational therapists were interviewed about time and natural routine, all-important categories in the family-centered approach. In the end, researchers found that both the families and occupational therapists agreed that the family played an integral role in their child’s interventions. However, both parties agreed that time was the biggest barrier to participating in a family-centered approach. Furthermore, there were discrepancies between families and occupational therapists in terms of what they considered important to the intervention. Occupational therapists thought that incorporating therapy into the family’s natural routine was important, but families did not feel the same way. Overall, family-centered principles are important in a child’s intervention, but it can be difficult to achieve.
The final study investigated was called “Effectiveness of occupational performance coaching in improving children’s and mothers’ performance and mothers’ self-competence” (Graham, Rodger, & Ziviani, 2013).  Researchers explored if occupational performance coaching improved outcomes for mothers and their children. Thirty-seven mothers, whose children have occupational difficulties in at least three areas, were studied. Researchers used the Canadian Occupational Performance Measure (COPM) and the Goal Attainment Scaling (GAS) to measure the outcomes and goals of the mothers. Participants were measured four times throughout the experiment: once six to eight weeks before the intervention, a week before the intervention, one week after the intervention, and six weeks after the intervention. Histograms, Q-Q plots, skewness, and chi2 tests were used to determine the normality of the data. From the data, researchers concluded that there were clinically significant improvements in all the goals for the mothers and children after the intervention. Additionally, the mothers’ self-confidence and self-efficacy improved. Furthermore, there might have been generalized improvements for the children in tasks that were not initially addressed by the mothers. These results were maintained six weeks after the intervention.
In looking across the four studies, cross cutting themes emerge.  Integrating families into occupational therapy is hugely important for the child and family’s success. Mothers who received occupational therapy coaching not only gained more self-confidence, but outcomes for the children improved too as a result from the coaching. However, integrating families into occupational therapy can be difficult. Family-centered practices take a sizable amount of time for both the occupational therapists and the families. Also, both parties can have conflicting goals, which makes collaboration complex. The research studies have shown that when families and occupational therapists work together, the children benefit greatly. However, I want to look more into what prevents families from being integrated and what policies can be put in place to promote collaboration. For example, home-based therapies used more of the family-centered principles than any other of the types of practices. Obviously, this is due to occupational therapists being in the homes with the families, which does make it easier to integrate them into therapy. What needs to be done in clinics and in schools to better include families into occupational therapy? In the end, both the occupational therapists and the families have the same goals and that is to help the child reach their fullest potential.
Policy Perspective and Efforts:
            The Individuals with Disabilities Education (IDEA) ensures that all students with a disability are ensured access to Free Appropriate Public Education (FAPE). In 2004, IDEA was majorly amended to create Individuals with Disability Education Improvement Act (IDEIA). In IDEA and IDEIA, parent participation is regarded as vital to the child’s development. In fact, there is a large section detailing parent participation, which includes, student-level decision-making and planning, information access, and systems-level decision-making and planning (The Individuals with Disabilities Act and Parent Participation, 2012). Additionally, IDEIA requires that every state provides an advisory panel to act as a guide to special education and related services and those advisory panels must include parents of children with disabilities (The Individuals with Disabilities Act and Parent Participation, 2012). Moreover, when parents were surveyed, the majority was satisfied with the amount of involvement in their child’s education under IDEA, especially with setting Individualized Education Program (IEP) goals.
Parent involvement is the backbone of IDEA. Nevertheless, parents still feel like their voices are not heard. Parents feel like there is a disconnect between themselves and professionals.  Burke and Sandman describe parents’ insights into such involvement.  Even in IEP meetings (the part where parents ideally have the most say) “they are frequently the recipients (vs. sharers) of information” (Burke & Sandman, 2015, p. 76). More often than not, parents feel intimidated and disempowered when working with professionals.  Furthermore, parents feel that professionals and schools view them as more secondary participants, partly due to parents feeling uncomfortable and uninformed. Overall, despite IDEA and IDEIA outlining the importance of parents there is still a disassociation between what IDEA and IDEIA require and the implementation in therapies and services.
Wisdom of Practice Perspective:
            Whilst literature provides an abundance of research on family involvement in occupational therapy, it is important to hear from professionals to get an in depth understanding of the topic. I interviewed an occupational therapist at an inclusion preschool and kindergarten. During this interview, we discussed how valuable families are, but also the issues surrounding incorporating families into therapies. She believes that in order for occupational therapy to be effective for a child, families and therapists must collaborate. Parents have important things to say and they are experts about their children. Parents know how their child is in a variety of environments, which helps occupational therapists since they only tend to see a child in one particular environment.
Nevertheless, being collaborative and supportive does not come without challenges. The occupational therapist cited time as the biggest hurdle in working with families. She wished she had at least an hour weekly to work with families directly and train them to do therapies done during the sessions at home. She said the most difficult families to incorporate are the parents who are working. Being that she does her therapies during school hours, she rarely gets to see those families on a constant basis. In order to remedy this, she talks to families on the phone, emails, and uses visual aids (in case there are any language barriers). She also stressed the importance of asking questions, listening to any questions, and educating families.
However, she mentioned an issue that I did not come across in my research and that is the “hyper-vigilant” parents. These are the parents who are over involved, constantly watching through the one-way window in every classroom at the school, and are incredibly anxious. The occupational therapist said it can sometimes be difficult to do the therapies if you feel like you are constantly being watched. She said that sometimes we forget how stressed families are and occupational therapists should address ways to reduce anxiety for everyone involved, like telling parents to go take a break and grab a coffee. Regardless of how involved the families, there is one question she thinks is the most important, how can occupational therapy help your family?
These insights from my interviewee are in line with the American Occupational Therapy Association’s (AOTA) view on families. It emphasizes a family-centered philosophy due to the fact that “families know their children best, that optimal developmental outcomes occur within a supportive family and community environment, and that each family is unique (Stoffel & Schelis, 2014). Their view is based on the idea that young children learn best through interactions with significant and familiar adults in their life through everyday experiences.  Because ‘occupations’ are daily life experiences for all of us, including family involvement in therapies in home environments makes sense.  In addition, the AOTA focuses on culturally sensitive practice; “Each family’s culture, spiritual beliefs and activities, values and traditions may be different from those of the service provider.  Service providers should seek to understand, not judge” (Stofel  & Schelis, 2014, p. 2). In general, it the job of occupational therapists to be supportive of families.
Conclusion and Recommendations:
            The goal of pediatric occupational therapists is to provide effective therapies that increase the independence of a child. With the staggering rise of children requiring services, it is imperative that every child receives effective therapies. In order to provide that effective therapies, it is crucial that families are incorporated into the therapies. Yes, there are many challenges with working with families. The lack of time, on both sides, is the biggest enemy when working with families. Trying to make time so that families and occupational therapists can create an equal partnership, unfortunately, something that families and therapists will always have to work on. It is especially challenging since families are so diverse, making it difficult to find a one-size-fits-all strategy.
The issues surrounding integrating families into occupational therapy cannot be solved in with swift policy changes, but with changes to everyday practices. At the initial IEP meetings, I believe that parents and therapists should not only outline what they want for the child, but what they want in their partnerships. Pediatric clinics should, at least at the initial start of therapies, set aside an hour, so occupational therapists can explain and educate to parents what they plan to do during the therapies, as well as outline what they need from the parents. As a future pediatric occupational therapist, I plan on trying to lead a family-centered practice as possible. I will not see families as just clients, but as partners working towards the goals of the child.
I chose to explore this topic after shadowing a pediatric occupational therapy clinic. I sat in several times on a therapy session with an occupational therapist that was working with a young girl who had several motor difficulties. The girl was working on improving flexibility and had to do a variety of stretches. However, the occupational therapist could tell that the girl was not doing the stretches at home and was a little frustrated with that. That situation made me think about the relationship between families and occupational therapists. After researching this topic, I have realized that the relationship must be mutually inclusive. Both families and occupational therapists hold valuable knowledge and when that shared knowledge is brought together the child will only benefit.
 
 
 
 
 
 
 
 
 
References
 
Burke, M. M., & Sandman, L. (2015). In the voices of parents: Suggestions for the next IDEA reauthorization. Research & Practice for Persons With Severe Disabilities, 40(1), 71-85. doi:10.1177/1540796915585109
Child Trends Databank. (2015). Individualized education plans. Retrieved from: http://www.childtrends.org/?indicators=individualized-education-plans
Dunn, W. (Ed.). (2011). Designing best practice services for children and families. Best Practice Occupational Therapy for Children and Families in Community Settings (2nd Edition). Thorofare, NJ, USA: SLACK Incorporated. Retrieved from http://www.ebrary.com.offcampus.lib.washington.edu
Edwards, M., Millard, P., Praskac, L., & Wisniewski, P. (2003). Occupational therapy and early intervention: A family‐centered approach. Occupational Therapy International, 10 (4), 239-252.
Fingerhut, P., Piro, J., Sutton, A., Campbell, R., Lewis, C., Lawji, D., & Martinez, N. (2013). Family-centered principles implemented in home-based, clinic-based, and school-based pediatric settings. The American Journal of Occupational Therapy, 67(2), 228-35.
Graham, F., Rodger, S., & Ziviani, J. (2013). Effectiveness of occupational performance coaching in improving children’s and mothers’ performance and mothers’ self-competence. AJOT: American Journal of Occupational Therapy, 67(1), 10.
Graham, F., Rodger, S., & Ziviani, J. (2010). Enabling occupational performance of children through coaching parents: Three case reports. Physical & Occupational Therapy in Pediatrics, 30 (1), 4-15.
The Individuals with Disabilities Act and Parent Participation. (2012). FEDC Issue Brief, 1-10. Retrieved February 3, 2016, from http://www.efrconline.org/myadmin/files/fedc_Parent_Participation.pdf
Stoffel, A., & Schleis, S. (2014). Frequently asked questions (FAQ): What is the role of occupational therapy in early intervention? The American Occupational Therapy Association, 1-7. Retrieved from https://www.aota.org/-/media/Corporate/Files/Practice/Children/Browse/EI/Role-of-OT_1/Early%20Intervention%20FAQ%20Final.PDF

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