Project Description
Through completion of the project, the capstone student will demonstrate advanced skills in addressing hoarding disorder (HD) as evidenced by successful completion of HD certification courses, a compilation of an occupational profile, and an assessment of an HD patient, participation, attendance at an HD conference, and clinical hours observed with HD and or home health professional(s). The capstone student will also create educational materials for occupational therapists so they are better equipped to address the needs of clients with hoarding tendencies. Lastly, the student will conduct a research study to investigate professionals' perspectives and experiences with HD through the dissemination of a national survey. While there is ambiguity around this topic it is essential to explore the role of occupational therapists and HD to address all components of a client's life to support healthy engagement in occupation.
Recognized Needs
- Reducing misunderstandings and prejudice towards those with hoarding disorder that contributes to a lack of desire for professionals to provide services.
- Creating materials for education on hoarding disorder, and evaluations, interventions pertaining to the disorder.
- Ensuring accessibility and clarity of educational materials.
- Advocating for occupational therapy's value in joining interdisciplinary teams/hoarding task forces.
- Increasing interest among occupational therapy professionals to increase occupational therapy engagement with individuals who hoard.
Literature Review
Existing literature describes the unique perspectives that occupational therapists may offer when working with clients with hoarding disorder (HD). For example, utilizing models such as the PEO, to hold practitioners accountable for considering the person, environment, and occupation, may provide a holistic perspective when providing services to clients who hoard. There is currently a lack of literature specific to the effectiveness of occupational therapy and hoarding. Although there is limited research on this topic, occupational therapy's role is emerging in this area. In her article, Can Occupational Therapy Address the Occupational Implications of Hoarding?, Clarke (2019) classifies hoarding as an occupation, albeit hazardous for the individual, and highlights the imperative need for occupational therapy to address the client's current and future ability to function safely within the home. When approaching clients with HD about their behaviors, OTs have the opportunity to acknowledge hoarding as a meaningful occupation (2019), but to guide clients to engage in "sanctioned" (Kiepek, et al., 2018) behaviors through occupational engagement and with guidance from previously researched approaches such as cognitive behavioral therapy (Saxena et al., 2004; Williams & Viscusi, 2016; Rodgers et al. 2021) and cognitive rehabilitation and exposure/sorting therapy, or CREST (Davidson et al., 2021). As described by Dissanayake et al. (2017), there is an emerging role on interdisciplinary teams for occupational therapists in the treatment of HD. Occupational therapists are experts in analyzing daily functioning and may prove valuable team members in the process of treating those with hoarding disorder.
Areas of Focus
Education | Research | Advocacy
Target Populations
Home Health Occupational Therapists
Mental Health Occupational Therapists
The Greater Occupational Therapy Community
Individuals Living with Hoarding Disorder
Project Mission & Vision Statements
Mission Statement: Exploring occupational therapy's role in improving functioning and quality of life in those with hoarding disorder through resource creation and the development of clinical expertise.
Vision Statement: To establish occupational therapy's role in improving outcomes for clients who hoard.
Project Leader: Nicole Terpstra
Nicole graduated with a Bachelor of Science in Psychology and a Minor in Fine Art from Indiana Wesleyan University in 2020. She looks forward to earning her Doctorate in Occupational Therapy from Huntington University in April of 2023. She is passionate about exploring new areas of practice to provide holistic and empathetic care to clients with a variety of diagnoses.
Responsibilities During the Doctoral Capstone Experience:
- Collaborate with the Capstone Coordinator/Faculty Mentor and Expert Mentor to determine requirements for the Capstone Project.
- Ensure all project demands are met.
- Create high-quality deliverables.
- Maintain clear communication with all team members.
- Manage biweekly consultation meetings with Expert and Faculty Mentors.
- Facilitate personal development and learning.
- Identify and resolve project concerns.
Expert Mentor: Dr. Laryn O'Donnell, OTD, OTR/L
Dr. O'Donnell completed a Bachelor of Science in Human Development and Family Science from The Ohio State University and a Doctorate in Occupational Therapy from Huntington University. She is currently continuing her studies in Health Sciences at the University of Wisconsin Milwaukee as a PhD student.
Responsibilities During the Doctoral Capstone Experience:
- Collaborate with the student, Capstone Coordinator, and Faculty mentor to determine requirements for the Capstone Project.
- Participate in biweekly student supervision meetings.
- Assist the student in skills development in home health and research.
- Review student work and provide necessary feedback.
- Assist with grading the completed doctoral capstone project.
Faculty Mentor & Capstone Coordinator: Dr. Andrew Rivera, OTR/L, LMT, AEP
Dr. Rivera graduated from Seton Hall University with a Bachelor of Arts in Social and Behavioral Sciences with a concentration in Psychology. He continued his education at Huntington University where he earned a Doctorate in Occupational Therapy. Dr. Rivera is a Licensed Massage Therapist (LMT) and Associate Ergonomics Professional (AEP). He is also an Associate Professor at Huntington University and the Northeast District Director of the Indiana Occupational Therapy Association.
Responsibilities During the Doctoral Capstone Experience:
- Collaborate with the student and Expert Mentor to determine requirements for the Capstone Project.
- Participate in biweekly student supervision meetings.
- Provide mentorship in the focus area of home healthcare & adherance to learning contract.
- Help the student navigate issues & barriers throughout the experience.
- Review student work and provide necessary feedback.
- Assist with grading the completed doctoral capstone project.
Site Mentor: Carla Alejo
Carla graduated from Alverno College with a Bachelor of Science in Nursing. Carla has 28 years of experience working in long-term care including home care, group homes, and nursing homes. She has been the Director of the In-Home Support and Hoarding Intervention and Treatment Program since she founded the program in 2015 at Catholic Charities (Milwaukee Area). Carla also served as the Chair of the Milwaukee County Hoarding Task Force since 2013.
"My passion is advocating for those who are underserved and slip through the cracks. I help people heal from the things no one ever apologized for. I will never shy away from a difficult situation."
Responsibilities During the Doctoral Capstone Experience:
- Provide discussion and education on hoarding disorder from personal experience and research.
- Collaborate with the Capstone Student in coordinating hands-on learning experiences through the Hoarding Treatment and Intervention Program.
Catholic Charities
"The mission of Catholic Charities is to provide service to people in need, to advocate for justice in social structures, and to call the entire church and other people of good will to do the same." (Catholic Charities, 2023)
Partnered Site: Catholic Charities, Milwaukee Area Office
As of March 2022, the Hoarding Intervention & Treatment Program at Catholic Charities Milwaukee is the only program of its kind in the nation. The Hoarding Intervention and Treatment Program collaborates with clients to provide holistic and client-centered hoarding disorder intervention. Partnering with this program allowed for personal and professional skills development when working with clients who have hoarding disorder. Throughout the DCE the student accumulated 90+ hours working with individuals with hoarding tendencies.
Project Outcomes & Deliverables
Deliverable 1. Dissemination of content and additional resources. (Resources shared in relevant online groups. A recorded presentation from the Minnesota Hoarding Task Force Monthly Meeting will be available after June 1, 2023).
Deliverable 2. Certificate of completion of HD course.
Deliverable 3. Completion of an occupation-based activity analysis, an occupational profile, and a case study.
Deliverable 4. Write an opinion paper on OT in HD to advocate for OTs role in HD.
Deliverable 5. Evidence of poster proposal submission. (Submitted to the Collaborative Family Healthcare Association (CFHA) for the Building Resilience Through Innovation, Solutions for Integrated Healthcare Today & Tomorrow Conference, 2023)
Deliverable 6. Disseminate resources with community-based care organizations.
The above resources were shared with my partnered site, Catholic Charities, as well as with online occupational therapy groups.
Deliverable 7. Analysis of data from survey based research study.
Quantitative and qualitative data were analyzed and cannot currently be shared due to the intent to apply for publication through AJOT (American Journal of Occupational Therapy).
Deliverable 8. Evidence of research course completion
Additional Outcomes
Attended and participated in the International OCD Foundation's Online Hoarding Disorder Conference.
Completed 90+ hours working with clients who have hoarding tendencies through Catholic Charities and a reflection journal of personal experiences.
Documentation of Goal Completion
Project Poster
Impact on the Profession
The DCE project, Exploring Occupational Therapy's Role in Hoarding Disorder, has impacted the profession in multiple ways. Creating educational resources allows for occupational therapists to better understand the effect of HD on clients as well as advocate for occupational therapy's value to other professions.
Conducting research on the prevalence of hoarding disorder in home health occupational therapy may also lend to increased research and future development of occupation-based interventions that address excessive clutter. The intent for future publication will contribute to a growing body of occupational therapy based research on hoarding disorder.
Lastly, while this project emphasizes the importance of equipping occupational therapists to address hoarding disorder within individual circumstances (i.e. adding resources to your "OT toolbox"), there is also a call for occupational therapists to join interdisciplinary teams. This project intends to spark conversation within the occupational therapy community as well as across disciplines.
Future Directions
There are numerous future directions for this topic area. Because working particularly with individuals who have hoarding disorder is a niche within the field of occupational therapy, there are many opportunities for continued research, intervention development, and advocacy.
Reflections
While it was challenging at times to navigate an emerging area of practice, I am incredibly grateful I pursued the topic of hoarding disorder for my occupational therapy doctoral capstone experience. I was able to grow personally and professionally by working with wonderful clients, networking with mental health professionals, and by creating materials that provide a foundational understanding of the occupational impact of hoarding disorder. There are many opportunities for occupational therapists to continue to make an impact in this area of practice through research and collaboration.
Contact Information
Please reach me at nicole@terpstrahome.com to share any feedback, additional resources, or concerns. I look forward to connecting! Please do not hesitate to connect with me via LinkedIn as well.
References
Catholic Charities Milwaukee Area Office (2022). [Logo]. Retrieved from https://www.ccmke.org/Catholic-Charities/Get-Help/Hoarding-Intervention--Treatment-Program.htm
Catholic Charities USA. (2023). Catholic Charities USA. Retrieved April 10, 2023, from https://www.catholiccharitiesusa.org/
Clarke, C. (2019). Can occupational therapy address the occupational implications of hoarding?. Occupational Therapy International, 2019, 1-13. https://doi.org/10.1155/2019/5347403
Davidson, E. J., Broadnax, D. V., Dozier, M. E., Pittman, J. O., Ayers, C. R. (2021). Self-reported helpfulness of cognitive rehabilitation and exposure/sorting therapy (crest) for hoarding disorder. Journal of Obsessive-Compulsive and Related Disorders, 28, 1–7. https://doi.org/10.1016/j.jocrd.2021.100622
Dissanayake, S., Barnard, E., & Willis, S. (2017). The emerging role of occupational therapists in the treatment of compulsive hoarding: An exploratory study. New Zealand Journal of Occupational Therapy, 64(2), 22-30.
International OCD Foundation (2022) Online Hoarding Disorder Conference. [Logo]. Retrieved from https://events.iocdf.org/event/cab0cdfb-8286-4188-bd7f-9c524baaa25b/summary
Kiepek, N. C., Beagan, D., Rudman, L., & Phelan, S. (2018). Silences around occupations framed as unhealthy, illegal, and deviant. Journal of Occupational Science, 16(3), 1-13. https://doi.org/10.1080/14427591.2018.1499123
Rodgers, N., McDonald, S., Wootton, B. M. (2021). Cognitive behavioral therapy for hoarding disorder: an updated meta-analysis. Journal of Affective Disorders, 290, 128-135. https://doi.org/10.1016/j.jad.2021.04.067
Saxena, S. & Maidment, K. M. (2004). Treatment of compulsive hoarding. Journal of Clinical Psychology, 60(11), 1143-1154. https://doi.org/10.1002/jclp.20079
Williams, M. & Viscusi, J. A. (2016). Hoarding disorder and a systematic review of treatment with cognitive behavioral therapy. Cognitive Behaviour Therapy, 45(2), 93-110. https://doi.org/10.1080/16506073.2015.1133697
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