Self-management for HSD and hEDS
Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory
https://www.tandfonline.com/doi/full/10.1080/09638288.2021.1933618#abstract
Study Summary
This is an article about self-management interventions for hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS). It discusses what HSD and hEDS are and the challenges associated with these disorders. Some of the results from the study were that education, training, and modeling were important aspects of self-management.
Key Findings
Education is key: Participants emphasized the need for thorough education about HSD/hEDS, including information on symptom management, pacing, and helpful resources.
Training matters: Practical training in self-management techniques, such as pacing, pain management strategies, and activity modification, was considered crucial.
Modeling is helpful: Learning from others with HSD/hEDS or healthcare professionals who understand the condition was seen as valuable.
Environmental adaptation: Modifying the environment to reduce physical strain and support independence was highlighted.
Personalized approaches: Self-management interventions need to be tailored to individual needs and preferences.
Why It Matters
This study is highly relevant to chronic condition management because it emphasizes the importance of a holistic and patient-centered approach. It highlights that successful self-management isn't just about following a set of instructions, but about understanding the condition, developing personalized strategies, and having access to appropriate support and resources.
As an occupational therapist, this study resonates deeply with my practice. Here's why:
Client-centered focus: Occupational therapy is founded on the principle of client-centered care, which aligns perfectly with the study's emphasis on personalized interventions and individual needs.
Education and training: A core component of OT involves educating clients about their condition and training them in specific strategies to manage their symptoms and improve their daily functioning. This study reinforces the value of this approach.
Activity modification and environmental adaptation: OTs are skilled in analyzing activities and modifying them to reduce strain and promote participation. We also help clients adapt their environments to support their independence and well-being, which the study identifies as crucial.
Holistic perspective: This research mirrors OT's holistic perspective by considering not only physical symptoms but also the psychosocial aspects of living with a chronic condition.
In essence, this study validates the core principles of occupational therapy and provides further evidence for the effectiveness of our interventions in chronic condition management, particularly for individuals with HSD/hEDS.
What This Means for Managing Symptoms
This study provides valuable insights that you can directly apply to your own symptom management journey if you have HSD/hEDS:
Become an informed advocate: Take charge of your health by learning as much as you can about HSD/hEDS. Reliable sources like The Ehlers-Danlos Society (https://www.ehlers-danlos.org/) and reputable medical websites can provide valuable information. Knowledge empowers you to make informed decisions and better communicate your needs to healthcare providers.
Seek expert guidance: Find healthcare professionals who specialize in HSD/hEDS or have a deep understanding of the condition. This may include a physiatrist, geneticist, occupational therapist, physical therapist, and potentially others. They can provide tailored advice, develop a personalized management plan, and teach you specific strategies to address your unique challenges.
Prioritize pacing: Pacing is a crucial self-management technique for HSD/hEDS. It involves carefully balancing activity and rest to avoid overexertion and manage fatigue and pain. Break down tasks into smaller, manageable chunks, schedule regular rest breaks, and listen to your body's signals.
Explore different strategies: Experiment with various pain management techniques to find what works best for you. This may include medication, heat or cold therapy, gentle exercise, mindfulness techniques, or relaxation exercises.
Adapt your environment: Identify modifications that can make your home and workplace more supportive. This could involve using assistive devices, ergonomic equipment, or adjusting furniture layout to reduce strain and promote independence. An occupational therapist can be particularly helpful in this area.
Connect with others: Seek out support groups or online communities where you can connect with others who have HSD/hEDS. Sharing experiences, learning from others, and receiving emotional support can make a significant difference in your self-management journey.
Advocate for your needs: Don't hesitate to advocate for yourself with healthcare providers, employers, and family members. Clearly communicate your needs, limitations, and preferences to ensure you receive appropriate support and accommodations.
Remember that self-management is an ongoing process! Be patient with yourself, celebrate your successes, and don't be afraid to adjust your strategies as needed.
Citation
Bennett, S. E., Walsh, N., Moss, T., & Palmer, S. (2021). Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory. Disability and Rehabilitation, 44(18), 5231–5240. https://doi.org/10.1080/09638288.2021.1933618