Support Groups in Hidradenitis Suppurativa—Building a Community

Introduction

Support groups are an invaluable tool to help individuals cope with a multitude of diseases, conditions, and phases in life. They are beneficial to patients as well as to family members and caregivers. Support groups can be in-person with scheduled meeting times for members to attend or online in the form of social media without time or geographic constraints. For a disease like hidradenitis suppurativa (HS) that impacts so many facets of an individual’s life such as physical functioning, mental health, sexual health, and ability to work, support groups can offer individuals community support for what is otherwise an often isolating disease.

In this chapter, we offer guidance on setting up a support group from the perspective and experiences of Hope for HS ( hopeforhs.org ), a grassroots, 501c3 non-profit patient advocacy and support organization for the HS community. At face value, an HS support group requires only a time, a place, and a little effort to spread the word. The support group founder can reserve a suitable conference room and inform the surrounding patient community of the event via mail, online health system messages, posters, or flyers placed in a clinic exam or waiting rooms. The creation of a support group to meet the needs of the HS community is also an opportunity to repair trust in a patient population that has historically had their needs go unrecognized and been offered few treatment options. Thus, ensuring adequate time, resources, and level of commitment should be given due consideration before one decides to create a support group.

How to Get Started

The experience of creating a support group can be both rewarding and challenging at times. Support groups offer those who suffer from HS the empowerment to work on and solve problems in a constructive and validating way. They enrich the community of people undergoing the same issues. The Hope for HS support group platform encourages partnership with the medical community. This important partnership allows for honest and productive exchanges between patients and medical providers outside the context of a clinical visit without the same time constraints. The following are suggested steps to building a good foundation for your support group from the start ( Fig. 33.1 ).

• 1.

  Select your core team members.

  A representative from the medical and from the patient communities is recommended.

  • Chapter Director : Patient or Medical Community Member

  • Chapter Medical Director : Attending Physician

  • Medical Lead: Resident/Fellow/Medical Student

  • Patient Lead(s): Trusted, dependable, motivated patient or caregiver

  You may also wish to enlist the help of support staff.

  When selecting any of the pillars of your support group team, there are a few questions you may want to pose before acceptance of the role:

  • Do you have the time necessary to plan and publicize the meetings, coordinate special events, and talk with individual members who contact the support group with issues?

  • Are you committed to attending the meetings, even if you are having a bad day?

  • Do you feel comfortable in front of a group?

  • Are you able to be assertive enough (in a kind way) to keep the meeting on track?

  • Do you maintain a positive, encouraging, and hopeful attitude?

  • Are you a good listener?

• 2.

  Select a meeting location.

• 3.

  Select meeting frequency. Every other month meetings during the evening are recommended.

• 4.

  Select a target date. It is recommended to give 3 to 6 months lead time.

• 5.

  Find interested persons. You can start by targeting patients in the chapter Medical Director’s clinic, but remember that only a percentage will attend. Casting a wide net will reach more potential participants.

• 6.

  Select meeting topic(s). Examples of initial meeting topics include Current HS Treatments, Knowledge Gaps, Addressing Mental Health.

• 7.

  Advertise. Create a support group information flyer that can be disseminated to patients via mail or email, passed out in clinics, and posted in the chapter Medical Director’s clinic.

• 8.

  Create an intake questionnaire. This questionnaire can help you understand the needs of your respective HS community, which may vary geographically, and may be given to any newly attending support group member. Questions may be directed at seeking feedback on topics of interest, ideas for advocacy and awareness, and suggestions for support group organization growth.

Participant Interactions

Physician to Patient

Physician presence at each support group meeting allows patients to learn accurate information about their condition. Trust in the medical community that may have been eroded over years of disease progression and lack of treatment options can begin to be rebuilt by sharing optimistic news of research opportunities and the development of new treatment options. General questions may be answered for a group, away from the time constraints of individual appointments in a clinical setting ( Fig. 33.2 ).