The Importance of Peer Support for Pulmonary Fibrosis Patients

The Importance of Peer Support for Pulmonary Fibrosis Patients
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Last week was the first of an eight-week Pulmonary Wellness Foundation (PWF) peer support group. I have been collaborating with the PWF since January to build this unique peer support group for patients with pulmonary fibrosis. It was surreal to finally launch it.

Though I’ve always advocated for the benefits of a support group, I never knew how much I needed one until now.

While completing my master’s degree in family therapy several years ago, I explored the multiple benefits of peer support programs for vulnerable groups as part of my thesis. The groups included bereaved siblings, homeless youth, and patients with a chronic illness.

The benefits were plentiful, and I advocated for bringing various people together by starting peer support groups. Little did I know that I’d eventually fall into one of those categories, too. Life works in mysterious ways!

When talking to other patients about peer support, I consistently hear how good it feels for someone to truly understand what it’s like to live with your disease. This point is repeated regularly in conversations on the Pulmonary Fibrosis News Forums.

We can all learn from our incredible doctors, nurses, and allied healthcare professionals, but they don’t know what it’s like to live with this life-threatening lung disease. Other patients understand, and it’s comforting to hear their experiences and feel their words resonate.

Another benefit of participating in peer support groups is the opportunity to “give and take.” I often hear patients talk about participating in groups because they want to give back, share their experience, and help others on their journeys.

Shortly after my idiopathic pulmonary fibrosis (IPF) diagnosis, I wrote that I’d lost the sense of purpose in my life. Two years later, I wrote about how that sense of purpose evolved since my diagnosis, partly because I’ve found opportunities to help others.

People attend support groups to help others (the “giving” part of the equation), but also to learn and take away wisdom from the experiences of others. We’ve only had one session in the new PWF support group, but I already know I will learn a lot from everyone.

While the benefits of peer support are abundant in the literature, it’s important to ensure these groups are conducted properly. There are various therapeutic modalities for giving and receiving support that each have pros and cons for patients.

Ideally, a peer support group is held in real-time, on a digital platform or in person, so patients can be present with one another and immediately respond to questions or thoughts. A platform for typing and responding to questions is also helpful and is considered a form of peer support.

Further, authentic peer support groups should not have a teacher, leader, or prepared agenda. This is not to be confused with the importance of a facilitator, someone to open and conclude the group and help propel conversations forward.

However, facilitators should not carry the conversation, singularly answer questions, or provide group direction. Someone who does this is considered a group leader or teacher, and is seen by the group as a subject matter expert.

The idea of a peer support group is to learn together, whereby no single participant is an expert. If a person does bring expertise to a particular subject, they would be a guest speaker.

Our PWF program is unique in that we have guest speakers for some subjects, including palliative care and managing anxiety. The group would benefit from a professional’s expertise on these topics, so we’re excited for the guests to join us.

Our group also has a prepared curriculum to help guide conversation, but authentic peer support groups should always be encouraged to go in the direction of participant needs, which differs from a professionally-led support group.

While our group is just getting started, I’m looking forward to the next seven weeks. Thank you to everyone who is participating in our group. I am eager to learn alongside you in the coming weeks.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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4 comments

  1. Karen Martin says:

    Charlene,
    You are so right about the importance of support groups. We joined one when my husband had his leg amputated and now I have found this one. Others may sympathize, but they can’t empathize, and that really makes a huge difference. Thank you for all of your work on our behalf.

    • Charlene Marshall says:

      Hi Karen,

      Thanks so much for reading my columns and reaching out via the comments. I’m glad this column resonated with you, and you can relate to the importance of support groups. I always advocate for them, but am just realizing how beneficial they are for me. I’m really glad this one has been helpful to you, and its my pleasure to do the work I’m doing for the PF community. Thanks for writing!
      Charlene.

  2. Lydia says:

    I just started participating in a support group and am so thankful for it. It’s definitely filled a void that just couldn’t be satisfied outside of those most familiar with the condition.

    • Charlene Marshall says:

      Hi Lydia,

      Thank you for reading my columns and reaching out via the comments. I’m so glad you’ve found a support group that has been helpful for you, wonderful to hear. Stay well.
      Char.

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