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Hospice and Palliative Care Experiences as Expressed on the r/hospice and r/palliative Subreddits

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Purpose: Hospice care is widely recognized as end-of-life support. Reddit, an anonymous online community forum, provides space for sharing medical information, seeking emotional support, and facilitating open communication. This qualitative study examined the most popular questions on the r/hospice and r/palliative communities on Reddit. Methods: Original posts from the r/hospice and r/palliative subreddits published between April and October 2024, with at least 10 comments, were analyzed. Posts were included if they asked questions or sought advice, included several standard keywords and phrases, or if they contained a question mark. Posts without explicit questions were excluded. Thematic and qualitative analysis was performed until thematic saturation was reached to identify key themes and subthemes important to the forum’s users. Results: During the specified period, 369 original posts were identified and analyzed. Seven primary themes emerged from question and advice-seeking r/hospice comments: (1) the dying process (24%), (2) coping and emotional support for patients and caregivers (22%), (3) logistics of hospice and palliative care (22%), (4) medication treatments and side effects (13%), (5) negative hospice experiences (10%), (6) support for hospice providers (7%), and (7) other less related material (2%). Subthemes were identified within the aforementioned overarching themes. Conclusions: Assessment of posts on the r/hospice and r/palliative subreddits revealed gaps in communication between patients, caregivers, and healthcare providers in several important areas, most importantly in demystifying the dying process and providing patient and caregiver support.
Title: Hospice and Palliative Care Experiences as Expressed on the r/hospice and r/palliative Subreddits
Description:
Purpose: Hospice care is widely recognized as end-of-life support.
Reddit, an anonymous online community forum, provides space for sharing medical information, seeking emotional support, and facilitating open communication.
This qualitative study examined the most popular questions on the r/hospice and r/palliative communities on Reddit.
Methods: Original posts from the r/hospice and r/palliative subreddits published between April and October 2024, with at least 10 comments, were analyzed.
Posts were included if they asked questions or sought advice, included several standard keywords and phrases, or if they contained a question mark.
Posts without explicit questions were excluded.
Thematic and qualitative analysis was performed until thematic saturation was reached to identify key themes and subthemes important to the forum’s users.
Results: During the specified period, 369 original posts were identified and analyzed.
Seven primary themes emerged from question and advice-seeking r/hospice comments: (1) the dying process (24%), (2) coping and emotional support for patients and caregivers (22%), (3) logistics of hospice and palliative care (22%), (4) medication treatments and side effects (13%), (5) negative hospice experiences (10%), (6) support for hospice providers (7%), and (7) other less related material (2%).
Subthemes were identified within the aforementioned overarching themes.
Conclusions: Assessment of posts on the r/hospice and r/palliative subreddits revealed gaps in communication between patients, caregivers, and healthcare providers in several important areas, most importantly in demystifying the dying process and providing patient and caregiver support.

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