JMIR Publications

ABSTRACT

Background:

Cancer pain represents a new challenge for cancer patients and their family members. Despite progression in pain management, pain is still underreported and undertreated as well as related needs that patients and caregivers may have. Online platforms represent a fundamental tool for research to reveal the unmet needs of these users and their emotions outside the medical setting.

Objective:

The current study aimed to 1) reveal the unmet needs of both patients and caregivers and 2) detect the emotional activation associated with cancer pain by analyzing the textual patterns of both users.

Methods:

A descriptive and quantitative analysis of qualitative data was performed in R studio v.2022.02.3. We analyzed 679 posts (161 from caregivers, 518 from patients) published over ten years on the ‘cancer’ subreddit to identify unmet needs and emotions related to cancer pain. Hierarchical clustering and emotions and sentiments analysis were conducted. Two user groups (caregivers and patients) were compared as well.

Results:

The language used by patients and caregivers for describing their experiences related to cancer pain and their expressed needs were different. Regarding patients, the large cluster labeled as unmet needs was composed of the following clusters: 1A) reported experiences – with the (a) relationship with doctors and (b) reflections on physical features – as sub-clusters; and 1B) changes observed over time – with (a) regret and (b) progress as sub-clusters. As for caregivers, the main clusters were: 1A) social support and 1B) reported experiences – with (a) psychosocial challenges and (b) grief – as sub-clusters. Moreover, the comparison between the two groups showed that they share a common cluster labeled uncertainty. Regarding emotions and sentiments analysis, patients significantly expressed a higher negative sentiment than caregivers (z=-2.14, p<.05). On the contrary, caregivers expressed with more frequency a positive sentiment compared to patients (z=-2.26, p<.05), with trust (z=-4.12, p<.001) and joy as the most prevalent positive emotions (z=-2.03, p<.05).

Conclusions:

Our study emphasized different perceptions of cancer pain in patients and caregivers. We revealed different needs and emotional activations between the two groups. Even though they may share their concerns and emotions differently, they both need a safe place to express themselves. Moreover, our study highlights the importance of considering caregivers as part of medical care. Overall, this study increases knowledge about users' unmet needs and emotions, which may have important clinical implications in pain management.