The emotional side of taking part in a cancer clinical trial

Chichua, Mariam; Filipponi, Chiara; Mazzoni, Davide; Pravettoni, Gabriella

doi:10.1371/journal.pone.0284268

Cited by 7 publications

(3 citation statements)

References 39 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This process allows them to express their struggles, fears, hopes, and desires in a safe and accepting environment. The shared experiences foster a sense of belonging and offer reassurance and support during times of hardship, as demonstrated in other studies [26, [34][35][36]. The forum was proposed as a possible solution that could serve as a space to be in contact with peers, providing a space for mutual understanding, empathy, and exchanging knowledge and support.…”

Section: Discussionmentioning

confidence: 91%

The voices of breast cancer survivors with chronic pain: A qualitative thematic analysis of patients’ challenges to pain management

Filipponi

Masiero

Mazzoni

et al. 2023

Preprint

Self Cite

View full text Add to dashboard Cite

Purpose: Breast cancer survivors commonly experience chronic pain following surgery. Despite the existence of treatment guidelines for cancer pain, a significant number of patients do not achieve satisfactory relief with available therapies. To fill this gap, this study aimed to explore the experience of chronic pain further, focusing on needs and obstacles related to its management in breast cancer survivors. Methods: We conducted four focus groups with 17 breast cancer patients (Mage=51, SD=7.99) with chronic pain from mild to severe intensity. The focus groups were audio-recorded, transcribed verbatim and analyzed through qualitative thematic analysis. Results: The thematic analysis of the focus group discussions identified three key themes: (1) The challenges to pain management (with subthemes: (1.1) “Doctor-patients communications barriers” and (1.2) “Contextual and societal barriers”); (2) The self-management needs (subthemes: (2.1) “Psycho-social support”, (2.2) “Care-related needs”, and (2.3) “Shared decision-making”); (3) Treatment preferences and perceptions of pain management (subthemes: (3.1) "Treatment preferences", (3.2) "Institution preference", and (3.3) "Decision role perception”). Conclusions: This study emphasizes the interconnectedness of challenges, self-management needs, and treatment preferences in managing chronic breast cancer pain. It highlights the importance of addressing patients' reluctance to report pain, the normalization of pain, and the role of health providers' attitudes. These findings aid the development of personalized support systems to enhance breast cancer pain management and improve cancer survivors' quality of life. Healthcare provider education, multidisciplinary and biopsychosocial approaches, and the use of eHealth tools are highlighted as important factors in achieving better pain management outcomes.

show abstract

Section: Discussionmentioning

confidence: 91%

The voices of breast cancer survivors with chronic pain: A qualitative thematic analysis of patients’ challenges to pain management

Filipponi

Masiero

Mazzoni

et al. 2023

Preprint

Self Cite

View full text Add to dashboard Cite

show abstract

“…However, simultaneously, such data allows for anonymity and invisibility, which have been demonstrated to facilitate self-disclosure [ 74 ]. This is especially advantageous when studying emotions [ 31 ] and unmet needs.…”

Section: Discussionmentioning

confidence: 99%

“…These platforms have been demonstrated to create a sense of belongingness that helps users (patients and caregivers) feel more understood and less alone, and receive the information needed [ 29 , 30 ]. Moreover, they are useful tools for revealing basic and complex emotions that otherwise are more difficult to capture in traditional settings [ 31 ].…”

Section: Introductionmentioning

confidence: 99%

Cancer Pain Experience Through the Lens of Patients and Caregivers: Mixed Methods Social Media Study

Filipponi¹,

Chichua²,

Masiero³

et al. 2023

JMIR Cancer

Self Cite

View full text Add to dashboard Cite

Background Cancer pain represents a challenge for cancer patients and their family members. Despite progression in pain management, pain is still underreported and undertreated, and there is limited information on the 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 This 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 RStudio v.2022.02.3 (RStudio Team). We analyzed 679 posts (161 from caregivers and 518 from patients) published over 10 years on the “cancer” subreddit of Reddit to identify unmet needs and emotions related to cancer pain. Hierarchical clustering, and emotion and sentiment analysis were conducted. Results The language used for describing experiences related to cancer pain and expressed needs differed between patients and caregivers. For patients (agglomerative coefficient=0.72), the large cluster labeled unmet needs included the following clusters: (1A) reported experiences, with the subclusters (a) relationship with doctors/spouse and (b) reflections on physical features; and (1B) changes observed over time, with the subclusters (a) regret and (b) progress. For caregivers (agglomerative coefficient=0.80), the main clusters were as follows: (1A) social support and (1B) reported experiences, with the subclusters (a) psychosocial challenges and (b) grief. Moreover, comparison between the 2 groups (entanglement coefficient=0.28) showed that they shared a common cluster labeled uncertainty. Regarding emotion and sentiment analysis, patients expressed a significantly higher negative sentiment than caregivers (z=−2.14; P<.001). On the contrary, caregivers expressed a higher positive sentiment compared with patients (z=−2.26; P<.001), with trust (z=−4.12; P<.001) and joy (z=−2.03; P<.001) being the most prevalent positive emotions. Conclusions Our study emphasized different perceptions of cancer pain in patients and caregivers. We revealed different needs and emotional activations in the 2 groups. Moreover, our study findings highlight the importance of considering caregivers in medical care. Overall, this study increases knowledge about the unmet needs and emotions of patients and caregivers, which may have important clinical implications in pain management.

show abstract

Exploring emotional dynamics: Word count effects in Facebook posts by sports shoe brands

Hossain,

Babu,

Yusuf

2024

Heliyon

View full text Add to dashboard Cite

The emotional side of taking part in a cancer clinical trial

Cited by 7 publications

References 39 publications

The voices of breast cancer survivors with chronic pain: A qualitative thematic analysis of patients’ challenges to pain management

The voices of breast cancer survivors with chronic pain: A qualitative thematic analysis of patients’ challenges to pain management

Cancer Pain Experience Through the Lens of Patients and Caregivers: Mixed Methods Social Media Study

Exploring emotional dynamics: Word count effects in Facebook posts by sports shoe brands

Contact Info

Product

Resources

About