The impact of chronic pain on the quality of life and on the functional capacity of cancer patients and their caregivers

Izzo, Juliana Martins; Cunha, Ana Marcia Rodrigues; Cesarino, Cláudia Bernardi; Martins, Marielza Regina Ismael

doi:10.5935/2595-0118.20190062

Cited by 8 publications

(2 citation statements)

References 21 publications

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“…This may be due to patients’ loss of autonomy and functionality that can contribute to creating a co-dependence mechanism of the patients on their partners [ 10 ]. Such an increased need for care may result in a perceived burden on the family members [ 47 , 48 ]. For instance, this sense of burden was well represented in one of the posts from our data.…”

Section: Discussionmentioning

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

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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.

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Section: Discussionmentioning

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

View full text Add to dashboard Cite

show abstract

“…Based on its duration, pain can be categorized as acute or chronic, with chronic pain lasting longer than three months [ 2 ]. Chronic pain in particular affects 40–70% of the patients with a cancer diagnosis and approximately 32% of these cases are estimated to be undertreated, which compromises the Quality of Life (QoL) of both patients and their caregivers [ 3 , 4 , 5 , 6 , 7 , 8 ]. Additionally, pain leads to an increase in medical expenditures and significant economic costs [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

Cancer Patients with Chronic Pain and Their Caregivers during COVID-19: A Descriptive Study

et al. 2023

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Background: The sanitary measures imposed by COVID-19 intensified challenges in the pain management of cancer patients. Methods: A descriptive study was conducted in a chronic pain unit of an oncological hospital aiming to explore the experiences of cancer patients with chronic pain and their caregivers during the pandemic period, as well as identify strategies to improve care in chronic pain management. An electronic questionnaire was developed containing sociodemographic variables, the Depression, Anxiety and Stress Scale-21, and open-ended questions exploring the experiences and circumstances of pain management. Results: A total of 30 patients and 13 caregivers filled in the questionnaire. Patients revealed a higher level of depression, anxiety, and stress than caregivers, without statistically significant differences. Both groups mentioned having experienced difficulties in self-care, particularly in relation to sleep, nutrition, and recreation. In total, 83.7% patients needed pain relief medication related to uncontrolled pain. Both mentioned that they would have benefited from a digital application to ease the communication with the healthcare professionals of the chronic pain unit, as well as non-pharmacological interventions, such as therapeutic massage. Conclusions: Recognizing that chronic pain leads to significant limitations, it is essential to implement and anticipate objective and effective responses in pain management.

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Navigating the emotional landscape: exploring caregivers’ journey alongside breast cancer survivors with chronic pain

Filipponi,

Masiero,

Chichua

et al. 2024

Support Care Cancer

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Purpose Caregiving is a crucial but frequently overlooked part of cancer care, as well as the main emotions experienced by caregivers during that journey. This qualitative study aimed to explore the emotional landscape of informal caregivers in supporting breast cancer survivors (BCs) living with chronic pain (CP). Methods We conducted 3 focus groups with informal caregivers of BCs with CP. For the sentiment analysis, we used R Software and the NRC Emotion Lexicon following Plutchik’s theoretical framework of emotions. The emotion spectrum was visualized using the “PyPlutchik” package in Python. Results Caregivers (M age = 43.17, SD = 10.97) predominantly experienced negative emotions ( n = 65; M = 0.06, SD = 0.25) compared to positive ones ( n = 37; M = 0.10, SD = 0.31), with sadness ( n = 46), fear ( n = 43), and disgust ( n = 37) being most common, alongside feelings of remorse ( n = 37), despair ( n = 41), and shame ( n = 37). The COVID-19 pandemic, as reported by caregivers, also intensified feelings of shame, frozenness, and ambivalence. Despite more frequent negative sentiments, trust ( n = 53) and hope ( n = 24) were consistently expressed, indicating a complex emotional landscape where positive and negative feelings coexist. Discussion This study identifies the broad spectrum of emotions experienced by caregivers in the context of BCs with CP, ranging from individualistic feelings (e.g., fear, despair) to social emotions (e.g., shame, frozenness), and even includes instances of positive emotions (e.g., trust, hope). While our study highlights the emotional toll on caregivers, we suggest that future research and interventions focus more on providing effective support frameworks to manage these emotional challenges. Any discussion regarding the specific impacts of these emotional experiences on clinical outcomes (e.g., quality of life, fear of cancer recurrence) should be approached with caution. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-024-09064-3.

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The impact of chronic pain on the quality of life and on the functional capacity of cancer patients and their caregivers

Cited by 8 publications

References 21 publications

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

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

Cancer Patients with Chronic Pain and Their Caregivers during COVID-19: A Descriptive Study

Navigating the emotional landscape: exploring caregivers’ journey alongside breast cancer survivors with chronic pain

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