Lived Experiences for Supportive Care Needs of Women with Breast Cancer-Related Lymphedema: A Phenomenological Study

Abstract

This descriptive phenomenological study was conducted to explore the lived experiences for supportive care needs of women with breast cancer-related lymphedema. Purposive sampling was used to recruit participants. In-depth, semi-structured interviews were conducted to collect data. Thematic analysis method was used for data analysis. Data saturation was achieved after interviewing 19 participants. The study was divided into four main themes and nine subthemes: physical (caused by difficulties in performing household chores, limitations in performing self-care activities, and challenges in shopping), psychosocial (being addicted to someone else in daily life, uncertainty about the future, social, and religious support), healthcare systems and information (attention from healthcare professionals, education and lifestyle advices, and access to healthcare sources), and financial supportive care needs. Women experience various SCNs in their daily lives. Provision of supportive care from both family members or others and healthcare professionals could ease the daily lives, improve physical, and psychosocial well-being.

Development and psychometric evaluation of a lymphoedema self‐management behaviour questionnaire for breast cancer patients

“…The simplified Chinese version of this scale has been validated in previous study (Li, 2012). Relevant study shown that external support was an important facilitator of lymphoedema selfmanagement (Arikan Dönmez et al, 2021), so the simplified Chinese Medical Outcome Study Social Support Scale was used in this study to test the convergent validity of the LSMBQ. First, the high-low grouping comparison method was used to analyse the discrimination of each item (Wu, 2010).…”

“I never heard anything about it”: Knowledge and psychosocial needs of Latina breast cancer survivors with lymphedema

“…4 Women with BCRL may experience persistent swelling of the arm, hand, breast, and/or chest; feelings of heaviness or fullness; decreased mobility; aching or tingling; and skin tightness or hardening in the affected region. [4][5][6] There is no cure for BCRL; therefore, it requires diligent consistent care to manage the condition. 4 Research on women's experiences with BCRL has been conducted primarily with White non-Latina women in the United States and internationally.…”

“…9,10,12 To avoid the appearance of having a disability, and to prevent others from staring and asking questions, women may try to hide their compression sleeves or not wear them in public. 5,12 Given the challenge of finding clothes that fit, women also may spend considerable time dressing. 5,6 Some women have reported that BCRL serves as a reminder of their breast cancer diagnosis and treatment, 10 triggering fears of recurrence and worry.…”

“…5,6 Some women have reported that BCRL serves as a reminder of their breast cancer diagnosis and treatment, 10 triggering fears of recurrence and worry. 5 Studies conducted with a majority of non-Latina White women in the United States and abroad show that women with BCRL have better psychological outcomes when drawing on social support, engaging in faith-based practices, and using active coping strategies. 5,7 Even though several factors place Latina women at risk for lymphedema, there is a dearth of information about their experiences with BCRL.…”

“…5 Studies conducted with a majority of non-Latina White women in the United States and abroad show that women with BCRL have better psychological outcomes when drawing on social support, engaging in faith-based practices, and using active coping strategies. 5,7 Even though several factors place Latina women at risk for lymphedema, there is a dearth of information about their experiences with BCRL. Compared to non-Latina White women, Latinas are more likely to be diagnosed with larger tumors, 13 at later disease stages, 13 and with more aggressive cancer types; 13,14 to have mastectomies; 15 to receive unnecessary axillary surgery; 16 to be diagnosed before the age of 50; 17 to have limited access to healthcare, and to have lower levels of income and formal education.…”