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Experiences of and preferences for self-management among low grade non-Hodgkin's lymphoma survivors: A qualitative interview study

Nickola D. Pallin, Mairead O'Connor, Alannah Gannon, John Browne, Mary R. Cahill, Derville O'Shea

A recent study, supported by the Blood Cancer Network of Ireland (BCNI) and Irish Cancer Society, focused on individuals with low grade non-Hodgkin’s lymphoma (LGNHL) and their caregivers, delving into their perceptions and experiences related to self-management during the post-treatment aftercare phase. This in-depth qualitative study took place within the outpatient environment, in the Haematology Department of Cork University Hospital. Through telephone interviews, the research engaged eight LGNHL survivors and two family caregivers. These interviews, structured by topics guides, were conducted over durations of 20 to 60 minutes.

Within the study, participants described LGNHL as both an incurable and chronic condition. Collectively, they expressed enthusiasm for the implementation of self-management techniques, particularly to enhance their sense of control and empowerment. While all participants had engaged in self-management practices, these were not part of a formalized survivorship or self-management program. Patients outlined several areas where increased support during treatment and post-treatment phases could be beneficial. One area highlighted, was the need for more comprehensive information regarding treatment side effects and prescription medication. Post-treatment support, they expressed, should encompass strategies for self-managing stress, addressing the fear of recurrence, and dealing with the impact on sexual well-being and intimacy. Additionally, patients highlighted the importance of accessible and straightforward dietary advice, which is recognised as a key factor in self-management.

An unmet need emerged for support and structured reviews related to self-management, focusing on goal setting and planning, which are typically not integrated into standard care protocols. The period immediately following treatment completion was identified as a critical juncture, during which patients sought enhanced follow-up care and additional information. This phase coincided with the prominence of treatment-related side effects, which significantly influenced patients' quality of life post-cancer treatment.

In response to these findings, participants recommended the implementation of consultations, post primary treatment, with medical staff to ensure patients have appropriate support systems in place and a clear understanding of self-management techniques. The study participants expressed a positive interest in specialized programs centred around dietary guidance, healthy eating protocols, mindfulness sessions, and information on stress reduction and relaxation techniques.

This study reinforces existing findings that social support via peer groups and cancer centres plays a pivotal role in offering valuable encouragement to survivors throughout their self-management journey. Participants in the study underscored the necessity of increasing awareness regarding these support groups and networks. By actively promoting patient engagement with such services, healthcare professionals could potentially alleviate the hesitancy observed among certain study participants towards participation.

While self-management support programs are currently available for cancer survivors, this study specifically addresses the distinctive requirements of lymphoma patients, shedding light on the unique challenges they encounter. These insights could aid in the development of a customized program tailored to the needs of LGNHL survivors. Overall, participants displayed a positive attitude towards self-management, given the chronic nature of LGNHL.