The psychosocial needs of underserved breast cancer survivors and perspectives of their clinicians and support providers

Wells, Kristen J.; Drizin, Julia H.; Ustjanauskas, Amy E.; Vázquez-Otero, Coralia; Pan-Weisz, Tonya M; Ung, Danielle; Carrizosa, Claudia; Laronga, Christine; Roetzheim, Richard G.; Johnson, Kenneth H.; Norton, Marilyn; Aguilar, Rosa Cobian; Quinn, Gwendolyn P.

doi:10.1007/s00520-021-06286-7

Cited by 10 publications

(13 citation statements)

References 55 publications

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“…The program and associated training were based on the design of three previous patient navigation programs: the Moffitt Cancer Center Patient Navigator Research Program patient navigation intervention, [ 26 , 27 ] a breast cancer survivorship navigation intervention, [ 28 ] and the PrEPárate HIV prevention patient navigation intervention [ 29 ]. All of these programs were developed with extensive involvement from patients to assist diverse and lower-resourced individuals to obtain high quality, recommended health care in a timely manner [ 28 , 30 ]. Members of the study team reviewed existing program materials, including patient-facing materials and training manuals, and adapted elements of these programs based on the stress process conceptual model (Fig.…”

Section: Methodsmentioning

confidence: 99%

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization

Reblin

Wells

Otto

et al. 2022

Support Care Cancer

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Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.

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Section: Methodsmentioning

confidence: 99%

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization

Reblin

Wells

Otto

et al. 2022

Support Care Cancer

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“…Psychological/emotional needs: 32 studies described the psychological and emotional needs of breast cancer survivors [4,7,13,14,22,23,. The most frequently reported psychological and emotional needs were depression, anxiety, and stress (N=15) [4,23,27,30,34,38,[43][44][45][46][47][49][50][51] and fears about cancer spread and recurrence (N=13) [7,23,28,34,37,39,43,44,46,47,[49][50][51]. In the study conducted by Bu et al (2022), fear of recurrence was identi ed as the most important need in breast cancer survivors; it was reported by 69% of patients [44].…”

Section: Evidence Of Unmet Supportive Care Needs By Domainmentioning

confidence: 99%

“…18 studies reported social needs among breast cancer survivors [4, 14, 30, 32-35, 40, 45, 46, 49-51, 55]. The top-ranking social need was gathering support from friends and social networks/support groups [33,35,40,45,46,51,55]. Following this was the need to return to work or re-employment [4,14,32,34,44].…”

Section: Social Needsmentioning

confidence: 99%

“…This challenge related to social relationships, nancial issues, perceived utility in society, and the meaning of life [52]. Despite the fact that survivors had communication problems with others [30,33,51], they were willing to communicate with their partners, health care providers, and other people with cancer [14,33,49,50].…”

Section: Social Needsmentioning

confidence: 99%

“…Family-related needs: 13 articles reported that survivors needed support from family [33,35,40,45,46,51,55]. In the study by Wilson et al (2000), support from friends and family was reported as a positive coping strategy [33].…”

Section: Social Needsmentioning

confidence: 99%

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Supportive Care Needs of Breast Cancer Survivors: A Systematic Review

Khajoei

ZohariAnboohi

Ilkhani

2022

Preprint

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Purpose: In order to achieve optimal survival care outcomes, all health care services must be tailored to the patient's specific needs, preferences, and concerns through the survival period. This study aimed to identify supportive care needs from the point of view of breast cancer survivors. Methods: Following PRISMA guidelines for reporting systematic reviews, a comprehensive search of PubMed, Web of Science, and Scopus was performed. The inclusion criteria were all studies published from inception until the end of January 2022, covering all stages of breast cancer. The exclusion criteria were mixed type studies relating to cancer such as case reports, commentaries, editorials, and systematic review studies, as well as studies that assessed patients' needs during cancer treatment. Two quality assessment tools were used for the qualitative and quantitative studies under examination. Results: Of the 13,095 records retrieved, 40 studies, including 20 qualitative studies and 20 quantitative studies, were retained for this review. Survivors’ supportive care needs were classified into 11 domains. The most frequently mentioned supportive care needs of survivors were psychological/emotional needs (N=32), Health system/informational needs (N=30) physical and daily activities (N=19), and interpersonal/intimacy needs (N=19).Conclusions: This systematic review highlights a number of essential needs for breast cancer survivors. Supportive programs should be designed that consider all aspects of these needs, in particular the psychological/emotional and informational needs.

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Understanding the psychosocial needs of breast cancer survivors in the United Arab Emirates: a qualitative study

Aamir

Ameri

Ganesan³

et al. 2022

Discov Psychol

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Background Breast cancer is the most common cancer among women in the United Arab Emirates; yet there is little known about the psychosocial concerns of the survivors. Research shows that meeting the psychosocial needs significantly contributes to cancer survivor’s wellbeing and potentially elevates the quality of the patient’s life. Therefore the study aims to understand the psychosocial needs of breast cancer survivors through a qualitative approach. Methods A qualitative study was conducted using semi structured in-depth interviews among ten breast cancer survivors. The recorded texts were coded and salient themes were generated using an inductive approach. Thematic analysis of the interviews was done observing for meaning, repeating phrases and keywords. Results Analysis yielded three major themes which included survivors’ living experience with breast cancer, concerns of breast cancer survivors and the survivors’ expectations of healthcare delivery or support needed. The breast cancer survivors had psychosocial concerns that are not well understood and addressed by the healthcare. The experiences, concerns and expectations differ from individuals and through the continuum of survivorship. Conclusion Understanding the unmet psychosocial concerns of the cancer survivors is essential to design a structured survivorship program and offer timely and effective interventions. This would improve survivorship care in the country and offers opportunities to redesign cancer services towards patient-centred care.

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The psychosocial needs of underserved breast cancer survivors and perspectives of their clinicians and support providers

Cited by 10 publications

References 55 publications

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization

Supportive Care Needs of Breast Cancer Survivors: A Systematic Review

Understanding the psychosocial needs of breast cancer survivors in the United Arab Emirates: a qualitative study

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