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A qualitative exploration of race-based differences in social support needs of diverse women with breast cancer on adjuvant therapy.

ABSTRACT: OBJECTIVE:Social support is a critical component of breast cancer care and is associated with clinical and quality of life outcomes. Significant health disparities exist between Black and White women with breast cancer. Our study used qualitative methods to explore the social support needs of Black and White women with hormone receptor-positive breast cancer on adjuvant endocrine therapy (AET). METHODS:We conducted four focus group (FG) interviews (N = 28), stratified by race (ie, Black and White) and time on AET. FGs were audiotaped, transcribed, and analyzed according to conventions of thematic analysis. RESULTS:Participants noted the importance of having their informational and emotional social support needs met by friends and family members. White participants reported support provided by others with breast cancer was crucial; Black women did not discuss other survivors as part of their networks. Notably, both White and Black participants used the FG environment to provide experiential social support to each other. CONCLUSIONS:White participants noted that having other breast cancer survivors in their support network was essential for meeting their social support needs. However, Black participants did not reference other breast cancer survivors as part of their networks. Cancer centers should consider reviewing patients' access to experiential support and facilitate opportunities to connect women in the adjuvant phase.

SUBMITTER: Paladino AJ

PROVIDER: S-EPMC6402972 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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A qualitative exploration of race-based differences in social support needs of diverse women with breast cancer on adjuvant therapy.

Paladino Andrew J AJ Anderson Janeane N JN Graff J Carolyn JC Krukowski Rebecca A RA Blue Ryan R Jones Tameka N TN Buzaglo Joanne J Kocak Mehmet M Vidal Gregory A GA Graetz Ilana I

Psycho-oncology 20190205 3

<h4>Objective</h4>Social support is a critical component of breast cancer care and is associated with clinical and quality of life outcomes. Significant health disparities exist between Black and White women with breast cancer. Our study used qualitative methods to explore the social support needs of Black and White women with hormone receptor-positive breast cancer on adjuvant endocrine therapy (AET).<h4>Methods</h4>We conducted four focus group (FG) interviews (N = 28), stratified by race (ie, ...[more]

PMID: 30636189

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Project description:BACKGROUND:While online health social networks (OHSNs) serve as an effective platform for patients to fulfill their various social support needs, predicting the needs of users and providing tailored information remains a challenge. OBJECTIVE:The objective of this study was to discriminate important features for identifying users' social support needs based on knowledge gathered from survey data. This study also provides guidelines for a technical framework, which can be used to predict users' social support needs based on raw data collected from OHSNs. METHODS:We initially conducted a Web-based survey with 184 OHSN users. From this survey data, we extracted 34 features based on 5 categories: (1) demographics, (2) reading behavior, (3) posting behavior, (4) perceived roles in OHSNs, and (5) values sought in OHSNs. Features from the first 4 categories were used as variables for binary classification. For the prediction outcomes, we used features from the last category: the needs for emotional support, experience-based information, unconventional information, and medical facts. We compared 5 binary classifier algorithms: gradient boosting tree, random forest, decision tree, support vector machines, and logistic regression. We then calculated the scores of the area under the receiver operating characteristic (ROC) curve (AUC) to understand the comparative effectiveness of the used features. RESULTS:The best performance was AUC scores of 0.89 for predicting users seeking emotional support, 0.86 for experience-based information, 0.80 for unconventional information, and 0.83 for medical facts. With the gradient boosting tree as our best performing model, we analyzed the strength of individual features in predicting one's social support need. Among other discoveries, we found that users seeking emotional support tend to post more in OHSNs compared with others. CONCLUSIONS:We developed an initial framework for automatically predicting social support needs in OHSNs using survey data. Future work should involve nonsurvey data to evaluate the feasibility of the framework. Our study contributes to providing personalized social support in OHSNs.

Project description:IntroductionApproximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design.MethodsThrough a co-produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical-realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns.ResultsTen people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs.ConclusionDespite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms.Patient or public contributionThis work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.

Project description:Aims and objectivesTo provide guidance to nurses by examining how critical care nurses perceive and perform the family support person role during resuscitation.BackgroundNurses can serve as family support person when families witness a loved one's resuscitation. However, few studies have examined the role of family support person to provide nurses with sufficient knowledge to enact the role.DesignAn exploratory-descriptive qualitative design with individual, semi-structured interviews.MethodsSixteen critical care nurses who had served as family support person completed interviews. The data were analysed by thematic analysis. COREQ guidelines were followed.ResultsSix themes were identified: Hard but Rewarding Role, Be With, Assess, First Moments, Explain and Support. Findings explicated nurses' perceptions of the role and key role activities.ConclusionsNurses perceived the role as hard but rewarding. Role challenges included the need for quick, accurate assessments and interventions to keep family members safe, informed and supported, while allowing them to witness resuscitation. Key role activities included: being fully present and compassionately attentive to family, continuously assessing family members, coordinating the first moments when family presence during resuscitation commences, explaining in simple, tailored terms the resuscitation activities, and supporting the family emotionally and psychologically through a variety of strategies. Nurses noted the high variability in how families respond and the complexity of simultaneously performing the multi-faceted role activities.Relevance to clinical practiceTo effectively support the growing global trend of family presence during resuscitation, nurses need the knowledge this study provides about how to fulfil the family support person role. Identifying the role activities may facilitate development of clinical guidelines and educational preparation for the role. Nurses can refine the many skills this role requires, building their competence and confidence, to increase opportunities for family members to experience family presence during resuscitation in a safe, and high-quality manner.

Dataset Information

A qualitative exploration of race-based differences in social support needs of diverse women with breast cancer on adjuvant therapy.

Publications

A qualitative exploration of race-based differences in social support needs of diverse women with breast cancer on adjuvant therapy.

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