Results of an Online Community Needs Assessment for Psychoeducational Interventions Among Partners of Hereditary Breast Cancer Previvors and Survivors

Abstract

BackgroundSpouses and partners (“partners”) of women at-risk for (“previvors”) and surviving with hereditary breast/ovarian cancer are a primary source of support within their families. Yet, little is known about partners’ needs for psychoeducational intervention to enhance their cancer risk knowledge, coping, and support role functioning.ObjectiveTo determine the type and range of need for psychoeducational intervention among partners of hereditary breast cancer previving and surviving women, and to understand the potential role of the Internet and other communication channels in meeting that need.MethodsWe conducted a secondary data analysis on partners’ needs that were originally assessed via an online community-based organization devoted to hereditary breast cancer. Partners’ demographic characteristics, need for psychoeducation, and likelihood of using various communication channels were assessed along with other constructs. Analyses examined commonly-occurring clusters of likely intervention use and by communication channel.ResultsPartners (n =143) endorsed a moderately high level of need for psychoeducation and did so across multiple content areas (e.g., role functioning, decision making, communication, intimacy). Factor analysis identified three commonly-preferred communication channels: 1) self-help materials, 2) online interactions, and 3) interpersonal interactions. A cluster analysis among these factors identified three groups of partners based on their likelihood of psychoeducational intervention use (low [18%], moderate [55%], and high [27%] users). In a covariate-adjusted MANOVA, moderate and high intervention users reported significantly greater need for psychoeducation compared to low users (F2,132 = 9.15, P < .001).ConclusionsA majority of assessed partners perceived a need for psychoeducational interventions surrounding hereditary breast cancer risk. Internet-based, interactive resources may be an efficient mechanism to reach large numbers of partners with tailored content. Research is warranted to inform the design and deployment of these resources to ensure quality and high impact, and ultimately to examine ways to integrate these resources into clinical care.

Distress and the parenting dynamic among BRCA1/2 tested mothers and their partners.

“…Partners of women undergoing genetic testing for BRCA1/2 may face an especially challenging dilemma: they are a primary source of support for women who undergo genetic testing, yet they may also experience distress themselves and have limited access to supportive resources (Tercyak et al, 2012; Mireskandari et al, 2007; Patenaude et al, 2006; Sherman, Kasparian, & Mireskandri, 2010). Indeed, emerging data suggest that partners of women who are at risk for hereditary breast/ovarian cancer perceive a need for supportive interventions to help them cope with their partner’s risk of cancer and to better prepare them to provide support during the genetic counseling and testing process (Tercyak et al, 2012). Through a dyadic perspective, our results provide empirical support for the need to develop targeted interventions to help parents engage in shared decision making surrounding the communication of BRCA1/2 test results to their children.…”

“…Women who undergo BRCA1/2 genetic counseling and testing express a high level of need for supportive resources offered through diverse delivery methods (e.g., in-person, print materials) (Sharff et al, 2012; Tercyak et al, 2007). Recent data show that partners express a similarly high level of need for supportive resources delivered through both electronic (e.g., internet) and more traditional media (e.g., print materials) (Sharff et al, 2012; Tercyak et al, 2012). While the clinical context of genetic counseling may be an opportunity to engage partners who attend counseling sessions with tested mothers, couples-oriented interventions that can be offered as adjuncts to clinical care may be optimal, as a minority of partners attend genetic counseling sessions with tested women (DeMarco et al, 2010).…”

“…This is an important area for future investigation.Nearly all partners in this study were males who were biological parents of the target child, which prevented subgroup analyses based on partners’ gender. Emerging data suggest a need to address diversity among partners of those tested for BRCA1/2 mutations, such as among same-sex couples, which is an important avenue of future research (Tercyak et al, 2012). …”

Use and Taxonomy of Social Media in Cancer-Related Research: A Systematic Review

“…Studies most often focused on breast cancer (n = 22; 31.9%),8,10,12,13,16,17,22,25,26,28–30,35,41–43,45,58,60,66,74,75 and prostate cancer (n = 4; 5.8%). 36,56,67,76 Other cancers mentioned were osteosarcoma, 73 rhabdomyosarcoma, 55 testicular, 11 skin, 23 cervical, 37,53,59,65 ovarian, 21, lung, 34 and colorectal.…”

“…Other descriptive studies (n = 12; 17.4%; Table 2) used surveys, 11,23,24,28,40,43,46,59,60,63,65,74 in-depth interviews, 47 focus groups, 48 social network analyses, 20,68 a mix of measurement techniques, 8,9,13,22,30,39 Web metrics, 72,73 and frequencies 62 to describe how users employed social media to obtain and receive cancer information. It is important to note that only 1 of these studies reviewed the accuracy of information posted on a social media site (YouTube); it reported that roughly 75% of all videos had either fair or poor information about prostate cancer screening.…”