MOMSonLINE: Lessons Learned From a Feasibility RCT of Online Support for Mothers Bereaved by Perinatal Loss.

Online support groups are popular for peer support, particularly for uncommon or stigmatized topics including pregnancy and infant loss. We conducted a randomized, controlled, 6-week feasibility study of three groups: an anonymous BabyCenter.com loss support group, a closed Facebook loss group, or a control group. Intervention arm mothers were asked to sign on to their support sites for 6 weeks. Participants completed regular surveys, text message surveys after each log-in, and a final semistructured phone interview. Thirty women were randomized to each arm of the study. Women reported preference for anonymous groups and found it empowering to support others, although many noted an emotional cost to reading postings. Tracking usage online was a major issue despite multiple strategies to collect these data. This pilot demonstrated feasibility of a randomized trial for online perinatal support but noted a critical need for more reliable methods to track usage.

Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities.

Although the 4 million+people in the U.S. with an intellectual or developmental disability (I/DD) experience the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer.

BACKGROUND: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations determine values/preferences that guide shared decision-making and goals of treatment, including end-of-life care when cancer progresses. Initiating PCEOL conversations is challenging for clinicians. OBJECTIVE: This study describes the development and validation of an instrument that measures AYA readiness to engage in PCEOL clinical conversations. METHODS: A Ready-to-Talk Measure (R-T-M) was developed, guided by the revised conceptual model of readiness across 3 domains (awareness, acceptance, and willingness). Content experts evaluated validity, and 13 AYAs with advanced cancer participated in cognitive interviews. Acceptability (item applicability, clarity, interpretation, sensitivity, missingness) and experiences (benefit, burden) were analyzed. RESULTS: The scale content validity index was ≥0.90 for each domain. Forty-two of the 55 R-T-M items were acceptable without any change. Three items were deleted. Ten items were modified, and 3 were added. Adolescents and young adults wanted more items about friends/siblings and about AYA unique qualities for clinicians to know them better. Adolescents and young adults acknowledged benefit through talking about difficult, relevant topics. CONCLUSION: Ready-to-Talk Measure validity was strengthened by deleting or modifying unclear or misinterpreted items and by adding items. Next steps include psychometric analysis to determine reliability/dimensionality and stakeholder input to make the R-T-M a clinically useful tool. IMPLICATIONS FOR PRACTICE: Ready-to-Talk Measure assessment of readiness to engage in PCEOL conversations while identifying unique preferences of AYAs holds promise for facilitating ongoing discussions.

Exposing the Risks of Social Media Recruitment in Adolescents and Young Adults with Cancer: #Beware.

Enrolling adolescents and young adults (AYAs) in psychosocial research studies during cancer treatment is challenging. Successful AYA study recruitment not specific to oncology patients supports social media network advertising and recruitment strategies. However, this brief report describes several challenges to recruiting an appropriate and credible anonymous sample while conducting Institutional Review Board-approved research using social media recruitment. Namely, ethical oversight impeded access to AYAs with cancer and monetary remuneration allured many noneligible AYA participants who accessed the online survey. Lessons learned from this study provide caution for researchers interested in a similar approach and illustrate ways to determine credibility of findings.

Conducting end-of-life research: strategies for success.

Conducting studies at the end of life is often challenging for researchers due to the sensitive nature of the research, the vulnerability of the participants and the inherent methodological complexities. Methodological challenges include identifying and gaining access to eligible research participants, estimating the duration of patient survival time in the study, minimizing the potential burden of data collection, and attending to issues of consent and confidentiality. In this paper, the authors identify challenges when conducting end-of-life research and draw from collective research experiences to describe strategies to achieve success.

The parental experience of pregnancy after perinatal loss.

OBJECTIVE: To review the research literature on the parental experience of pregnancy, primarily maternal, subsequent to perinatal loss. DATA SOURCES: Computerized searches on CINAHL and PubMed databases. STUDY SELECTION: Articles from indexed journals relevant to the objective were reviewed from January 1997 to December 2007. Only research-based studies in English were included. DATA EXTRACTION: The review was performed using the methodology of Whittemore and Knafl (2005). Data were extracted and organized under headings: author/year/setting; purpose; sample; design/instruments; results; and nursing implications for parents during a pregnancy following a perinatal loss. DATA SYNTHESIS: Depression and anxiety are frequently seen in pregnant women subsequent to a perinatal loss. The parental experience is filled with intense and conflicting emotions as parents balance being hopeful while worrying about another potential loss. CONCLUSIONS: It is important for health care providers to evaluate the woman's obstetric history, acknowledge and validate previous perinatal loss, and discuss with her what would be helpful during the prenatal period with respect to the previous perinatal loss.