Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study

Well, Andrew; Lamari-Fisher, Alexandra; Taylor, Kimberlee; Ulack, Christopher; Lee, Rachel; Affolter, Jeremy T.; Colucci, Jose; Diest, Heather Van; Carberry, Kathleen E.; Johnson, Gregory P.; Fraser, Charles D.; Mery, Carlos M.

doi:10.1017/s1047951122003882

Cited by 1 publication

(1 citation statement)

References 23 publications

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“…Next, the facilitator conducted group discussions with survivors. For the first 30 min, the experience group method20 was utilized, in which survivors were invited to openly discuss their health goals and experiences while the team recorded structured field notes. This method enables exploration of experiences and is specifically useful for identifying barriers.…”

Section: Methodsmentioning

confidence: 99%

Assessing gaps in motherhood after cancer: development and psychometric testing of the Survivorship Oncofertility Barriers Scale

Hoffman

Denham

et al. 2023

Int J Gynecol Cancer

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ObjectiveWith a growing population of young cancer survivors, there is an increasing need to address the gaps in evidence regarding cancer survivors’ obstetric outcomes, fertility care access, and experiences. As part of a large research program, this study engaged survivors and experts in co-developing and testing the validity, reliability, acceptability, and feasibility of a scale to assess survivor-reported barriers to motherhood after cancer.MethodsScale items were developed based on literature and expert review of 226 reproductive health items, and six experience and focus groups with 26 survivors of breast and gynecological cancers. We then invited 128 survivors to complete the scale twice, 48 hours apart, and assessed the scale’s psychometric properties using exploratory factor analyses including reliability, known-group validity, and convergent validity.ResultsItem development identified three primary themes: multifaceted barriers for cancer survivors; challenging decisions about whether and how to pursue motherhood; and a timely need for evidence about obstetric outcomes. Retained items were developed into a 24-item prototype scale with four subscales. Prototype testing showed acceptable internal consistency (Cronbach’s alpha=0.71) and test-retest reliability (intraclass correlation coefficient=0.70). Known-group validity was supported; the scale discriminated between groups by age (x=70.0 for patients ≥35 years old vs 54.5 for patients <35 years old, p=0.02) and years since diagnosis (x=71.5 for ≥6 years vs 54.3 for<6 years, p=0.01). The financial subscale was correlated with the Economic StraiN and Resilience in Cancer measure of financial toxicity (ρ=0.39, p<0.001). The scale was acceptable and feasibly delivered online. The final 22-item scale is organized in four subscales: personal, medical, relational, and financial barriers to motherhood.ConclusionThe Survivorship Oncofertility Barriers Scale demonstrated validity, reliability, and was acceptable and feasible when delivered online. Implementing the scale can gather the data needed to inform shared decision making and to address disparities in fertility care for survivors.

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Section: Methodsmentioning

confidence: 99%