BACKGROUND:Cancer care partners (also known as caregivers or caretakers) are individuals without formal training or experience in cancer care who provide health or social support to others with cancer. Care partners are oftentimes family or friends of people with cancer. While the experiences of cancer care partners are well documented, little is known about the moral challenges they face. The purpose of this analysis was to explore the moral landscape of cancer care partners' experiences across disease and treatment trajectories. METHODS:We used the HEXI methodology and dimensional analysis to conduct an analysis of qualitative data from individual interviews with 22 cancer care partners. Interviews were audio-recorded, transcribed verbatim, and aligned before being analyzed for the purpose of this analysis. RESULTS:Our analysis resulted in a situation specific theory of how cancer care partners navigate the range of moral challenges they experience. Through the conceptual perspective of The Role, cancer care partners navigate moral challenges through collaborating in care with healthcare teams, other care partners, other support persons, or the people they are caring for. Prior to seeking collaborative care in these ways, a cancer care partner must have a sense of perceived collaboration efficacy. If collaborating in care is successful, cancer care partners can achieve moral resolution regarding the moral challenges initially faced. However, if collaborating in care is unsuccessful, the cancer care partner remains stuck in a morally challenging situation. CONCLUSIONS:Future inquiry should empirically extend and refine this situation specific theory in heterogeneous populations. Practice and policy efforts can help improve care for cancer care partners, including direct communication and moral care partner-inclusive supportive care.
BACKGROUND:In Canada, prenatal cell-free DNA screening is mainly used as a second-tier screening test that targets specific aneuploidies, namely trisomy 21, 18 and 13. METHODS:Within the PEGASUS-2 study, we conducted in-depth interviews with 11 individuals living with a genetic condition currently or potentially detectable by this screening method, to explore their opinions regarding its potential implementation as a first-tier test, and the expansion of its scope. RESULTS:Qualitative analysis revealed that, although some individuals appreciated an early result with the test, they generally considered prenatal screening to be a predetermined route to termination of pregnancy. Participants felt that this social expectation reflects negative attitudes toward people who are genetically different. They feared that a more accessible and expanded test would accentuate the slippery slope toward eugenic tendencies in society. Thus, broadening its scope could be beneficial only in the case of conditions deemed severe on the basis of viability and quality of life criteria. While parents of children living with Down syndrome were reluctant to support screening, based on their challenging but rewarding experiences, people living with sex chromosome anomalies (SCAs) were supportive of its use to detect SCAs, to enable better prenatal preparation. All felt that screening should be accompanied by better, balanced, and more transparent information, to ensure it is a tool that promotes reproductive autonomy. Additional findings include a recurring comparison between Down syndrome and autism spectrum disorder regarding the future provision of prenatal screening, the use of "battle" metaphors to describe the prenatal journey, and reflections on the role of adoption as an alternative to termination. CONCLUSION:These perspectives, informed by lived experiences, should inform recommendations on the implementation of prenatal screening in Canada.
BACKGROUND:Global health researchers are celebrating notable success in their efforts to develop preventive vaccines to curb the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) pandemic. HIV vaccine trial participants play a vital role, devoting their time, effort, and bodies to HIV prevention success. However, the conclusion of vaccine trials often shifts the spotlight from trial participants to the broader implications of the trial results, which may leave participants feeling neglected or abandoned. Little is documented regarding participants' psychological wellbeing after HIV vaccine trials end. AIM:This study aimed to explore psychological harms experienced by former trial participants after participation in HIV vaccine trials in Tanzania. METHODOLOGY:This qualitative study is part of a larger sequential exploratory mixed-methods design that aimed to explore the nonphysical risks and benefits of HIV vaccine trial participation and their effects on peoples' willingness to participate in similar trials. A snowball technique was used to sample 25 former trial participants and 11 researchers who conducted HIV vaccine trials from 2007 to 2015 in Tanzania. In-depth interviews were conducted followed by thematic qualitative analysis. RESULTS:The findings of this study reveal that former trial participants experienced psychological harms, categorized by three distinct themes: (1) psychological uncertainties, (2) dependance on the trials and (3) unmet emotional needs. Both trial researchers and former trial participants concurred on the first two themes. But the third theme-unmet emotional needs-was deeply personal to individual participants and hence reported by only the former trial participants. CONCLUSION:The psychological uncertainties experienced by former trial participants were expected to be prevented by the extensive education and information provided during the trials. Dependance to the trial could indicate the need for continuation of incentives such as free medical care and it is not uncommon in most low- and middle-income settings. Researchers in collaboration with Institutional Review Boards/Research Ethics Committees (IRBs/RECs) and community research stakeholders should agree on balanced incentives for specific vaccine trials that will not instill unrealistic expectations. Continuous participant engagement could provide an opportunity for trial results dissemination and correcting misconceptions as well as addressing the emotional needs of former trial participants. Future research should assess the extent of post-trial uncertainties and their effect on participants' mental health, which may affect their attitudes toward participation in similar future trials and their trust in research.
