Table 4 Codes, definitions, number of times code was applied, and illustrative participant responses regarding life impact of HDGC syndrome
Code | Definition | Numbera | Illustrative Participant Response |
|---|---|---|---|
Reproduction | HDGC syndrome has caused individuals’ to make decisions, seek information, or pursue medical interventions relevant to reproduction | 12 | “I am a gay male, so option = bio or adopt. Being diagnosed with HDGC just made it certain I would not try to have my own biological kids.” [ID 18] |
Social | HDGC syndrome has caused changes in individuals’ interpersonal relationships (e.g., marriage, work) and social functioning | 10 | “Broke up relationship I was in at the time because I decided kids were not going to be an option.” [ID 13] |
Cancer screening, prevention, and health behaviors | HDGC syndrome has caused individuals to pursue and/or be more mindful about cancer screenings, prevention interventions (e.g., gastrectomy), and overall health | 7 | “Significant impact on life – having gastrectomy, decision to pursue PGD in future for childbearing, and weighs into decisions about job change (can't take different job as the health benefits aren't as good as my current job). Decisions regarding breast screening; prophylactic mastectomy in the future?” [ID 17] |
Overall health | HDGC syndrome has had an impact on individuals’ health (e.g., diet, cognitive functioning, energy, pain) | 6 | “Can't eat regular meals, energy levels are not what they used to be.” [ID 1] |
Concerns about children | HDGC syndrome has caused individuals to worry about their children's and family’s future health and wellbeing | 5 | “Honestly, I think I have made my way through life... assuming that I would have a shorter lifespan than normal. Retirement was not something I planned for. As I age, I think I need to think about that more. Hopefully, I will be around to help my daughter deal with a life like mine.” [ID 11] |
Emotional distress | Living with HDGC syndrome has created feelings of distress such as depression or anxiety | 4 | “Having cancer resulted in my divorce. I worry about my children all the time, which has caused stress and severe depression.” [ID 3] |