Table 2.
Focus Group Codes, Frequencies Applied, Inter-Rater Agreement, and Definitions
| Theme | Category | Code | % coded compared to all codes | # of times codes applied | Average % agreement across 3 groups | FG1 | FG2 | FG3 | Code definition |
|---|---|---|---|---|---|---|---|---|---|
| Emotional impacts | Stress, sadness and fear | Chronic stress habituation | 0.40% | 3 | 99.9 | x | x | Being used to chronic burden of illness in lives. | |
| Dealing with uncertainty | 4.03% | 30 | 98.1 | x | x | x | Unknowns/uncertainties of cancer experience. | ||
| Emotional distress (general) | 7.26% | 54 | 98.3 | x | x | x | Emotionality and stress as it relates to cancer and its impact. | ||
| Fear of recurrence | 2.69% | 20 | 99.3 | x | x | x | Feelings of anxiety, worry, and fear related to their cancer coming back after treatment are completed. | ||
| Feeling lonely | 1.08% | 8 | 99.6 | x | x | x | Feeling isolated or lonely because of cancer. | ||
| Hard getting back to normal | 1.61% | 12 | 98.8 | x | x | x | Challenges of getting back to normal once treatment has ended. | ||
| Helpless frustration | 0.40% | 3 | 99.8 | x | x | Inconsistencies of who gets cancer and who does not, and the role of lifestyle. | |||
| Hypervigilance | 3.23% | 24 | 98.6 | x | x | x | Purposefully feeling more vigilant about symptoms, aches, pains, etc., thinking it could be their cancer coming back. | ||
| Intrusive experiences | 3.09% | 23 | 99.3 | x | x | x | Cognitive or affective cancer-specific intrusions | ||
| Precognition of cancer | 0.40% | 3 | 99.8 | x | x | An intuitive “knowing” that they had cancer or something seriously wrong with their health. | |||
| Stir crazy | 0.94% | 7 | 99.6 | x | x | Because of their cancer experience, they are provided with more time to contemplate their situation | |||
| Surprised | 1.88% | 14 | 99.6 | x | x | x | Surprise of something that occurred during the cancer experience (e.g., diagnosis, not being a BRCA 1 carrier) | ||
| Treatment decision-making | 4.30% | 32 | 96.7 | x | x | x | Discuss treatment decision-making, including the cognitive and affective components. | ||
| Waiting for the other shoe to drop | 0.27% | 2 | 99.4 | x | Feelings of a foreboding sense of something bad that is yet to happen. | ||||
| Identity changes | Body image | 1.88% | 14 | 96.4 | x | x | Changes in their body image as a result of their cancer treatment. | ||
| Describing success | 2.15% | 16 | 96.8 | x | x | x | Ways in which they feel “successful” as a cancer survivor. | ||
| Growth ambivalence | 0.27% | 2 | 99.9 | x | x | Ambivalence about ways they have grown or changed because of cancer. | |||
| Losing a part of yourself | 0.40% | 3 | 99.6 | x | x | Losing a sense or part of themselves as a result of cancer treatment or changes from it. | |||
| New normal | 2.02% | 15 | 98.8 | x | x | x | When participants discuss their new normal. | ||
| Rarity of situation | 0.27% | 2 | 99.6 | x | x | Unique nature or rarity of their cancer situation | |||
| Survival instinct | 0.81% | 6 | 99.7 | x | x | x | When participants make comments about their drive to survive. | ||
| Survivor identity | 6.32% | 47 | 95.4 | x | x | x | How they perceive themselves as a person with cancer. | ||
| Coping and self-care | Adherence | 1.88% | 14 | 99.6 | x | x | x | Doing the things they are supposed to do to comply with treatment & lifestyle recommendations. | |
| Avoidant coping | 1.48% | 11 | 99.8 | x | x | Using escape/avoidant ways of dealing with cognitive/affective aspects of their cancer. | |||
| Engaging in health behaviors | 3.09% | 23 | 98.7 | x | x | x | Wanting to or re-engaging in health behaviors. | ||
| Genetic testing | 1.08% | 8 | 99.5 | x | x | Discuss their experience with genetic testing | |||
| Inconsistent lifestyle guidelines | 0.40% | 3 | 99.7 | x | x | Inconsistencies of what they have been told by medical professionals or other sources. | |||
| Proactive cancer disclosure | 0.13% | 1 | 99.6 | x | Proactively disclose aspects of their cancer experience with others. | ||||
| Pushing through | 2.82% | 21 | 98.9 | x | x | x | Needing to see past their problems and push through for others (e.g., kids). | ||
| Religious coping | 1.61% | 12 | 99.4 | x | x | x | Using prayer, God, or spirituality to cope with their situation. | ||
| Self-care | 4.03% | 30 | 97.5 | x | x | x | Comments about their need to take care of themselves. | ||
| Self-coaching | 1.61% | 12 | 99.3 | x | x | x | Self-talk or coaching messages they give themselves to cope. | ||
| Status Quo | 3.76% | 28 | 98.7 | x | x | x | Not making any significant lifestyle changes as a result of their cancer | ||
| Use of humor | 2.69% | 20 | 99.0 | x | x | Comment on using or benefiting from humor as a way of coping. | |||
| Use of supportive care | 1.08% | 8 | 99.4 | x | x | x | Comment on their use of supportive care from medical professionals, organizations, etc. | ||
| Transcendence | Appreciation | 1.08% | 8 | 99.3 | x | x | x | Appreciating life more because of their cancer diagnosis. | |
| Higher purpose | 0.27% | 2 | 99.6 | x | x | How their cancer diagnosis and situation fall into a larger cosmic plan. | |||
| Letting go (re-prioritizing) | 2.96% | 22 | 99.2 | x | x | x | When they have been able to let things go that were bothering them | ||
| Positive transformation | 2.96% | 22 | 98.1 | x | x | x | How their lives and outlooks have been positively transformed by the cancer experience. | ||
| Slowing things down | 2.42% | 18 | 98.5 | x | x | x | Trying to slow the pace of their life down and not sweat the small stuff as a result of their cancer experience | ||
| Social Impacts | Introducing cancer to the social network | Received support | 5.78% | 43 | 96.9 | x | x | x | Discuss support they received |
| Social limitations | 1.34% | 10 | 99.3 | x | x | Being socially limited because of how cancer has impacted their lives. | |||
| Work impact | 2.28% | 17 | 97.9 | x | x | How their cancer experience has affected their ability to work. | |||
| Pressure to be fine | Being OK for others | 1.61% | 12 | 99.2 | x | x | x | When they keep up good appearances for others to help them feel better about their (patient's) cancer situation. | |
| Support ambivalence | 2.69% | 20 | 98.5 | x | x | x | Ambivalence they felt toward the support they received (or did not receive) as it related to their cancer. | ||
| Feeling abandoned, misunderstood, or invisible | Feeling let down by others | 1.21% | 9 | 98.8 | x | x | How they felt let down by those they thought were their friends when they were diagnosed. | ||
| Nobody gets it | 0.94% | 7 | 99.5 | x | x | x | Feeling misunderstood or not understood by others after treatment ends. | ||
| Survivor support | 0.81% | 6 | 99.1 | x | x | Support that they received specifically from other cancer survivors. | |||
| Wanting others to see through it | 0.54% | 4 | 99.8 | x | x | How they wish their friends and family would see through the facade of being well. | |||
| Role reversals | Caregiver coping | 0.67% | 5 | 99.5 | x | x | x | Ways in which their family and/or friends are coping with this. | |
| Caregiver stress | 0.13% | 1 | 100.0 | x | When family members and supportive others felt helpless to be able to help | ||||
| Foregone conclusion | 0.13% | 1 | 99.8 | x | How others treated them as if they were already dead. | ||||
| Role changes | 0.81% | 6 | 99.0 | x | x | Ways in which their social roles have been changed because of the cancer experience. |