Relationship between codes, descriptive themes and analytical themes
| Analytical themes | Descriptive themes | Codes |
| Multiple voices; managing caregiver and healthcare professional roles in decision-making | Value of multidisciplinary teams Variation in roles in decision-making | Effective coordination |
| Palliative care involvement | ||
| Value of nursing staff | ||
| Balancing caregiver autonomy with clinical paternalism | ||
| Effective coordination | ||
| Joint decision | ||
| All voices heard | ||
| Components facilitative of shared decision-making | Types of information caregivers would have valued Engagement with others with | “It's that everyday living that wasn't explained” |
| Presented with all the facts | ||
| Home nursing | ||
| similar lived experiences Helpful qualities of clinician/ | Long-term ventilation as lived | |
| Peer support and friendship | ||
| caregiver interaction | Patience, honesty and understanding | |
| Using lay language and assessing understanding | ||
| Continuity of clinician and dialogue | ||
| Caregiver positionality in the decision-making process | Primitive drives and faith Intense emotions and their impact on information processing | Getting home |
| Preserving life | ||
| Religion and spirituality | ||
| Weight of the decision | Shock and feeling overwhelmed | |
| Grief | ||
| Loss of hope | ||
| Making sense of information | ||
| Is this the right thing to do? | ||
| Best interests of the child | ||
| Guilt | ||
| Impact on family | ||
| “Can I do this?” |