Box 2.
Topic guide for caregiver focus groups.
| Preamble: Usually medical care focuses on the physical dimension of health, like controlling pain and other symptoms, but in this discussion, our interest is focused on other aspects of illness and caregiving that affect you and the person you look after and might cause you to consider the deeper questions of life. In this study, we define questions relating to meaning, purpose and how we cope with difficult aspects of life as spiritual questions, but this might not be the word you use. Please use whatever language you want in this discussion. |
| 1. What are the deep questions your loved ones ask themselves these days? Prompt: would you describe these as spiritual? Does your loved one discuss these concerns with you? |
| 2. What about you – what are the deep questions you find yourself asking these days? |
| 3. Would you describe any of these deep questions (either your loved one’s or yours) as spiritual? If so, why? If not, why not? |
| 4. What do you understand by the word ‘spirituality’? |
| 5. What do you understand by ‘spiritual care’? |
| 6. Do you think spiritual care should be provided in healthcare? If so, why? If not, why not? |
| 7. In your opinion, what should be the role of different people in providing spiritual support in healthcare? Discuss each of nurse, doctor, GP, chaplain, social worker, psychologist, volunteer and community faith leaders. |
| Prompts: How could these people best support you? Who should initiate discussions of spirituality in healthcare? Why? |
| 8. Based on your own understanding of spirituality, what in your experience are the most helpful things a healthcare provider can do if a caregiver has spiritual concerns? Can you share an example of a caregiving interaction where you felt your spirituality was addressed? Prompts: If yes, by whom? (Were they from palliative care?) When in your loved one’s illness? What happened? What worked well? |
| If never experienced, why? (Prompts: staff time/interest, no one asked, did not want to, did not think appropriate to raise, etc.) |
| 9. What are the least helpful things a healthcare professional can do if a caregiver has spiritual concerns? Can you share an example of a caregiving interaction in a clinical setting where your spirituality was not addressed or where you were adversely affected? |
| 10. In your opinion, do you think clinical care for your loved one has addressed his or her spirituality or needs for spiritual support? Prompts: If yes, by whom? (Were they from palliative care?) When? What happened? What worked well? |
| If no, why? (Prompts: staff time/interest, no one asked, did not want to, did not think appropriate to raise, etc.) |
| 11. In your opinion as a caregiver, what are the most important areas of research to improve spiritual care? Prompts: What do you think would really improve the quality of spiritual care or help better meet your needs? |
| 12. Is there anything we did not talk about which you think it would be useful to know? |