Summary of supportive care needs: practical/daily living and information/education domains
| Needs domain and category | Studies n | Individual reporting need | Representative quotes | |
| Patient | Caregiver | |||
| Practical/daily living# | “He can't bend over. If he bends over, forget it. So I empty out the bottom of the dishwasher. He empties the top, because he likes to participate” (caregiver of patient with IPF) [13] “Even showering becomes a problem; you do it in stages. And someone has to be here” (patient with IPF) [18] “… just the inconvenience of it all (oxygen therapy) and the stupid line all over the house, and I trip on, because it's always – my leash, as my husband calls it” (patient with IPF using oxygen for 9–12 months) [26] “If there was a plan, if we knew what was going on, then we could make decisions…. There are no standard procedures for end-of-life decision makers” (advocate) [15] | |||
| Loss of independence/decreased ability to perform activities of daily living | 9 | |||
| Financial burden/loss of income | 7 | |||
| End-of-life planning (insufficient information/do not have a plan) | 7 | |||
| Requiring more time, planning and adaptation both inside and outside of home | 7 | |||
| Physical challenges of transporting oxygen | 6 | |||
| Given up hobbies | 6 | |||
| Concerns with oxygen limitation outside of home | 3 | |||
| Physical challenges of using oxygen at home | 3 | |||
| Information/education¶ | ||||
| Disease progression and prognosis | 14 | “I am dissatisfied; the disease was not explained to me. I feel like people assumed I know, but in general it felt like you were left, like, in the corner” (non-IPF patient) [21] “I remember searching on the Internet, and thinking, ‘I'll probably be dead next week.’ In the beginning, because you know so very little, it can be very frightening. It was so confusing” (patient with IPF) [31] “They say you are like this and that's how you are going to end up like. And you think, what's going to happen in between?’ (patient with IPF) [34] “[W]hen I went to see him a month or two back, he said, ‘Are you using your oxygen?’ I said, ‘No’. I said, ‘It's too bloody hard to connect’…. He said, ‘It's the easiest thing you can do. Why haven't you tried it?’ I said, ‘No one has told me how easy it is”’ (patient with IPF who had ceased antifibrotic therapy) [16] “[I]t would be wonderful to have, once-a-month, a highlight on somebody who says “Yeah, I've been dealing with this for 11 years, this is what my life is like” instead of reading some statistic” (patient with IPF) [23] “It is difficult for us to help them, we would like to have more information about what we should do at home” (caregiver of patient with IPF using pirfenidone) [8] | ||
| Supplemental oxygen, including travel with oxygen | 13 | |||
| Pharmacological treatments | 11 | |||
| Planning for end-of-life | 11 | |||
| Coping strategies | 9 | |||
| Managing symptoms (breathlessness and cough) | 8 | |||
| Non-pharmacological treatments/ alternative therapies | 7/1 | |||
| Research and clinical trials | 7 | |||
| Pathophysiology | 6 | |||
| How to provide practical/emotional care for loved one with pulmonary fibrosis | 4/2 | |||
| Lung transplantation | 5 | |||
| Understanding tests used for diagnosis and monitoring | 4 | |||
| Treatment centres/referral to suitable specialists | 3 | |||
| Travelling with pulmonary fibrosis | 2 | |||
| How to recognise and deal with important signs and symptoms | 3 | |||
| Signs and symptoms of pulmonary fibrosis | 2 | |||
| Causes of pulmonary fibrosis | 2 | |||
| Managing comorbidities | 1 | |||
| Success stories of living with pulmonary fibrosis | 1 | |||
| Homecare/drug delivery | 1 | |||
| Advocacy | 1 | |||
| How to avoid infection | 1 | |||
| How to communicate with a frustrated/ angry/depressed patient | 1 | |||
| How doctors follow IPF over time | 1 | |||
| How to access community supports | 1 | |||
Shading indicate where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=18; ¶: n=26.