TABLE 1.
Summary of supportive care needs: physical/cognitive and psychosocial/emotional domains
| Needs domain and category | Studies n | Individual reporting need | Representative quotes | |
| Patient | Caregiver | |||
| Physical/cognitive # | “Coughing! Coughing! People would ask why didn't you go to a different bedroom so you didn't have to hear the cough, but I would feel bad, I couldn't tell him. I was going to work on 2–3 h of sleep” (caregiver of a deceased patient) [20] “When it's really really bad, I'd make a trade with the devil … because I'm so … flat and exhausted and [I] think well I'd rather not go on” (patient with advanced IPF) [3] “The side-effects were making me feel more sick than my life. I couldn't go out, I couldn't catch a tram, for instance, because you never knew when you were going to explode. I felt sick, lost weight and felt nauseous and I still persevered” (patient with IPF using antifibrotic therapy) [16] |
|||
| Cough | 13 | |||
| Dyspnoea | 9 | |||
| Fatigue | 9 | |||
| Management of treatment side-effects | 5 | |||
| Physical limitation | 5 | |||
| Poor sleep | 3 | |||
| Phlegm | 2 | |||
| Incontinence | 1 | |||
| Psychosocial/emotional ¶ | “You know, it's just … really frustrating to tell you the truth, these things are happening to my body … that I can't do anything about it [higher pitched voice]” (patient with IPF) [25] “What am I going to do with the rest of my life without my husband? It's pretty scary. We've been married for 58 years” (caregiver of patient with IPF) [13] “You're not free, can't laugh or cry fully because if you do you won't be able to breathe even with oxygen – that is terrible and upsetting. Also being tied to oxygen makes you feel like stuck you're inside the cage” (patient with IPF) [1] “I'm confused, because I become this caregiver that isn't giving any care, but more of a nag” (caregiver of patient with IPF) [23] “I think the most shocking thing is how quickly, even though maybe people have been told you've got 3 months, 6 months, whatever months. I think when that day actually comes it's probably always a shock. The Tuesday we saw her with a team of doctors and Sunday she was gone” (bereaved caregiver) [32] “Sometimes I feel ashamed about the things I can't do” (patient with IPF) [34] “I do get frustrated when it physically affects me, not being able to do things that I planned to do” (patient with IPF) [34] |
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| Anger, frustration | 11 | |||
| Anxiety | 9 | |||
| Sadness, grief | 9 | |||
| Fear of future | 8 | |||
| Depression | 8 | |||
| Shock | 7 | |||
| Loss of identity/sense of self | 6 | |||
| Fear of being a burden on others | 5 | |||
| Loss of control, powerlessness | 4 | |||
| Feeling overwhelmed, helpless | 5 | |||
| Denial | 4 | |||
| Guilt | 4 | |||
| Panic | 3 | |||
| Loneliness | 3 | |||
| Confusion, resentment | 3 | |||
| Difficulty maintaining hope and optimism | 2 | |||
| Feeling of shame, embarrassment | 2 | |||
| Fixating on the disease | 2 | |||
| Feeling vulnerable | 2 | |||
| Feeling insecure | 1 | |||
| Self-pity | 1 | |||
| Regret | 1 | |||
| Burn out | 1 | |||
Shading indicates where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=16; ¶: n=22.