Summary of supportive care needs: physical/cognitive and psychosocial/emotional domains

Needs domain and category Studies nIndividual reporting needRepresentative quotes
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]
 Management of treatment side-effects5
 Physical limitation5
 Poor sleep3
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]
 Anger, frustration11
 Sadness, grief9
 Fear of future8
 Loss of identity/sense of self6
 Fear of being a burden on others5
 Loss of control, powerlessness4
 Feeling overwhelmed, helpless5
 Confusion, resentment3
 Difficulty maintaining hope and optimism2
 Feeling of shame, embarrassment2
 Fixating on the disease2
 Feeling vulnerable2
 Feeling insecure1
 Burn out1

Shading indicates where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=16; : n=22.