Summary of supportive care needs: family-related, social/societal and interpersonal/intimacy domains

Needs domain and category Studies nIndividual reporting needRepresentative quotes
Family-related#“What has suffered is my relationships more with my family and my friends, because I'm just busy [being a caregiver to my husband with IPF] all the time” (caregiver of patient with IPF) [13]
“My family checks everything I do, I don't feel free” (patient with IPF using pirfenidone) [8]
“Eventually she is talking about us moving downstairs and staying downstairs once it gets to a certain point – well, I don't want that. I'd rather take 10 min to go upstairs to go to bed than staying downstairs all the time” (patient with IPF) [34]
 Increased physical/practical burden on caregiver9
 Change in caregiver lifestyle/role7
 Loss of role within family5
 Increased reliance on family4
 Living at a different pace to family2
 Loss of privacy due to need of assistance2
 Different expectations between patient and family2
 Unable to travel with family1
 Fear of passing a genetic disease on to family1
 Family takes over decisions about lifestyle1
Social/societal“I am trading from one stigma for another, because, you know, I've heard people say, “Well he's on oxygen because he was a smoker” (patient with IPF) [26]
“I can't go anywhere … I don't [really] have a life, I'm sitting indoors every day” (patient with advanced IPF) [3]
“When people see you coughing they say “Take cough medicine, take this, take that”, they don't understand it … and they would say, “Why you are panting when you are doing nothing literally?” (patient with IPF) [34]
 Stigma/lack of community understanding12
 Social isolation5
 Go out less/fewer social opportunities4
 Difficulty maintaining relationships2
Interpersonal/intimacy+“[W]e're not intimate at the moment [higher pitched voice] … we don't even talk about it, we just sort of blank it out because I just don't have the will or the energy to do [slight laugh] anything …. Having intercourse, you know and you know, making love with each other and that sort of thing, yeah … I just don't have the energy but … we just don't talk about it” (patient with IPF) [3]
 Loss of sexual intimacy4
 Altered body image/sexuality3

Shading indicate where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=14; : n=17; +: n=4.