TABLE 2.
Summary of supportive care needs: family-related, social/societal and interpersonal/intimacy domains
| Needs domain and category | Studies n | Individual reporting need | Representative quotes | |
| Patient | Caregiver | |||
| 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] |
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| Increased physical/practical burden on caregiver | 9 | |||
| Change in caregiver lifestyle/role | 7 | |||
| Loss of role within family | 5 | |||
| Increased reliance on family | 4 | |||
| Living at a different pace to family | 2 | |||
| Loss of privacy due to need of assistance | 2 | |||
| Different expectations between patient and family | 2 | |||
| Unable to travel with family | 1 | |||
| Fear of passing a genetic disease on to family | 1 | |||
| Family takes over decisions about lifestyle | 1 | |||
| 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] |
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| Stigma/lack of community understanding | 12 | |||
| Social isolation | 5 | |||
| Go out less/fewer social opportunities | 4 | |||
| Difficulty maintaining relationships | 2 | |||
| 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 intimacy | 4 | |||
| Altered body image/sexuality | 3 | |||
Shading indicate where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=14; ¶: n=17; +: n=4.