Figures
- FIGURE 1
PRISMA flow diagram.
Tables
- 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]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.
- 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]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]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.
- TABLE 3
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.
- TABLE 4
Summary of supportive care needs; health system/communication and access to care domains
Needs domain and category Studies n Individual reporting need Representative quotes Patient Caregiver Health system/patient–clinician communication# “I was angry and upset; it took over 2 years to get a diagnosis and I felt none of the doctors cared” (patient with IPF) [1]
“I came in and saw the nurse and she knew more and understood more about my complaint than anyone I'd seen prior…. It gives you confidence” (patient with IPF) [28]
“I think they try to liaise between each other but it so often falls apart … there is really a short coming amongst getting information from one aspect of the medical profession to the other” (caregiver of patient with advanced IPF) [25]
“Their honesty in their conversation was huge as well. Being able to look my mom in the eye and tell her that she's dying and that she will be dead within the year. And then, taking the time to sit there and hold her hand and wait until she was ready to talk, and answer her questions, and let her know what that death was going to look like [pause] I think is also really big” (bereaved caregiver) [32]Benefits of specialist centres 7 More timely and accurate diagnosis 7 Honesty about what the future holds 6 Benefits of specialist pulmonary fibrosis nurses 5 Healthcare professionals to be better informed 5 Sensitivity in delivering diagnosis and prognosis –allowing enough time 4 Ongoing relationship with healthcare professionals 3 Coordination of care between healthcare professionals/shared care with local healthcare professionals 2/1 Encourage self-management 2 Timing of end-of-life conversations 2 Role for caregivers in consultation 1 Access to information at “touchpoints” between consultations 1 Understanding goals of therapy 1 Feedback from clinical trials 1 Adherence to palliative care guidance by healthcare professionals 1 Access to care¶ “… somebody that I could ask questions of; somebody who has been down that path, that, um, you know, that they would, would be available to, and willing, to talk about how do you do this or how do you do that” (patient with IPF using oxygen for 9–12 months) [26]
“The doctors helped me, but I have never received any psychological support, I really need it” (patient with IPF using pirfenidone) [8]
“Being able to speak to someone over the phone about my problems has been very reassuring, rather than having to wait until my next clinic visit” (patient with IPF using pirfenidone) [7]
“I can't get a lung transplant because I'm too old. I've just accepted it” (patient with IPF using antifibrotic therapy) [16]
“They also said there were treatments that were not available in Spain yet. I even asked her [the doctor] if we could get it, and she told us it was impossible… Those 2 years we were missing [out on treatment]… We could do nothing about it, there were parameters [to qualify for treatment]” (patient with IPF) [31]Support groups/peer support 12 Emotional/psychological support 8 Specialist centres 8 Support/care for family 6 Pharmacological treatment 6 More effective treatments 5 Specialist nurse 5 Lung transplantation 4 Palliative care, including death at home 4 Pulmonary rehabilitation/maintenance pulmonary rehabilitation programmes in community (led by pulmonary fibrosis specialist) 3/1 Multidisciplinary teams 4 Pulmonology specialists 4 Home modification/adaptation 3 Supplemental oxygen 3 End-of-life counselling 3 Specialist visits 2 Diagnostic tests 2 Advocacy group 1 Clinical trial 1 Shading indicates where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=22; ¶: n=27.
Supplementary Material
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ERR-0125-2019_Supplementary_tables ERR-0125-2019_Supplementary_tables
Vol 29 Issue 156
Table of Contents
The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review
