The experience of being a participant in one’s own care at discharge and at home, following a severe acute exacerbation in chronic obstructive pulmonary disease: a longitudinal study

Figures & data

Table 1. Baseline demographics of the participants.

N = 15	Gender	Age	Classification of COPD *	Impact of COPD CAT score (COPD Assessment Test)**	Comorbidity Charlson Index of comorbidity Score***	History of admissions ****	History of readmissions *****	Smoking status	Profession	Cohabitation status
P1	Female	73	2, D	16	1	No	No	Ex	Retired	Married
P2	Female	56	3, D	17	1	No	No	Ex	Unemployed	Single
P3	Female	55	2, D	11	1	No	No	Ex	Retired	Single
P4	Male	67	4, D	25	4	Yes	Yes	Ex	Retired	Married
P5	Female	68	3, D	18	2	No	No	Ex	Retired	Married
P6	Male	77	2, D	15	2	No	No	Ex	Retired	Married
P7	Male	68	-	-	5	No	No	Ex	Retired	Married
P8	Female	72	2, D	15	2	Yes	Yes	Ex	Retired	Single
P9	Male	74	3, D	25	5	Yes	No	Ex	Retired	Married
P10	Female	74	3, D	29	2	Yes	No	Ex	Retired	Widowed
P11	Female	86	2, D	18	1	No	No	Never	Retired	Widowed
P12	Female	73	3, D	19	1	Yes	No	Ex	Retired	Married
P13	Female	65	1, D	17	1	No	No	Ex	Retired	Single
P14	Male	69	3, D	23	1	No	No	Ex	Retired	Married
P15	Female	63	3, D	10	1	Yes	No	Ex	Retired	Married

*Classification of COPD: Scale 1–4, higher scores indicate greater severity of airflow limitation; Group A to D, D indicates the highest symptom burden and risk of exacerbation (Global Initiative for Chronic Obstructive Lung Disease, 2017).

** CAT: Scale 0–40, higher scores indicate worse patient-reported quality (Global Initiative for Chronic Obstructive Lung Disease, 2017).

*** Charlson index of comorbidity: Scale 0–31, higher scores indicate more comorbidity (Charlson, Pompei, Ales, & MacKenzie, 1987).

**** History of admissions for AECOPD during the study period (excluding the admission when the patient was included).

***** History of readmissions for AECOPD during the study period.

Figure 1. Time points and types of contact for participants.

Table 2. Examples of the systematic process in the structural analysis.

Units of meaning (Quotations)	Units of significance	Themes and subthemes
Hospital phase:		Struggling to regain a sense of control
The patient says to the nurse: “I don’t want to go home yet … I’m too tired …I’ll only fall back into my old ways” (FN, P12)	Unprepared and seeking to prolong the stay at hospital	Building up strength and readiness for discharge
“The patient is training on the stairs … he relates that he has
managed to get rehabilitation help, so he can climb the stairs at home … he pumps his fist in his hand” (FN, P6).	Motivated to influence decisions
Patient: “I would like to know if my COPD has got worse.” Doctor: “Yes, that’s the nature of the illness …” The patient later relates that she is happy with the doctor’s explanation (FN, P13)	Informed appropriately to be able to relate to own situation	Seeking clarity and confidence
“The nurse is instructing the patient in using a new inhalation medicine … the patient is silent … the nurse encourages her to ask the evening nurse for help … the patient sighs: “If I can just figure it out””(FN, P1)	Overwhelmed and feeling incompetent
Home phase:		Striving to comply with received advice and encouragement to maintain well-being
Patient: “The doctor said that it was COPD and that I should learn to live with it … I was a bit angry … despondent … now I can’t do this and I can’t do that” (IW P15, 11 months after discharge)	Discouraged and seeking to renegotiate the meaning of living	Struggling to stay motivated and confident
Patient: “I had a few sessions with a healthcare person … we made some goals for my daily life … I need structure … and then I can beat the anxiety” (IW P2, 8 months after discharge)	Empowered to make everyday life work better
Patient: “The doctors say that I should go to the doctor in good time, but I try to put it off … it’s stupid, I can see that myself” (IW P9, 6 months after discharge)	Advised to seek help in good time but reluctant	Asking for help
The patient relates about her anxiety at night: Patient: “When I was hospitalized, they [the health professionals] suggested a psychologist, but nothing is happening!” Nurse: ”Unfortunately, we don’t have that option. You need to go to your own doctor” (FN P5, out-patient clinic, 7 months after discharge)	Frustrated about not getting the help expected

Global Initiative for Chronic Obstructive Lung Disease (GOLD). (2017). Global strategy for the diagnosis, management and prevention of COPD. Retrieved from http://goldcopd.org

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Charlson, M. E., Pompei, P., Ales, K.-L., & MacKenzie, C.-R. (1987). A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation. Journal of Chronic Diseases, 40(5), 373–383. doi:10.1016/0021-9681(87)90171-8

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