COPD patients’ experiences, self-reported needs, and needs-driven strategies to cope with self-management

Figures & data

Table 1 The 12 research steps of the Vancouver School of Doing Phenomenology, and how these steps were followed in the present study

Steps in the Vancouver School	How the steps were followed in the study
Step 1. Select dialogue partners (sample)	All eligible patients on a waiting list for PR at a rehabilitation center were offered to participate in the study until data saturation had been accomplished. In total, there were 10 participants.
Step 2. Be silent (before beginning the dialogue)	The first author silently prepared for each interview and considered own preconceived ideas.
Step 3. Participate in the dialogue (data collection)	Using open-ended questions, 1–2 semi-structured interviews were conducted by the first author with each participant, either at the participant’s home, the researcher’s office, or at another location proposed by the participant. The interviews, 15 in all, took 28–58 mins and were recorded on a digital recorder.
Step 4. Have sharpened awareness of words (data analysis)	Each interview was transcribed verbatim. In all, 52,800 words were transcribed. Data collection and data analysis were run concurrently.
Step 5. Begin consideration of essences (coding)	The first author constantly tried to contemplate the essence of what the participants were saying.
Step 6. Deconstruct the text and construct the essential structure of the phenomenon (individual case construction)	The essence of the interviews was highlighted and used to build the blocks of each case construction. This was done by the first author.
Step 7. Verify each case construction with the relevant participant (verification 1)	This was carried out with each participant by the first author after each interview.
Step 8. Construct the essential structure of the phenomenon from all interviews (meta-synthesis of the interviews)	The first author constructed a draft of the essential structure of the phenomenon from all the interviews. The second author verified that the case construction was based on actual data. Following this, the second, third, and fifth authors participated in the data analysis.
Step 9. Compare the essential structure of the phenomenon with the data (verification 2)	To ensure this, all transcripts were again compared with their corresponding recordings and read repeatedly.
Step 10. Identify the overriding theme that describes the phenomenon (construction of the main theme)	The overriding theme describing the essence of the phenomenon was constructed as: fighting a war without weapons in an ever-shrinking world with loss of freedom at most levels, and always being afraid of possible breathlessness.
Step 11. Verify the essential structure of the phenomenon under study with the participant (verification 3)	One participant read and approved the final thematic analysis.
Step 12. Write up the findings (reconstruction)	Each participant was assigned their own number (between 1 and 10). Each participant is quoted directly in the text to increase the trustworthiness of the findings and conclusions.

Figure 1 The Vancouver School of Doing Phenomenology. The Vancouver School involves 12 steps, and in each step, the cycle is repeated.Note: Modified from Halldorsdottir S. The Vancouver School of doing Phenomenology. In: Fridlund BHCE, editor. Qualitative Research Methods in the Service of Health. Lund: Studentlitteratur; 2000: page 56.³⁰

Table 2 Overview of the participants’ characteristics

Participant number	Gender (F=female M=male)	Age (years)	Living status	Pack years	GOLD stage	FEV1% pred.
1	F	70	With another	60	III	36
2	F	67	With another	55	IV	21
3	M	59	With another	55	II	63
4	M	61	Alone	45	I	83
5	M	65	Alone	120	II	70
6	M	61	Alone	100	IV	22
7	M	74	Alone	40	IV	25
8	M	63	Alone	40	IV	23
9	M	70	Alone	20	II	Missing
10	F	66	With another	80	IV	21

Notes: Pack-years: number of packs of smoked cigarettes daily multiplied by the number of years the person has smoked. GOLD stage: I = mild disease, II = moderate, III = severe, and IV = very severe.

Table 3 Needs identified by the participants

Participants’ self-reported needs
1) The need to cope with the reality of COPD, a life-threatening disease
2) The need to cope with dyspnoea and fear of possible breathlessness
3) The need to cope with an ever-shrinking world and loss of freedom
4) The need to cope with smoking as a relapsing addiction
5) The need to cope with anxiety, procrastination and feeling bitter
6) The need to adopt a positive mindset and maintain hope
7) The need to accept help from others
8) The need to cope with reduced ability to work and earn money
9) The need to cope with lack of knowledge about COPD
10) The need to adopt a healthy lifestyle with physical exercise
11) The need to have regular check-ups and access to professional care
12) The need to be known by health professionals.
13) The need for a sense of security regarding health care
14) The need for good support, having fun, and preserving social relations

Figure 2 Participants’ self-management needs when coping with COPD, their needs-driven coping strategies, and other available strategies.

Figure 3 The perpetuating cycle of dyspnea, anxiety, and fear of possible breathlessness that can cause a panic attack.

Table 4 The participants’ needs as COPD patients: a practical checklist as a basis of dialogue between clinicians and patients

COPD patients’ needs	Fulfilled	Almost fulfilled	Neutral	Partly fulfilled	Not fulfilled
1. The need to cope with the reality of COPD	□	□	□	□	□
2. The need to cope with dyspnea and fear of possible breathlessness	□	□	□	□	□
3. The need to cope with an ever-shrinking world and loss of freedom	□	□	□	□	□
4. The need to cope with smoking as a relapsing addiction	□	□	□	□	□
5. The need to cope with anxiety, bitter feelings, and procrastination	□	□	□	□	□
6. The need to adopt a positive mindset and maintain hope	□	□	□	□	□
7. The need to accept help from others	□	□	□	□	□
8. The need to cope with the reduced ability to work and earn money	□	□	□	□	□
9. The need to cope with the lack of knowledge of COPD	□	□	□	□	□
10. The need to adopt a healthy lifestyle with physical exercise	□	□	□	□	□
11. The need to have regular professional check-ups	□	□	□	□	□
12. The need to be known by health professionals	□	□	□	□	□
13. The need for a sense of secure healthcare	□	□	□	□	□
14. The need for good support; have fun and preserve social relations	□	□	□	□	□

Halldorsdottir S. The Vancouver School of doing Phenomenology In: Fridlund BHCE, editor. Qualitative Research Methods in the Service of Health. Lund: Studentlitteratur; 2000:46–81.

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