Frustrated Caring: Family Members’ Experience of Motivating COPD Patients Towards Self-Management

Figures & data

Table 1 The 12 Research Steps of the Vancouver School of Doing Phenomenology and How Those Steps Were Followed in the Present Study

Steps in the Vancouver School	How These Steps Were Followed in the Current Study
Step 1. Selecting dialogue partners (sample)	Phenomenology is a useful approach when the purpose is to explore experience. This is the second study of the research group where the preceding study focused on exploring COPD patients’ self-management. The current study focuses also on patients’ self-management but as in Iceland, the family is a cornerstone of primary support for chronically ill patients, we explore the concept through the eyes of principal family members. Therefore, inclusion criteria in this study was being a principal family member, suggested by a COPD patient as an important source of his/her self-management support. The sample in this study was collected by nominations from COPD patients on the waiting list for pulmonary rehabilitation (PR) at the main rehabilitation institute in the country. By signing an informed consent to participate in the first study, the participants were asked to suggest a principal family member, that the first author could contact and invite to participate in the current study. All eligible participants were thus family members of participants in the first study and no exclusion criteria were defined if they were nominated by their COPD patient. Four spouses and four adult children agreed to participate. Two spouses were retired but other participants (spouses and adult children) were still employed. For a deeper understanding and clarifying the findings, a secondary sample, two persons, a husband and a wife of patients from the same waiting list for PR, was invited to participate. One was retired and one still working. Two participants were graded lower according to GOLD when they signed into PR than in their application for PR. Although the initial idea was to include only patients in GOLD grade III and IV, these patients were, however, considered by the research team as eligible and good informants and adding valuable information eg regarding their awareness of the health risks of smoking, which is a common knowledge of most people in Iceland.
Step 2. Silence (before entering a dialogue)	The first author, an experienced rehabilitation nursing specialist, MS, silently prepared for each interview, considering pre-conceived ideas and putting them aside as much as possible. Thus, the findings were derived from the data; discussed with the interviewee and verified by him/her in the end of the interview.
Step 3. Participating in a dialogue (data collection)	The interviews were conducted at a timepoint when some of the patients who nominated the participants had completed PR. As the first author is an experienced rehabilitation nursing specialist, a pilot test was not regarded as necessary. Data collection and analysis were carried out simultaneously. Each interview was summed up before end of the interview, to clarify if any doubts were present regarding meanings, and asked for permission to be in contact again if needed. No participant was, however contacted again. Most of the participants chose to receive a home visit from the first author, some accepted an offer to meet the first author at her office, one asked the first author to come to a meeting room at a workplace and one asked for a permission to arrange a meeting at a healthcare facility at a hometown in the countryside. No one attended the interviews other than the participant and the first author. The interviews were audio-recorded using an electronic recorder. The recordings ranged from 25 to 73 minutes and the transcribed interviews ranged from six pages (2560 words) to 15 pages (9131 words), in all 58,898 words of interview research data. Each interview was written exactly as it sounded in the audio file.
Step 4. Sharpened awareness of words (data analysis)	The transcribed interviews were read again and again by the first author with sharpened awareness of the words of the participants.
Step 5. Beginning consideration of essences (coding)	Constantly, first and second author tried to answer the question: What is the essence of what this participant is saying?
Step 6. Deconstruction of the text and constructing the essential structure of the phenomenon (individual case construction)	The essences of the interviews were highlighted by the first author and used to build each individual case construction. The data analysis was done by the first and second author and involved extracting the results from the text (deconstruction), [followed in step 8 by reconstruction to present the overall results].
Step 7. Verifying each individual case construction with the relevant participant (verification 1)	As said in a comment in step 3, each case construction (individual analytic framework) was at the end of each interview, summed up by the first author and verified by the participant.
Step 8. Constructing the essential structure of the phenomenon from all the individual case constructions (meta-synthesis of the individual case constructions)	The essential structure of the phenomenon from all the individual case constructions was constructed by the first, second and third author. This meta-synthesis and construction of the individual case studies was analyzed and approved by fourth and fifth author, and was thus a joint effort of the research group.
Step 9. Comparing the essential structure of the phenomenon with the data (verification 2)	To ensure this, the first and second author compared all transcripts again with the findings.
Step 10. Identifying the overriding theme that describes the phenomenon (construction of the main theme)	Frustrated caring: Principal family members’ experience of motivating COPD patients towards self-management. The overriding theme was constructed by the first, second and third author.
Step 11. Verifying the essential structure with some of the participants (verification 3)	The overall results and conclusions were presented to and verified by two of the participants.
Step 12. Writing up the findings (reconstruction)	Each participant was numbered from 1 to 10 and is quoted directly in the text to increase the trustworthiness of the findings and conclusions.

Table 2 Characteristics of Participants

Participant (Family Member)	Gender	Relation to Patient	Age^a of COPD Patient (years)	Patient’s GOLD Stage^b	Sharing Home w/COPD Patient
1	M	Husband	70–79	III	Yes
2	M	Husband	60–69	IV	Yes
3	F	Wife	50–59	II	Yes
4	F	Wife	60–69	I	Yes
5	M	Husband	80–89	IV	Yes
6	F	Daughter	60–69	IV	No
7	M	Son	70–79	IV	No
8	F	Daughter	60–69	IV	No
9	F	Wife	60–69	IV	Yes
10	F	Daughter	60–69	IV	No

Notes: ^aAge range of patients is shown instead of precise age to protect anonymity. Mean age of the COPD patients was 68 years. ^bGOLD stage: I = mild disease, II = moderate, III = severe, and IV = very severe.³⁵

Figure 1 The repeated cycle of cognitive work in each of the 12 steps in the Vancouver School of Doing Phenomenology.

Notes: Modified with permission from Halldorsdottir (page 56).²⁹

Figure 2 The main frame of the interview guide in the study.

Table 3 The Family Members’ Perspectives on COPD Patients’ Needs, Roles of Family Members as Caregivers, and Their Main Frustrations

What the COPD Patient Needs, According to Family Caregivers	Perceived Roles of Family Members	The Main Frustrations of Family Members Regarding COPD and the COPD Patient
Needs to stop smoking Needs to have a contact person within the healthcare system Needs to have a timely adjustment of medical therapy in relapses Needs to have a timely portable oxygen concentrator (POC), if oxygen dependent Needs follow-up by a coordinator in the healthcare system	Collecting information Encouraging compliance with necessary lifestyle changes Adjusting family’s lifestyle Participating in medical consults Providing surveillance Providing follow-up on the use of medication Providing psychological and emotional support Supporting patient’s choice among available treatments Taking care of household duties Providing direct care	Observing patient’s gradually increasing COPD yet experiencing patient in denial, ignoring doctor’s recommendations and family members avoid the illness topic Demoralizing to observe patient secretively smoking, experiencing COPD as a self-inflicted disease, observing patient’s continued smoking relapses Experiencing patient being inactive and non-participant at home and in family affairs due to lack of stamina and increased breathlessness resulting in shrinking world which affects the family as well Patient is perceived as killing time, thinking only of him- or herself, instead of doing something constructive, with or without the family Experiencing financial worries because of decreased income Observing gradual health decline as a slow death

Table 4 Principal Family Members’ Perspectives on Patient–Family–HPs as a Team

The COPD Patient’s Main Problems According to Principal Family Members	Breathlessness. Lack of energy. A little lost and needs guidance. Does not know what to ask and who may have the answer. Avoids confronting COPD. Is smoking. Lacks stamina. Lacks proper equipment to self-manage. Feels sad. Feels helpless and locked-up.
The Principal Family Member’s Needs	Knowing how to help COPD patient. Being informed. A teamwork orientation where patient–principal family member’s dyad (pfd) is part of the team. Facilitate patient’s smoking abstinence. Being followed up. Being allowed to ask difficult questions. Receiving guidance how to provide care and preserve own health. Deal with own anxiety, fear and frustration. Help to provide patient with social support and facilitate patient’s social participation.
The Health Professional’s Tasks	Regard the pfd as a recipient of care. Facilitate pfd’s collaboration. Explore pfd’s knowledge and need for education. Facilitate pfd’s posing questions. Explore pfd’s need for support, education and practical help. Observe pfd’s need for social support. Explore patient’s need for equipment. Ensure timely interventions. Facilitate follow-up on patient’s smoking abstinence.
Important Concerns of Principal Family Members COPD puts serious restraints on patients and principal family members	Principal family members need to be prepared for patient’s acute exacerbations have a holistic overview of patient’s health avoid hesitating to ask for help dare to raise the subject of illness accept follow-up have education on COPD not being afraid to know “too much”

Figure 3 Principal family members’ perspective of the increasing caring burden caused by the progression of COPD, the need for education and a patient–family member–HPs team approach.

VogelmeierCF, CrinerGJ, MartinezFJ, et al. Global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease 2017 report. GOLD executive summary. Am J Respir Crit Care Med. 2017;195(5):557–582. doi:10.1164/rccm.201701-0150WS.28128970

 PubMed Web of Science ®Google Scholar

HalldorsdottirS. The Vancouver school of doing phenomenology In: FridlundB, HaldinghC, editors. Qualitative Research Methods in the Service of Health. Lund: Studentlitteratur; 2000:46–81.

 Google Scholar