Abstract
Abstract
Background:
Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems.
Objective:
To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
Design:
This is a qualitative interview study using both focus group interviews and individual interviews.
Setting/Subjects:
In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.
Measurements:
The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis.
Results:
Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy.
Conclusions:
Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member.
Background
Severe chronic obstructive pulmonary disease (COPD) is a common disease, one associated with a significant medical and psychosocial burden, including such symptoms as dyspnea, fatigue, weight loss, depression, and death anxiety.1,2 COPD is also associated with comorbidities, for example, in the form of cardiovascular diseases, metabolic disorder, muscle dysfunction, osteoporosis, and cachexia. 3 Due to such severe symptoms and a poor prognosis in advanced cases, COPD is today seen as a palliative diagnosis.4–6
As the patient's condition slowly deteriorates, their relatives are also strongly affected by the presence of the disease. Informal caregivers can be affected by a heavy caregiver burden and by their own health problems, which include symptoms of fatigue, sleeping problems, fear, anger, and panic. Moreover, increased everyday responsibilities and reduced social activities lead to further distress and restrictions in their everyday lives.7–9
Although many aspects of the caregiver's burden have been described, more detailed knowledge of their experiences is needed, for example, about transitions in their relationships and responsibilities, and the possible changes in communication between patient and family members, as well as communication with other people.
Aim
The aim was to explore what impact severe COPD has on family members' everyday lives with regard to caregiving for a patient in advanced disease, and how the relationship between the patient and the family caregiver is affected.
Method
Both focus group interviews 10 and individual interviews with family caregivers (spouses and grownup children) were used, as combining these two methods may give partly different results and enhance data richness. Focus group interviews may elicit a multiplicity of views through interaction, whereas individual interviews are more suitable when discussing personal, sensitive issues that persons do not want to reveal to others. 11
Data analysis
The interviews were transcribed verbatim and subsequently analyzed with qualitative content analysis, focusing on the similarities and differences between the parts of the texts based on the steps described by Graneheim and Lundman. 12 First, all the interview text was divided into meaning units and then condensed, categorized, and coded. After first sorting the codes, several subcategories emerged: these were sorted and abstracted in three themes and six subthemes. The computer software, Excel, along with sorting functions in Visual Basic, was used in the coding process.
Informants
In total, 35 family members (10 women and 25 men) with personal experience of living with or caring for a person affected by COPD at stages 3–4 were recruited from three outpatient clinics in the southwest region of Sweden.
We aimed at a “maximum variation sampling” in regard to participants' gender, country of birth, language, and age. 13 The informants were all residents of Sweden, but spoke various languages. The semistructured interviews lasted for 20–70 minutes, and each was audio-recorded and transcribed verbatim.
Ethical considerations
Ethical approval was obtained from the Regional Ethics Committee (DNR: 645-16).
Results
In most of the interviews, the informants minimized their problems at the start, but, as the interview proceeded, they gradually revealed details about their personal strains (Q1). A restricted life, a self-assumed responsibility, significant changes in their relationship, strong emotions, and changes in their own health were central to their narratives.
Representative quotations (Q) are presented in Table 1.
Themes, Subthemes, and Quotes (Q 1–14)
COPD, chronic obstructive pulmonary disease.
A restricted everyday life
Social isolation
Being an informal caregiver was perceived by the informants as time-consuming, and the informants felt as though they were confined to their own home, as they needed to be constantly attentive to the needs of their relatives (Q2).
The informants provided personal assistance with everything from medication, monitoring, and personal hygiene to practical help with contacting healthcare and transportation services. Family activities were also difficult to plan for. Much-longed-for social events had to be cancelled if the patient had a sudden deterioration, or if their friends had even the slightest cold, in fear of possible infection (Q3).
Commitment and acceptance of the situation
Despite describing a situation that was imposed upon them, several of the informants still discussed accepting these changes to daily life. The transition had been successive; they had time to adapt. Even in this exposed situation, some still felt a mutual responsibility. In certain aspects, their relationship had even become strengthened, as helping their loved one and being needed were important to them. Acceptance, although not easy, was a viable coping strategy. Those who emphasized acceptance described how they actively tried to focus on attainable goals rather than letting frustration overwhelm the situation (Q4).
A changed relationship
Although trying to accept the situation, the informants mourned what they had lost. The relationship with their ill relatives had changed regarding responsibility, emotions, and communication.
A shift in responsibility
The informants assumed new roles in parallel with the deterioration of their loved ones. This was especially evident for elderly husbands who needed to perform everyday chores, such as cooking and cleaning, tasks that previously were unfamiliar to them. Still, these duties were more easily accepted than the increasing need for assistance with more private things, such as providing support during showers and assisting with personal hygiene. The illness itself and the shift in roles also affected their sexuality, which was described as a grievous loss by some of the respondents (Q5).
A changed form of communication—the taboos
Changes in openness were described within some of the families and communication patterns were altered. Speaking about the disease was taboo, described by the informants as an unwritten rule. Caregivers felt a need to share their situation with friends, but were expected to keep a cheerful façade. For example, when meeting other people, the ill person would pretend that he or she was not ill. This type of episodes made the informant feel that they play-acted for each other and resulted in frustration and suppressed anger (Q6).
Informants' own needs neglected
As the practical and caring needs increased, the informants had to give up much of their own needs, and some felt totally neglected. Their relatives needed more and more attention. The informants provided support, but at the price of being neglected themselves. Another aspect was a situation where a change in personality occurred: during disease progression, their relative became increasingly egoistic. From their previous relationship as a considerate husband or wife, they now needed and even demanded every kind of help, thereby restricting the personal space of the family caregivers (Q7).
A few of the informants were grown-up children. Even if they did not cohabitate with the ill person, they still felt a stress and a presupposed obligation to stand up for their parents. There was an obvious role conflict, and they felt that they neglected their own family (Q8).
Emotional changes and informants' own health problems
Having great responsibility imposed upon them around the clock came at a personal cost. Many of the informants experienced stress and anxiety, as well as sleeping problems (Q9).
Moreover, the informants expressed pronounced feelings of helplessness in certain situations, especially during an acute exacerbation. The most frightening experience was to witness their relative having difficulty breathing and even choking due to bad coughs with a lot of thick mucus. The feeling of not being able to help in any way, except to just be there and call the ambulance, was horrifying (Q10).
Besides having feelings of leading a boring life, helplessness, and anxiety, some of the informants described physical symptoms such as hypertension, stomach ache, and heart palpitations (Q11).
Joy through adaption
Despite the obvious obstacles, the informants strove to achieve periods of stability and normality. When this occurred, they could still enjoy everyday life events and hobbies with children, grandchildren, and friends, although these were slightly modified. Joyful moments were still possible, but only after adaptations had been made (Q12).
The well-being of the informant increased when the ill person had a stable period. Old memories and brief moments, when everything was almost as before, created a sense of well-being (Q13).
Discussion
The findings show that the relatives had gradually become accustomed to living in the shadow of the disease, despite the substantial burden in later stages of the illness trajectory. This kind of adaption is not unique to COPD, but was already shown in the 1960s, when Lazarus introduced the concept of coping mechanisms. 14 During the relatively long trajectory of a COPD, people have time to slowly adjust to the new circumstances.
The informants minimized their problems at the start of the interviews, but when they were offered time for reflection, they described an everyday life characterized by restrictions, and changed roles. This has implications for the healthcare staff: the informal caregivers are not likely to reveal all their true worries in short consultations. 15
The situations of grown-up children were an important finding: they were forced into a conflicting situation with demands from both their parents and their own families. This type of stress has previously been described as one that is common in a “sandwich-generation” and it tends to become chronic, as there are no obvious solutions.16,17
Uncertainty is a well-known stressor, 18 which was obvious when encountering unpredictable situations such as acute breathlessness, severe exacerbations, or a planned event that had to be cancelled. Despite adaptation, the informants still encountered new sources of stress.
Although the informants accepted new roles and chores, there was one exception, namely, performing intimate tasks, such as assisting with showering or with personal hygiene, as their roles as caregivers and spouses were now combined. Few studies have addressed this issue. In addition, some of the informants raised the question of sexuality. This may be a hidden and sensitive issue, which healthcare personnel need to be aware of. 19
Several informants described a transition in communication patterns, in parallel with disease progression. While the caregiver had a need to share their situation with friends, the ill person carried a wish to show a cheerful facade. To be forced to hide frustration and anger is a well-known stressor. 20
Still, many informants also depicted moments of happiness. Several authors have identified universal sources of meaning, and such sources are still available, even in the case of severe illness.21–24 It was not surprising that, for example, children and friends were mentioned in a positive context, as good relations are a vital source of meaning. However, to gain access to such sources of meaning, the family had to adapt to the new situation. When this was the case, moments of joy were possible.
In conclusion, the caregiver burden was considerable in these late stages of COPD, and the findings underline the different challenges of caregiving for a person with a chronic and often unpredictable illness.
Footnotes
Acknowledgments
We would like to thank all informants for participating in the interviews and our nursing students, Alinn Sjöholm and Jenny Backo, for carrying out the interviews. Aileen Ireland is acknowledged for the linguistic revision.
Author Disclosure Statement
No competing financial interests exist.