Being met as a person and not as a diagnosis – Meanings of healthcare encounters for women with chronic obstructive pulmonary disease stage III or IV

Abstract

Our study seeks to elucidate meanings of healthcare encounters for women with chronic obstructive pulmonary disease stage III or IV. We conducted 12 narrative interviews which were analyzed using phenomenological hermeneutic interpretation. Our analysis revealed one theme; being met as a person and not as a diagnosis with three subthemes: getting sufficient time and feeling involved in care; fulfillment of personal needs; and experiencing disrespect and injustice. We found that meanings of healthcare encounters center on the expectation of being seen as a person. Feeling disrespected and injust leaves women unsupported and could pose serious health risks.

Background

Living with a long-term illness such as chronic obstructive pulmonary disease (COPD) involves many repeat encounters with healthcare professionals. In high-income countries, COPD is associated with stigma which tends to prevent women from benefiting from high-quality healthcare and enjoying the best possible quality of life (O’Neill, 2002; Woo et al., 2021). In this study, we sought to elucidate the meanings of healthcare encounters for women with COPD stage III or IV by inviting women diagnosed with COPD stage III or IV from central Sweden to narrate their lived experiences. The authors intended to contribute to knowledge valid for women with COPD stage III or IV as well as other long-term illnesses internationally.

Chronic obstructive pulmonary disease is a systemic inflammatory disease with a worldwide prevalence of 10%, high co-morbidity and mortality, and is stated as the third leading cause of death globally (Adeloye et al., 2022; Cebron Lipovec et al., 2016; GOLD, 2023; Peng et al., 2020; Wang, 2021; Xuan et al., 2018). The Global Initiative for Obstructive Lung Disease (2023) classifies COPD severity in four stages: stage I is mild, stage II is moderate, stage III is severe, and stage IV represents very severe COPD. Researchers reveal that its prevalence among women has equaled that of men in many high-income countries in the last 15 years (Backman et al., 2020) and is the leading cause of death in women in the USA (Ntritsos et al., 2018).

Everyday life is severely restricted when living with COPD stage III or IV, affecting both people with the illness (Ek et al., 2011) and close relatives (Chu et al., 2019). Researchers reveal that living with COPD life entails an unpredictable experience of embodiment, dominated by ever-present breathlessness that profoundly impacts well-being. It is a progressive illness with periods of deterioration and often results in frequent and or long-lasting healthcare encounters, such as outpatient and inpatient care, which can be particularly challenging for people with COPD (Ali et al., 2018; Ek et al., 2011; Ekdahl et al., 2021; GOLD, 2023; Han et al., 2016).

Positive, high-quality encounters between health professionals and those in their care are characterized by mutuality and reciprocity between two equal persons (Holopainen et al., 2019) and are dependent on good communication skills to meet people’s needs (Attree, 2001; Fotokian et al., 2017). Researchers show that it is crucial for people with COPD to have a positive relationship with healthcare professionals in primary settings, which facilitates their involvement and empowerment in the management of their care (Lundell et al., 2020; Titlestad et al., 2022). Some researchers have shown that women living with different long-term illnesses often experience not being taken seriously or believed (Grundström et al., 2018; Juuso et al., 2014; Olsson et al., 2008). In encounters with healthcare professionals, women are more often affected by and suffer from poor care quality, such as deficiencies in communication, interaction, and unequal access to provision (Skär & Söderberg, 2018; Söderberg et al., 2012). Other researchers have demonstrated that women with COPD experience stigma and a lack of information during their care (O’Neill, 2002; Steindal et al., 2017).

In short, to the best of our knowledge, there is a lack of research into the healthcare experiences of women with COPD stage III or IV. Thus, the authors’ aim in this study was to elucidate meanings of healthcare encounters for women with COPD stage III or IV. This understanding is a prerequisite for meeting their needs and resources.

Materials and methods

Context

The research participants in this study, came from both rural and urban areas in central Sweden.

Design

The authors used a phenomenological hermeneutic method was used to elucidate meanings of healthcare encounters for women with COPD stage III or IV, based on the investigation of nursing research conducted by Lindseth and Norberg (2004). The method used is inspired by the theory of interpretation developed by the French philosopher Paul Ricoeur (1976).

Participants and procedure

We recruited 12 women with a diagnosis of COPD stage III or IV as research participants. Additional inclusion criteria were age >18 years and speaking Swedish. The women were recruited with assistance from a coordinator at a hospital in central Sweden. The coordinator distributed invitation letters with information about the study, along with the inclusion criteria. Those women who volunteered to participate were contacted by the first author who made an appointment for an interview. The women ranged in age from 52 to 86 years (Mdn = 71) and had been diagnosed with COPD when aged between 3 and 27 years (Mdn = 15). Nine participants were retired; one worked part-time; and one was unemployed. Eight of the participants were single, four were married or lived with a partner and all lived at home.

Interviews

The authors carried out individual interviews with the research participants using a narrative approach (Mishler, 1986). The interviews started with an opening question: “Tell me about your experiences of healthcare encounters”. Follow-up prompts included: “What do you mean?”, “How did this make you feel?” and “Can you tell me more?” The interviews lasted between 15 and 110 min (Mdn = 63), were digitally recorded, and then transcribed verbatim. The interviews were conducted by the first author from March to October 2022 either by telephone or in person, according to participant preference.

The method of phenomenological hermeneutic interpretation

We used a method of phenomenological hermeneutic interpretation for analyzing the interview transcripts, consisting of three phases. The first phase involved generating a naïve understanding of the text conducted through several repeat readings. The second phase consisted of a structural analysis in which the texts are divided into meaning units. These meaning units were then condensed and subsumed into a theme and subthemes. The third phase builds a comprehensive understanding through the authors’ joint reflections based on the naïve understanding, the results of the structural analysis, the authors’ preunderstanding, and literature (Lindseth & Norberg, 2022).

Ethical considerations

The Regional Ethical Review Board in Sweden (no: 2020-00085/2022-00369-02) has approved this study. This study was conducted by the authors in accordance with the Declaration of Helsinki for medical research involving humans (World Medical Association, 2018). All participants were given written and verbal information about this study. The first author conducted the interviews after obtaining informed consent from participants, who were guaranteed confidentiality and an anonymous presentation of the findings. Participation was voluntary and could be withdrawn without explanation at any time.

Results

Naïve understanding

Women with COPD stage III or IV expected help and support with improving their well-being and managing their illness. It was important being seen as a person rather than a diagnosis when meeting healthcare personnel. They felt strengthened and supported in managing their illness when healthcare professionals engaged with them in a conversational and dialogic manner. When they were listened to and believed by healthcare personnel, they experienced trust and safety. Healthcare encounters based on a continuous relationship with treatment follow-up increased their sense of involvement and confidence. They experienced being shamed and made to feel guilty because of their illness. Being questioned or met with nonchalance could generate a sense of offense and insecurity in meetings with healthcare professionals. Feelings of anger and sadness were provoked in participants if they sensed that they were not being believed and disappointment arose when participants did not feel supported or included in their care.

Structural analysis

The structural analysis resulted in one theme with three subthemes. The following text presents the structural analysis with quotations from the interview transcripts.

Being met as a person and not as a diagnosis

The theme of being met as a person and not as a diagnosis includes the following subthemes: getting sufficient time and feeling involved in care; fulfillment of personal needs; and experiencing disrespect and injustice.

I’m the COPD diagnosis coming walking in the corridor…and I have thought about saying that I am COPD! They don’t see me…they see only the illness. (Participant 10)

Getting sufficient time and feeling involved in care

Women with COPD expressed that being given enough time for healthcare encounters was important. When meetings with healthcare personnel were allocated sufficient time, they felt better able to describe their needs. They emphasized the significance of dialogue in the healthcare encounter, a sense of being listened to, and engaging with professionals who were calm, reflective, and methodical but also gentle. This was especially important for the women when their illness had become worse. Participants reported that the use of humor from healthcare professionals helped them relax during the healthcare encounter, despite their severe illness. They expressed that this meant feeling safe, acknowledged as vulnerable, and seen as a person in the healthcare encounter. When healthcare professionals showed understanding by actively listening to the women, they felt taken seriously and involved in decision-making.

Feeling like this healthcare meeting has yielded what I want…I’ve been in a dialogue, got time and relevant answers, it’s very important for my well-being. (Participant 1)

Fulfillment of personal needs

Women with COPD expected to receive clear, customized information and explanations about COPD and their prognosis, seeing it as key in managing their illness. Prepared prescriptions of antibiotics and corticosteroids at home decreased the need for contacting healthcare and increased participants’ sense of independence. Continuity of care was associated with a sense that personal needs were being fulfilled and this made participants feel relaxed. Dealing with a limited number of healthcare contacts was important due to their severe illness having very limited energy and breathlessness. Participants reported that their sense of well-being was enhanced when healthcare personnel were familiar with their medical and personal history and were able to witness changes from one visit to the next.

I expect to get answers and personal help from the healthcare system, and then I feel safe. (Participant 11)

Experiencing disrespect and injustice

Women with COPD felt ignored by healthcare professionals particularly when their breathing symptoms were neglected. They expressed feelings of anger, sadness, frustration, being disrespected or not heard, all of which negatively impacted their well-being. Not being seen as a whole person meant feeling ignored, especially when healthcare personnel refused to prescribe antibiotics (on the basis that over-prescription is related to the development of resistance).

The healthcare professionals just talked about resistance and blah, blah, blah… I don’t give a damn about that resistance…I want to be able to breathe… and the only thing that helps is antibiotics and steroids, together…the next day I contacted the hospital clinic, and they helped me immediately. (Participant 4)

Participants felt stupid for having smoked when meeting healthcare personnel, whom they expressed as reluctant to share information on these occasions or prone to using harsh language regarding smoking cessation. In this situation, participants felt disappointed and de-motivated from stopping smoking.

It felt like I was labeled because … I was stupid because I have smoked so, of course, I have COPD…and they didn’t share explanations. (Participant 3)

Women with COPD stage III or IV, felt that their care differed from people with other conditions. They felt that they were not taken seriously in need of help with regard to problems that endangered their health, such as sepsis. Consequently, they were afraid of not receiving help or proper support, and encountering uninterested or disrespectful healthcare professionals made them further avoid seeking care. They expressed being met with incompetence in situations where healthcare professionals wielded expertise over and against their preferential rights as persons in need of help. For example, when women were being ignored regarding their care or simply not prioritized. This made them feel disappointed, unsafe, furious, and offended. They also experienced a sense of injustice depending on their residence. Women felt restricted in terms of the care choices available to them and were particularly disappointed in the care delivered in rural areas.

Comprehensive understanding and reflections

In this study, the research participants are foremost older women living with the long-term illness COPD. Older women experience increased comorbidities, increased frailty as the consequence of increased longevity. There is a complex and long-term interplay between long-term illness and health across a woman’s life span (Touhy, 2019). Women are disproportionately affected by long-term illnesses as women face health challenges due to limited education, social status, gender discrimination, and domestic violence, hindering life goals and healthcare access (Adeloye et al., 2022; Aryal et al., 2014; Axelsson-Fisk, 2021; WHO, 2023). COPD is a common chronic illness and cause disability, increasingly recognized as a major health concern for women, with high prevalence and mortality, and its prevalence increases with age (Ntritsos et al., 2018).

In this study, we suggest that meanings of healthcare encounters for women with COPD stage III or IV are being met feeling confirmed or disconfirmed, i.e., the theme being met as a person and not as a diagnosis. The findings in our study are interpreted in light of the work by Toombs (1993), Charmaz (1983,1997), Buber (1937/2000), and prior research. According to Buber (1937/2000) confirmation entails being seen as a person in a reciprocal ‘I–Thou’ relationship with another person. Lack of confirmation can lead to a loss of confidence and a lack of trust, described as an ‘I-It’ relationship. Toombs (1993) states that understanding the meaning of illness is a prerequisite for improving the quality of care i.e., healthcare encounters. Charmaz (1983) stated that living with serious long-term illness alters existence and diminish notions of self that are often taken for granted.

Women with COPD expressed being met as a person in healthcare encounters when they were given sufficient time to express themselves. Being listened to as experts in their health condition provided an opening for dialogue. This could be understood as what Buber (1937/2000) describes as being confirmed in an I-Thou relationship, where an encounter contains two people who are actively and authentically engaged. Confirmation is connected to the preservation of human dignity, which is often asserted as a core value in healthcare and can function as an important resource for people’s health and well-being (Sæteren & Nåden, 2021). When the research participants felt met as a person and taken seriously, they also felt more involved in decision-making about their care. Toombs (1993) describes how understanding of the illness experience is vital for reducing suffering, minimizing symptoms, and thereby enabling well-being. Charmaz (1983) argues that people living with severe long-term illness already shelter feelings of being a burden and an alteration to their whole life situation. According to Nåden and Saeteren (2006), confirmation requires the ability to welcome and be sensitive to the needs of others. If met positively in this way, people with COPD experience a sense of increased participation in healthcare encounters (Madawala et al., 2022). In this study, the use of humor was a feature that women with COPD expressed as significant in making them feel more at ease in healthcare encounters and which can be seen as an expression of that women felt confirmed, as part of the process of confirmation (cf., Sæteren & Nåden, 2021). McCreaddie and Wiggins (2008) stated that humor and laughter positively and note their associations with well-being. Customized information was also mentioned by the research participants as a means to give them the autonomy to manage their illness through increased knowledge. Moreover, Tuohy and Cooney (2019) state that important knowledge for healthcare personnel to enhance autonomy is by understanding, show respect, and support older women’s right to make their own choices. Continuity of care was stated by the research participants as a significant factor in increasing their feelings of safety and ability to actively participate in the care process. This could be understood as a core dimension of what Toombs (1993, p. 89) describes as the healing relationship, in which healthcare professionals’s appreciation of patients’ lived experience—which confirms the patient as a person—is central. According to Buber (1937/2000), a relationship is built on mutual understanding by virtue of shared existence. Medves et al. (2022) state that high-quality care is connected to informational, relational, and management continuity and is a benchmark for seamless care for people with COPD. This is important for feeling confirmed in healthcare encounters for women with COPD stage III or IV.

Women with COPD described feeling stupid for having smoked and disrespected by healthcare personnel in conversations about smoking cessation, which seemed to entail feeling disconfirmed. Lazare (1987) states that diseases may be stigmatized if they are caused by seemingly “stupid” actions, such as smoking. Due to the link between smoking and COPD, those people living with the disease with a history of smoking are more likely to be devalued and viewed as responsible for their condition. Thereby, they are less likely to get access to and obtain care for their symptoms which causes feelings of shame and guilt, negatively affecting their health and well-being (Woo et al., 2021). However, Charmaz (1997) means that chronically ill people who move and transcend stigmatizing negative labels, define themselves as much more than just an illness.

Not being listened to or ignored in healthcare encounters made the research participants feel unsafe. Being disconfirmed means not being seen or taken seriously, which can impair a person’s dignity (Nåden & Eriksson, 2000). According to Buber (1937/2000), not being listened to can be experienced as an expression of disconfirmation. Women with COPD voiced feelings of insecurity with healthcare professionals due to the lack of help in life-threatening situations. They experienced incompetence in healthcare personnel related to their stigmatic view of the diagnosis of COPD. According to Buber (1937/2000), an “I–It” relationship is one in which the other person is experienced as an object, which can result in exploitation, lead to forms of prejudice, and thereby to disconfirmation. Our findings align with those of Lundell et al. (2020), who reported that people with COPD expressed being deprioritized, not taken seriously, and had experiences of fear and stigma which disempowered and inhibited their participation in healthcare encounters. Further, women with COPD are more affected by their disease than men, and this can lead to both a higher use of healthcare services and a struggle to obtain enough time with healthcare personnel (Jenkins et al., 2017).

Finally, women with COPD expressed feelings of injustice with regard to healthcare delivery and a restriction of care choices relating to their place of residence, which seemed to mean feeling disconfirmed and unsupported. This finding from our study, is supported by Iyer et al. (2021), who claim that people with COPD living in rural locations have a worse prognosis.

Conclusion

In conclusion, the authors state that this study highlights the importance of healthcare encounters characterized by a confirmatory attitude on behalf of healthcare professionals, in which the experience of being met as a person, rather than a diagnosis, is central. When women living with COPD stage III or IV were listened to, received personalized information, and experienced a dialogue with healthcare professionals, they felt confirmed as persons. On the other hand, when they were not taken seriously or felt ignored, they experienced not being seen as persons and thereby felt disconfirmed. Consequently, we conclude that for women living with COPD stage III or IV, healthcare encounters that are experienced as unequal or unjust could pose serious health risks through the exacerbation of feelings of insecurity and lack of support.

Methodological considerations

The authors’ aim in this study was to elucidate meanings of healthcare encounters for women with COPD stage III or IV using narrative interviews, interpreted through a phenomenological hermeneutic method that focuses on life-world phenomena (Lindseth & Norberg, 2022). The sample was purposive, and the participants possessed experiences of the phenomenon under study. Through the use of an interview process based on open questions, participants provided detailed and rich narratives of their lived experience of healthcare encounters and the meanings they attributed to them. One of the interviews lasted only 15 min, although it contained information that confirmed the phenomenon under investigation. Two of the women choose a face-to-face interview. According to Novick (2008), both interviews conducted face-to- to face and by telephone are valid and capable of providing high-quality data, but researchers should be aware of the absence of visual cues and their impact on data quality in telephone interviews. During the entire research process, the investigating team undertook continuous discussion and study of the relevant literature to highlight our assumptions, both as nurses and researchers, and to check our understanding and interpretation of the interview transcripts. According to Ricoeur (1976), while there is more than one way to interpret a text, a convincing interpretation not only must yield a probable explanation but should also appear more likely than any other interpretation. The presented interpretation in this study is the one we found to be most probable. The authors are aware of the limitations of selecting participants from a single geographical location and a sample from single-sex; thus, the methods of this study could be replicated in other cultural situations if they are appropriately recontextualized (cf., Lindseth & Norberg, 2004).

Acknowledgments

The authors would like to thank all the participants and express our gratitude for their contribution to this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).