key: cord-0868139-es1rbz0p
authors: Van Wilder, Lisa; Pype, Peter; Mertens, Fien; Rammant, Elke; Clays, Els; Devleesschauwer, Brecht; Boeckxstaens, Pauline; De Smedt, Delphine
title: Living with a chronic disease: insights from patients with a low socioeconomic status
date: 2021-11-18
journal: BMC Fam Pract
DOI: 10.1186/s12875-021-01578-7
sha: d192129c6c81c0678f13bb9569cee6bb529b517a
doc_id: 868139
cord_uid: es1rbz0p

BACKGROUND: Little is known about how patients with low socioeconomic status (SES) experience their chronic disease, and how it impacts health-related quality of life (HRQoL). Compared to their more affluent counterparts, worse outcomes have been reported. A better understanding of the domains of HRQoL that are relevant to these specific populations is therefore needed. We explored the experiences of living with a chronic disease in low SES persons. METHODS: A qualitative interview study was performed in Flanders, Belgium. Semi-structured interviews were conducted in chronically ill patients, selected through purposive sampling. Interviews were audio-recorded and transcribed verbatim. Analysis followed an inductive and iterative approach. RESULTS: Fifteen patients were interviewed. Six major themes were identified: a heavy bag to carry, loss of autonomous life, inner and outer loneliness, emotional imbalance, unmet need for support, and coping strategies. Patients experienced their illness as an additional problem on top of all other problems (i.e. financial/social problems, traumatic life events). In general, the disease burden and non-disease burden were mutually reinforcing, resulting in greater dependency, greater risk of social isolation, greater psychological distress, and greater risk of impaired HRQoL. CONCLUSIONS: This study is the first to provide detailed insight into the experiences of living with a chronic disease in low SES persons. A conceptual model is proposed that can be used in daily clinical practice to raise awareness among clinicians and health care providers that the patient’s needs go beyond the disease itself. Future research is needed to validate and test the model. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12875-021-01578-7.

Living with a chronic disease is challenging, as it interferes with physical, mental, and social functions and thus greatly affects a person's quality of life. Indeed, chronically ill patients are facing major struggles such as higher expenditures, social isolation and loneliness, disabilities, fatigue, pain/discomfort, feelings of distress, anger, hopelessness, frustration, anxiety, and depression [1] [2] [3] [4] [5] . In addition to morbidity and mortality data, investigating the patient's perspective provides a complete overview of the impact of chronic diseases [6] . As a result, the interest into health-related quality of life (HRQoL) in chronic diseases is growing due to a lack of adequate cure and hence the shift from cure to care [7] . HRQoL captures individuals' self-perceived impact of a medical condition, its symptoms and treatment referring to physical, mental, and social well-being, compared to what they believe to be ideal [7, 8] .

While numerous quantitative studies have assessed the impact of chronic diseases on HRQoL in terms of 'scores'

and 'values' [9] , a thorough qualitative understanding of how patients experience and cope with their illness is limited and often reflected in vague themes, e.g. 'emotions of the patient' [10] [11] [12] [13] . Especially, little is known about the experiences of individuals with low socioeconomic status (SES). This particular risk group has been reporting worse outcomes than their more affluent counterparts in terms of morbidity [14] , mortality [15, 16] , and HRQoL [11] . In addition, coping (defined as cognitive and behavioral efforts to deal with stressful events [17] ) resources have also been found to be unequally distributed [18] . Hence, in-depth explorations incorporating individuals' experiences and viewpoints are needed to better understand HRQoL domains that are relevant to these specific populations.

The aim of this study is to provide a detailed understanding of how individuals with low SES experience their illness and how the illness affects their lives. Faceto-face interviews are used to gain a holistic view on the disease burden in this target group. The results may help us to understand what it is like to live with a chronic disease and its impact on daily life among vulnerable patients, in order to optimize person-centred care and overall HRQoL.

A qualitative study based on face-to-face semi-structured interviews was performed, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Additional file 1) [19] .

The study participants were adults (≥ 18 years) who were clinically diagnosed (≥ 6 months) with at least one chronic disease. Educational level, employment status, income and/or financial hardship were used as proxies for low SES [20] . In general, patients who were entitled to supplemented refunds because their income was less than the ceiling amount were considered low SES. Study participants were not eligible if they had major cognitive impairment, insufficient understanding of Dutch, and were unable to give informed consent.

Purposive sampling was used to obtain a wide variety in patients' characteristics and hence to ensure a broad range of experiences and thoughts. This technique is widely used in qualitative research in order to identify information-rich cases [21] . Patient recruitment was organized through five general practitioners (GPs) with a practice within five community health centers in Ghent, Belgium (convenience sample [22] ), which mainly host patients with lower SES. A community health center is a multidisciplinary practice that offers primary care and aims to reduce the social gradient in health care by removing as many barriers as possible, financially, but also culturally and physically. Each center receives a fixed capita payment for each registered patient, resulting in no co-payment for patients [23] . GPs identified eligible patients during consultation and transferred their contact details to the researcher, with patients' consent. Recruitment continued until data saturation (i.e. when no new information or additional perspectives are observed in the data when adding more participants [24] ) was achieved, which was checked after each interview.

Data were collected through face-to-face semi-structured interviews. After review of the literature, an interview guide (Table 1) with open and semi-open questions was developed in advance and its content was evaluated by highly experienced qualitative researchers. The interviews lasted between 58 and 100 min and were conducted by the principal researcher (LVW) who received training in interview techniques. The interviews took place at the participant's preferred location, i.e. at the community health center, at the patient's home, or online (due to COVID-19 pandemic). The interviews were audiorecorded and transcribed verbatim. All interviews were conducted in Dutch and took place between July 2020 and March 2021.

Data were analyzed using the software package NVivo version 12 [25] . A constant comparative method was used within and between interviews with the emphasis on identifying, analyzing, and interpreting patterns by inductively coding the data [26] . The transcripts were open-coded by one researcher (LVW). After analyzing each interview, all codes were compared in order to construct categories and subcategories. The analysis process followed an inductive and iterative approach. The results were higher level themes that form the basis for making statements about patients' experiences with chronic disease. At regular time intervals, the principal researcher (LVW) and four experts with different backgrounds (DDS, PP, FM, ER) engaged in discussion on the codes, concepts, relationships between concepts, and preliminary results to ensure investigator triangulation (i.e. the participation of two or more researchers in the same study to provide multiple observations and conclusions [27] ).

Out of 15 participants, 8 were male. The mean age was 57.7 years (range 38-83 years). Table 2 summarizes patients' characteristics. The analysis revealed six major themes: a heavy bag to carry, loss of autonomous life, inner and outer loneliness, emotional imbalance, unmet need for support, and coping strategies ( 

The illness was perceived as an additional burden and was experienced differently among patients, e.g. challenging, not easy, burdensome, terrible, hellish, wretched, and disgusting.

"We see it this way: the backpack is your past that you permanently carry with you and from which you never completely get rid of it. The disease is an extra weight in the bag. " (P15, female, 54 years)

Patients were constantly reminded of their disease, which they experienced as very confronting, however for some patients the disease became a habit. Patients said it was painful to accept not being able to do things the way they used to, or worse, that they simply cannot do certain things. Some were tortured by unsolvable questions and sometimes had feelings of injustice. 

Symptoms (e.g. fatigue, pain, breathlessness, muscle spasms, vertigo) being unpredictable and uncontrollable determined patients' lives, which gave them feelings of dependency and uncertainty. Activities that felt perfectly fine 1 day can be unmanageable another, forcing patients to live from day-to-day. For some patients, the illness affected the feasibility of future plans and wishes such as family planning, which further provoke the feeling of being controlled by the disease. 

Patients said the hardest part of their life is the loss of autonomy and freedom. In general, they already were dependent on others in their lives (e.g. some were supervised by a judicial administrator to manage their depts), resulting in feelings of hopelessness, powerlessness, and Patients were concerned about how their situation would evolve, knowing that the disease is progressing, that they are getting older, and that they will need even more help. Their limited financial and social resources reinforced these future-oriented anxieties. Other patients feared losing autonomy, losing others, being rejected, misunderstanding from others, and death. 

In case patients had a partner/family/children/colleagues, they were thankful for their help and support. Patients appreciated that they could always count on their GP to discuss confidential issues. Some patients visited an organization for people with psychological vulnerability who have difficulty connecting with society and were grateful for it as it is their only source of social contact and because it gave them a sense of belonging and companionship. Talking to someone, even small talk, is experienced as a relief. Patients also expressed being satisfied and thankful for the (sometimes) little they can and have. Few patients were satisfied with almost everything in their life. One patient felt the illness expanded his world and made him grow as a person. 

Patients believed that they first had to accept the disease in order to cope and to continue their lives. One patient said she will never accept her depression -she keeps fighting to conquer it. In difficult moments, it was important to pull themselves together as quickly as possible and to stay strong, especially for the (few) people around them. Some patients were stubborn -they did everything they could to not be inferior to others. Asking for help was seen as a final solution. In case patients got desperate (e.g. when in pain), they searched for opportunities (e.g. pain clinic) in order to give themselves hope and perspective.

Patients had to learn to live with the disease requiring major adjustments. A subset developed resilience and successfully integrated it into their lives. Patients had to balance every activity against their physical/mental capacities by listening to their body. One patient considered this as an advantage -the illness forced her to live more slowly and consciously. Patients needed to schedule sufficient days of rest, for both their physical and mental health. However, patients found these activities worthwhile, even if they knew they would suffer from it afterwards. Patients emphasized the importance of putting things in perspective: comparing themselves to others who are worse off (hence realizing they can still do many things), using humour, pulling themselves up to the small things in life.

"Sometimes I laugh that I'm fat. I believe that helps, to laugh off the problem. " (P3, female, 39 years) Some patients said it was important to prioritize yourself and to allow help, however, sometimes patients are too proud.

The following coping strategies were also perceived as helpful: religious faith (praying does not take the pain away, it only gives strength/courage/hope to endure pain), talking to fellow-sufferers, and having a pet (provides companionship and friendship).

Based on our findings, a conceptual model (Fig. 1) was proposed reflecting the six core concepts most relevant to the HRQoL construct in chronically ill patients with low SES. The model emphasizes the interaction between concepts and their (in)direct influence on patients' HRQoL. The hypothesized dynamics suggest that individuals are continuously confronted with stressors that trigger psychosocial reactions that, in turn, negatively affect coping behaviour and subsequently HRQoL. Explanations for the relationships between the concepts are discussed in detail below.

To our knowledge, this is the first qualitative study exploring how people with low SES experience their chronic disease. The findings of the in-depth exploration were translated into a generic conceptual model. Although several conceptual models have already been published [28] [29] [30] [31] , previous studies primarily focused on middle-to upper-class patients while this study extensively investigated the perspective of socioeconomically disadvantaged groups. Our findings are particularly useful for health care professionals who monitor chronically ill patients. It can guide them in optimizing treatment, recognizing unmet practical and emotional needs, enabling patients to cope with their illness, and thus helping them to live best possible life [13] . Low SES persons are typically faced with a complexity of stressors: high levels of financial and social problems, job insecurity, poor-quality housing, traumatic events etc. [32] The illness was perceived as an additional problem on top of all other problems, reinforcing the experienced burden (e.g. greater care-dependency, greater risk of social isolation and loss of work) -often referred to as 'cumulative disadvantage' [33] . These stressors are hypothesized to directly influence the concepts of autonomy, loneliness, emotional well-being, support, and coping. Most of these relationships have been confirmed by the literature [34] [35] [36] [37] [38] [39] [40] [41] [42] [43] .

Literature also confirms that chronic diseases involve loss of independence [38, 44] . Patients cannot live the life they lived before or the life they imagined living [38] , often referred to as 'chronic sorrow' which reflects long-term periodic sadness in reaction to continuous personal and social losses that are part of chronic illness or disability [45, 46] . Previous research demonstrated how dependency increases negative emotions as well as reducing self-efficacy, which is important in order to cope properly [47] .

Our results furthermore emphasize that loneliness and social isolation are distinct concepts: some patients felt lonely despite having frequent social contacts, while other patients with infrequent social contact did not feel lonely [35] . As such, 'loneliness' can be defined as the subjective feeling of being isolated and 'social isolation' as the objective state of having few social relationships [35, 48] . More importantly, both concepts are found to have a direct negative impact on one's mental well-being and thus on the overall quality of life [49, 50] .

The above described factors (low SES, being chronically ill, loss of dependence, loneliness) are associated with negative emotions [47, [51] [52] [53] . More specifically, chronically ill patients are more susceptible to negative psychological states as a result of changes associated with the disease [54, 55] . In addition, emotional inequalities exist: the lower one's socioeconomic position, the more likely negative emotions are experienced [56, 57] . Literature showed that SES affects coping strategies by influencing psychological well-being [58, 59] . As in our study, patients' lower psychological well-being is hypothesized to negatively affect coping behavior, which in turn lowers HRQoL.

Patients experiencing a lack of social, financial, and health-related support negatively influenced the relationship between emotional well-being and coping strategies. Literature hypothesized the mediating role of social support in the relationship between psychological well-being and health-risk behaviors (e.g. smoking), but not specifically in coping [60] .

Finally, previous research confirmed coping resources are socially patterned [61] : individuals with lower SES have scant resources (e.g. small social network, little money), resulting in lower sense of personal control or mastery and a limited tendency to directly tackle problems during stressful encounters [18, 62] . The effect of SES on coping behavior would be mediated by control beliefs: low SES individuals have lesser believe in life's controllability leading them to engage in less efficacious coping strategies that may exacerbate their problems even more [59] . It is therefore not surprising that a maladaptive coping style (e.g. avoidance behavior, self-blame, negation, social withdrawal) was often reported. Previous findings indicate that high SES is positively associated with adaptive coping (e.g. acceptance, positive reappraisal, seeking for social support) which is associated with higher adaptation, well-being, and quality of life while low SES is positively associated with maladaptive coping, which is related to poorer health outcomes [63, 64] . 

Findings suggest that patients' needs should not be reduced to disease-related needs only -focusing on the bigger picture is more important. It is crucial for health care professionals to acknowledge the role of social factors (e.g. by providing patients with a social prescription, connecting them to other services [65] ), to pay attention to signs of, for instance loneliness, and to create a safe environment where patients feel at ease to share concerns, needs, and feelings. Furthermore, more cohesive support within the health care system should be provided. For example, it is important to be fully informed about the personal circumstances of the patient. In this way, treatment, follow-up, and communication can be tailored to the personal and social characteristics of the individual patient, as reflected in person-centered care [66] . Moreover, patients should be more assisted to strengthen their resources in order to cope with the disease and other stressful life events -which is extra challenging in this target group. It is however important to note that individual coping cannot overcome social disadvantage such as poverty. An important resource is resilience, defined as the ability to cope with traumatic and stressful events and to overcome them in an effective and positive way [64, 67] . Strengthening patients' resilience would result in adaptive coping through better control of the patient's behavior and emotions and mental flexibility, and appropriate interaction with the social environment. At the same time, this relates to positive outcomes in terms of HRQoL. To further improve HRQoL in patients with low SES, an individual approach is recommended. Indeed, a "one size fits all" approach might not work because low SES persons differ in many aspects (i.e. heterogeneity in skills, life history, support) and thus different needs and target for intervention. Only by considering individual preferences and priorities, HRQoL can be improved.

An important strength is the development of a generic conceptual model that fit the realities in clinical practice of patients with complex health and social needs, often neglected by disease-specific pathways [68] . After 12 interviews, no additional topics emerged from the data indicating data saturation was reached. However, we conducted three additional interviews to increase the credibility of the results. In addition, Lincoln and Guba's criteria were used to check the trustworthiness and rigour of the qualitative data [69] .

A number of limitations should be acknowledged. First, the sample consisted of different ages and gender, however, diversity in cultural background was not achieved.

Participants in this study were Caucasian who spoke the language of interest. As a result, our results could not be transferred to people of other ethnic backgrounds. Second, we cannot conclude whether our findings are unique to the population we studied. Hence, an interview study with high SES patients is recommended to obtain insights into the intersectionality of the different social classes. Third, the causal sequence of findings visualized in the conceptual framework is based on hypothesis. Hence, quantitative research is needed to test the model.

In conclusion, this study is the first to provide detailed insight into the experiences of living with a chronic disease in patients of lower SES. The results were incorporated into a newly proposed conceptual model and can be used in clinical practice and during education to raise awareness among clinicians and health care providers that the patient's needs go beyond the disease itself. Future research is needed to validate and test the model. results. All of the authors contributed to the study design, revised the manuscript critically for important intellectual content, approved the final version to be published and agreed to be accountable for all aspects of the work.

This work was funded by BOF (Bijzonder Onderzoeksfonds; Special Research Fund) grant number 01 N02618.

To protect the anonymity of participants, the qualitative data used in this research cannot be made publically available. Data may be made available upon reasonable request from the corresponding author.

The study has been approved by the Ethical Committee of Ghent University Hospital, Ghent, Belgium (reference number: B670202042965). Ethical principles were maintained throughout the research. All methods were

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The authors would like to thank all the participants who participated in the interview study and the general practitioners for recruiting the participants. 

The online version contains supplementary material available at https:// doi. org/ 10. 1186/ s12875-021-01578-7.Additional file 1. COREQ (COnsolidated criteria for REporting Qualitative research) Checklist.