Patients with low socioeconomic status (SES) are 43% more likely to experience an unplanned hospital readmission than are patients with high SES.1,2 Among patients with heart failure (HF), poor self-care is often linked to an unplanned hospital readmission.3 Despite this, self-care interventions to reduce hospital readmissions for HF have yielded equivocal results, and such studies predominately enrolled male and white samples.4,5 In addition, in patients with HF, strategies to reduce readmissions such as early follow-up appointments and telephone follow-up have been investigated but have shown little to modest effect.6
Socioeconomic status encompasses several social determinants of health, such as education, income, housing location, and employment status—all of which can influence the risk of unplanned hospital readmission.7,8 Consequently, several of these factors have been examined and accounted for in different risk and predictive statistical models; however, findings remain inconclusive.9,10 This may be because data related to housing, income, and employment are often derived from different types of population-based databases (eg, billing and registry), disallowing the inclusion and examination of specific social and economic factors.11–13
The World Health Organization defines social determinants of health as the circumstances in which people are born, grow, live, work, and age and the systems put in place to deal with illness.14 Qualitative studies have been conducted in individuals with low SES to determine how social determinants of health may influence decisions about seeking healthcare. In those studies, patients with low SES describe experiencing psychological stress and depression.15 Psychological stress in this patient population has been described and related to experiences of financial hardship and racial discrimination.16 There is a lack of information on the relationships among stress, self-care behavior, and unplanned hospital readmissions in the population of patients with low SES and HF.17,18 To address this, we used a mixed-methods research approach and had the following aims: (1) explore perceived stress among patients with HF with low SES and an unplanned hospital readmission, (2) describe self-care practices among patients with HF with low SES who experienced an unplanned hospital readmission, and (3) characterize the contribution of perceived stress to self-care among low-SES patients who experienced an unplanned hospital readmission.
In this mixed-methods concurrent embedded study, the quantitative data set provided a supportive role to the qualitative findings. Data were collected in one 90-minute session. Qualitative data were collected using semistructured interviews, and quantitative data were collected using standardized instruments. After the interview data and the quantitative data were analyzed, the results were integrated.
Sample and Setting
A purposive sampling method was used to recruit hospitalized patients with HF and low SES from 2 urban hospitals located in Chicago serving low-SES patient populations. Institutional review board approval was obtained, and all participants provided written informed consent.
Inclusion criteria were as follows: (1) 18 years or older, (2) spoke English, (3) undergoing a current admission for acute decompensated HF, (4) admitted within 180 days of the current admission for HF, and (5) earned less than $30 000 per year or resided in a census tract where greater than 30% of the community lived below the poverty level. Participants (n = 35) were recruited between August 2015 and April 2016.
Qualitative Data Collection
An interview guide was developed from a literature review, the principal investigator's (PI) clinical experience, and consultation with experts in the field. The interview guide was revised after initial pilot testing. The interview guide consisted of a series of open-ended questions (“Tell me about how you take care of your heart failure.”), followed by probes to elicit more in-depth descriptions of the topic (“What do you mean by that?”). In general, the interview focused on stressors associated with patients' living circumstances, strategies patients used to foster self-care, family dynamics, and coping strategies that patients used to decrease stress.
Qualitative Data Analysis
A professional transcription service transcribed verbatim the audiotaped interviews; the PI reviewed transcriptions for accuracy, which were then analyzed using content analysis and ATLAS.ti version 6.1.19 A codebook was developed a priori then updated during data analysis through an iterative process of coding.19 Codes were summarized across cases to yield a rich descriptive analysis. Finally, emerging themes were identified both within and across coding categories. For the first 3 tapes, the PI (C.D.), 1 coauthor (V.V.D.), and an independent coder (E.M.) discussed the coding line by line, and if there was a discrepancy in a code, they discussed whether an adaption or change should be made to the code. Then, to ensure the trustworthiness, a subset of transcripts using the codes from the codebook were analyzed independently by C.D. and E.M. Results of the independent analysis were compared to ensure consistency of codes.20 Methodological rigor was maintained through an audit trail and periodic debriefing with experts in HF.19
Quantitative Data Collection
We collected sociodemographic data (eg, race/ethnicity, age, comorbidities) from a medical record review and a self-report survey. Standardized instruments were used to measure HF self-care, perceived psychological stress, and comorbidities (hyperlipidemia, diabetes, chronic obstructive pulmonary disease, obstructive sleep apnea, asthma, anemia, renal disease, atrial arrhythmia, and obesity).
Similar to other investigators, SES was quantified using 2 established methods: neighborhood census tract and individual self-report.21–23 Neighborhood SES was determined using census block data; those living in a census block characterized by more than 30% of residents living below the federal poverty level were classified as low SES.24 Low individual SES was based upon a self-reported family income below the cutoff value of $35 000. If the participant had either low neighborhood SES or low individual SES, the participant was considered “low SES.”
Heart Failure Self-Care
Self-care was measured using the Self-care of Heart Failure Index (SCHFI). The SCHFI is a reliable and valid instrument with 22 items measured on a 4-point Likert scale.25 The items form 3 different subscales: self-care maintenance, management, and confidence. A cutoff point of 70 or higher on each of the SCHFI scales has been established as indicating adequate self-care.3
Psychological stress was measured using the Perceived Stress Scale (PSS-10). The PSS-10 items were designed to assess the extent to which participants find their lives unpredictable, uncontrollable, and overloaded.26 Others have found that PSS-10 scores correlate with health and health-related outcomes.16,27,28 Total scores range from 0 to 40, with higher scores indicating higher levels of stress. As recommended by Cohen and Williamson,29 we used a score of 20 as a cutoff point, with a score of 20 or higher considered “high stress” and a score lower than 20 considered “low stress.”
Analysis of the quantitative data, PSS-10, and SCHFI scores occurred at the completion of the study. Standard descriptive statistics, including means, medians, and ranges, were calculated for all quantitative variables. A correlational analysis was performed to determine the association between self-care and stress.
Integrated Data Analysis
The qualitative and quantitative data were integrated during the final analysis phase. Qualitative evidence regarding stress and self-care were compared to the scores on the SCHFI and PSS-10, respectively. This was completed with each individual participant and then with the total sample. The accounts of stressful events created an anchor for the next step of analysis, which entailed examining themes related to family and life circumstances within the context of self-care. An informational matrix was developed to compare and contrast the emergent qualitative themes and the quantitative evidence of perceived stress and self-care across the cases.19
Most participants were African American (age range, 36–89 years), did not graduate from high school, and qualified as low neighborhood SES (Table 1). The census tracts in which these participants resided had high violence and homicide rates at the time of the study (Figure).30 The number of admissions during the 180 days before the participants' recruited admission ranged from 2 to 12 per patient.
Self-care of Heart Failure Index
Few participants had adequate self-care (Table 2). Self-care management was poor: only 8.5% (n = 3) scored 70 or higher on self-care management, and only 17% (n = 6) scored lower than 70 on the self-care maintenance scale. The highest scores were found with the self-care confidence scale, with 23% (n = 8) reporting adequate self-care confidence.
Perceived Stress Scale
The mean (SD) PSS-10 score was 15 (8), and values ranged from 0 to 30. Thirty-four percent (n = 12) of participants had PSS-10 scores of 20 or higher (indicating high stress). There were no significant relationships between PSS-10 scores and the SCHFI subscales.
Participants described psychological stress related to social determinants of health such as crime, financial hardship, community violence, and personal experiences (eg, a recent death of a family member). We identified 5 themes that participants reported about stressful events (Table 3).
Many participants described the occurrence of a stressful event before their current HF admission. Recent stressful events included a family member's sudden death, a family member being hospitalized, or the participant becoming homeless. Participants reported stress due to their inability to pay for necessities such as rent, heat, or electricity. Other reported reasons for feeling stress included the possibility of being evicted from their apartment, crisis situations requiring financial resources, and identifying methods to pay for the crisis. The example below is from a 60-year-old man whose adult daughter died 1 month before his admission and the participant was unable to pay for the funeral: “Us not having any money. I had to borrow and beg, (the pastor) helped me pay for her funeral.”
Participants who were caring for grandchildren or children (regardless of age) expressed stress and worry about their family's life situation. Some participants acknowledged this type of stress as more important than managing their own self-care. For example, one 56-year-old woman described the stress she had regarding her teenage granddaughter's lifestyle: “[S]he has had sex, she has had chlamydia. She is probably pregnant…. She constantly runs away. I am constantly worrying, and it takes a toll on me….”
Heart failure symptoms were a source of stress because they limited the participant's ability to work, use public transportation, or be active, as one 70-year-old explained, “This is my stress, my health.”
Many participants described feeling stress related to the deaths of family members. A family member's death from cardiovascular disease was considered stressful because participants were concerned that they would suffer a similar fate. For example, a 36-year-old recently diagnosed with HF explained: “All I know is the males in my family don't live past 65. My dad died of a heart attack…my uncle died, my grandfather, my other uncle…. Cousin died at 15…. It's just messed up in my family.”
Participants described coping strategies to relieve their feelings of stress. Prayer was described as a vital coping mechanism to deal with the participants' perceived negative life circumstances. A second coping strategy described by participants was “not thinking about it” or compartmentalizing their stress. Generally, this method was essential to controlling the amount of psychological stress in one's life. A 36-year-old man revealed that 10 years previously, while he was in prison, his son had died because of a medication error at a hospital. He explained: “In my head, it's blocked off. That's how I cope. Because people gonna die.”
Several participants (n = 3) discussed coping strategies such as cooking or listening to music to cope with stress. Although these coping strategies did not improve their economic or living situation, the coping strategies allowed the participants to feel better psychologically.
Integrated Data Analysis
The integrated data provided additional insight into how family and community factors influenced participants' self-care. When the qualitative data and self-care management scores were integrated, the qualitative data suggested possible explanations of why the self-care management was inadequate in 92.5% of the participants (n = 32). The integrated analysis revealed the following overarching theme: Due to multiple competing stressors faced by participants, HF self-care was not the main priority. For example, a 36-year-old man (self-care management score, <70) who was recently diagnosed with HF, released from prison, and worried about his teenage son getting killed by neighborhood gunfire stated that he was under a large amount of stress (PSS score, 26). He said, “Sometimes you get so stressed out, sometimes I just, to tell you the truth, I stop caring (about my health).”
There was concordance between PSS-10 scores 20 or higher and participants' narrative accounts of stressful events. One individual (PSS-10 score 27) described the stress related to being homeless after being evicted from his apartment and moving to different hotels: “Upon doing that (moving to different hotels), I was like ‘I can't keep doing this because I'm gonna run out of money….’ And so I kinda neglected to go get it (the shortness of breath) checked out.”
When the PSS-10 results and the qualitative data were integrated, the qualitative data suggested possible explanations for why the PSS-10 scores were high (≥20) in 12 participants. However, among many participants whose PSS-10 scores were lower than 20, there was discordance between PSS-10 scores and their accounts of stressful events. Many participants described social factors that most would consider stressful, but their PSS-10 scores were lower than 20. These participants had similar narratives as those participants who scored 20 or higher on the PSS-10 (Table 4).
In this study, relationships among social determinants of health, stress, and self-care among patients with HF and low SES were examined. The major findings of this study include the following: (1) there was a discordance between perceived stress (PSS-10) scores lower than 20 and qualitative descriptions of stress and (2) stressors related to family dynamics and negative life circumstances were associated with inadequate self-care. Whereas other studies have examined the role of SES factors on reasons for frequent readmissions in patients with HF, this mixed-methods study examined psychological stress, social determinants of health, and their relationship to HF self-care among patients with low SES.
During our study time, participants were from Chicago communities experiencing high rates of violence. Eighty percent of participants were living in low-SES communities, and an additional 11% were homeless. Others (9%) were residing in assisted living facilities, with incomes below $35 000. The participants' narratives described life circumstances that most would consider stressful, yet approximately 68% of participants had PSS-10 scores lower than 20 (indicating lower stress). The quantitative scores of stress in this group were discordant with the stressful events described by several participants. Hospitalization and chronic disease are generally associated with significant psychological stress.31,32 Our findings suggest that, in certain low-SES populations (particularly those that include homeless participants), the PSS-10 may not be adequate to measure stress. Ursache and colleagues33 also found no relationship between SES and PSS-10 scores among racially diverse participants. Another explanation for this discordance might be related to the cutoff score of 20 (ie, ≥20 indicating high stress).26,29 In this population of patients, rather than using the PSS-10 or adjusting the cutoff score for high stress, we suggest using tools such as the City Stress Inventory and Confusion, Hubbub, and Order Scale (CHAOS). These tools have been used in low-income urban populations and measure perceived neighborhood disorder, exposure to violence, and chaos within the home setting.34,35
We did not find a relationship between the quantitative measures of stress (PSS-10) and self-care (SCHFI scores); as noted above, this may reflect the limitations of the PSS-10. However, the qualitative results of this study provided insight that family dynamics and community factors may impact patients' self-care and perceived stress.36 We found several factors outside the purview of the hospital or clinic that may have impacted participants' ability to adhere to their HF self-care practices. This would explain why previous interventions designed to improve self-care among similar patients with HF have not had a significant impact. Previous studies have shown that managing stress is an important component of successful self-care. Lynch and colleagues37 conducted a qualitative study to examine the relationship between stress and diabetes self-care strategies among low-SES patients enrolled in 2 large urban hospitals. Low-SES Mexican American patients were more likely to describe controlling stress as a method to manage their diabetes than were African Americans.37 However, there are no prospective studies examining the impact of stress reduction interventions in urban low-SES patients with HF; prototypical methods or strategies may not be applicable in this patient population.
A number of studies have examined the prevalence of stress-related health issues experienced by individuals living in segregated and poverty-stricken communities.38,39 Individuals living in these communities experience higher rates of posttraumatic stress disorder, depression, and anxiety.40,41 We believe that the participants in this study may have had maladaptive coping strategies that evolved from chronic exposure to stressful events, and we hypothesize that they use similar strategies of coping with their HF symptoms. For example, we posit that participants may have been experiencing accelerating symptoms for several days before admission but did not intervene because of stressful life circumstances. Only when symptoms became intolerable did they seek readmission.
Our study has several limitations. First, this was a qualitative study and cannot establish causality between the level of stress and an unplanned hospital readmission. Second, we did not enroll a comparative high-SES HF group. Third, the predominant number of African American participants prevents generalizations to other ethnicities.
Among low-SES patients with HF and an unplanned hospital readmission, it is important to consider the context in which these patients reside. The stress of living in communities where patients experience crime and poverty can impact patients' ability to manage their HF symptoms and seek timely care. It is important that healthcare providers assess a patient's community and family stressors so that appropriate referral to services can occur. Providers may need to engage other social support services and facilitate coordination and referral to shelter-based clinics. Patients may also need referral to safe, temporary, faith-based or public housing facilities. However, more cardiovascular population–based research is needed to develop and test sensitive interventions that address social determinants of health. It will take a substantial effort among nurses, physicians, social workers, and pharmacists to address barriers to improve HF self-care in low-SES patients with HF.
What’s New and Important
- Previous HF studies have failed to take into account the social determinants of health minority patients with low SES experience and their impact on patients' self-care.
- Low-SES individuals living in geographic areas with high crime and violence may experience diminished emotional responsiveness to negative events that affect their ability to identify accelerating HF symptoms.
- Medical records and large databases do not capture the social determinants of health impacting patients with HF self-care, thereby limiting low-SES population-based studies.
We would like to thank Eve Martinez-Soto for her expertise with qualitative analyses and coding.
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Keywords:Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved
heart failure; social determinants of health; readmission; socioeconomic status