Care needs, social support and meaning in life in patients after acute heart failure hospitalisation: a longitudinal study

Abstract

Background

Meaning in life serves as a protective mechanism for coping with persistent, often distressful symptoms in patients with heart failure. However, meaning in life and its associated factors are not adequately explored in patients after acute hospitalisation for heart failure.

Aims

To explore the associated factors of meaning in life in patients with heart failure from acute hospitalisation to 3 months post-discharge.

Methods

A total of 103 hospitalised patients with heart failure in Northern Taiwan were recruited using a longitudinal study design and interviewed with structured questionnaires including meaning in life, symptom distress, care needs, and social support at hospitalisation, 1 month and 3 months post-discharge.

Results

A total of 83 patients completed the 3 months follow-up. The presence of meaning in life significantly increased from hospitalisation to 3 months post-discharge. Decreases in care needs (B = −0.10, P = 0.020) and social support (B = −0.18, P = 0.016) from hospitalisation to 3 months post-discharge were significantly associated with an increase in the presence of meaning in life, while a decrease in social support was associated with an increase in the search for meaning in life (B = −0.17, P = 0.034).

Conclusion

Care needs and social support were pivotal factors for developing meaning in life for patients with heart failure. Assessments of care needs and social support might help strengthen their meaning in life.

Introduction

Advances in medical treatments and surgeries have increased the survival rate of heart failure (HF), but patients still feel threatened by unpredictable sudden death.^1,2 Patients with advanced HF are confronted with disability, the reality of dying due to worsening symptoms and uncertainty of the disease prognosis, which might result in a loss of hope for the future and increased supportive and palliative care needs.^3,4 The occurrence of a highly stressful experience such as HF might violate an individual’s beliefs and goals concerning how things are in the world, what is worth pursuing and why they should live.⁵ This violation of goals and beliefs might contribute to changes in an individual’s sense of meaning in life. Studies have shown that the sense of meaning in life is associated with functional disability, health-related quality of life and risk of mortality.^6,7 Therefore, understanding the meaning in life and its associates is crucial for helping patients live with HF.

Meaning in life is defined as ‘the extent to which one’s life is experienced as making sense, as being directed and motivated by valued goals, and as mattering in the world’.⁵ Meaning in life is a ‘personal sense of existence’ at the psychological and spiritual levels, a ‘subjective feeling’ produced by the interaction between the individual and the social environment and a ‘cognitive feeling’ formed by everyone’s goals and value of living.⁶ Meaning in life consists of two dimensions: the search for meaning, which is the degree of an individual’s engagement in searching for meaning in life, and the presence of meaning, which is the degree of an individual’s perception of their life as significant and meaningful.⁷ A sense of meaning in life can help patients determine and be satisfied with their goals and value in life.^5,8 Thus, the development of meaning in life is a pivotal factor for coping with persistent symptoms during the chronic phase of or at the end stage of a disease.⁸

Previous studies have shown that a strong sense of meaning in life is related to stable married relationships and family support,^9,10 while worsening symptoms and poor functional status contribute to a weak sense of meaning in life.^6,11 Due to the complexity and uncertainty of the disease prognosis, patients with HF might have significant unmet care needs, including physiological, psychosocial, information and spiritual care needs.^11–14 Ross and Austin¹⁵ also found that patients with end-stage HF struggle with spiritual/existential concerns such as meaning/purpose of life alongside the physical and emotional challenges of their illness. In addition, a literature review showed that social support is essential for confronting with the burden of HF and related rehospitalisation and mortality.^16,17 Previous studies have found that patients with HF who accept the disease through positive reinterpretation experience a strong sense of meaning in life over time.⁸ Thus, palliative care and social support are crucial for patients with HF to cope with their irreversible illness and find meaning in life. However, it is unknown whether the change of the sense of meaning in life is affected by factors such as social support or just is the consequence of the nature of HF ranging from a chronic stable syndrome to an extremely acute exacerbation warranting hospitalisation. So far, limited quantitative research has focused on exploring the changes in meaning in life and its contributing factors in patients with HF after discharge from acute HF-related hospitalisation. The specific aims of this study included: (a) investigating the changes in meaning in life, symptom distress, care needs and social support from acute hospitalisation to 3 months post-discharge; (b) exploring the associations between meaning in life and patients’ demographic characteristics, symptom distress, care needs and social support at different time points; and (c) identifying the significant factors with impacts on the changes in meaning in life in patients with HF from acute hospitalisation to 3 months post-discharge. Figure 1 shows the conceptual framework of this study.

Methods

Study design

This study employed a longitudinal study design with purposive sampling. After enrollment, data were collected using structured questionnaires at acute hospitalisation (baseline/time 1), 1 month post-discharge (time 2), and 3 months post-discharge (time 3).

Participants and setting

Patients were recruited from the cardiovascular ward in a local teaching hospital in Northern Taiwan. The inclusion criteria included patients who: (a) were over 18 years old; (b) were diagnosed with acute congestive HF by the cardiologist at hospitalisation and had symptoms of dyspnoea with chest X-rays showing pulmonary oedema or pleural effusion (International Classification of Disease version 10 (ICD 10): I50.9); (c) had clear consciousness and were able to communicate in Mandarin or Taiwanese; and (d) agreed to participate in the study. The exclusion criteria were patients with: (a) severe vision and hearing impairment; and (b) mental illness, including cognitive dysfunction, dementia and uncontrolled schizophrenia.

During the study period from January 2017 to May 2019, a total of 108 patients was assessed for eligibility. Five of these patients did not participate in this study because they lived in other cities (n=2), transferred to other hospitals for treatments (n=1), or refused to complete the entire questionnaires (n=2) (Figure 2). Thus, 103 patients who agreed to participate in the study signed the informed consents and completed the baseline/time 1 questionnaires (demographic, symptoms distress, care needs, social support and meaning in life) prior to discharge in the cardiovascular inpatient ward. Of these 103 patients, 20 were lost to follow-up due to refusal (n=12), loss of contact (n=7), or death (n=1). Finally, a total of 83 patients completed the 3 months’ follow-up in the outpatient HF clinic, yielding an attrition rate of 19.4% (Figure 2). The sample size estimation was calculated by G power (University of Kiel, Germany) with F test-repeated measures analysis of variance (ANOVA) within-factor tests.¹⁸ A minimum sample size of 55 was required to achieve 80% power to detect repeated measures of three time points with an effect size of 0.25 and an alpha of 0.05.

Procedure

This study was conducted in accordance with the principles of the Declaration of Helsinki. Ethics approval was obtained from the institutional review board of the study hospital (institutional review board (IRB) no. 201601084B0). The questionnaires of this study were administered by a researcher who was a HF case manager and familiar with the instruments to ensure the same procedure of data collection for each participant. The researcher explained the study purpose, methods, procedures and the right of free withdrawal to all participants and obtained the informed consent from participants who were willing to participate in the study. Then, the researcher interviewed the participants using structured questionnaires to collect data on demographic and clinical characteristics including age, gender, education level, marital status, economic status, the New York Heart Association (NYHA) functional classification, symptom distress, care needs, social support and the meaning in life at the time of enrollment (baseline/time 1) in an education room of the cardiovascular ward during hospitalisation. At time 2 and time 3, symptom distress, care needs, social support and meaning in life questionnaires were self-reported by the participants at an education room of the HF outpatient department. If patients were unable to read, the HF case manager asked the questions based on questionnaires. It took about 30 minutes to complete the questionnaires. To ensure the retention of participants, each patient who completed the questionnaires received a gift certificate of NT $100.

Measurements

This study used structured questionnaires including demographic characteristics, the symptom distress scale, the social support questionnaire, the heart failure needs assessment questionnaire (HFNAQ) and the meaning in life questionnaire (MLQ). Demographic and clinical characteristics were measured by asking participants to respond to a demographic questionnaire including age, gender, education level, marital status, economic status, living conditions, social activities, religious beliefs (yes or no religion), possession of private insurance and functional status (NYHA functional class).

Symptom distress was measured using the Chinese version of the symptom distress scale (SDS) developed by Chen et al.¹⁹ The 17-item SDS includes common symptoms in patients with HF, such as difficulty breathing, coughing, fatigue or oedema. The total possible score ranges from 17 to 85. A higher score indicates a higher level of symptom distress. The validity and reliability of the SDS are supported by a content validity index of 0.8 and Cronbach’s alpha of 0.85.¹⁹

Care needs were measured using the Chinese version of the HFNAQ, which was developed by Davidson et al.²⁰ The 30-item HFNAQ assesses patients’ perceptions of their care needs in the physical, psychological, social and spiritual domains in the past month on a Likert scale from 1 ‘hardly ever’ to 5 ‘always’. The total possible score ranges from 30 to 150. A higher score indicates higher care needs. The reliability of the English version of the HFNAQ is supported by a Cronbach’s alpha of 0.77. We used forward-translation and back-translation to translate the English version of the HFNAQ into a Chinese version. The reliability of the Chinese version of the HFNAQ was supported by a Cronbach’s alpha of 0.85.

Social support was measured using the Chinese version of the social support questionnaire developed by Wang et al.²¹ The questionnaire consists of emotional, appraisal, informational and tangible support. The total possible score for each subscale ranges from 0 to 45, with higher scores indicating a higher level of support. The reliability of this scale was supported with a Cronbach’s alpha of 0.95 in this study.

Meaning in life was measured using the Chinese version of the MLQ developed by Steger et al.²² The MLQ consists of two subscales: the presence of meaning in life (MLQ-P) and the search for meaning in life (MLQ-S). Participants were asked to rate their responses to each of 10 items from 1 absolutely false to 7 absolutely true. The total score for each subscale ranges from 5 to 35. Higher scores indicate a stronger sense of the presence of meaning in life or search for meaning in life. Cronbach’s alpha of the original scale ranged from 0.82 to 0.87 for both the MLQ-P and MLQ-S.²² In this study, Cronbach’s alpha was 0.71 and 0.85 for the MLQ-P and MLQ-S, respectively.

Statistical analysis

The statistical analysis was performed using SPSS 18.0. Independent t-tests and chi-square tests were used to examine the homogeneity of participants’ characteristics and outcome variables between the completed and the loss to follow-up groups at baseline/time 1. The repeated measures ANOVA was used to explore the changes over time in symptom distress, care needs, social support and meaning in life from acute hospitalisation to 3 months post-discharge. Independent t-tests and Pearson’s correlations were used to assess the associations between meaning in life and patients’ demographic characteristics, symptom distress, care needs and social support at different time points. Generalised estimating equations (GEEs) were used to identify significant factors associated with changes of meaning in life from acute hospitalisation to 3 months post-discharge. There were no missing data in this study. A two-sided P value less than 0.05 indicated statistical significance.

Results

Demographic and baseline characteristics

Table 1 presents the participants’ characteristics and differences at baseline/time 1 between patients who completed the study and those lost to follow-up. There were no significant differences between the patients who completed follow-up (n = 83) and those lost to follow-up (n = 20) in demographic characteristics, left ventricular ejection fraction (LVEF), NYHA functional class, comorbidities, symptom distress, social support, care needs or meaning in life. The mean age of the 83 patients was 63.90 ± 12.32 years. Most of the patients were men (65.1%) and married (65.1%), had an education level lower than high school (73.5%) and lived with family (73.5%) (including 21.3% who lived with family but were not married). Most of the patients were economically independent (69.9%), participated in social activities (78.3%) and had religious beliefs (88.0%). All patients had the national health insurance provided by the government and 34.9% had private insurance, which might have additional coverage of medical costs.

Changes in meaning in life, symptom distress, care needs and social support over time

Meaning in life was divided into two subscales: the presence of and the search for meaning in life. Table 2 shows that the presence of meaning in life increased from 22.16 ± 5.23 (baseline/time 1) to 22.20 ± 4.99 (time 2) and 23.43 ± 4.32 (time 3). The repeated measures ANOVA shows a significant increase in the presence of meaning in life at time 3 compared with baseline/time 1 (P=0.04). The search for meaning in life did not change significantly from acute hospitalisation to 3 months post-discharge (19.25 ± 5.99 at baseline/time 1 vs. 19.26 ± 5.30 at time 2 vs. 19.45 ± 4.83 at time 3, P=0.953).

The symptom distress scores significantly decreased from 42.00 ± 11.22 (baseline/time 1) to 32.66 ± 11.55 (time 2) and 30.83 ± 8.96 (time 3) (P<0.001), indicating the high level of symptom distress during hospitalisation. In addition, patients with HF had significantly higher care needs scores at baseline/time 1 (77.57 ± 17.19) than at time 2 (67.95 ± 17.25) and time 3 (64.89 ± 12.78) (P<0.001), indicating a significant reduction in care needs from acute hospitalisation to 3 months post-discharge. Social support significantly increased from 16.10 ± 9.43 (baseline/time 1) to 19.19 ± 9.25 (time 2), but decreased to 17.65 ± 7.82 at time 3 (P=0.013), indicating that patients with HF received stronger social support at 1 month post-discharge compared with acute hospitalisation.

Associated factors of the presence of meaning in life

Table 3 shows associated factors of the presence of meaning in life based on independent t-tests and Pearson’s correlations coefficient (r). During hospitalisation (baseline/time 1), a stronger presence of meaning in life was significantly associated with participating in social activities (t = 2.02, P = 0.046), having private insurance (t = 2.02, P = 0.047) and higher social support (r = 0.34, P = 0.002). At 1 month post-discharge (time 2), economic independence (t = 2.68, P = 0.009), participating in social activities (t = 2.21, P = 0.029), lower care needs (r = −0.25, P = 0.023) and stronger social support (r = 0.28, P = 0.011) were significantly associated with a stronger presence of meaning in life. At 3 months post-discharge (time 3), a stronger presence of meaning in life was significantly associated with age less than 65 years (t = 1.04, P = 0.002), higher education (t = −2.52, P = 0.014), having private insurance (t = −2.49, P = 0.015), better functional status (t = 2.26, P = 0.026), lower care needs (r = −0.42, P<0.001) and stronger social support (r = 0.28, P = 0.009).

Table 4 shows factors associated with the changes of presence of meaning in life from baseline/time 1 to 3 months post-discharge analysed by a GEE model after adjusting for age, education, economic status, social activities, private insurance and functional class. The increases in care needs (B = −0.10, P = 0.020) and social support (B = −0.18, P = 0.016) from baseline/time 1 to time 3 were significantly associated with decreases in the presence of meaning in life.

Associated factors of the search for meaning in life

Table 3 shows that social support was the only factor significantly associated with the search for meaning in life (r = 0.27, P = 0.014) during hospitalisation (baseline/time 1). At 1 month post-discharge (time 2), patients aged less than 65 years (t = 2.89, P = 0.005) and with higher education (t = −2.76, P = 0.008), economic independence (t = −2.44, P = 0.017) and stronger social support (r = 0.35, P = 0.001) had significantly higher scores of the search for meaning in life than other patients. At 3 months post-discharge (time 3), higher functional limitations (t = 2.09, P = 0.030) were significantly associated with a lower score of the search for meaning in life.

Table 4 shows factors associated with the changes in the search for meaning in life from baseline/time 1 to 3 months post-discharge analysed by a GEE model after adjusting for age, education, economic status, social activities, private insurance and functional class. The search for meaning in life was significantly associated with the change in social support from baseline/time 1 to time 3 (B = −0.17, P = 0.034). This finding indicates that an increase in social support from baseline/time 1 to 3 months post-discharge was associated with a decrease in the search for meaning in life.

Discussion

Meaning in life changed from acute to chronic phases of HF

The presence of meaning in life did not significantly increase for patients with HF until 3 months post-discharge, during the chronic phase of the HF. This finding suggests that patients living with chronic stable HF might have a high level of presence of meaning in life. However, the decreased level of meaning in life at acute deterioration reveals that the presence and the search for meaning in life might be just as fragile as the syndrome of HF. It appears that the sense of meaning in life is fluctuating in response to unexpected worsening of HF. The prodromal events leading to hospitalisation and the acuteness of HF exacerbation might have distracted or shaken the sense of presence of meaning in life. On the other hand, in the scenario of acute de novo HF, these patients might not immediately realise the value of their life in response to acute HF; instead, they developed meaning in life during the chronic phase. Pastor and Moore¹² showed that while facing disease stress, patients need a period of time to calm down and then determine their goals and the meaning of their life. These findings imply that exploration of the strategies to escalate the meaning in life is potentially doable and demanded, and warrants further studies and observations on the long-term trajectory of meaning in life in the future.

Steger et al.²² noted that patients are motivated to search constantly for the value of life when their lives are threatened by critical disease stress. It is assumed that the motivation of searching for meaning in life decreased from the acute to chronic phase because the associated symptoms were substantially improved. Intriguingly, our study showed that there were no significant changes, even with a trend of increase, from acute care hospitalisation to 3 months post-discharge. It is not surprising that in response to the highly stressful situation combined with disability and the possibility of death, the life of patients with HF becomes so difficult that they doubt the meaning and value of their existence and start to search for meaning in life. However, it is interesting to learn from our study that patients with HF constantly searched for meaning in life to overcome the burden of residual symptoms and unpredictable death, even though their symptoms and care needs were substantially reduced at 3 months post-discharge.

Factors associated with the presence of meaning in life

Our data showed that there was a significant relationship of meaning in life to care needs and social supports. A significant negative correlation between care needs and meaning in life was noted from one to 3 months post-discharge, suggesting that the fewer the care needs, the stronger the presence of meaning in life. Previously, a few researchers described that the complexity and uncertainty of a disease might give rise to tremendous physiological, psychological, social and spiritual care needs.^11-14 Low et al.³ and Kimani et al.⁴ also found that, due to recurrent deteriorations and re-hospitalisation, patients with chronic HF doubt the value of their life. Furthermore, without adequate satisfaction of their care needs, approximately half of the patients lose the goal for living and cannot live independently.¹⁵ Our study showed that care needs are the highest in the stage of acute decompensated HF and gradually decrease after discharge. Further analysis based on the GEE model demonstrated that a decrease in the care needs from baseline/time 1 to 3 months post-discharge were significantly associated with increases in the presence of meaning in life. Therefore, continuously tracking and meeting the care needs of patients with HF are crucial in the development of their meaning in life.

On the other hand, our data also demonstrated the stronger social supports the stronger the presence of meaning in life. This is compatible with the reports by Luttik et al.¹⁶ and Viveiros et al.¹⁷ that social supports improve the symptoms and the wellbeing in psychosocial aspect in patients with HF. Harding et al.¹³ also reported that, to develop a strong meaning in life, patients need to learn adequate information for self-care and for how to improve their functional capacity in addition to family support. However, our study found that a decrease in social support from baseline/time 1 to 3 months post-discharge was associated with an increase in the presence of meaning in life. This finding indicates that prolonged dependence on social support is probably an obstacle for developing meaning in life. Provided that the presence of meaning in life is fragile due to acute disease-related stress and fluctuated during the course of HF, a potential strategy to protect meaning in life is to satisfy the care needs and social support adequately in addition to providing medical treatments.

Factors associated with the search for meaning in life

Patients with incurable disease usually experience substantial psychological distress, which limits their wellbeing and potentially activates their motivation to search for meaning in life.⁶ Our study found that social support was significantly correlated with searching for meaning in life in patients with HF. Patients with stronger social support had a stronger motivation to search for meaning in their lives. In fact, searching for meaning in life is an active and purpose-driven process, especially in response to negative events.²² Both physical limitations and lack of social support from family or friends impact patients’ psychological wellbeing and searching for meaning in life.²³ Similar to our findings, Hupkens et al.²⁴ found that major changes in life can stimulate individuals to reposition their life goals and value, which are produced via the interaction between patients and their families, culture and social environment. Fegg et al.²⁵ also found that family support is an important source of support for patients to seek new survival goals under the stress of incurable diseases. However, based on the GEE model, we found that an increase in social support from baseline/time 1 to 3 months post-discharge was associated with a decrease in the search for meaning in life. These findings suggest that although better social support might be associated with a better search for meaning in life, prolonged dependence on social support might not be beneficial for improving patients’ motivation of searching for meaning in life in the chronic phase of HF. Similar studies found that patients with HF in the chronic stage expressed grieving for their inability to contribute to the family or community due to loss of independence due to physical limitations. They felt useless due to increased dependence on family and loss of productivity in society. The prolonged dependency on the social support of others might give rise to a sense of sorrow and loss of their value of life.²⁶

Limitations

There are some limitations of this study. First, all patients were recruited from one regional teaching hospital using convenience sampling. Our findings, based on a small sample size, cannot be generalised to patients with HF from other hospitals with different patient characteristics. In addition, future studies are needed with a larger sample size from multiple centres to improve the power and generalisability of the findings. Second, due to the length of the questionnaires, our study did not assess anxiety and depression to exclude patients with anxiety and depression, which might interfere with the interpretation of our findings and could be considered in future studies. Finally, meaning in life was measured using the 10-item MLQ with an acceptable Cronbach’s alpha of 0.71. However, the questionnaire items seemed to overlap, and the quantitative measurement could lead to an inadequate exploration of the phenomenon of patients’ meaning in life. Future studies could combine both qualitative and quantitative research methods to explore meaning in life in patients with HF in different disease states and to observe the trajectory of meaning in life by a long-term follow-up.

Conclusions

In patients after hospitalisation due to acute decompensated HF, their meaning in life significantly increased at 3 months post-discharge. Care needs and social support, appropriately provided by healthcare providers and family, were pivotal factors for the development of meaning in life. Assessments of care needs and social support might help strengthen their meaning in life.

Acknowledgement

This study was supported by Chang Gung Memorial Hospital Keelung, Taiwan (CZRPG2G0011, CZRPG2G0012). The author(s) would like to thank all patients who participated in this study and all the experts who supported this study.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This study was supported by Chang Gung Memorial Hospital Keelung, Taiwan (CZRPG2G0011, CZRPG2G0012).

References