Spiritual Distress, Hopelessness, and Depression in Palliative Care: Simultaneous Concept Analysis. — TEI-tagged view

Helga MartinspersName, Rita S. SilvapersName, Joana BragançapersName, Joana RomeiropersName, Sílvia CaldeirapersName (2024date). “Spiritual Distress, Hopelessness, and Depression in Palliative Care: Simultaneous Concept Analysis..” Healthcaretitle·j.

Object of study — spiritual distressterm·dom, hopelessnessterm·dom and depressionterm·dom in palliative careterm·key

Research question — how spiritual distressterm·dom, hopelessnessterm·dom and depressionterm·dom are each defined for people with palliative careterm·key needs and their caregiversterm·key

Contribution — new theoretical definitions that separate spiritual distressterm·dom, hopelessnessterm·dom and depressionterm·dom

Full text — tagged

Spiritual Distressterm·dom, Hopelessnessterm·dom, and Depressionterm·dom in Palliative Careterm·key: Simultaneous Concept Analysisterm.

Abstract Spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom are concepts that are often used in palliative careterm·key. A simultaneous concept analysisterm (SCAterm) of these concepts is needed to clarify the terminology used in palliative careterm·key. Therefore, the aim of this study is to conduct a SCAterm of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom in palliative careterm·key. A SCAterm was performed using the methodology of Haase’s model. A literature search was conducted in March 2020 and updated in April 2022 and April 2024. The search was performed on the following online databases: CINAHL with Full-Text, MEDLINE with Full-Text, MedicLatina, LILACS, SciELO, and PubMed. The search was achieved without restrictions on the date of publication. A total of 84 articles were included in this study. The results highlight that the three concepts are different but also share some overlapping points. Spiritual distressterm·dom is embedded in the rupture of their spiritual/religious belief systems, a lack of meaning in life, and existential issues. Hopelessnessterm·dom is a sense of giving up and an inability to control and fix the patient’s situation. Finally, depressionterm·dom is a state of sadness with a multi-impaired situation. In conclusion, refining the three concepts in palliative careterm·key is essential since it promotes clarification and enhances knowledge development towards intervention.

Keywords: caregiversterm·key, depressionterm·dom, Haase’s model, hopelessnessterm·dom, palliative careterm·key, Rodger’s evolutionary model, simultaneous concept analysisterm, spiritual distressterm·dom 1. Introduction Palliative careterm·key (PC), while still an integrated component of modern healthcare, is increasingly recognized as an essential part of all healthcare systems and should be provided at all levels of care [ 1 , 2 , 3 ]. PC is the active, holistic care of individuals of all ages with profound health-related suffering from severe illness, especially those near the end of life [ 4 ]. The global burden of severe health-related suffering will almost double by 2060 [ 5 ]. Suffering is health-related when it is associated with illness or injury. Suffering is severe when it cannot be relieved without medical intervention and when it compromises physical, social, or emotional functioning. Palliative careterm·key should be focused on relieving the health-related suffering associated with life-limiting or life-threatening conditions or the end of life [ 6 , 7 ]. The integration of PC into universal health coverage is essential to mitigate the catastrophic weakening of health systems and to alleviate the suffering of millions of patients and their families [ 5 ]. PC aims to improve the quality of lifeterm·dom of patients, their families, and their caregiversterm·key [ 4 ].

Family caregiversterm·key are still the most excellent source of support for patients in end-of-life care, especially when they wish to be cared for at home. Carersterm·dom can be considered the core structure for the continuity of care of these patients [ 8 ].

There are several definitions of carersterm·dom. The National Institute for Health and Clinical Excellence (UK) offers the following definition: ‘carersterm·dom, who may or may not be family members, are lay people in a close, supportive role who share in the illness experience of the patient and who undertake vital care work and emotion management’ [ 9 ].

Caring in the final phase of life raises some specific issues, and carersterm·dom have specific needs: psychological and emotional support, information, help with the personal, nursing, and medical care of the patient, out-of-hours and night support, respite, and financial help. A carerterm·dom’s ability to cope reflects their individual circumstances and resources and may change throughout the patient’s illness [ 10 ].

Health professionals frequently underrate caregiversterm·key’ needs for information regarding palliative careterm·key, death, and dying, and may feel inadequately prepared to discuss these issues [ 11 ]. Caregiversterm·key simultaneously report their need for detailed information about what to expect as their loved one dies and difficulties in comprehending and receiving lousy news [ 11 ].

Although universally recognized, the role of the family caregiverterm·key still needs to be better supported by society, health teams, and family systems. Substantial knowledge about the actions performed by caregiversterm·key can facilitate good clinical and psychosocial practices. For instance, in the particular context of palliative careterm·key, the family simultaneously provides and receives healthcare. For the well-being of the patients, the caregiversterm·key perform different activities added to those they have in their routine, which is essential for the continuity of care of the patient at the end of their life, both at the hospital and at home [ 8 ].

Family caregiversterm·key experience limited involvement in planning palliative careterm·key. Their voices seem to be silenced, and the involvement of family caregiversterm·key is not in proportion to their responsibilities. Family caregiversterm·key’ involvement in palliative careterm·key should be an emergent topic in primary nursing education and professional education for nurses [ 12 ].

As mentioned above, palliative careterm·key is a fundamental part of health care in which several nursing diagnoses emerge in a negative light since it is a domain that is surrounded by suffering and existential issues. Thus, concepts of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom may be experienced by the patients [ 13 , 14 ].

Emphasizing the attention to the preceding concepts, they are included in nursing taxonomies and clinical practice. In 1978, NANDA-International, Inc. (NANDA-Iterm·key) (Oconto Falls, WI, USA) included the nursing diagnosis of spiritual distressterm·dom in the taxonomy. This diagnosis was reviewed in 2002 and 2013 [ 15 ]. Currently, spiritual distressterm·dom arises at certain times in life in response to a serious health situation, and the patients are involved in the sense of lack of meaning in life and suffering [ 16 ].

On the other hand, hopelessnessterm·dom is a nursing diagnosis according to NANDA-Iterm·key, and is described as a subjective state where the individuals have limited or no choices on their behalf [ 14 ]. Finally, depressionterm·dom is not a nursing diagnosis in the NANDA-Iterm·key taxonomy, and is considered a related factor, risk factor, or a defining characteristic [ 14 ]. However, in the International Classification for Nursing Practice (ICNP), there is a diagnosis of depressed mood, which embraces a negative feeling of sadness or melancholy [ 17 ].

These concepts have many similarities and are interconnected, and a distinction between the three concepts seems difficult to achieve in clinical nursing practice. The latter statement is supported by Haase et al. [ 18 ]; there are certain concepts that are difficult to define, bringing additional difficulties that may cause theoretical obstacles and references to these as distinct concepts. Hence, it is essential to analyze the concepts of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom to clarify the terminology used regarding people with palliative careterm·key needs and caregiversterm·key in clinical practice. Additionally, clarifying spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom would be helpful for clinical reasoning and in planning nurses’ interventions in clinical practice. The purpose of this study is to conduct a simultaneous concept analysisterm to define the similarities and particularities of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom in people with palliative careterm·key needs and caregiversterm·key, as described in the nursing literature. In addition, this SCAterm will achieve a theoretical definition of the concepts of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom to refine and clarify the concepts, facilitating clinical reason in nurses’ clinical practice.

2. Materials and Methods The research question: What is the definition of spiritual distressterm·dom, of hopelessnessterm·dom, and of depressionterm·dom in people with palliative careterm·key needs and caregiversterm·key?

This study used the nine-step approach of SCAterm by Haase et al. [ 18 ] based on Rodger’s evolutionary model. The SCAterm method is a “strategy designed to analyze interrelationships and identify theoretical overlap, common themes, and distinguishing characteristics among similar or complementary concepts” [ 18 ] (p. 227).

Next, the nine steps of the SCAterm [ 17 ] will be described in detail ( Figure 1 ): Data source/Literature review A search conducted in international online databases was performed via EBSCOHost (CINAHL with Full-Text; MEDLINE with Full-Text; MedicLatina), LILACS, SciELO, and PubMed. The search was performed on March 2020 and updated on April 2022 and April 2024, without restrictions on the date of publication. No time limit was established to allow a greater range of results.

The search of each database followed a personalized algorithm search for each concept analyzed in this study (detailed information is summarized in Supplementary Materials ) in the title/abstract. Results were imported into the reference management software EndNote X8.

Inclusion criteria: original papers concerning spiritual distressterm·dom or hopelessnessterm·dom, or depressionterm·dom concerning patients or caregiversterm·key in the context of palliative careterm·key; original papers [regardless of the research method], thesis, editorials, discussion, or opinion pieces. Studies in English, French, Spanish, and Portuguese were considered. Search, screening, extraction, and data analysis were performed by two independent reviewers [H.M. and R.S.S.], and two reviewers were included to solve disagreements [J.B. and J.R.]. The entire process was supervised by a senior researcher [S.C.].

In the beginning, 3232 citations were included. After deleting the duplicates with EndNote X8, 1460 articles were saved. After reading the title/abstracts, 277 articles were kept. The full-text review yielded 84 articles for inclusion. The selection process is summarized in Table 1 . The full details are available in the Supplementary Materials .

Number of citations of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom.

SCAterm process [ 18 , 19 ].

3. Results The results are presented individually to allow a full understanding of the unique and individual approach to each concept. Further information is available in the Supplementary Materials .

3.1. Spiritual Distressterm·dom The proposed conceptual definition of spiritual distressterm·dom is a disconnection from self, others, and God or the transcendent. Individuals express a lack of meaning and purpose in life, which is due to the rupture of their spiritual/religious belief system.

The surrogate termsterm·key of spiritual distressterm·dom that have been identified were existential distress, existential suffering, spiritual suffering, spiritual pain, and spiritual struggle.

Enablers regarding spiritual distressterm·dom are lack of knowledge concerning spiritual distressterm·dom, difficulty in distinguishing spiritual and religious needs, lack of time, lack of education, personal topic, and organization issues.

The obstacles are comfort and compassionate care, social and family support, a healing environment, spiritual support, and an interprofessional and holistic approach to patients. Table 2 presents the process model of spiritual distressterm·dom.

Process model: Spiritual distressterm·dom.

3.2. Hopelessnessterm·dom There are several surrogate termsterm·key for the concept of hopelessnessterm·dom, such as depressionterm·dom, despair, helplessness, pessimism, powerlessness, and worthlessness.

On one hand, the enablers are the absence of firm beliefs or strong faith, denial, and lack of pain control. On the other hand, the obstacles are spiritualityterm·dom, resilience, and acceptance.

The definition of hopelessnessterm·dom in this study is an emotional condition in which the individuals express a sense of giving up, an inability to improve and control one´s situation, leading to mental health decline and the desire for a hastened death. Detailed information concerning the process model of hopelessnessterm·dom is available in Table 3 .

Process model: Hopelessnessterm·dom.

3.3. Depressionterm·dom The main obstacles are spiritualityterm·dom, acceptance, and resilience. The enablers are sleep disorders, anxiety, negative social interactions, women, and people with a low education level. Surrogate termsterm·key regarding depressionterm·dom are depressed mood, depressive disorders, mood disorders, and sadness.

The definition proposed, concerning depressionterm·dom is a concept that emerges from emotional exhaustion and psychological distress, in which the individual expresses sadness and has multi-impaired function, possibly leading to a negative overall impact on patients’ lives and increased mortality. For a visual representation of the process model of depressionterm·dom, Table 4 is presented.

Process model: Depressionterm·dom.

3.4. Validity Matrixterm·key for Critical Attributes The validity matrixterm·key for critical attributes was re-examined by all researchers. This is an important tool to assess the interrelationships and differences between the concepts but above all to achieve theoretical cogency [ 18 ]. Likewise, the validation matrices provide a vital approach because we can examine all the elements of the concepts in factors [ 18 ].

The validation matrix of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom allows us to expose the factors that make these concepts different from each other. In this way, we can see that the characteristic lack of meaning and purpose in life is a determinant for spiritual distressterm·dom, while the hopelessnessterm·dom results show that there is a giving up in life. In turn, depressionterm·dom is characterized by multiple impairments in several domains. Spiritual distressterm·dom presents a unique characteristic, which is a disconnection from God and a feeling of abandonment and punishment. For spiritual distressterm·dom, the results show a disintegration of self; however, for depressionterm·dom, there is an impaired self-esteem, hopelessnessterm·dom, and the inability of the self to control or to improve their situation.

Further information is available in Table 5 .

Validity matrixterm·key of critical attributes of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom.

4. Discussion The data yielded by this study provided clarifying and relevant evidence regarding the concepts of spiritual distressterm·dom, hopelessnessterm·dom, and depressionterm·dom. This research determined the antecedents, attributes, consequences, and a new definition of the three concepts. This SCAterm is important in nursing since the clarification of concepts permits the classification or characterization of phenomena and the evaluation of the strengths and limitations of each concept. However, the concepts are known to be dynamic and change through time and with context [ 20 ]. Moreover, we want to highlight that concept analysis plays a significant role as it allows us to know the current state of science, and it is essential in developing nursing knowledge and quality of care [ 21 , 22 , 23 ].

The three concepts under study emerge from similar antecedents such as the caregiversterm·key’ burdens, and impaired relationship between the caregiverterm·key and patient, lack of financial and social support, and the deterioration of the patients’ health. The caregiverterm·key’s burden is due to the caregiving tasks and care demands [ 24 ], which are aggravated by the greater severity of the symptoms presented by the patient as the control and management of these symptoms becomes crucial [ 25 ]. In addition, one of the antecedents of our study is the lack of control of pain and lack of symptom management. These results are in agreement with a study by Eagar et al. [ 26 ], in which they report that about 26% of the patients at the beginning of palliative careterm·key have poor symptom management; however, this value decreases to 13.9% in the final stage of life. Although they are similar antecedents in this SCAterm, it was possible to distinguish different antecedents and attributes.

To begin with, spiritual distressterm·dom emerges from the breakdown of spiritual/religious belief systems and the disintegration of the self, in which existential issues take center stage. These findings are only restricted to spiritual distressterm·dom since the new definition proposed in this SCAterm indicates that depressionterm·dom and hopelessnessterm·dom are incompatible with the rupture of the spiritual/religious belief system of the patients and caregiversterm·key. A review performed by MartinspersName and CaldeirapersName [ 27 ] that focused on the patients’ experiences regarding spiritual distressterm·dom also emphasized that spiritual distressterm·dom occurs when patients have a rupture of their spiritual and religious beliefs and have existential issues. According to Roze des Ordons et al. [ 28 ] (p. 129), these existential issues are associated with “meaning, identity, autonomy, dignity, support, connectedness, relationships, stress, anxiety, guilt, isolation, hope, fear, and anxiety”. Based upon these existential characteristics, we also found similarities in the spiritual distressterm·dom concept.

The spiritual distressterm·dom concept must be updated as the latest concept analysis was performed by Villagomeza [ 29 ] almost 20 years ago, which embraced fundamental expressions of impairments of spiritualityterm·dom, such as connectedness, faith, religious belief systems, value systems, meaning and purpose in life, self-transcendence, inner peace and harmony, and inner strength and energy. Although it has been a long time since then, the concept of Villagomeza [ 29 ] could be accepted nowadays since the results are in line with the attributes of our study.

Depressionterm·dom happens in the context of psychological distress, stress, and emotional exhaustion. The prior studies in this area also underline that a stressful event is necessary for depressionterm·dom [ 30 , 31 ]. According to the vision of Wilson [ 31 ], a depressed mood and the loss of interest or pleasure in activities are attributes that are necessary to reach the diagnosis of depressionterm·dom. The results of this study show that a depressive mood is a surrogate termterm·key and not an attribute. In addition, ICPN considers the expression of a depressive mood with regard to the nursing diagnosis. The most recent concept analysis of depressionterm·dom states that depressionterm·dom is a complex concept related to sadness [ 30 ]; in our study, depressionterm·dom assumes a multi-impairment role regarding self-esteem, emotional processing, cognitive functioning, and social functioning, which supports the previous author’s understanding.

Regarding the concept of hopelessnessterm·dom, in the SCAterm, it undertakes the role of an attribute in the concept of depressionterm·dom and an outcome in the concept of spiritual distressterm·dom. The previous study also found that hopelessnessterm·dom was an attribute of depressionterm·dom [ 30 ]. These discrepancies are not novel since questions about hopelessnessterm·dom are a reality in nursing (since this is a nursing diagnosis in both the ICNP and the NANDA-Iterm·key) but can also be an outcome. Further studies regarding the role of hopelessnessterm·dom are needed since disclosures regarding hopelessnessterm·dom are vital in clinical practice in a palliative careterm·key setting to facilitate nurses’ clinical reasoning.

Our findings revealed that according to the identified attributes, hopelessnessterm·dom is a sense of giving up, and patients are unable to control their situation, which, compared to the concept of depressionterm·dom and spiritual distressterm·dom, has an inherently more negative definition. The first concept analysis mentions that hopelessnessterm·dom is an endpoint for the patients and is grounded in a pessimism perspective [ 32 ]. The latest concept analysis mentions that hopelessnessterm·dom is a psychological response to a negative incident in a patient’s life [ 33 ]. In addition, there are negative expectations, thoughts, and feelings toward changing one´s future [ 33 ]. As shown by the results of our concept analysis, our results are in alignment with the previous study. Nevertheless, our SCAterm brings a new dimension to the sense of futility of life experienced in palliative careterm·key.

Another attribute considered recurrently in this SCAterm was guilt, which was present in the depressionterm·dom and spiritual distressterm·dom concepts. Leget [ 34 ] endorses the idea that palliative careterm·key is necessary to promote forgiveness and reconciliation. Nevertheless, to achieve this goal, it is necessary for the healthcare team to take an interdisciplinary approach. The benefits of forgiveness in palliative careterm·key are well documented and are enormous, particularly regarding positive outcomes in the patient’s general health [ 34 , 35 ].

Regarding the enablers of spiritual distressterm·dom in palliative careterm·key that were highlighted in this analysis of concepts, these are in line with the study by Bar-Sela et al. [ 36 ], which identified the barriers to spiritual care. Therefore, our study shows that there is a lack of operationalized spiritual care in palliative careterm·key, which leads to the promotion of spiritual distressterm·dom. It is about time to change this paradigm and encourage the inclusion of the spiritual dimension in care since the benefit of palliative careterm·key is mainly manageable discomfort, giving hope and meaning in their lives [ 36 ]. In addition, the inclusion of spiritualityterm·dom in clinical practice enhances the quality of lifeterm·dom for patients in palliative careterm·key [ 37 ].

The consequences from the three concepts analyzed all have a negative impact on patients and palliative careterm·key providers. Special attention to hopelessnessterm·dom and depressionterm·dom should be given since patients are at risk of suicidal ideationterm·key. This disturbing result is in alignment with the study of Ribeiro et al. [ 38 ].

The main limitation of the study concerns the language in the inclusion criteria, as results are published in other languages that reviewers need to be proficient in. Additionally, a quality assessment of the included papers was not conducted since there is a variety of empirical and theoretical studies included in this SCAterm.

Further studies determining the significant statistical relationships between the three concepts are advised. In addition, testing the efficacy and effectiveness of interventions that address these concepts will generate robust evidence to guide clinical decision-making in clinical practice. Furthermore, studies are recommended to improve the diagnostic accuracy of these concepts.

5. Conclusions From this SCAterm, we can realize that there are interrelationships and overlaps between the three concepts. However, there are attributes that characterize the concepts studied individually. Regarding the scientific development of nursing, the contribution of this research created the clarification and refinement of the theoretical definition of concepts, providing better clinical reasoning for nurses and indorsing an improvement in diagnostic accuracy in clinical practice with a greater focus on palliative patients and their caregiversterm·key.

The implications for clinical practice in palliative careterm·key stemming from this simultaneous concept analysisterm are profound. By elucidating the interrelationships and overlaps between various concepts, this research facilitates a deeper understanding of the complex dynamics involved in caring for palliative patients and their caregiversterm·key.

Supplementary Materials The following supporting information can be downloaded at: https://www.mdpi.com/article/10.3390/healthcare12100960/s1 , Table S1. Search strategy for spiritual distressterm·dom. Table S2. Search strategy for hopelessnessterm·dom. Table S3. Search strategy for depressionterm·dom. Figure S1. PRISMA flow diagram of the selection process of spiritual distressterm·dom. Figure S2. PRISMA flow diagram of the selection process of hopelessnessterm·dom. Figure S3. PRISMA flow diagram of the selection process of depressionterm·dom. Table S4. Included studies descripition of spiritual distressterm·dom. Table S5. Included studies descripition of hopelessnessterm·dom. Table S6. Included studies descripition of depressionterm·dom. Table S7. Process model of spiritual distressterm·dom with references of included studies. Table S8. Process model of hopelessnessterm·dom with references of included studies. Table S9. Process model of depressionterm·dom with references of included studies. Refs. [ 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 , 99 , 100 , 101 , 102 , 103 , 104 , 105 , 106 , 107 , 108 , 109 , 110 , 111 , 112 , 113 , 114 , 115 , 116 , 117 , 118 , 119 , 120 ] are cited in the supplementary materials.

Author Contributions Conceptualization, H.M., R.S.S., J.B., J.R. and S.C.; methodology, H.M., R.S.S., J.B., J.R. and S.C.; software H.M., R.S.S., J.B., J.R. and S.C.; validation, H.M., R.S.S., J.B., J.R. and S.C.; formal analysis, H.M., R.S.S., J.B., J.R. and S.C.; investigation, H.M., R.S.S., J.B., J.R. and S.C.; resources, H.M., R.S.S., J.B., J.R. and S.C.; data curation, H.M., R.S.S., J.B., J.R. and S.C.; writing—original draft preparation, H.M.; writing—review and editing, H.M., R.S.S., J.B., J.R. and S.C.; visualization, H.M., R.S.S., J.B., J.R. and S.C.; supervision, S.C.; project administration, H.M. and S.C.; funding acquisition, S.C. All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement Not applicable.

Informed Consent Statement Not applicable.

Data Availability Statement The data supporting this study’s findings are available in this article’s Supplementary Materials .

Conflicts of Interest The authors declare no conflicts of interest.

Funding Statement This research was funded by FCT (Projeto CIIS I&D–UIDB/04279/2020–Base). Rita S. SilvapersName is a Research fellow from the Foundation for Science and Technology, Portugal: PRT/BD/154470/2022.

Footnotes References Associated Data Supplementary Materials Data Availability Statement The data supporting this study’s findings are available in this article’s Supplementary Materials .