Abstract
The aim of this study is to determine the effects of nursing care, based on Watson’s Theory of Human Caring, given to the relatives of palliative care patients on caregivers’ spiritual well-being and hope. This research was planned as a randomized controlled trial and conducted among 60 patient relatives (intervention group: 30, control group: 30) taking care of their patients in five palliative care units in Turkey. Data were collected via the Introductory Information Form on Patient Relatives, the Beck Hopelessness Scale, and the Spiritual Well-Being Scale. Although administered nursing care caused a significant difference in the Beck Hopelessness Scale scores of the intervention group (U= 235.5, p = 0.001); no change was measured in scores from the Spiritual Well-Being Scale (U=385.0, p = 0.336). The findings of the study evidenced that nursing care based on Theory of Human Caring diminished the hopelessness levels of patient relatives while causing no effect on their spiritual well-being.
Introduction
Around 40 million people around the world demand palliative care each year. In addition to patients, millions of patient relatives primarily become involved in the palliative care process (World Health Organization, 2019). Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Palliative care aims to through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. This definition stresses the importance of improving the quality of life of both patients and their relatives (World Health Organization, 2002). Patient relatives play a salient role in offering patient care and support, which inevitably pushes them to face physical, emotional, psychological, socio-economic, and other challenges (Candy et al., 2011; Krug et al., 2016). It has been widely reported that among relatives of palliative care patients, there is a high incidence of mental distress, depression, anxiety, sleep disturbance, fear, and despair (De Korte-Verhoef et al., 2014; Götze et al., 2014; Ullrich et al., 2017; Oechsle et al., 2019).
Keeping hope alive has a major effect on helping patient relatives cope with emergent problems. In the caregiving process, hope facilitates patient relatives’ acceptance of the current situation and helps them discover positive meanings (Revier et al., 2012). Thus, the presence of hope is associated with spiritual well-being (Cotter & Foxwell, 2015). Spirituality lets a person seek love, faith, hope, and meaning in life; manage social relations; perform self-exploration; survive tough conditions; and save vital energy to maintain health (Hall, 2013). It has been reported that spiritual well-being has a positive relationship with one’s physical, emotional, and functional well-being and quality of life (Rego et al., 2020). It was also accentuated that the spiritual well-being of patient relatives is correlated with mental health, social activity, the strength to live, and better management of varied layers of bodily pain (Vespa et al., 2018).
Meeting the psychosocial and spiritual needs of individuals is the most important goal of palliative care services. Therefore, providing spiritual support to strengthen the ability of patient’s relatives to cope with the problems they experience during the care process is important (Daştan & Buzlu, 2010). Previous studies have reported that the spiritual care practices of nurses support the individual emotionally in coping with the problems of the patients and their relatives, it directly or indirectly reduces distress, and it facilitates the adaptation to the current situation by increasing the quality of life (Narayanasamy & Owens, 2001; McEwen, 2005; Como, 2007). Nurses should plan to offer spirit-lifting interventions to patient relatives giving care to patients in the terminal phases of disease. In addition, it should be the kind of nursing care that can meet caregivers’ spiritual needs (Revier et al., 2012).
Prof. Dr Jean Watson is a nurse theorist who focuses on human care. Watson developed the Theory of Human Caring between 1975 and 1979 (Lukose, 2011). This theory focuses on the interpersonal process between the individual and the nurse. Theory of Human Caring focuses more on the psychosocial aspects of individuals rather than their physiological aspects. In this context, Theory of Human Caring emphasizes a philosophy of nursing care that focuses specifically on the spiritual and psychosocial dimensions. The conceptual elements of the Theory of Human Caring include the caritas process, the transpersonal caring relationship, caring moments and caring–healing modalities (Fawcett, 2005; Kumar & Soumya, 2017). Theory of Human Caring entails 10 caritas processes that guide nurses to offer holistic care based on love, affection, and unique commitment (Lukose, 2011). Since Watson deemed the word ‘intervention’ to be mechanical, she defined nursing practices as ‘caritas’ in lieu of ‘interventions’. In Latin, caritas is synonymous with ‘valuing, understanding, caring and loving’ (Kumar & Soumya, 2017). Nurses provide love and care to the individual using the caritas process. When caritas processes are used, nursing duties and traditional care become holistic. The relationship between the nurse and the individual is authentic, interpersonal, and compassionate. A positive care atmosphere is created when importance is given to the spiritual development of both the caregiver and the care recipient (Lukose, 2011). Especially, the second and 10th caritas processes of Theory of Human Caring include nursing practices for the purpose of the study. The second caritas process focuses on supporting a person’s faith and hope; the 10th caritas process emphasizes focus on miracles, grasping the meaning of life, and similar existential and spiritual forces (Watson, 2010).
In this study, nursing care guidelines that we developed in line with Watson’s Theory of Human Caring to support the spiritual well-being and hope of relatives of patients in palliative care units were used.
Method
Objective
The aim of this study was to determine the effects of nursing care provided based on the Watson’s Theory of Human Caring to the relatives of palliative care patients on caregivers’ spiritual well-being and hope. We hypothesize that subsequent to nursing care based on Theory of Human Caring the level of hopelessness will be lower and the level of spiritual well-being will be higher in the intervention group than in the control group.
Study Design
This research was planned as a pretest-posttest trial model in a randomized controlled study. This study used a randomized controlled experimental design based on the guidelines recommended by the Consolidated Standard of Reporting Trials 2010 (CONSORT) (CONSORT 2010 Checklist File 1). Figure 1 shows the CONSORT flow diagram of the study. Research’s CONSORT flow diagram.
Participants
The research population consisted of relatives of patients hospitalized in five palliative care units in the city of Samsun in northern Turkey between 05 October 2018 and 18 March 2019. Sample size was computed based on the analysis results of one sample t test with 5% error, 99.9% testing power, and 1.208 effect size. 60 participants who met the inclusion criteria were placed into the intervention group and 56 participants were placed into the control group. While 27 participants in the intervention group were excluded from the research due to their patient’s death, three participants were excluded since their patients were referred to another service for treatment. In the control group, 26 participants were excluded from the research due to their patient’s death. The study was completed with a total of 60 participants, 30 in the intervention group and 30 in the control group (See Figure 1). Research inclusion criteria were as follows: aged 18 or older, willingness and motivation to participate in the research, literacy, position as a primary caregiver, and lack of mental or verbal deficiency to respond to the questions.
Randomization and Blinding
An anonymised list of patient relatives who accepted to participate in the study and met the research inclusion criteria was sent to a blind researcher who an unfamiliar, independent person outside the research scope. Participants were randomly assigned to groups by this blinded investigator using a computerized random number generator. Due to the nature of the research, it was not possible to blind the participants to their group assignments.
Data Collection
Data were collected via face-to-face interviews by administering the Introductory Information Form on Patient Relatives, the Beck Hopelessness Scale (BHS), and the Spiritual Well-Being Scale (SWBS).
Introductory Information Form on Patient Relatives
This form, devised by the investigators, entails questions about the sociodemographic (age, gender, education level etc.) and caregiving features of patient relatives (care-giving duration, average number of daily care hours etc.).
Beck Hopelessness Scale
The BHS is a 20-item scale developed by Beck et al. (1974) to detect a person’s hopelessness level related to the future. The Turkish language translation and validity-reliability analysis of the scale was conducted by Durak (1993). The scale consists of three subdimensions (Feeling about the Future, Loss of Motivation, and Hope). Scale items are answered as yes or no. The score obtainable from the scale varies in between 0–20. Higher scores indicate that there is a high level of hopelessness in an individual. The Cronbach Alpha reliability coefficient measured 0.85 in the original study (Durak, 1993); in this study, it was computed as 0.90.
Spiritual Well-Being Scale
Developed by Ekşi and Kardaş (2017), the SWBS is aimed at understanding people’s lives in tandem with their personal, social, environmental, and transcendent aspects and determining their life processes. The SWBS is a 5-point Likert-type scale entailing 29 items across three subdimensions (Transcendence, Harmony with Nature, and Anomie). To compute the total score, items in the Anomie subdimension are inversely scored. The score obtainable from the scale varies between 29–145. Higher scores indicate stronger spiritual well-being. The Cronbach Alpha reliability coefficient in the original study was computed as 0.88 (Ekşi & Kardaş, 2017); in this study, it was computed as 0.78.
Intervention Group
Caritas Processes Used in Interviews and Administered Nursing Practices.
Control Group
Upon meeting patient relatives in the control group, the measurement tools used in the research were administered to the participants. In the palliative care units where the research is conducted, religious support services are routinely provided to the patients and their relatives. There are also rest rooms (reading, praying, etc. used for) for the relatives of the patients. Except these routine clinical procedures, the investigator did not administer any other interventions to the control group. Four weeks later, the same measurement tools were reiterated as a posttest.
Ethical Considerations
Prior to starting the research, the approval of the Clinical Research Ethics Committee (13 April 2018/No: B.30.2. ODM.0.20.08/1551) was obtained. In addition, within the research context, written consent from the affiliated hospitals in which the research conducted was obtained (11 September 2018/No: 61646299–604.02). This study was conducted in accordance with the principles of the Helsinki Declaration. Participants were informed about the aims of the study. Written informed consent was also obtained from each participant. This study was registered at ClinicalTrials.gov (Identifier: NCT04415411).
Data Analysis
Data were analysed via SPSS (v.23) software. Compliance with normal distribution was investigated in a Kolmogorov Smirnov test. In the analysis of incompliant data with normal distribution, the Mann Whitney U test was harnessed for between-group comparisons. The Chi-square test was administered in the comparison of categorical data. Correlation was examined via the Spearman correlation analysis. The reliability of the used scales was analyzed via Cronbach Alpha. Significance values were taken as p < 0.05.
Results
Distribution of Sociodemographic Features of Patient Relatives.
Note. X 2 Chi-square test statistic; Mean, Average; SD: Standard Deviation; Min, Minimum; Max, Maximum; 1,00 US$=14,58 Turkish Liras (TL).
Distribution of Patient Relatives’ Features in Terms of the Caregiving Process.
Note. X 2 Chi-square test statistic.
In-Group and Intergroup Comparison of Pretest and Posttest Scores Obtained from the Beck Hopelessness Scale and Spiritual Well-Being Scale.
Note. U, Mann Whitney U Test statistics; Min, Minimum; Max, Maximum.
The SWBS pretest (U= 394.5, p = 0.410) and posttest (U=385.0, p = 0.336) scores exhibited no differences with respect to the two groups (Table 4). This finding failed to back up our research hypothesis that patient relatives who received nursing care based on Theory of Human Caring would obtain higher average total scores on the SWBS (higher spiritual well-being level) than patient relatives in the control group.
Discussion
Hope is a major spiritual and psychosocial pillar of support for relatives of palliative care patients. Hope empowers patient relatives’ skills to cope with the problems they face (Revier et al., 2012). The practices of the palliative care team towards patient relatives are stated as supporting hope, involving the family in care, informing about the patient’s condition and the process, and communicating openly and honestly (Steele & Davies, 2015). The Theory of Human Caring supports hope by establishing a trustful relationship with the individual, showing a sincere interest, focusing on hope-provoking activities (writing experiences, drawing a picture of your dreams, writing letters about the past and the future), supporting the individual to see the situation with its good aspects, and revealing the sources of hope (Watson, 2010). Our finding showed that the BHS scores of the intervention group were lower than the scores of the control group (U= 235.5, p = 0.001). This result showed that the caritas processes and caring-healing modalities administered to patient relatives in the intervention group pulled their hopelessness levels down. In this regard, it is considered that the Theory of Human Caring can be used as a significant resource by nurses in supporting the hope of palliative care patient relatives. In line with the findings in this research, in another study, a 2 week intervention program based on theory was administered to the relatives of palliative care patients, and it was reported that after the intervention program, an increase was witnessed in the hope levels of patient relatives (Duggleby et al., 2007).
In order to help patient relatives cope with stressful events and the existential troubles they face during the caregiving process, spirituality is extremely significant. It has been emphasized that during the caregiving process spirituality diminishes the burden of patient relatives while elevating well-being, improving quality of life, empowering management skills, and assisting in the development of effective coping strategies (Oliveira et al., 2015; Chivukula et al., 2018). In this research, the pretest total score from the SWBS was measured as 131 in patient relatives from the intervention group and 129 in patient relatives from the control group. The highest score that can be obtained from the SWBS scale is 145. Considering that the maximum score of the scale is 145, it is safe to argue that there is a high level of spiritual well-being among patient relatives. Spiritual well-being has important implications for an individual’s health and well-being (Harrad et al., 2019). It supports patient relatives in the caregiving process. In this regard, to maintain the spiritual well-being of individuals, they need to be supported continuously. Nursing interventions that support the spiritual aspect of individuals can help individuals to accept certain situations, strengthen their hopes and plan.
This research validates that there was not a statistically significant difference in terms of posttest spiritual well-being scores between patient relatives in the intervention and control groups (U= 385.0, p = 0.336). Religious belief is a salient factor affecting spirituality. In a study administered among relatives of oncology patients it was detected that cancer elevated the existential worry of individuals whereas religious belief empowered the well-being of patient relatives (Adams et al., 2014). Despite the findings of this research, in some of the intervention studies that used different spirituality scales among caregiver patient relatives of oncology patients, it was reported that spiritual well-being levels of caregivers climbed higher (Lapid et al., 2016; Sun et al., 2016). Since a vast majority of citizens in Turkey practice the Muslim faith, in which belief in fate is a sine qua non and individuals find solace in religion in times of trouble, it is suggested that the spiritual part of individuals should also be empowered. In this research, at the end of the nursing care based on the theory of human caring, no difference was measured in terms of spiritual well-being levels between patient relatives from the intervention and control groups, and it is suggested that this finding can be attributed to the spiritual and religious practices of patient relatives.
Conclusion
Via this randomized controlled study Theory of Human Caring has been used for the very first time in the nursing care of palliative-care patient relatives. In this study that the Watson’s Theory of Human Caring backed up individuals’ levels of hope but had no transformative effect on their state of spiritual well-being. Hence, it is suggested to apply the Theory of Human Caring among sampling groups with a wide range of socio-cultural, spiritual, and religious features. We recommend that palliative care nurses be provided with trainings on caritas processes and caring-healing modalities. Moreover, we recommend that caregiving guidelines based on Theory of Human Caring be developed and put into practice.
Limitations
A key limitation of this study is that due to the nature of the research, it was not possible to blind the participants to their group assignments. Provided that different studies that are conducted among patient relatives with a variety of socio-cultural, religious, and spiritual features are generated, it is not feasible yet to generalize the findings obtained from this research for all patient relatives in palliative care units.
Footnotes
Acknowledgments
We would like to extend our gratitude to participant patient relatives.
Author Contributions
All authors conceived and designed the study. AK: Conceptualization, Methodology, Formal analysis, Data curation, Investigation, Writing-original draft, Writing-review & editing, Visualization. ZK: Conceptualization, Methodology, Formal analysis, Investigation, Writing- review & editing, Project administration, Funding acquisition. All author reviewed the manuscript, provided comments, and approved the final version.
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 work was supported by the Ondokuz Mayıs University Commission for Scientific Research Projects under the project number of PYO. SBF.1904.19.006.
