The Impact of a Spiritual Care Program on the Spiritual Health of Patients with Thalassemia Major: A Clinical Trial

Abstract

Background:

In the context of chronic illnesses, spiritual health holds significant importance as a component of overall health. This study aimed to assess the influence of a spiritual care program on the spiritual health of individuals diagnosed with thalassemia.

Materials and Methods:

The quasiexperimental research design involved 2 groups and used a preintervention and postintervention approach. The study was conducted in 2022 at Omid Hospital in Isfahan, Iran, with participants randomly allocated to either the experimental group (n = 32) or the control group (n = 32). Data collection involved the use of a demographic characteristics form and the Spiritual Well-Being Scale (SWBS). The spiritual care program comprised 6 sessions focusing on 4 key domains: individuals’ relationships with God, themselves, others, and the environment. Data analysis involved Chi-square test, Fisher’s exact test, independent t-test, and paired t-test.

Results:

The results indicated that before the program implementation; there was no significant difference in the average spiritual health scores between the test and control groups. However, after the intervention, the average spiritual health score in the experimental group (76.69) exhibited a notable increase compared with the control group’s average score (66.47). These findings suggested that the intervention positively affected spiritual health.

Conclusions:

Consequently, the implementation of a spiritual care program to bolster spiritual well-being as a means of enhancing quality of life (QOL) is deemed essential.

Introduction

Thalassemia is an inherited disorder characterized by an imbalance in the production of hemoglobin, primarily stemming from abnormalities in beta-globin chain synthesis.[1] This imbalance leads to the accumulation of unbound globin chains within blood cell precursors. Patients with thalassemia present with three distinct phenotypes: thalassemia major, thalassemia minor, and thalassemia intermedia.[2] Individuals with thalassemia major face a myriad of physical and psychosocial challenges akin to those experienced by individuals with chronic illnesses. These challenges include a lifelong reliance on blood transfusions, disruptions in body image perception, delayed physical development compared with peers, high treatment expenses, occupational, marital, and reproductive difficulties, feelings of helplessness and vulnerability, susceptibility to blood-borne infections, diminished self-esteem, depressive symptoms, lack of self-acceptance, impaired interpersonal relationships, and existential fears. These multifaceted issues can significantly affect the overall quality of life (QOL) of thalassemia patients.[3,4] Jafari et al.[5] explored determinants influencing the QOL in individuals with thalassemia major and highlighted spiritual well-being as a key factor influencing their QOL.

Spiritual health is characterized within the context of a specific culture’s spiritual framework and structure and is intertwined with the values and spiritual norms that shape that particular culture and society. Consequently, the definition of spiritual health is shaped by the societal perceptions of spirituality, religion, and cultural contexts.[6] Despite variations in interpretations, spiritual health can be conceptualized as the degree to which individuals possess a favorable state across four realms of interaction: their relationship with themselves, others, the environment, and a higher divine entity.[7] Findings from a study conducted by Zoheiri et al.[8] in 2021 indicated that patients’ spiritual well-being influenced their response to challenging circumstances arising from illness.

The term “spiritual” originates from the Latin word Spiritus, denoting something that imbues the soul with vitality.[9] Spirituality is a personal attribute characterized by one’s beliefs, actions, and quest for individual significance and direction.[10] It serves as a form of social support and a mechanism for regulating conduct.[11] Spirituality can be viewed as a coping strategy, a source of communal assistance, and a tool for behavioral management.[12] Addressing and fulfilling spiritual needs can alleviate distress, enhance resilience in facing challenges, and foster feelings of tranquility and inner fortitude.[13] The research by Siler et al.[14] demonstrated the positive impact of spirituality on the experience of chronic illnesses, while a study by Reisi et al.[15] revealed its efficacy in managing complications and diseases in patients with cancer. Nurses should be mindful of patients’ spiritual requirements within the framework and principles of holistic nursing care, encompassing the quest for life’s purpose and meaning, coping with suffering and mortality, nurturing hope, fostering self-belief, and acknowledging a higher power or deity.[16]

In the context of holistic care, individuals are viewed as integrated beings where biological, psychological, spiritual, and environmental aspects are considered interconnected rather than separate entities.[17] Spiritual care is recognized as a fundamental component of holistic care, with the World Health Organization (WHO) highlighting its significance in enhancing overall QOL.[18] For individuals with chronic illnesses, spiritual care has been shown to positively impact health outcomes and alleviate mental and physical symptoms, thereby improving QOL.[19] By addressing spiritual needs, such care interventions can foster improved personal relationships, reduce stress, promote harmony between physical and mental well-being, and instill a sense of purpose and meaning in patients. The American Nurses Association (ANA) incorporates spiritual care, as an integral part, into nursing education.[20]

Previous research highlights the psychosocial impacts of thalassemia, emphasizing the need for supportive care to improve patients’ QOL. Understanding the prevalence and distribution of thalassemia aids in the development of effective public health strategies and genetic counseling initiatives. Studies reveal knowledge gaps among patients and healthcare providers, indicating a need for enhanced education and awareness campaigns. Research findings can shape healthcare policies and resource allocation for thalassemia management, ensuring better patient care and support. Moreover, investigating long-term health outcomes is crucial for understanding chronic complications related to thalassemia and formulating effective management strategies. In addition, a spiritual care program is necessary for addressing the emotional, psychological, and spiritual needs of thalassemia patients, complementing medical treatment. Spiritual care can provide coping strategies, helping patients find meaning and hope amidst their struggles with chronic illness. Such programs offer a safe space for patients to express feelings and receive support, also extending to family members. Spiritual care can be personalized to respect diverse cultural and religious beliefs, enhancing its relevance and effectiveness. Engaging in spiritual practices can improve resilience, providing patients with purpose and strength to face their condition.

Spiritual health is linked to overall QOL, with programs focusing on spiritual care leading to better life satisfaction and emotional health. Integrating spiritual care into healthcare plans fosters collaboration between medical professionals and spiritual caregivers for comprehensive support. Overall, a spiritual care program is essential for addressing the holistic needs of thalassemia patients, enhancing emotional well-being, and improving their QOL. Hence, this study sought to examine the effects of a spiritual care intervention on the spiritual health of individuals diagnosed with thalassemia major.

Materials and Methods

This study adopted a clinical trial (The research was registered under the IRCT clinical trial code 20211121053121N3) design to investigate the impact of spiritual care on the spiritual well-being of individuals diagnosed with thalassemia major in the year 2022. The study’s target population comprised patients with thalassemia major seeking treatment at Omid Hospital in Isfahan, Iran. Using convenience sampling, participants were randomly assigned to either a test group or a control group [Figure 1]. The sample size was determined using a test power formula with a 96% confidence interval (CI), with an additional 10% to account for potential dropouts, resulting in a total of 64 individuals (32 in each group). The inclusion criteria encompassed a diagnosis of thalassemia major more than 10 years, adherence to the Muslim Shia faith, age of 18 years or older, adequate sensory capabilities (e.g., no hearing or vision impairments that could hinder participation in audio-visual sessions), proficiency in the Persian language, and no prior involvement in similar studies. The exclusion criteria included death during the spiritual care intervention, and unwillingness to continue participation.

Figure 1.

CONSORT Flow diagram of the clinical trial on spiritual care in patients with thalassemia major

Data collection involved a 7-item questionnaire on demographic characteristics and the Spiritual Well-Being Scale (SWBS). Developed by Raymond Palotzin and Craig Ellison in 1991, the SWBS serves as a comprehensive measure of mental well-being and spiritual QOL. The research paper evaluates the psychometric properties of the Persian adaptation of the SWBS, demonstrating its satisfactory internal consistency with Cronbach’s alpha coefficients ranging from 0.31 to 0.83 across subscales and the overall scale. Test-retest reliability was confirmed with coefficients between 0.10 and 0.89, significant at the p > 0.009 level. Validity was established through concurrent administration with established scales and supported by exploratory and confirmatory factor analyses, which identified 2 distinct factors: religious well-being and existential well-being. Overall, the findings affirm the reliability and validity of the Persian version of the SWBS.[21] The scale comprises 20 statements rated on a 6-point Likert scale, divided into 2 categories of religious health and existential health, each consisting of 10 statements and scored out of 10. The spiritual health assessment in this study involved categorizing expressions as either odd or even, with odd expressions indicating religious health and even expressions indicating existential health. The total spiritual health score was calculated by summing the scores from these 2 subgroups, resulting in a range of 20 to 120. Responses to statements with positive verbs are scored as 6 for “I completely agree” and 1 for “I completely disagree,” while responses to statements with negative verbs are scored as 1 for “I completely agree” and 6 for “I completely disagree.” Certain questions in the questionnaire, specifically numbers 3, 4, 8, 10, 11, 14, 15, 17, 19, and 20, are reverse scored.

The spiritual care program was designed in accordance with Islamic texts, including the Holy Quran, as well as various religious and medical palliative resources. Its primary objective is to enhance patients’ perspectives across 4 fundamental domains: their relationship with God, self, others, and nature. A range of educational methodologies was used, encompassing audio-visual materials, spiritual assignments, and lecture discussions, which were conducted both in-person and online [Table 1].

Table 1.

Delineates the content and objectives associated with each session

	Title	Objectives	Content
Initial session	Initial phase	Familiarizing oneself with group members and altering perspectives	This section will provide an introduction to the members of the group, as well as outline the objectives and content of the program.
Subsequent session	Engagement in dialogue with the divine	Enhancing and fortifying an authentic relationship with the Divine	An elucidation concerning the nature of communication with the divine and the representation of religious texts in this context is warranted.
Third session	Engagement in dialogue with the divine (patience)	Enhancing and fortifying an authentic relationship with the divine necessitates the cultivation of patience.	An examination of the concept of genuine patience reveals its distinction from mere passive tolerance.
Fourth session	Self-communication, self-esteem	Enhancing and fortifying intrapersonal communication while fostering self-esteem	An examination of self-esteem through the lens of psychological theory and research is warranted.
Fifth session	Interaction with others	Enhancing and fortifying interpersonal relationships through the process of forgiveness	Engaging in dialogue with others and articulating appropriate spiritual coping strategies in response to discomfort is essential.
Sixth session	Engagement with the natural environment	Enhancing and reinforcing the relationship with the natural environment	The necessity of being cognizant of the natural environment.

The initial session was designed to assist patients in reinterpreting their understanding of illness to bolster self-esteem. The subsequent session of the group therapy centered on cultivating a profound connection with the divine through communication with God, with an emphasis on hope and trust as pivotal themes. Participants engaged in dialogues concerning the essence of hope, particularly concerning God, which was further supported by prayers that embody this notion. The session introduced the “Prayer related to the time of leaving the house” as a tangible illustration of genuine trust, underscoring the significance of recognizing God’s presence in all endeavors and depending on divine guidance. The discourse examined how anxiety frequently stems from apprehensions about the future, especially concerning oneself and one’s offspring, and posited that nurturing a spiritual outlook and reciting the prayer may alleviate such concerns. Fundamental tenets from the prayer include invoking God’s name, placing faith in Him, and acknowledging His past benevolence, while also recognizing that outcomes are ultimately governed by divine will. Participants were encouraged to fulfill their obligations while relinquishing control over the results, accepting that divine wisdom presides over all circumstances. The session concluded with the distribution of prayer materials to reinforce these teachings, to assist participants in managing their anxieties through a mindset grounded in the remembrance of God, trust in His plan, and acceptance of divine decrees.

The third session focused on the notion of authentic patience, distinguishing it from mere passive tolerance. Participants engage in discussions to articulate their interpretations of patience, which facilitates an examination of its genuine forms, including worshipful and aesthetically pleasing patience, supported by historical examples. The session further explored the beneficial effects of patience on mental health, substantiated by pertinent verses, narrations, and anecdotes. To conclude, participants were introduced to spiritual practices aimed at fostering patience.

Session Four delved into the concept of self-relationship, with a particular emphasis on self-esteem and self-respect from a psychological standpoint. Self-esteem is an individual’s assessment of their worth, which significantly influences their thoughts, emotions, and aspirations. A robust sense of self-esteem serves as a protective factor against anxiety, enabling individuals to navigate external challenges with diminished emotional distress. The session also incorporates a spiritual dimension in self-esteem, which advocates for a focus on the divine to enhance self-respect. A scenario was presented to illustrate how perceptions of others’ reactions can be shaped by one’s self-esteem and interpersonal connections, reinforcing the notion that individuals should maintain a focus on God in all facets of life. This focus was posited as a source of comfort and guidance during challenging times, with God regarded as the ultimate orchestrator of events. Participants were encouraged to engage in prayer for solace and reflection, culminating in the assignment of the prayer for further contemplation.

The fifth session of the program was dedicated to the exploration of interpersonal relationships and the concept of forgiveness. Participants were encouraged to share recent conflicts that had caused them emotional distress. The group engaged in discussions surrounding these issues while simultaneously learning spiritual coping strategies grounded in psychological principles. A narrative attributed to Rumi, which features an elephant, served to illustrate the notion that personal interpretations can diverge from objective reality, thereby, fostering a realistic perspective that is essential for enhancing interpersonal relationships. In addition, references to Imam Ali and Ibn Muljam were made to underscore forgiveness as a noble virtue, positing that the act of forgiving others is ultimately an expression of devotion to the Divine. Participants were invited to use a specific prayer that embodies nonjudgment and altruism, which is particularly beneficial for collaborative group dynamics. As the session concluded, members were informed that the subsequent meeting would mark the final gathering of the program.

On the sixth session, the focus was shifted to the theme of connecting with nature, prompting participants to engage in discussions regarding their observations of children and natural elements encountered during their travels. This dialogue underscored the importance of cultivating awareness of the natural environment. The session incorporated prayers that highlight the significance of acknowledging divine blessings and nurturing a relationship with nature, including prayers for relief from sorrow and blessings for sustenance, while also addressing the processes that food undergoes before it arrives at our tables. These activities are linked to the psychological concept of mindfulness. To conclude the session, participants were assigned the prayer “Allahumma Barak Lana” as a weekly behavioral task, which encouraged them to reflect on their insights, personal development, and strategies for applying their experiences in future contexts.

This program was conducted in a group setting in the educational hall of Omid Hospital. The spiritual care interventions were implemented from July until the end of September. The research included both a control group and a test group, and participants completed demographic questionnaires before the first session. The test group was subdivided by the researcher into 3 groups of 6 individuals and 2 groups of 7 individuals for the intervention. The spiritual care program for the test group consisted of weekly 1-hour sessions over a 6-week period, facilitated by the researcher and a consulting professor. Each session incorporated lectures, discussions, and video content, emphasizing a spiritual cognitive approach with a focus on present-oriented concepts.

At the commencement of each session, participants were invited to engage in a discussion and provide feedback regarding the content and tasks from the preceding session. This approach aimed to evaluate the effectiveness of the material presented on the participants’ learning experience. Key insights from each session were communicated to participants through daily text messages, along with supplementary audio-visual materials shared on approved social media platforms. Following the program, participants completed a spiritual health questionnaire within 2 weeks of the final session. The collected data were analyzed using descriptive statistics [mean, standard deviation (SD), and frequency] and inferential statistics (Chi-square, t-tests, ANOVA, and Pearson’s correlation) via SPSS software (Version 23; IBM Corp., Armonk, NY, USA).

Ethical considerations

This research received approval from the Ethics Committee of Isfahan University of Medical Sciences (IR.MUI.NUREMA.REC.1400.197). This highlights that the study received ethical approval from the university’s Ethics Committee and the necessary authorizations from hospital authorities. Participants were fully informed about the study’s objectives and their rights, including confidentiality and the option to withdraw at any time. Once the study concluded, the control group was also provided with the care plan. Written informed consent was obtained from all participants, ensuring compliance with ethical standards throughout the research process. The rigorous adherence to ethical considerations underscores the commitment to participant welfare and integrity in research practices.

Results

The mean (SD) age of the study participants was 26.95 (9.75) years. The mean (SD) age in the test group was 27.72 (5.62) years, while in the control group, it was 26.19 (4.13) years. The mean (SD) disease duration in the test group was 17.69 (4.97) years, and in the control group, it was 16.13 (3.94) years. An independent t-test indicated that there was no significant difference in the mean age between the two groups (p > 0.05), demonstrating homogeneity in demographic characteristics [Table 2].

Table 2.

Comparison of frequency distribution of demographic characteristics in the test and control groups

Variable	Sub-categories	Test group		Control group		Chi-square test
		Quantity	Percent	Quantity	Percent	χ 2	Df	p
Gender	Female	22	86.75	19	59.37	0.61	1	0.434
	Male	10	31.25	13	40.63
Matrimonial status	Single	28	87.50	30	93.75	0.74	1	0.391
	Married	4	12.50	2	6.25
Educational attainment	Associate degree	25	78.12	22	68.75	0.72	1	0.396

The spiritual health levels of the two groups were similar before the intervention, as presented in Table 3. However, following the provision of spiritual care in the test group, a notable difference in spiritual health levels was observed between the two groups. The test group exhibited higher spiritual health criteria levels, as depicted in Table 4. Before the intervention, there was no significant distinction in the average spiritual health scores between the test and control groups (p = 0.330). Subsequently, the MANCOVA test revealed a significant increase in the mean spiritual health score in the test group compared with the control group after the intervention (p < 0.001).

Table 3.

Comparison of the mean spiritual health scores before the intervention in both the experimental and control groups

Spiritual health	Control group		Test group		Independent t-test
	Mean	Standard deviation	Mean	Standard deviation	t	Df	p
	94.63	18.90	66.28	9.91	0.98	62	0.330

Table 4.

Examining the mean spiritual health score in the experimental group both before and following the intervention

Spiritual health	Before the intervention		After the intervention		Paired t-test
	Mean	Standard deviation	Mean	Standard deviation	t	Df	p
Test group mean	63.94	9.18	76.69	6.39	−7.26	31	<0.001

Discussion

In this research, the impact of spiritual care on the spiritual well-being of individuals diagnosed with thalassemia major was examined for the first time. Before the intervention, no significant differences were noted in demographic characteristics (such as gender, marital status, and educational level) between the study groups (p > 0.05). Consistent with the findings of Babamohamadi et al.,[22] the study groups exhibited similar demographic profiles before the provision of spiritual care.

The present research paper presents a study involving participants predominantly composed of women, with 68.8% in the experimental group and 59.4% in the control group. A significant majority were single, with 87.5% in the experimental group and 93.8% in the control group. Educational attainment showed that 21.9% of the experimental group had a bachelor’s degree or higher, compared with 31.3% in the control group. The mean ages were 27.72 years for the experimental group and 26.19 years in the control group, while the average disease duration was 17.69 years and 16.13 years, respectively. Notably, the average number of hospitalizations was significantly different, with the experimental group averaging 75.75 years and the control group 88.25 years, indicating a lack of equivalence in this aspect. The study clarifies that the reported disease duration corresponds to the time from official diagnosis and treatment initiation at the hospital, not the actual onset of thalassemia, which usually occurs in early childhood. Consequently, the observed older mean age at diagnosis in this research may not accurately reflect the true onset of the disease.

In a study conducted by Taher et al.[23] The sample of adolescents diagnosed with beta-thalassemia major comprised individuals aged between 12 and 18 years, with a marginally greater representation of female participants. In addition, most subjects were pursuing education at the diploma level. Conversely, the study by Jafari et al.,[5] conducted in 2022, revealed that a significant proportion of the participants, specifically 69.1%, were single. In this research, the spiritual health score of the experimental group before the provision of spiritual care was recorded at 63.94, which subsequently increased to 76.69 following the intervention. Conversely, the control group participants exhibited no significant change in their average spiritual health scores after the intervention (66.47) compared with before the intervention (66.28). These findings suggest that the implementation of spiritual care has positively impacted the spiritual health of patients in the experimental group. The present investigation is consistent with the research conducted by Memari et al.[24] in 2016, which explored the effects of spiritual care on the spiritual well-being of elderly residents at the Kahrizak Charity Home. The outcomes revealed that the implementation of spiritual care in the experimental group resulted in enhanced spiritual health among the elderly residents of Kahrizak Charity Home.[24] Similarly, Afrasiabifar et al.[25] explored the influence of spiritual self-care on the hope and spiritual health of cancer patients, finding that spiritual self-care contributed to the enhancement of spiritual well-being in this patient population. The findings of the current study are in line with the results of the aforementioned research.[25] Furthermore, a study by Sun et al.[19] in 2021 investigated the effects of spiritual care on the spiritual and mental health and the QOL of advanced cancer patients. The researchers concluded that a spiritual care program for advanced cancer patients could enhance their spiritual health and overall QOL.[19] The outcomes of this investigation are in line with those of the current study. It is important to note a limitation of this research, which pertains to its focus on a specific religious group. Consequently, the generalizability of the findings to individuals with similar conditions but from diverse religious backgrounds may be limited.

Conclusion

The results of this research indicate that the spiritual care program significantly contributes to the enhancement of the spiritual dimension of health, which encompasses positive interactions with oneself, a higher power, others, and the surrounding environment. Given the critical role of spiritual health in augmenting overall QOL, as evidenced by previous studies, it is imperative to prioritize spirituality in the delivery of holistic nursing care, particularly for patients with chronic illnesses.

Conflicts of interest

Nothing to declare.

Funding Statement

Isfahan University of Medical Science