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Abstract

Introduction: There are specific gaps that call for empirical research in the experiences of spiritual well-being among children 12 years old and younger with cancer. Understanding these relationships can help to develop holistic and family centered care in pediatric oncology wards. This study assessed the spiritual well-being of children with cancer in association with their general well-being, happiness, quality of life, pain intensity, and personal characteristics. Method: The data were collected in Lithuania between June 2020 and November 2021. Children with cancer (N = 81) who were hospitalized at pediatric oncology–hematology centers participated in the study. Inclusion criteria were age (from 5 to 12 years old), diagnosis of oncologic disease for the first time, and absence of other chronic diseases. The instruments used were: Feeling Good, Living Life; Oxford Happiness Questionnaire, Short Form; Well-Being Index; PedsQL™3.0 Cancer Module, and a Wong-Baker FACES® Pain Rating Scale. Results: Communal and personal domains of spiritual well-being had the highest scores among pediatric oncology patients while both dimensions of the transcendental domain scored lowest. Age, level of education, and family composition revealed differences in children's spiritual health, happiness, and well-being, and church attendance was significant for overall spiritual well-being and its transcendental domain on lived experience dimension. Happiness had the strongest effect on all four domains of spiritual well-being. Discussion: Children emphasized the importance of spiritual aspects to feel better to a greater extent than they experienced in their lives. Despite their young age, children were familiar with family traditions, that is, religious practice and church attendance, and followed them in a particular sociocultural context.

Keywords

cancer pediatric health-related quality of life spirituality well-being,nursing care

Introduction

Cancer is an experience that changes the lives of patients, families, and the professionals involved in providing care (Galligan, 2017). For the whole European region, the incidence of pediatric cancer cases exceeded 18,000 in 2020 (European Cancer Information System, n.d.). In 2020, among European Union member states, the incidence of cancer in both sexes between the ages of birth to 14 years old was over 10,000 of which one-third was attributed to leukemia. In Lithuania, pediatric cancer survival rates improved and cancer was the second most common cause of death for those 14 years old and younger in 2020, surpassed only by accidents and external causes of death (Health Information Centre of Institute of Hygiene, 2020).

Many individuals search for their true spiritual selves in times of crisis (Vincensi, 2019), including children with cancer. Most of the challenges children with cancer face included spiritual, religious, and existential issues such as dealing with separation from significant others due to health conditions or subsequent hospitalizations, disease symptoms, changes in self-image and self-concept, hopelessness, intense suffering, fear of the future and anger toward God (Alvarenga et al., 2017). The experiences of pediatric cancer or living with a chronic disease usually led to situations in which children and adolescents experienced spiritual distress. Spiritual distress, as a response to illness, is understood as a lack of inner peace and connectedness to loved ones, grief, and inability to accept what is happening, find meaning in life, and hope for the future (Caldeira et al., 2013; Schultz et al., 2018). Oncology patients in spiritual distress are more likely to request spiritual care (Schultz et al., 2018). Spirituality is a dimension of human functioning (Cervantes & Arczynski, 2015), and its meaning and importance in the lives of healthy children and adolescents have been emphasized for many years. Spirituality is understood as an intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, connectivity, and transcendence (Weathers et al., 2016). Spirituality is expressed in the form of feelings, beliefs, and awareness that begins in childhood and evolves over the lifespan (Garanito & Cury, 2016). The conceptual explanation of children's spirituality and the model of its dynamic development throughout the interaction of constituent dimensions was proposed by Moriarty (2011). Contemporary descriptions of spirituality are associated with quality of life and well-being that include physical, mental, and environmental elements (Juskiene, 2016). This perspective is evident in both secular and religious views of spirituality.

According to Gomez and Fisher (2003), spiritual well-being, as a fundamental dimension of people's overall health and well-being, is the best quantitative indicator of the relationship between spirituality and health. For children with chronic conditions, spirituality, as a relational construct, relies on the importance of connectedness with others for spiritual support (Damsma Bakker et al., 2018). Respectively, spiritual well-being reflects the quality of relationships in four areas, namely with oneself, with others, with nature, and with God. All four types of relationships are interlinked and together determine the person's overall spiritual well-being (Fisher, 2016). In Christian faiths, spiritual well-being forms an essential part of a person's capacity to maintain a quality of life that respects personal needs and expectations (Juskiene, 2016). Thus, spiritual care can provide children with positive strategies to find connectedness, peace, and purpose in difficult situations involving their health (Burkhart & Hogan, 2008; Lima et al., 2013; Walker et al., 2010). Moreover, for religious children or those with religious families, an act of spiritual care will have more meaning if it includes an aspect of religion (Nash et al., 2013).

Several international studies found that spirituality and the perception of spiritual health were important for the positive mental health and well-being of young people, and for their self-perceived overall personal health status (Brooks et al., 2018; Michaelson et al., 2016, 2019). Additionally, personal characteristics, such as gender, age, life experience, health outcomes, and sociocultural contexts, were found to be determinants for the perception of self-rated importance of spiritual health among children and young people (Alvarenga et al., 2017; Michaelson et al., 2021). Recently, Chapman et al. (2021) focused on the cultivation of relational spirituality and interconnectedness between members in school education. The study highlighted the significance of the spiritual core for the integrated formation of the child and the need to apply relational spirituality to the school community and culture.

The experience of cancer in a young person is specific to that person (Nash & Nash, 2015). Increasingly, studies recognize the value of spirituality, spiritual health and spiritual needs of children and adolescents, religious/spiritual practices, spiritual care, and support in pediatric settings and populations (Alvarenga et al., 2017; Clayton-Jones & Haglund, 2016; Cotton et al., 2011; Damsma Bakker et al., 2018; Petersen et al., 2017; Rossato et al., 2021). For children with cancer and other chronic debilitating conditions, religious and spiritual life, supported by intentional compassionate spiritual care, may decrease stress; improve quality of life, overall well-being, and physical and emotional health; and help them to find comfort and cope with illness. Spiritual care allows patients to find and express their uniqueness according to age and developmental stage (Nash & Nash, 2015).

Culture and dominating faith practices also influence spiritual expression in children and adolescents. Lithuania has a complex and difficult history regarding spirituality and religion which has included discouragement and suppression of faith, humiliation of believers, and even repression and punishment during Soviet occupation (Juskiene, 2016; Riklikiene et al., 2016; Riklikiene, Karosas & Kaseliene, 2018; Soskovets et al., 2016). The dominant Roman Catholic faith was considered a threat to the State and a national symbol since it played a prominent role in resisting the Soviet regime and communist atheistic propaganda (Alisauskiene & Zilys, 2021; Streikus, 2006). After such a painful experience lasting more than three decades, Lithuanians have been reviving their relationships with religion and spirituality and rebuilding their own faith identity.

A tremendous amount of work still needs to be done as research about sick children’s spiritual care and important health outcomes is scarce compared with similar data about adult cancer patients or even adolescents (Damsma Bakker et al., 2018; Petersen et al., 2017). Specific gaps that call for empirical research among children with cancer (under the age of 12) exist in their experiences of spiritual well-being, overall and by domain, and the interconnections of spiritual well-being with other value-based orientations, that is, feeling of happiness, general well-being, quality of life, and physical pain. Understanding such relationships can help healthcare professionals to develop holistic and family centered interventions to improve outcomes of care in pediatric oncology wards. For family members, who do not always share spiritual beliefs with their children (Livingston et al., 2020), the results of this study will raise awareness of the perception and lived experience of spiritual well-being of sick children.

The purpose of this study was to assess the spiritual well-being of children with cancer in association with their well-being, happiness, quality of life, pain intensity, and personal characteristics.

Method

Design

A cross-sectional quantitative study design was used. The data on spiritual well-being of children were collected in Lithuania between June 2020 and November 2021.

Sample

Children with cancer (medical diagnosis of oncology illness at nonterminal phase) who were hospitalized at the pediatric oncology–hematology centers of two tertiary-level university hospitals participated in the study. Inclusion criteria were age (from 5 to 12 years old), diagnosis of oncologic disease for the first time, and absence of other chronic diseases. Patients undergoing palliative and end of life care were excluded.

In total, 81 pediatric patients participated in the study. All were admitted to the hospital for clinical treatment with the most common oncologic diagnoses (i.e., acute lymphoblastic or myeloblastic leukemia, Hodgkin's and non-Hodgkin's lymphomas, tumors of the central nervous system).

A structured quantitative survey was conducted taking into account the very young age of the respondents. Children were surveyed face-to-face by two researchers who were pediatric nurses from different pediatric oncology–hematology centers. Nurse managers directed the researchers to patients that met the inclusion criteria (e.g., according to age and health status).

Instruments

Four instruments were used for data collection. Feeling Good, Living Life (FGLL) is a junior spiritual well-being questionnaire that was developed with 5- to 12-year-olds (Fisher, 2004). “Feeling Good (FG)” yields the “ideal” score for spiritual well-being, whereas “Living Life (LL)” as its name suggests yields the “lived experience” score. The items on the FGLL are scored from 1 (no) to 5 (yes). The language of the junior version is simpler, thus more relevant to younger children.

The level of children's personal happiness was assessed by using a single-scale measure, the Oxford Happiness Questionnaire, Short Form (Hills & Argyle, 2002). The short version uses eight items that are assessed with a 6-point scale where 1 = strongly disagree and 6 = strongly agree, with a possible range of 8 to 48. In this study, Cronbach's alpha for the OHQ Short version was very good (ɑ = .948). Different items correlated with a total scale from 0.641 to 0.904, and interitem correlations ranged from 0.483 to 0.874.

The five-item World Health Organization Well-Being Index (WHO-5) is a short and generic global rating scale. Each of the five items is rated on a 6-point Likert scale from 5 (all the time) to 0 (none of the time). A raw score is calculated by totaling the scores and therefore theoretically ranges from 0 to 25, where 0 represents the absence of well-being and 25 represents maximal well-being. To translate to a percentage scale ranging from 0 to 100, the raw score is multiplied by 4. A percentage score of 0 represents the worst. possible, whereas a score of 100 represents the best possible quality of life. A cut-off <13 (or <50%) indicates poor well-being (Bech, 2004). At present, the WHO-5 has been translated into over 30 languages, including Lithuanian (Topp et al., 2015; World Health Organization, 1999). In this study, the internal consistency for this tool was very good (ɑ = .947). Items correlated with the total scale in the range of 0.821 to 0.887 and interitem correlations varied from 0.736 to 0.842.

Two Lithuanian versions of PedsQL™3.0 Cancer Module were used to measure the quality of life of study participants (Varni, 2005). The Child and Parent Reports for Young Children (ages 5–7) and The Child and Parent Reports for Children (ages 8–12) are generic health status measures comprised of 8 dimensions. For analysis, raw scores were transformed from 0–4 to 0–100 points where higher scores indicated fewer problems and better functioning and well-being. In this study Cronbach's alpha for the Pediatric Quality of Life Inventory™ was good (ɑ = .854) and item-total correlation ranged from 0.418 to 0.699.

To assess the intensity of physical pain as described by children, a Wong-Baker FACES® Pain Rating Scale (FACES Scale) ranging from 0 (no hurt) to 10 (hurts most) was applied (Wong-Baker Faces Foundation, 2020).

Ethical Considerations

Ethical permission was granted by the Committee on Bioethics of the Kaunas region (12 July 2019; No. BE-2-6). Before inviting children into a survey, researchers spoke with families to determine whether the children would be available to talk about their spiritual lives. In addition, children were subsequently consulted about their own desires to participate in the study. Informed consent was signed by parents while the children were included in age-appropriate discussions about the study and provided their verbal consent.

Statistical Data Analysis

Analyses were performed using the statistical software package IBM SPSS Version 20 (IBM Corp., IBM SPSS Statistics, Armonk, NY, USA). Descriptive statistics, namely percentage, mean, standard deviation, median, minimum, and maximum scores were calculated to examine sociodemographic data and study variables. Since variables were considered to lack normal distribution, nonparametric tests were used for comparative analysis. To analyze means the Independent samples t test and one-way analysis of variance with the Bonferroni post hoc test were used. Paired samples Wilcoxon signed ranks test was applied to compare spiritual dimensions’ mean scores between the FG and LL sections. The relationship between study variables was evaluated using correlation (Spearman's rho) analysis. Next, linear regression analysis with the backward method was applied to test the hypothesis on the importance of sociodemographics and study variables (well-being, happiness, quality of life, and pain intensity) to the spiritual well-being of children with cancer. The adequacy of the study sample size for multiple regression analysis was examined: sample size per parameter estimate ratio is over 11 in this study and thus complies with the suggested criteria (Harrell, 2001).

A p-value of .05 or less was used to define statistical significance for all analyses. The internal consistency was assessed by Cronbach's alpha (α) and values that exceeded .6 were acceptable (Bland & Altman, 1997). For absolute values of the correlation coefficient, r ≤ .39 was regarded as a weak correlation, between .40 and .69 as a moderate correlation, between .70 and .99 as strong, and 1.0 as perfect (Dancey & Reidy, 2006 as cited in Akoglu, 2018).

Results

In total, 81 children with oncologic diagnoses participated in this study. Participants were from 5 to 12 years old (M age was 8.74, SD –2.49) and 61.7% were living in urban locations. The majority (85.2%) attended school from preschool to sixth grade. In relation to birth order and family status, almost two-thirds were the eldest child in the family and lived with both parents. Attendance in church (predominantly Catholic) was prevalent among 53.1% of participants (Table 1). Those participants or their families who identified themselves with faith were Christians (Catholics or Orthodox).

Table 1

Sociodemographic Characteristics of the Respondents (N = 81)

Variables	n	%
Age in groups
5–8 years	39	48.1
9–12 years	42	61.9
Gender
Female	38	46.9
Male	43	53.1
Place of residence
Urban	50	61.7
Rural	31	38.3
Education
Preschool	11	13.6
Primary (one to four grades)	29	35.8
Five to seven grades	29	35.8
Do not attend yet	12	14.8
Birth order in a family
First	57	70.4
Second	18	22.2
Third and higher	6	7.4
Do parents live together?
Yes	59	72.8
No	22	27.2
Do you attend church?
Often	11	13.6
Sometimes	32	39.5
Never	38	46.9
Age in years: M (SD); Mdn; range	8.74 (2.49); 9.00; 5–12

Spiritual Well-Being of Respondents

Communal and Personal domains of spiritual well-being, both FG and LL dimensions, had the highest scores. Transcendental domains in both dimensions were assessed by children with the lowest scores. The results also revealed that the total score of the LL dimension was significantly lower than the FG score (Table 2).

Table 2

Summary Statistics for Feeling Good and Living Life Dimensions of Spiritual Well-Being (N = 81)

Domain	Feeling good				Living life				p ^a
Domain	M	SD	Mdn	Range	M	SD	Mdn	Range	p ^a
Personal	18.0	3.1	20	8–20	16.0	4.0	17	6–20	<.001
Communal	18.7	2.4	20	8–20	17.6	3.0	18	6–20	<.001
Environmental	17.0	3.6	18	4–20	14.2	4.7	15	4–20	<.001
Transcendental	14.7	4.7	16	4–20	11.9	5.4	12	4–20	<.001
Overall	68.34	11.6	72	32–80	59.70	14.5	62	28–80	<.001

Note. ^a

Wilcoxon signed ranks test.

The LL dimension was analyzed in relation to the sociodemographic characteristics of respondents. A comparison of two age groups revealed that younger children (5–8 years old) scored three domains and the overall LL dimension higher than older children (9–12 years old), except for the transcendental domain where no significant difference was found. The results also showed that children who lived with both parents scored items on personal, communal, and transcendental domains as well as the overall LL section significantly higher than children who lived with only one parent, that is, a mother in all cases. Finally, children attending church often or sometimes assessed their spiritual well-being on the transcendental domain, as well as overall LL, higher than those who never attended (Table 3).

Table 3

Comparison of Four Domains of Living Life Dimension of Spiritual Well-Being, Happiness and Well-Being of Respondents in Relation to Their Sociodemographic Characteristics (N = 81)

Variables	Spiritual well-being					Happiness	Well-being
	Personal	Communal	Environm.	Transcend.	Overall
			M (SD)
Age in groups by years
5–8	18.2 (2.7)	18.4 (2.5)	16.0 (4.2)	12.8 (5.1)	65.5 (11.5)	4.6 (1.1)	68.2 (23.2)
9–12	14.0 (4.0)	16.9 (3.3)	12.4 (4.5)	11.0 (5.6)	54.4 (15.0)	3.2 (1.4)	48.1 (23.1)
p (Mann–Whitney U test)	<.001	.015	<.001	.117	<.001	<.001	<.001
Do parents live together?
Yes	16.7 (3.7)	18.2 (2.7)	14.7 (4.6)	12.8 (5.4)	62.4 (13.4)	4.1 (1.5)	62.8 (24.0)
No	14.1 (4.2)	16.0 (3.4)	12.6 (4.8)	9.5 (4.7)	52.4 (15.0)	3.4 (1.3)	44.8 (23.7)
p (Mann–Whitney U test)	.011	.004	.084	.017	.008	.034	.007
Attendance of church
Often	17.0 (5.2)	18.7 (2.1)	15.6 (5.4)	16.3 (4.9)^a	67.5 (15.9)^a	3.6 (1.4)	52.8 (25.7)
Sometimes	16.5 (3.3)	18.0 (2.8)	14.7 (4.6)	14.3 (4.8)^a	63.4 (13.6)^a	4.2 (1.4)	61.2 (25.9)
Never	15.3 (4.1)	17.0 (3.4)	13.3 (4.6)	8.6 (4.0)	54.3 (13.0)	4.2 (1.5)	65.6 (17.8)
p (Kruskal–Wallis test)	.217	.164	.184	<.001	.002	.157	.311
Education level
Preschool/do not attend yet	19.1 (1.7)	19.1 (1.5)	16.8 (4.4)	13.1 (5.5)	68.1 (10.2)	5.0 (0.9)	80.2 (17.4)
One to four grades	15.6 (3.5)^b	16.7 (3.6)^b	13.8 (4.2)^b	11.4 (4.9)	57.6 (14.4)^b	3.8 (1.5)^b,c	51.8 (20.1)^b
Five to seven grades	13.9 (4.3)^b	17.4 (2.9)^b	12.4 (4.7)^b	11.4 (5.9)	55.2 (15.0)^b	3.1 (1.3)^b	46.4 (23.9)^b
p (Kruskal–Wallis test)	<.001	.014	.002	.435	.005	<.001	<.001

Note. environm. = environmental; transcend. = transcendental.

^aComparing with Never attend church group; ^bComparing with Preschool/Do not attend yet group; ^cComparing with five to seven grades group.

Similarly to the previous age differences, data analysis on education revealed that preschool children, and those who did not attend school yet, scored their overall spiritual well-being of the LL dimension, and by domains (personal, communal, and environmental), higher than children in primary school (one to four grades) or five and six grades. Gender, place of residence, and birth order showed no significant difference in children's ratings of the LL dimension.

Happiness

An analysis of happiness revealed that the largest percentage of children (24.7%) was very happy (i.e., their score was 5–6 in accordance with the recommendations on this scale calculation and interpretation) and 9.9% were unhappy with the lowest score of 1–2. Others were too happy (6.2%), rather happy (16.0%), moderately unhappy (3.6%), and not particularly happy or somewhat unhappy (respectively, 19.8% at each level). Age, level of education, and status of the family revealed differences in children's happiness. Children from 9 to 12 years old and those who lived with both parents were happier compared to children from 5 to 8 years old and those who lived with a single parent. In addition, children at the lowest level or with no education were happier than children in one to four grades and five to seven grades (p < .001); and children in one to four grades were happier than those in five to seven grades (p = .045; Table 3). The age of children negatively correlated with happiness to a moderate extent (r = −.592, p < .001; Table 4).

Table 4.

Correlation of Four Domains of Living Life Dimension of Spiritual Well-Being With Age of Respondents and Study Measures.

Variables	Spiritual well-being: living life dimension					Study measures
Variables	Personal	Communal	Environm.	Transcend.	Overall	Happiness	Well-being	Quality of life
Age	−0.571***	−0.304**	−0.429***	−0.218	−0.418***	−0.592***	−0.548***	−0.479***
Church attendance	0.186	0.213	0.205	0.576***	0.395***	0.211	0.178	0.179
Pain intensity	−0.207	−0.222*	−0.152	−0.093	−0.176	−0.264**	−0.363***	−0.154
Happiness	0.656***	0.501***	0.525***	0.501***	0.636***	1	0.809***	0,630***
Well-being	0.552***	0.403***	0.321**	0.380***	0.461***		1	0.664***
Quality of life	0.631***	0.534***	0.485***	0.473***	0.594***			1

Note. environm. = environmental; transcend. = transcendental.

*p < .05, **p < .01, ***p < .001.

Well-Being

About a third (N = 33) of children indicated poor well-being with another 48 children (59.3%) having a score over the cut-off <50%. The M score for the WHO-5 scale was 2.67 points (SD 1.43, Mdn 3.0, min 0, max 5) or 53.48% (SD 25.1, median 60.0, min 8, max 100). Children with cancer living with both parents rated their well-being significantly higher than those with only one parent. Well-being scores of younger (5–8 years old) children were higher than those of older children (9–12 years old; p < .001). Accordingly, preschool children and those not yet attending a school rated their well-being higher than those who attended school (Table 3). Age (r = −.548, p < .001) and pain intensity (r = −.363, p < .001) had negative relationships with the well-being of children.

Quality of Life

Children reported the lowest scores in the procedural anxiety (M 24.4, SD 25.5) and it differed strongly from all other dimensions of the quality of life. Children's quality of life was limited the least by nausea (60.9 points), cognitive difficulties (61.3 points) and pain (58.5 points).

Children who lived with both parents, compared to those who lived with only one parent, had fewer problems related to the following aspects of quality of life: nausea (U=371.5, p=.003), fear of procedures (U=428, p=.016), treatment fear (U=344, p=.001), anxiety (U=360.5, p=.002), cognitive difficulties (U=345, p=.001) and appearance U=417, p=.013 ). Also, children who attended church frequently experienced fewer problems with fear of treatment than those who attended church sometimes or never (U=228, p=.029; data not shown).

Pain Intensity

In communicating about their pain, children rated it as no hurt or hurt a little bit.

For children with cancer, spiritual well-being in the LL dimension correlated significantly, although to varying extents, with age, frequency of church attendance, happiness, well-being, quality of life, and pain intensity. The strongest relationship was between spiritual well-being, overall and in domains, with happiness. General well-being was moderately related to the personal domain of spiritual well-being (r = .552, p < .001). The associations between quality of life and spiritual well-being domains were significantly moderate as well. Meanwhile, personal, communal, and environmental domains of spiritual well-being were negatively associated with children's ages (Table 4).

Interrelationships among other study variables (happiness, well-being, quality of life, and pain intensity) were also analyzed. Noteworthy were a strong positive direct association (r = .809, p < .001) between well-being and happiness and a moderate association (r = .664, p < .001) between well-being and quality of life of children. Significant negative correlations of pain intensity with happiness and well-being were weak. Quality of life and happiness were related significantly moderately (Table 4).

Further linear regression models were completed with six independent variables for each of the two sections of spiritual well-being. Variables of age, church attendance, together with happiness, well-being, quality of life, and pain intensity were used for regression models as the univariate analysis showed significant correlations between these variables and spiritual well-being. A backward linear regression analysis was performed at each step gradually eliminating variables from the regression model to find a reduced model that best explained the data. The results revealed that happiness and church attendance were the main predictors for children's perceptions of the importance of spiritual health in the FG domain, together with pain intensity explaining 45% of the variance. Happiness and church attendance also had the strongest effect on the lived experience of spiritual health: together with pain intensity, it explained 48% of the variance (Table 5).

Table 5

Backward Multiple Regression Analysis (First and Last Steps) of the Sociodemographic Characteristics and Study Measures Affecting the Perception of Importance and the Lived Experience of SWB in Children With Cancer

Predictors for SWB_ feeling good	Beta	t	p	R ²	Predictors for SWB_ living life	Beta	t	p	R ²
First step					First step
Well-being	0.201	1.262	.211	0.446	Well-being	0.104	0.675	.502	0.482
Happiness	0.170	0.981	.330		Happiness	0.283	1.696	.094
Pain intensity	−0.150	−1.367	.106		Pain intensity	−0.152	−1.713	.091
Quality of life	0.035	0.337	.737		Quality of Life	0.111	1.105	.273
Church attendance	0.417	4.373	<.001		Church attendance	0.322	3.491	.001
Age	−0.088	−0.724	.471		Age	−0.154	−1.309	.195
Last step					Last step
Happiness	0.404	4.357	<.001	0.449	Happiness	0.511	5.673	<.001	0.480
Church attendance	0.393	4.338	<.001		Church attendance	0.300	3.410	.001
Pain intensity	−0.172	−1.947	.055		Pain intensity	−0.159	−1.857	.068

Note. SWB=spiritual well-being; Beta=standardized regression coefficient. Dependent variables—spiritual well-being in feeling good and living life dimensions.

After adding two more independent variables (birth order and family structure) into linear regression models, the authors analyzed the predictions for each of the four spiritual well-being domains. The results showed that happiness remained the strongest predictor for spiritual well-being in its personal, communal, and environmental domains. Age was another significant predictor for the personal domain while pain intensity and both parents living together had the strongest effect on the communal domain. For the transcendental domain, church attendance had the strongest effect on children's lived experiences of spiritual well-being and, together with happiness, explained 50% of the variance (Table 6).

Table 6

Backward Multiple Regression Analysis (Last Step) of the Sociodemographic Characteristics and Study Measures Affecting the Living Life Spiritual Well-Being by Domains in Children With Cancer

Dependent variable	Predictors	Beta	t	p
Personal domain	Happiness	0.417	3.726	<.001
(R²= .460)	Age	−0.255	−2.369	.021
	Do parents live together (yes/no)	−0.151	−1.695	.094
	Pain intensity	−0.150	−1.704	.093
Communal domain	Happiness	0.376	3.742	<.001
(R²= .316)	Pain intensity	−0.248	−2.500	.015
	Do parents live together (yes/no)	−0.215	−2.152	.035
Environmental domain	Happiness	0.478	4.707	<.001
(R²= .252)	Birth order in a family (first/second/third and higher)	−0.185	−1.826	.072
Transcendental domain	Church attendance (yes/sometimes/never)	0.537	6.187	<.001
(R²= .493)	Happiness	0.332	3.827	<.001

Note. Beta=standardized regression coefficient.

Discussion

The religious/spiritual dimension of a person is often disregarded in healthcare settings as being ambiguous and unfamiliar (McSherry & Cash, 2004; McSherry & Smith, 2007; Sessanna et al., 2007) and not fitting well in the usual rational medical paradigm of care (Büssing et al., 2018; Rumbold, 2003). Cancer extends beyond primary treatment, affecting all aspects of an individual's life and coping (Miller et al., 2016). Spiritual concerns in children with cancer require unique and particular attention as these individuals are more vulnerable being at the early stage of their development, having limited life and spiritual experience and emerging social relationships. Consistent with the literature that age and developmental stage may have a direct effect on the interpretation of children's experiences and expressions of spiritual awareness and positive or negative spiritual coping (Alvarenga et al., 2017; McSherry & Smith, 2007; Nash & Nash, 2015; Reynolds et al., 2013), this study's results confirmed the association of age with spiritual health, happiness, quality of life, and well-being. In a healthy population, the self-rated importance of spiritual health, both overall and within most questions and domains, also declines as young people grow and develop (Michaelson et al., 2016). This declining pattern persisted for both genders and was most notable for the connections with nature and with the transcendent.

There is no consistent data in the scientific literature about children's spiritual experiences in relation to gender. Similar to Moore et al. (2020), this study did not reveal any differences between boys and girls. Other studies, however, reported that women use spirituality differently than adolescent men. For example, girls had a significantly higher overall spirituality score than boys and were more self-aware and collectively conscious (Mirkovic et al., 2021).

Similar to the adult cancer population (Riklikiene, Kaseliene & Fisher, 2018), findings from this study demonstrated that the imagination of an ideal state of spiritual well-being in children was reliably detached from their expressed reality, that is, lived experience. Children emphasized the importance of spiritual aspects to feel good to a greater extent than they experienced in their lives. It is imperative to acknowledge the diversity of children's spiritual experiences and constantly assess the spiritual state and spiritual worries of ill children trying to better understand and meet their expectations and hidden inner desires.

The literature on pediatric patient care highlights the importance of relationships and communication for a child's spirituality (Damsma Bakker et al., 2018). This study reinforces the need for using effective strategies in creating and developing relationships between children with cancer and others, especially during a hospital or home stay, when the feeling of separation and loneliness may increase, as revealed by the communal domain of spiritual well-being in both sections having higher scores than in the other three domains. This result was in keeping with the advice of the author of the questionnaire to analyze interrelationships between all four domains and whether each is equally important to children (Fisher, 2011). Parents, siblings, friends, and even pets were important for sick children in the hospital to “simply [be] there for support and love” (Harris, 2021). Also, the presence of others with a similar plight and peer support created the notion of belonging which nurtured the individual's spirituality (Nash et al., 2013).

Fisher (2013) found that a relationship with a higher power plays an integral role in spiritual well-being. Kamper et al. (2010) also reported that most pediatric cancer patients indicated wanting to feel close to God and praying to God for help (Kamper et al., 2010). Other studies explored the spiritual needs of hospitalized children and adolescents with chronic illnesses and confirmed the need for expression of faith and religious practices (Alvarenga et al., 2021) as transcendental relationships are crucial in supporting children's journeys in their illnesses (Clayton-Jones et al., 2016). Despite the young age of children, they were familiar with family traditions and followed them in a particular sociocultural context. Even though the transcendental domain of spiritual well-being was rated lowest, religious practice, indicated by church attendance, revealed a significant effect on children's spiritual well-being in this study. The literature shows that prayers are the most widely used practices that improve the well-being and the physical and emotional health of children with cancer. Prayer along with other routines of spiritual comfort (visiting nature, interacting with pets, and making art and music) should be recognized as an important resource in coping with illness in children (Rossato et al., 2021). Religious people have higher spiritual well-being because they regularly attend religious services and build social networks in their congregations (Lim & Putnam, 2010).

The second domain of the FGLL instrument asks about family, as these were shown to be the most important “other people” in the development of the instrument (Fisher, 2015). A significant variable important for an ill child's spiritual life experience is family composition. A previous study on parents’ behavior changes during their children's cancer treatments showed that partnered and single parents survive caregiving stress differently. The relationship with friends and the quality of parents’ relationships with the ill child's siblings were more negatively affected by lone parents than by couples (Wiener et al., 2016). This study also showed differences in children's spiritual well-being, happiness, and general well-being depending on whether they lived with both parents or a single parent. This is an important aspect in the context of spiritual care provision for children with cancer and support for their families. The environmental domain of spiritual well-being was the only one not affected by family composition possibly because relationships with surroundings form under conditions such as hospitalization, comfort at home, personality traits, and interests, but not from parents’ marital status.

Happiness was assessed as the emotional or mental well-being of pediatric oncology patients and a quarter of them reported being very happy. The happiness of children is well-suited to research because they can identify and use emotions in complex social environments (Schultz et al., 2004). Studies about children's happiness confirmed the association between happiness and temperament (Holder & Klassen, 2009), and social relationships (Holder & Coleman, 2007). When communal spiritual well-being is strong among pediatric patients with cancer, this can stimulate cumulative effects for desired health and wellness outcomes in ill children. However, results regarding the association between children's happiness and church attendance were not consistent. Church attendance was not related to the happiness of children in Holder et al. (2008), the same as in our study. Further studies should be conducted to verify more fully the links between happiness and other characteristics, to confirm its effect on pediatric cancer patients’ spiritual well-being and spiritual support, and to assess programs to enhance happiness in children like that explored among adults (Seligman et al., 2005).

Limited numbers of international studies provide evidence about the relationship between spiritual well-being and other health outcomes in children with cancer. Findings from this study demonstrated that such relationships exist, and spiritual well-being is related to children's happiness (emotional well-being), general well-being, and quality of life. Pain intensity, on the other hand, had only a weak influence on children's spiritual relationships with others in the communal domain.

Happiness had the strongest effect in relation to other measures in this study on all four domains of the spiritual well-being scale. During the last few decades, there has been a growing interest in positive psychology, especially concerning subjective well-being or happiness. Studies show that happiness can be affected by both personal and external factors (Lukoševičiūtė et al., 2022). The relationship between happiness and health is developing rapidly, exploring the possibility that impaired happiness is not only a consequence of illness and health but also a potential risk factor (Steptoe, 2019). Children with cancer, especially when hospitalized, often miss out on important opportunities to “just be a kid” (Neville et al., 2019) as their well-being is diminished by decreased activity and passive leisure (Holder et al., 2009).

This study revealed strong interconnections between happiness and general well-being. These findings are consistent with the evidence that failure to meet spiritual concerns and maintain spiritual well-being leads to a negative impact on children's coping and overall health (Damsma Bakker et al., 2018). Spiritual health and its domains among healthy adolescents relate strongly and consistently with self-perceived personal health status (Michaelson et al., 2016) suggesting that spiritual health appears to operate as a protective health asset and is significantly shaped by external relationships and connections (Brooks et al., 2018). In the hospital setting, multiple contacts when nurturing spiritual well-being for children with oncological disease facilitate the art of spiritual care and holistic well-being of these patients.

Practice Implications

To facilitate the art of spiritual care in a pediatric ward, nurses need to recognize the importance of the spiritual dimension of a child in both secular and religious contexts and to understand the possible expressions of spiritual beliefs across childhood (McSherry & Smith, 2007). In addition, pediatric nurses must be aware, sensitive, and competent to identify the spiritual needs of the pediatric population, carry out interventions and evaluate outcomes regarding spiritual care (Alvarenga et al., 2017; Nascimento et al., 2010; Petersen et al., 2017). Interdisciplinary training about the spiritual care of children and their families should be required for healthcare professionals together with the promotion of a culture of spiritual support for pediatric patients within the healthcare organization (Parkinson et al., 2020). Finally, nurses and other health professionals have to understand the role of chaplains and fully integrate them into the clinical team that provides care for pediatric oncology patients (Lion et al., 2019).

Limitations of the study include a lack of comprehensive comparison of these study results on self-reported spiritual well-being and associated factors with similar cohorts of healthy children or pediatric patient groups, since such evidence is very limited. Data collection by face-to-face survey with the distanced presence of parents may have been a limitation as children may not have answered honestly about spiritual desires and intimate concerns which are very personal questions, sometimes tricky, and may not have been well understood by small children. Responses may have been slightly distorted, or children may not have responded at all. The type of cancer and treatment received by study participants was not considered, making a comparison between similar disease groups impossible. In addition, all study instruments were developed in a different culture and translated for use in Lithuania. Culture and faith traditions may change the perception of spiritual matters and these differences could affect results obtained from the study instrument in different countries.

A specific limitation may involve the Oxford Happiness Questionnaire. The psychometric analyses indicated that the OHQ is reliable enough to use with sick children although this test has been challenged in terms of not being based on theory and definition, and measuring several factors related to well-being in addition to happiness (Kashdan, 2004). Future studies should rely on multiple measures and not base conclusions on the assumptions of any single measure of happiness.

Footnotes

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) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Erika Juškauskienė

John Fisher

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Sherman-Bien

Zadeh

Farkas-Patenaude

Pao

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Spiritual Well-Being and Related Factors in Children With Cancer

Abstract

Keywords

Introduction

Method

Design

Sample

Instruments

Ethical Considerations

Statistical Data Analysis

Results

Spiritual Well-Being of Respondents

Happiness

Well-Being

Quality of Life

Pain Intensity

Discussion

Practice Implications

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iDs

References