The Hospitalisation Experience and Distress Among Jewish and Bedouin Parents of Hospitalised Children in Israel

ABSTRACT

Aim

This study tested the relationship between the hospitalisation experience and distress among Jewish and Bedouin parents of hospitalised children in the south of Israel.

Methods

An anonymous self‐reported questionnaire containing the Distress Thermometer for Parents and the Parental Perceptions of Hospital Care in Children was completed by 210 parents of hospitalised children.

Results

About 68.3% of all the parents experienced parental distress, but the Bedouin parents were significantly more distressed than the Jewish parents. No difference was found between Jewish and Bedouin parents in their experience during their child's hospitalisation. Most parents (96.6%) had a positive experience. A negative correlation was found between the parents' experience and the parents' distress.

Conclusion

This finding can help improve the medical center's approach to hospitalised children by focusing on their parents' experience and encouraging the medical staff and family to support the parents. This may lower parents' distress and enable a better quality of care for the children and their families.

Abbreviations

DTP

Distress Thermometer for Parents

PP

Parental Perceptions of Hospital Care in Children

Summary.

• Both Jewish and Bedouin parents were distressed due to their child's hospitalisation, but the Bedouin parents were significantly more distressed.

• No difference was found between the experiences of Jewish and Bedouin parents during their child's hospitalisation.

• There is an inverse correlation between distress and the parental experience of a hospitalised child: The more positive the parents' experience, the lower their distress.

1. Introduction

Hospitalisation of a child affects the whole family. Parents especially have cause for psychological distress due to their child's illness and appearance, the medical treatment, and their role as their child's primary caregivers [1, 2, 3, 4, 5]. Since parental distress can negatively affect the child's ability to cope with pain [6, 7], the separation of other family members, the unknown environment, and unusual noises supporting parents' needs during their child's hospitalisation may therefore improve the child's clinical outcomes. Moreover, such support can increase parents' ability to participate in hospital care and decrease their distress [7, 8]. Patient‐ and family‐centered care is an approach to medical treatment based on a partnership between the child, their parents, and the health care staff, where family, culture, and tradition are respected and considered in addition to the medical aspects. Such an approach can relieve distress and help focus on treatment [9, 10].

This study examined the relationship between parents' experience during the hospitalisation of their child and their distress in the unique populations in the south of Israel (the Negev). This geographical region consists mostly of the Jewish population (approximately 70% of the Negev population) [11], and Bedouin tribes (268 867 people, 20% of the population), which constitute a minority group within the Arab population (14% of all Arabs). Bedouins have their specific culture and social norms [12]. About half of them live in unrecognised villages where they do not pay local taxes, have no local government, where construction is illegal with no building permits, and where they do not receive services such as water, electricity, and roads. The Bedouin population is characterised by complex morbidity and proliferation of diseases due to the nature of the culture, marriage among relatives, the proliferation of hereditary diseases, and environmental factors, such as low parental education and low socioeconomic status. However, all Israeli citizens receive universal coverage of the health care system. Despite the attempts of government ministries, there is still inequality in the health services provided to the non‐tax paying Bedouin minority compared to the Jewish majority [13].

The objective of the study was to assess the association between the hospitalisation experience and distress among parents of hospitalised children in southern Israel, and to examine how this is affected by cultural affiliation.

2. Methods

2.1. Design and Sample

This was a cross‐sectional correlation study, using a convenience sample. An anonymous self‐reporting questionnaire was distributed to and collected from parents of hospitalised children, during the months of February to June 2020. Data was collected by the primary investigator and ward staff. The sample size was calculated using the UCSF sample size calculators software from the Clinical and Translational Sciences Institute. A correlation sample size was calculated that corresponded to the calculation using one group of subjects. According to α (two‐tailed) of 0.05, β of 0.2 and r of 0.2, the minimum necessary total sample size was calculated to be 194 (Hulley et al., 2013).

2.2. Study Tools

The questionnaire distributed to parents consisted of three parts:

2.2.1. Sociodemographic Questions

Distress Thermometer for Parents (DTP) is a questionnaire that measures parental distress. This instrument was originally created for adult cancer patients and has undergone modification and adjustments for parents of chronically ill children [14]. In the first part of the tool, participants mark their general distress on a ‘distress thermometer’ between 0 (no distress) and 10 (highest distress), where a score of 4 or higher indicates parental distress. This was validated using the ROC curve, which correctly identified 86% of clinically confirmed cases (p < 0.001). In the second part of the tool, participants answered yes/no questions on different distress issues on a total of 42 items. This second part of the tool demonstrates good consistency and internal validity of Cronbach's α ≥ 0.9 (Haverman et al., 2013). For the current study, permission was obtained from the author to use the Tool and adjust for our population of parents of hospitalized children. Originally, the tool was developed in English; therefore, translations to Hebrew and Arabic were carried out using the back‐translated method with the help of bilingual medical staff. We removed seven irrelevant items from our research. These items focused on different aspects of caring for a child with a chronic illness. A total of 35 questions were left in the questionnaire. DTP Cronbach α was 0.84 in the pilot study (described below).

Parental Perceptions of Hospital Care in Children (PP) developed by Ince et al. [15] measures the experience of parents of hospitalized children, specifically comparing parents who are suspected of abusive behaviour towards their child compared to those not under suspicion. In the published study, there is no data on the questionnaire's strength. Permission was given for using the questionnaire for research purposes. The questionnaire has 5 questions on a Likert scale with 5 scores from 1 (do not agree at all) to 5 (completely agree), where a total score above 12 indicates a positive experience. This tool was originally in English; therefore, translations to Hebrew and Arabic were performed by the back‐translate method with the help of bilingual medical staff. The original study did not provide any quantitative validation.

2.3. Pilot Study

As a first step, a pilot study was carried out by sampling 30 questionnaires from the month of February 2020 which were not included in the final data analysis. The pilot study was conducted to check for the clarity of the translations and the reliability of the questionnaire.

DTP Cronbach's α was 0.84 and PP Cronbach's α was 0.67. After collecting the full data of the study, DTP questionnaire showed a Cronbach's α of 0.88 and the PP questionnaire showed a Cronbach's α of 0.59. Since the latter score was less than 0.6, the PP questionnaire was adapted by eliminating question 5 (‘Do you feel that your child's diagnosis/reason for Hospitalization has affected the way you are treated by hospital staff?’) which was not suitable for the populations and culture in Israel. After recalculating Cronbach's α of the PP questionnaire, the result was 0.82. All the analyses were performed using the SPSS program. Accordingly, the PP range of possible scores was adjusted to be between 4 and 20 points.

2.4. Data Collection

Study participants were recruited from parents of children hospitalised in the 210‐bed paediatric division of an 1150‐bed tertiary university medical centre. The paediatric division includes four paediatric wards, an intensive care unit, a paediatric surgical ward, and an oncology ward. The primary investigator (EG) or a nurse on the ward approached the parents to invite them to participate in the study. Inclusion criteria were parents of children hospitalised in the paediatric wards for more than 24 h, and who spoke and read Hebrew and/or Arabic. Parents were excluded from the study if they were under the age of 18 or illiterate. The questionnaires were kept in a closed cabinet in the hospital office.

2.5. Statistical Analysis

The univariate analysis included the chi‐squared test, Spearman correlation, and Mann–Whitney test according to the examined variable. A multi‐stage logistic regression model was conducted to predict distress (where a score of 4 or above on the DTP constitutes distress and below 4 constitutes no distress). A data analysis was performed for all the study variables, sociodemographic characteristics, and hospitalisation characteristics, which included: the parent's experience during their children hospitalisation, the parent's gender, the number of children in the family, the parent's education, family income, the child's age, the child's gender, days of hospitalisation until the moment of filling out the questionnaire, the severity of the illness in the eyes of the parent, the parent's participation in medical decisions, the parent's age, marital status, Hebrew speaking or not, and Jewish or Bedouin sector.

2.6. Ethical Considerations

The research proposal received the approval of the Helsinki Subcommittee 0387‐19‐SOR of Soroka University Medical Center. The study participants received a full explanation of the study from someone on the research team. Their filling out the questionnaire constituted informed consent to participate in the study. The questionnaires were filled out anonymously with no identifying details, and the data was used only for the benefit of the study.

3. Results

Two hundred and ten parents participated in the study (out of 232 who were contacted, 89.5% responded). Most of the participating parents were mothers (147, 76.2%) and most were married (183, 87.8%). The parents' mean age was 35.5 ± 8.9 years. The mother tongue of the participants was Hebrew (72, 34.6%), Arabic (127, 61.1%), or Russian (8, 3.8%).

The study population was divided into two groups: Bedouin with Arabic mother tongue and Jewish with Hebrew/Russian mother tongue (Table 1). In the Jewish population, the percentage of married couples was 81%, compared to the Bedouin population with 92.2% (Δ² = 5.490 (df = 1), p = 0.026). All the Arabic‐speaking participants were Bedouins. In addition, there was a difference (Δ² = 29.579 (df = 2), p = 0.0001) in the education level of the two populations; almost half of the Jewish participants had academic degrees (44.9%), while most of the Bedouin had high school education only (64.8%). Also, the average income differed between the two populations, with more than half of the Jews having an above‐average income (54.5%) and almost half of the Bedouin having a below‐average income (48.1%) (Δ² = 56 687 (df = 2), p = 0.0001). A difference in the parents' age was also observed (32.6 ± 8.6 years for Bedouin parents versus 39 ± 7.7 years for Jewish parents, t = 5.187 (df = 177), p = 0.0001). The average age of the Bedouin child was lower by 4.9 ± 5 years (Mann–Whitney, Z = −2.702, p = 0.007).

TABLE 1.

Demographic characteristics of the study participants.

		Bedouin n = 127		Jews n = 80		p
		% or M ± SD	n	% or M ± SD	n
Parent gender—women*		77.5	86	73.8	59	0.608
Marital status—married*		92.2	107	81	64	0.026
Education*	High school or less	64.8	68	24.4	19	0.0001
	Above high school not academic	12.4	13	30.8	24
	Academic	22.9	24	44.9	35
Child—boys*		68	85	56.3	45	0.103
Average* income	Below average	48.1	52	19.5	15	0.0001
	Around average	46.3	50	26	20
	Above average	5.6	6	54.5	42
Age of the parent—years		32.6 ± 8.605	101	39 ± 7.655	78	0.0001
Number of children** in the family		4.27 ± 2.629	124	3.5 ± 1.842	80	0.054
Age of the child—** years		4.9 ± 5.199	125	7.1 ± 5.715	80	0.007

^* χ ² test.

^**Mann–Whitney test.

The median score on the parental distress meter was 6, with an interquartile range of (IQR) 2.8. Since 68.3% of all parents reported at or above the threshold score of 4 on the distress scale, it seems that most parents experienced distress from the hospitalisation of their children. The median score of the parents' experience was 19 and the IQR 16.20. In the current study, 96.6% of the parents reported a positive experience during their children's hospitalisation (a score above 12 out of 20). Both Jewish and Bedouin parents were in distress due to their child's hospitalisation but the Bedouin parents were significantly more distressed (5.6 ± 3.47 vs. 4.7 ± 3.11, among Bedouin and Jewish parents respectivly, Mann–Whitney Z = −2.050, p = 0.04). No difference was found between Jewish and Bedouin parents' experience of their child's hospitalisation. Also, the study showed a weak inverse (negative) correlation between distress and experience; the more positive the parents' experience, the lower their distress (r _s‐Correlation Coefficient = −0.142, p = 0.043, See Figure 1).

FIGURE 1.

Correlation between parental distress and experience during their child's hospitalisation.

The multi‐stage logistic regression model predicted 75.5% of distress when a positive experience was a protective factor (OR = −0.352, CI = 0.569–0.870) for distress (p = 0.001). The risk factors were: belonging to the Bedouin population versus belonging to the Jewish population (OR = 2.422, CI = 1.092–5.368, p = 0.011) and the parent's perception of the severity of the child's illness as severe, difficult, and complex (OR = 2.047, CI = 2.030–29.576, p = 0.029). This finding suggests that it is these two variables together that increase the risk of elevated distress. The other variables were not found to be significant (Table 2).

TABLE 2.

Predictors of Parental distress^*, logistic regression.

		OR	Confidence interval 95%		p
			High	Low
Positive parent experience**		0.704	0.870	0.569	0.001
Parent's perception of the severity of the child's illness	Mild illness 1 (indicator)
	Moderate illness 2–3	1.700	4.604	0.628	0.296
	Severe difficult and complex illness 4–5	7.748	29.576	2.030	0.003
Belonging to the Bedouin population***		2.422	5.368	1.092	0.029

^*On a scale 0–10 participant scores of 4 and higher represent distress (1), and lower than 4 represents non‐distress.

^**On a scale 4–20, participant scores 12 and higher represent positive experience (1), and lower than 12 represent negative experience.

^***Belonging to the Bedouin population (1) versus belonging to the Jewish population (0).

4. Discussion

The purpose of the current study was to examine the relationship between parental experiences of hospitalised children and parental distress. Furthermore, we assessed if the main two local cultural differences, Jewish and Bedouin, impact outcomes. The majority (68.3%) of the participating parents were distressed and had a positive experience (96.6%) during the hospitalisation. There was an inverse correlation found between the parents' experience and their levels of distress. The Bedouin parents reported higher levels of distress, but there was no difference in parental experience between Bedouin and Jewish participants. The similarity in the parents' experiences may be attributed to the awareness and successful addressing of the unique needs of patients who are not fluent in Hebrew. Soroka Hospital is the primary facility where the Bedouin population receives their medical care, and the healthcare workers are familiar with this population's challenges. The multi‐variant regression model confirmed that a positive experience had a protective effect and that being a Bedouin parent and perceiving the illness of the child as ‘severe’ are a risk for a higher level of distress.

Stremler et al. [16] described in their study that over half of the parents experienced distress during their children's hospitalisation in the intensive care units. These parents were at risk of developing post‐traumatic syndrome and were unable to make decisions related to their child's hospitalisation. A study [17] examining the responses and beliefs about pain treatment among Chinese parents of children with cancer discovered that 57.7% of the parents reported experiencing distress that hindered their ability to focus on other matters. Our findings support those previous research findings, indicating that there are relatively high levels of distress. However, lower distress levels were reported by another study conducted by Chong et al. [18] In this case, only 42% of parents of children with thalassaemia experienced distress. Positive religious coping correlated with lower psychological distress. High rates of positive coping (95.1%), organised (56.8%), and informal (64.2%) religious activities were reported. Additionally, the cultural context of Malaysia, where the study was conducted, may provide parents with a stronger support network from family and the community. This likely explains why most of the participating parents did not experience significant distress.

A synthesis of a quantitative research article was published by Foster et al. [2] who studied parents' perceptions and experiences during their child's hospitalisation in the intensive care unit. They found that effective communication and meeting the needs of parents are valuable components for a positive hospitalisation experience. Another systematic review [19] collected data from parents whose children were hospitalised due to surgery. The review found that parents experienced negative psychological symptoms and distress, such as depression and anxiety, along with negative experiences such as uncertainty, lack of control over the process, and feeling uncomfortable in strange places and around strange people. According to the study, positive psychosocial experiences and reduced distress were linked to the caring staff's ability to listen to parents and provide them with explanations. The staff's sensitivity towards the child's needs, providing a sense of security, and passing on relevant information were also associated with positive experiences. Several findings in our study correspond with those reports. We found a negative relationship between parents'distress and experience. Also, we found similar positive experiences by both ethnic groups. This may suggest that the care they received met their needs and was effectively communicated.

In a study [20], the experience of parents of hospitalised newborns was found generally positive, which corresponds to our findings. The positive comments were a high standard of care, the quality of health care staff, breastfeeding support, and the prevention of infections. The negative comments were mostly about the issue of communication between the staff and the parents. In contrast, in another study [21] that examined the experience of parents of children with convulsions, it was found that the parents (n = 144) listed 4 issues that affected their experience: sources of strength, adjustment to family life, physical and emotional cost, and uncertainty. Most of the parents (60%) experienced agreement with the medical teams regarding the treatment of the child. However, 65% of the parents expressed uncertainty and concern about their child's prognosis and presented anxiety when they disagreed with the medical team's treatment.

In our study, most of the respondents to the research questionnaire were women (76.2%). These findings are consistent with the literature that women constitute the majority of accompanying parents during a child's hospitalisation [22, 23]. Differences were found between the two ethnic groups: Most of the parents were married, but the marriage rate in the Bedouin society was higher than in the Jewish society. The socioeconomic status and level of education in the Bedouin society were significantly lower than in the Jewish society. In addition, the Bedouin parents' age, 32.6 ± 8.6, was significantly younger than the Jewish parents', 39 ± 7.6, and correspondingly, the Bedouin children were also younger than the Jewish children. These differences between the two research groups in this area are recognised in the literature. For example, in a study published by Mana [13] it was discussed that the Bedouin population in the south of Israel is characterised by young marriages, low socioeconomic status, and low parental education.

Phillips et al. [22] found in their research in an intensive care unit a negative relationship between parental distress (including depression, anxiety, anger, fear, and loneliness) and emotional support. The parents needed support from the nursing staff and the family to lower their levels of distress and improve their care for their children. Our findings may strengthen the recommendation to encourage the healthcare personnel to support emotionally the parents during their children's hospitalisation. Most parents undergo distress during their child's hospitalisation, and a positive hospitalisation experience may reduce their suffering and enable them to function better. This is most important when the patient perceives his child's illness as severe, which may be readily assessed during a simple question, like how we assess pain with a visual analog scale. Doing this may identify the more vulnerable parents for more personally tailored interventions to support. Moreover, healthcare personnel must give special attention to the Bedouin parents, who are more vulnerable to stress as well.

4.1. Strengths and Limitations of the Study

The study shows several strengths: the questionnaires are statistically strong, the response to the questionnaires was high, and two different ethnic populations were equally represented. However, this study also has several weaknesses. First, it was performed at a single medical center, which limits the generalisation of the findings. Second, the method of collecting data included the personal approach of the primary investigator and ward nurses to the parents in the wards, which may accord a responding bias. Finally, illiterate parents were not included in the sample for practical reasons in responding to the questionnaire; however, this group of parents may experience the most distress and difficulty during their child's hospitalisation.

5. Conclusion

The main finding of this study was that the more positive the parents' experience of their child's hospitalisation, the lower their distress. This focusing on improving parents' experience may reduce their distress and allow for a better quality of care for their child. The perception of the severity of a child's illness is one of the major factors affecting parents' distress. Future research directions may include investigating the parents' experience during their child's hospitalisation in a wider capacity and determining the main factors which in their view influence their experience. Moreover, we found that most parents in our sample suffered distress and the causes for this need to be determined.

6. Relevance for Clinical Practice

This study focused on the experiences of parents while their children were hospitalised. We examined parents from different cultural backgrounds within a predominantly Jewish healthcare system. The findings of our study reinforce our belief that healthcare providers are dedicated to delivering top‐quality care to all patients, irrespective of their cultural backgrounds. It is crucial to recognise and leverage this finding to encourage healthcare providers to strive for even greater equality and sensitivity in meeting the needs of the most vulnerable patients.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.