Socio-demographic correlates of parents’ participation in care of a hospitalized child

Abstract

Studies on parents’ participation in care of a hospitalized child are rare and have not sufficiently addressed the factors prompting parents’ participation in their child’s care. This study investigated the relative contributions and predictive value of parents’ and children’s demographics on parents’ participation in care. A convenience sample of 294 parents participated from four major hospitals in a metropolitan area in Amman. Parents completed two sets of measures, a socio-demographic form and the Arabic version of the Index of Parent Participation/Hospitalized Child. A series of bivariate analyses were completed to investigate associations between socio-demographic variables and parents’ participation in care. The multiple regression analysis identified four variables as the optimal set of predictors for parent participation in the care of a hospitalized child: hospital experience, type of illness, child’s age and type of hospital. The importance of interpreting these findings in a cultural context is discussed.

Keywords

Family-centred care health services research nurse–family relationships parenting support patient participation

Introduction

Family-centered care (FCC) is one of the most important indicators of modern paediatric nursing and it has received substantial attention in the nursing literature. The philosophy of FCC recognizes the importance of the family in a child’s life and promotes parent participation (PP) in caring based on the unique needs of each child and family (Ahmann, 1994; Newton, 2000). Parents’ participation in their child’s care has been studied in a number of ways, including measuring parents’ perspectives and attitudes towards participating in the care of a hospitalized child (Evagelou et al., 2003; Hallstrom and Runeson, 2001; Roden, 2005; Ygge and Arnetz, 2004), parents’ activities in care (Roden, 2005) and interventional studies to facilitate parents’ participation (O’Haire and Blackford, 2005; Roden, 2005; Ygge and Arnetz, 2004). There is growing consensus that parents’ participation in care cannot be perceived as a unitary concept (Power and Franck, 2008) and that inconsistency is observed in clinical practice regarding the definition of participation, which can range from parents’ passive presence to delivering total care to the hospitalized child (Neill, 1996). Thus, Power and Franck (2008) defined PP as the caregiving activities of the parents/guardian to a hospitalized child. The authors described three types of caregiving activities: physical, psychological and social activities.

Prior studies indicate that PP in care is associated with positive impacts on both children and parents. Studies carried out on modified practices in paediatric units revealed less parental anxiety and fewer difficulties in adjustment for parents who participated in a shared care programme supporting parental participation in care (Keatinge and Gilmore, 1996; Melnyk and Feinstein, 2001). Many of these studies, however, have been completed in the context of supportive interventions and the extent of PP was not measured. Thus, the specific relationship between participation in care and reduction of stress cannot be determined.

Moreover, less is known about the factors that may define how involved parents become in their child’s care. It is suggested that understanding such factors would assist in developing interventions to modify participation at a level that parents find comfortable. Multiple factors influence parents’ participation in care of a hospitalized child, and those factors differ across cultures. Pongjaturawit and Harrigan (2003) argued that practices related to PP in the care of a hospitalized child have evolved based on studies in the Western cultures, and studies related to PP or factors influencing this role in Eastern cultures is very limited.

There is growing consensus that PP is perceived differently by different societies and cultures. For instance, whilst the FCC concept as represented by parental participation is well accepted in Westernized countries, it is less established in developing countries (Shields et al., 2012). PP in care in Eastern cultures is forced based on cultural expectations. Providing basic care to a hospitalized child is a routine expectation in Thai culture, as parents often lack information from professionals related to their child’s condition or treatment (Pongjaturawit and Harrigan, 2003). This indicates that parents may have no choice in playing a role in the care of their hospitalized child. Shields et al. (2012) argued that culture plays a major role in determining how care is given by healthcare professionals and perceived by parents (Shields et al., 2012). Moreover, Power and Franck (2008) suggested that personal attributes including age, gender, experience and parental status positively influenced nurses’ attitudes towards parents’ participation: nurses with higher education, more clinical experience or who held senior positions had more positive attitudes towards parents’ participation. This study investigated the relative contributions and predictive value of parents’ and children’s demographics on parents’ participation in care.

Methods

Data collection

Data were collected over four months in 2014 through semi-structured interviews. The principal investigator (RA) invited potential participants to take part in this study, and parents were invited to participate at the time of their child’s admission to the hospital. Parents were given information about the study, and if they agreed to participate they were asked to sign a consent form. All participants were assured that their participation was voluntary, and it would not affect the care that their child was receiving, and parents were also assured that they could withdraw from the study at any time. Parents consenting to participate were asked to complete a socio-demographic form and the Arabic version of the Index of Parent Participation/Hospitalized Child (IPP/HC) (Melnyk et al., 2004).

Sample

A total of 294 parents participated in this study. A convenience sampling technique was used to recruit parents from four major hospitals in Jordan, which included one public hospital, one university-affiliated hospital and two private hospitals. Parents were eligible to participate if they were more than 18-years old, were the main caregivers for the hospitalized child and if they remained at the bedside for at least 24 hours. Parents of children greater than 12-years old were excluded.

Measurements

Parents’ participation

Parents’ participation in care was measured using the IPP/HC scale (Melnyk et al., 2004). This scale has received sufficient reliability and validity testing among parents participating in care of a hospitalized child (Romaniuk et al., 2014). This scale has 36 activities that are grouped into four domains: providing comfort, activities related to daily living (ADL), advocating for their child and activities related to technical tasks. The total score for the scale is determined by counting the number of activities checked by the parents as present scores range from 0 to 36. The higher the score, the more that parents are involved in their child’s care (Melnyk et al., 2004).

Socio-demographic and clinical variables

Parents’ socio-demographic data included relationship with their child, parents’ ages, parents’ level of education, employment status, marital status, size of family and whether or not they had health insurance. The child’s variables included age, sex, number of admissions, length of stay, illness category and severity of illness(es).

Ethical consideration

This study was approved by the ethics committee of the faculty of nursing at the University of Jordan and the Institutional Review Board (IRB) from the hospitals where the study was completed. Permission to use and to translate the IPP/HC was obtained from the author.

Statistical analysis

The Statistical Package for Social Sciences (SPSS 16.0) was used to perform the data analyses. Descriptive data, including ranges, frequency distributions, percentages, means, and standard deviations, were computed to describe the study sample. Bivariate analyses were conducted using a series of Pearson correlations, analysis of variance (ANOVA), χ ², and independent t-tests to compute differences between the variables. Finally, a multiple regression analysis was used to determine socio-demographic factors that best predict parents’ participation in care in the paediatric settings in Jordan.

Results

The study sample consisted of 294 parents aged 18 and above. The majority of respondents in this study were mothers (n = 270, 91.8%), whilst the rest of the participants (n = 24, 8.2%) were fathers. Table 1 presents the distribution of the participants by socio-demography, and Table 2 presents the clinical characteristics of the children. As shown in Table 2, the majority of children were admitted via the emergency department (56%) and were almost all medical cases (74.1%).

Table 1.

Characteristics of parent participants.

		Frequency	(%)
Relationship to the child	Mother	270	91.8
Relationship to the child	Father	24	8.2
Age	18–25	47	16.0
	26–30	73	24.8
	≥31	174	59.2
Educational level	Illiterate	4	1.4
	Elementary school	24	8.2
	Secondary school	102	34.7
	Diploma	100	34.0
	University	52	17.7
	Higher education	12	4.1
Type of hospital	Private	100	34.0
	Public	95	32.3
	University affiliated (teaching)	99	33.7
Insurance	Yes	232	78.9
Insurance	No	62	21.1

Note: N = 294.

Table 2.

Characteristics of children of participants.

Characteristic		Frequency	(%)
Child’s sex	Male	158	53.7
Child’s sex	Female	136	46.3
Child’s age	Infant (1–12 month)	85	28.9
	Toddler (>1 to 3 years)	74	25.2
	Preschool (>3 to 6 years)	65	22.1
	School (>6 to 12 years)	70	23.8
Number of previous admissions	None	102	34.7
	One time	57	19.4
	Two times	26	8.8
	Three times and more	109	37.1
Admission route	Out Patient Department (planned)	127	43.2
Admission route	Emergency Department (not planned)	167	56.8
Type of case	Medical	218	74.1
Type of case	Surgical	76	25.9
Severity of child’s disease	Acute	183	62.2
Severity of child’s disease	Chronic	111	37.8
Length of hospital stay (in days)	1–3	118	40.1
	4–7	58	19.8
	>7	118	40.1
Child’s diagnosis	Respiratory	83	28.3
	Cancer	64	21.8
	Renal	44	15.0
	Neurological	27	9.2
	Investigation of symptoms	54	18.4
	Gastro Enteritis	14	4.8
	Cardiac	3	1.0
	Other	4	1.4

Note: N = 294.

A series of bivariate analyses were completed to investigate associations between socio-demographic variables and parents’ participation in care. As presented in Table 3, results of an independent samples t-test revealed no significant difference in parents’ participation in care between mothers (mean = 26.8, SD = 4.9) and fathers (mean = 25.0, SD = 6.9; t(511) 511, p = .43). An additional independent samples t-test was conducted to compare insured and noninsured parents’ participation. There was no significant difference in participation level between parents with medical insurance (mean = 26.9, SD = 5.1) and noninsured respondents (mean = 26.8, SD = 4.7; t(292) .11, p = .913). These results showed that medical insurance has no effect on the participation level among parents in Jordan.

Table 3.

Mean scores of parents’ participation according to socioeconomic factors (including t-test or F-test).

Parent’s demographics	Mean	SD	t-test	F	p
Relationship to the child			1.11		.43
Mother	26.8	4.9
Father	25.0	6.9
Age				2.199	.113
18–25	25.8	4.9
26–30	27.8	4.5
≥31	26.8	5.2
Educational level				2.2	.113
Illiterate	26.5	6.6
Elementary school	26.8	6.1
Secondary school	27.0	4.9
Diploma	27.4	5.3
University	26.4	4.5
Higher education	24.6	3.9
Type of hospital				20.8	.000**
Private	29.3	4.5
Public	25.0	4.7
University affiliated (teaching)	26.3	5.0
Insurance			.11		.913
Yes	26.9	5.1
No	26.8	4.7
Child’s gender			−1.074		.284
Boys	26.6	4.5
Girls	27.2	5.6
Child’s age				7.268	.000**
Infant (1–12 month)	24.9	5.2
Toddler (>1 to 3 years)	27.2	4.4
Preschool (> 3 to 6 years)	28.3	4.7
School (>6 to 12 years)	27.7	5.2
Number of previous admissions				7.427	.001**
None	25.9	5.0
One time	26.9	4.9
Two times	26.0	5.6
Three times and more	27.9	4.9
Admission route			2.79		.006**
Out Patient Department (planned)	27.8	5.1
Emergency Department (not planned)	26.2	4.9
Type of case				1.558	.123
Medical	30.97	4.5
Surgical	28.5	7.0
Type of child’s disease			−4.336		.000**
Acute	25.9	4.9
Chronic	28.5	4.9
Length of hospital stay				9.204	**
1–3 days	26.9	4.8
4–7 days	20.4	7.7
>7 days	21.71	5.7

Note: *p ≤ .001; **p ≤ .05.

As expected, findings from the independent t-test revealed a significant difference in mean participation scores for parents of children with chronic illnesses (mean = 28, SD = 5, 4.9) and patients with acute illnesses (mean = 25, SD = 9, 4.9; t(292) 4.336, p = .000). Another significant difference between parents’ participation in care was between parents of children admitted via the outpatient department (mean = 27.8, SD = 5.1) and parents of children admitted through the emergency department (mean = 26.2, SD = 4.9); t(292) 2.792, p = .006. Comparisons between children admitted via the emergency department and those admitted by the outpatient department were statistically significant at p = .05. No significant differences were reported for medical (mean = 30.97, SD = 4.9) versus surgical cases (mean = 28.5, SD = 7.0; t(88) 1.558, p = .123).

A one-way ANOVA was used to test for PP differences among the three types of hospitals. Parents’ participation differed significantly across the three types of hospital settings, F(2, 468.6) = 20.801, p = .000. Tukey’s post hoc comparisons of the three groups indicate that the parents at the public hospital (mean = 29.3, SD = 4.7) and the university-affiliated hospital (mean = 26.3, SD = 5.0) reported significantly higher participation levels than the parents in the private settings (mean = 25.0, SD = 4.5), p = .000.

Another one-way ANOVA was used to test for participation differences among the listed levels of educational attainment, and all were not statistically significant. There was a significant effect of child’s age on parents’ participation, F(3, 174.64) = 7.27, p = .001. Tukey’s post hoc comparisons of the three groups indicate that the mean participation score of parents of infants (mean = 24.9, SD = 5.2) was significantly lower than that of parents of older children, and the mean participation score of the parents of children aged three to six-years old (mean = 28.3, SD = 4.7) was significantly higher than that of parents of older children. There was, therefore, a negative and significant association between child’s age and parents’ participation. Finally, association between the number of previous hospitalization and parents participation using one-way ANOVA was found to be positive and significant, F(2, 181.9) = 7.427; p = .001.

Multiple regression analysis was used to evaluate whether the entire set of demographic characteristics and clinical variables were sufficient to predict parents’ participation from all categories of IPP/HC. Using the entered method, the overall regression was statistically significant. The necessary assumptions for multiple regression analysis including multicollinearity, homoscedasticity, normality and independence of residuals were generally met. Findings from multiple regression analysis revealed a significant model (R = .51, R ² = .26, adjusted R ² = .20, F = 4.1, p < .001). In this model, type of hospital settings, child’s age, length of hospital stay and child’s types of illnesses were significant predictors for parents’ participation in care.

The results of regression analysis are summarized in Table 4. Whilst the unstandardized coefficients (b-weights) are presented first, it reflects the actual measure with its associated mean and standard deviation (Munro, 2005). The standardized or β coefficient reflects the weight associated with z-scores on the variables (Munro, 2005). Standard error (SE) is a measure of the difference between predicted and actual scores. PP could be predicted quite well from the set of socio-demographic variables, with approximately 26% of the variance in parental participation accounted for by the regression.

Table 4.

Results of multiple regression analysis to predict parents’ participation by socio-demographic factors.

Variables	Unstandardized coefficients		Standardized coefficients	t	Significance
Variables	B	SE	β	t	Significance
Severity of child’s disease (acute vs. chronic)	2.561	.591	.246	4.336	.001**
Type of hospital	−1.493	.348	−0.243	−4.287	.001**
Child’s age	.994	.253	.224	3.932	.001**
Length of hospitalization	1.03	.77	.075	1.103	.003*

Note: N = 294.

*p ≤ .001; **p ≤ .05.

Discussion

The results of this study clarify, to some extent, the factors associated with parents’ participation in their child’s care in paediatric care settings in Jordan. To date, the literature on factors associated with parents’ participation in care has highlighted the importance of demographic factors, yet there is limited knowledge regarding these factors and how they may influence parents’ participation in care. Previous studies have not looked at the special effects of different demographic variables nor have they addressed effects of demographics on different types and levels of parents’ participation in care. It should be re-emphasized that this study was conducted from a ‘correlational’ perspective and that no causal link can be established based on the observations made between the variables.

Although this study included a subset of potential predictors of PP in care, we believe that the results of the study add to the growing literature on this topic. In this study, only six significant factors influenced parents’ participation in care: type of hospital, child’s age, admission route, number of previous admissions, type of illness and length of hospitalization. However, the multiple regression identified only four variables as the optimal set of predictors: type of hospital, type of child’s illnesses, length of stay at the hospital and the child’s age.

From the parent characteristics, we note that parents’ participation in care of a hospitalized child was greater when the parents had a previous experience, such as parents of children with chronic illnesses and parents with previous hospital admissions. This suggests that parents with higher number of hospital experiences were significantly more involved in their child’s care as compared to those with no previous experiences. It is argued that parents with previous hospital admissions are believed to have more abilities and confidence to reassure and provide comfort to their child and eventually to be more involved in their child’s care as compared to those with no previous hospitalizations (Lam et al., 2006; Saharah and Jeanine, 2004). This is congruent with Kyritsi et al. (2005) and Hopia et al. (2006), who found that parents who lacked hospitalization experiences had negative attitudes toward PP, had knowledge deficits, and lacked skills to participate effectively in their child’s care. These results suggest the importance of considering the support to the parents of newly diagnosed or admitted children in order to sustain the parents’ participation in care.

As for hospital type, parents of children admitted at a public hospital participated the most in their child’s care. This suggests that special attention should be paid to parents’ experience in government hospitals in order to understand what factors may influence their participation in care. From this perspective, parents’ high rate of participation may have stemmed from parents’ concerns that if they did not provide the care themselves, it would not otherwise be given to their child. These concerns are consistent with previous reports in studies by Lam et al. (2006), Ygge &and Arnetz (2004), and Coyne and Cowley (2007). In order to understand the complexity of parents’ experience in the developing world, it would be very instructive to have a better understanding of different aspects involved in parental participation. It is suggested that parents’ participation in care may reflect a cultural expectation and not a reflection of applied family-centered care for those parents. This may stem from parents’ overwhelming feeling of responsibilities for the care of a child and their concerns about environmental conditions in the public hospitals in the developing world. In Tanzania, issues with overcrowded wards, lack of food, staff’s apprehension and lack of training were significant factors for mothers’ participation in care (Mwangi et al., 2008). It would be interesting to assess the means used by the nurses to solicit parents’ participation in their child’s care and to measure congruency between parents’ desired levels of participation and their actual participation levels. It is suggested that greater efforts should be made by the healthcare providers to support and facilitate parents’ participation at their comfort level. It is important that the healthcare providers come to see parents’ participation in their child’s care as a help in care and not a substitute for nurses’ work.

Significantly, the child’s length of hospitalization emerged as a predictor for parents’ participation. There were significant differences in the mean scores of participation between parents according to the length of stay at the hospital. It is suggested that the longer the parents stayed at the hospital, the less they participated in their child’s care. This would highlight certain issues observed in this study, notably the fact that parents report less participation at the private hospital and with longer hospital stays, which may support the idea that PP is determined by individual nurses’ decisions rather than decisions made by the parents themselves.

Finally, parents of infants were less involved in their child’s care than parents of toddlers and older children. It may be more difficult for parents to participate in care when the child is so young, and it perhaps would be more useful to consider encouraging other type of activities to engage parents. At the intervention level, this brings up the importance of investigating the support the health team offered to parents to keep them engaged in ongoing involvement in the care of their children. Interestingly, other sociodemographics did not significantly impact parents’ participation, suggesting that parents’ participation may occur equally, regardless of parents’ age, educational level or their access to health insurance.

In order to verify whether the variables identified in this study can be generalized to other settings in Jordan or neighbour countries, there is a need to replicate the study using a larger sample and more representative settings. Furthermore, we believe a modified version of the tool should be developed as the current scale measures parents’ participation in activities as present or absent. The modified version should permit parents to evaluate their participation on a continuum (e.g. always, sometimes and never). One of the main contributions of this study is defining demographic and clinical factors promoting parents’ participation in the paediatric settings of a hospital in Jordan. However, we should bear in mind that PP in care is a dynamic process, which must be understood in parallel with the evolution of FCC in modern paediatric nursing. Therefore, there is a need to differentiate between actual versus desired level of participation as well as to define the extent of parents’ participation. Power and Frank (2008) and Romaniuk et al. (2014) suggested that some parents may desire more participation in their child’s care but are being discouraged from participating due to a lack of information or negotiation skills with nurses, whilst other parents may view it as an added stress and may not wish to be participate.

Future work in this field should take into account the importance of the setting in which PP occurs, the parents’ expected or desired level of participation as well as a consensus about the nature and extent of parental activity. There is a need to define the roles that could be shared between parents and nurses and the implications of this sharing. Approaches to promote a certain form of partnership between parents and nurses must be put in place to ensure that parents are included in and equipped to make decisions concerning their child’s care. Parental involvement must be initiated, facilitated and evaluated by other nurses.

Footnotes

Ethical Approval

All identifying information regarding the study participants has been omitted and this study was approved by the Academic Research Committee at the Faculty of Nursing at the University of Jordan and the Institutional Review Board of King Hussein Cancer Center.

Conflict of interest

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.

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