Caregiver burden among parents of children with chronic diseases: A cross-sectional study.

AIMS AND OBJECTIVES: This study aimed to assess the perceived caregiver burden among parents of chronically ill children in Jordan. BACKGROUND: Although there are few studies on the accurate prevalence of chronic diseases among Jordanian children, there are a few on the burden of caregiving, which is important because most children with chronic illness rely on their caregivers to perform their daily tasks. In Jordan, little is known about the caregiver burden associated with caring for children with chronic diseases. DESIGN: A cross-sectional design was reported in line with the STROBE guidelines. METHODS: The Katz Index of Independence was used to determine the children's level of dependence, and the Burden Scale for Family Caregivers was used to measure the caregivers' level of burden. RESULTS: Nearly, 49.3% of caregivers had a very severe burden, 31.2% of children had a severe functional impairment, 19.6% had a moderate impairment, and 49.3% had full functionality. Based on their children's dependency, caregivers' subjective burden varied greatly (p < .001). Fully functional children had a far lower disease burden than severely and moderately disabled children (p < .001). The caregiver burden score differed significantly across chronic disease categories (p < .001). Unemployed caregivers had a far higher subjective burden than working caregivers (p = .009), and single (divorced/widowed) caregivers had higher burdens than married caregivers. CONCLUSIONS: Various factors can increase caregiver burden. Therefore, healthcare providers must plan holistic and family-centred interventions to reduce the caregiving burden. RELEVANCE TO CLINICAL PRACTICE: There is a need to establish support programs to help reduce the level of burden among caregivers of children with chronic diseases.

The experiences of mothers of children with hydrocephalus in Jordan: A phenomenological study.

BACKGROUND: Available literature showed that mothers of children with hydrocephalus experience many challenges. Studies that described mothers' experiences in caring for their children with hydrocephalus are limited. Understanding the mothers' experiences and challenges is essential and may enable the provision of increased knowledge and support for these mothers. AIM: The aim of this study was to explore the lived experiences of Jordanian mothers of children with hydrocephalus. METHODOLOGY: A phenomenological descriptive approach was applied in this study, using semi-structured interviews with a purposive sample of 10 mothers of children with hydrocephalus. Transcribed interviews were analyzed using thematic approach. RESULT: Three main themes that explored the mothers' experiences emerged from the data analysis process. The first theme was the impact of living with a child with hydrocephalus. Four subthemes comprise this theme; namely the mothers' initial response, overwhelming responsibilities, social withdrawal, and adapting: loving the baby and growing stronger. The second theme was related to the support system. Two subthemes compose this theme; the role of husband, and social support. The last theme was related to feelings of uncertainty. Two subthemes constitute this theme; concerns about the child's future and considering abortion as a solution. CONCLUSION: The mothers in this study were found to have experienced many intense feelings and to have faced many stressors and difficulties associated with the different stages of their child's illness. This study provides evidence that could be used to develop guidelines to support mothers of children with hydrocephalus.

Neonatal Nurses' Perceptions and Needs of End-of-Life Care Practice: A Jordanian Qualitative Study.

End-of-life (EOL) care for newborns is challenging and requires well-prepared nurses to provide the best care for the dying baby and to prepare and support parents during such a difficult experience. This study aimed to explore Jordanian neonatal intensive care unit nurses' perceptions and needs regarding the provision of EOL care. This study used an exploratory descriptive qualitative approach and was conducted among a sample of 12 Jordanian neonatal intensive care unit nurses. Semistructured interviews were conducted to allow the nurses to describe their personal experiences and express their needs related to the provision of EOL care. Two main themes and 6 subthemes emerged from the analysis process. Main themes were (1) the challenges related to the provision of EOL care, and (2) nurses' needs: what matters most. The findings of this study shed light on neonatal care unit nurses' experiences and needs related to the provision of EOL care. The results of this study may be used to develop EOL care guidelines, programs, and protocols to be applied in intensive care units.

Prevalence of Adverse Childhood Experiences and Their Relationship with Self-esteem Among School-Age Children in Jordan.

This study aimed to assess the prevalence of adverse childhood experiences and their relationship with self-esteem among secondary school students in Jordan. A cross-sectional, retrospective design was utilized using a convenience sample of 559 secondary school children (grades 7-11). Results showed that among the participating students, emotional abuse was the most commonly reported type of abuse (59.6%), followed by household violence (52.2%), bullying (44.7%), physical abuse (31.7%), emotional neglect (26.3), physical neglect (12.7%), and parents' separation (5.2%). Male students reported significantly more physical abuse than female students (37.5% vs 26.2%, p < 0.001), and significantly more physical neglect than female students (18.2% vs 7.6%, p < 0.001). However, female students reported significantly more household violence than male student (60.0% vs 43.9%, p < 0.001). Self-esteem scores were lower for students who reported physical abuse (d = 0.38, p < 0.001), household violence (d = 0.25, p < 0.003), emotional neglect (d = 0.45, p < 0.001), physical neglect (d = 0.58, p < 0.001), and bullying (d = 0.29, p = 0.001). Self-esteem was best predicted by physical abuse (ß = - 0.114, p = 0.009), emotional neglect (ß = - 0.169, p < 0.001), and physical neglect (ß = - 0.148, p < 0.001). Efforts should be exerted to prevent violence against children. National programs and community awareness campaigns should focus on the violence's detrimental effects on children.

Experiences of Neonatal Intensive Care Unit Nurses as Mothers of Newborns in Neonatal Intensive Care Units: A Jordanian Qualitative Study.

PURPOSE: Little research has explored the experiences and perspectives of neonatal intensive care unit (NICU) nurses who have also experienced being NICU parents. The purpose of this study was to explore the experiences of these nurses who have or have ever had an infant hospitalized in a NICU. DESIGN AND METHODS: A qualitative descriptive design using semi-structured interviews with a purposive sample of 9 registered Jordanian NICU nurses who have or have had a child admitted to a NICU. RESULTS: Findings suggest an oscillation between the role of being a nurse and the role of being a mother. The nurses' background clinical experience has an impact on how they provided and received care and on the decisions they made regarding their infants' care plans. Nurses reported fears of the "recommended patient syndrome" and tried to avoid being labeled as "nagging" by other healthcare providers. CONCLUSIONS: Study findings shed light on the needs of NICU nurses with NICU admitted infants and the struggle faced by nurses-mothers as a result of their dual role, and highlights the importance of the family centered developmental care approach that recognizes the family as the cornerstone of the NICU health care team. PRACTICE IMPLICATIONS: Findings highlight issues related to the shared needs between mothers and nurse-mothers in relation to proximity and involvement in newborn care plan.

Parenting a Child With Autism Spectrum Disorder: Perspective of Jordanian Mothers.

INTRODUCTION: Parenting a child diagnosed with autism spectrum disorder (ASD) is challenging for mothers because of concerns related to behavior, difficulties in accessing specialized care, and lack of community acceptance, yet their stories in Jordanian context are still unknown. Common challenges in Jordan include financial burdens, lack of public awareness, and lack of specialized knowledge even among health care providers, which may lead to delays in obtaining the diagnosis and interventions for ASD. METHOD: A phenomenological descriptive approach was used to explore and understand the mothers' everyday lived experiences of raising a child with ASD. Semistructured interviews were conducted with 14 mothers to identify their challenges so that nurses can identify gaps in services, empower families, and facilitate optimum care to these Jordanian families. FINDINGS: The main themes that emerged were (1) mothers' journeys with the diagnosis, in which mothers recognized the abnormalities of their children, reported delays in getting the diagnosis and initiation of treatment, and described a wide range of reactions to the diagnosis from grief and guilt to a blessing from God; (2) the burden of care, by which mothers reported physical and emotional exhaustion, financial burdens, and concerns about the quality of available services; and (3) the consequences and the hurdle of having a child with ASD, which affected the family relationships and social life. DISCUSSION: Jordanian mothers caring for children with ASD face several challenges, including physical, psychological, financial, and social challenges, in addition to limited specialized services. Identifying their unique challenges and needs are essential to support them, provide appropriate services and resources, and develop policies and guidelines for culturally competent quality services.

Neonatal nurses' knowledge and beliefs about kangaroo mother care in neonatal intensive care units: A descriptive, cross-sectional study.

The aim of this study was to assess Jordanian neonatal nurses' knowledge and beliefs toward the application of kangaroo mother care in the neonatal intensive care unit. A cross-sectional, descriptive survey was performed using a convenience sample of 229 nurses. The findings revealed that the majority of the nurses agreed that kangaroo mother care was beneficial to both mothers and infants; however, 47.2% believed that it was not feasible for all preterm infants. The majority of nurses believed that kangaroo mother care should be restricted to infants on intravenous treatment, intubated, or with an umbilical catheter. The majority of the nurses correctly answered questions regarding kangaroo mother care. A significant relationship was found between the nurses' knowledge and their beliefs toward kangaroo mother care. The findings of this study provide insights into Jordanian nurses' knowledge and beliefs toward the kangaroo mother care approach. If addressed, these findings will help improve the practice and nursing care for preterm infants.

The Effect of Short Duration Skin to Skin Contact on Premature Infants' Physiological and Behavioral Outcomes: A Quasi-Experimental Study.

PURPOSE: This study aimed at assessing the effect of short duration Skin to skin contact (SSC) (5 days) on premature infants' short-term physiological and behavioral outcomes. DESIGN AND METHODS: A quasi-experimental control group design was utilized. 89 stable premature infants were allocated to either an interventional or control group. RESULTS: Results showed that in comparison to the control group, newborns in the SSC group demonstrated higher weight gain (g/day) from day 3-5 of practicing SSC (53.7 g Vs. 32.6 g; P < .05), experienced significantly fewer numbers of apneas (48% Vs. 33.3%; P = .001), and were less likely to use formula feeding (60% Vs. 90%) and more likely to use mixed feeding (formula and breastfeeding) at discharge (33.3% Vs. 10%). Significant differences were also found in the crying, and sleeping patterns of the infants; infants of mothers who practiced SSC were less likely to cry in a continuous pattern and more likely to experience good sleep than infants in the control group. CONCLUSIONS: The study highlights the importance of the early and short duration of SSC for premature infants. PRACTICE IMPLICATIONS: The initiation of SSC in the first few days of life may have a significant influence on the newborn's short-term outcomes.

Healthcare Professionals' Attitudes and Practices in Supporting and Promoting the Breastfeeding of Preterm Infants in NICUs.

BACKGROUND: Breastfeeding preterm infants is shown to have important health benefits for both infants and mothers. A positive relationship between mothers and healthcare teams and supportive practices tend to facilitate maternal competence and promote early initiation of breastfeeding within neonatal intensive care units (NICUs). PURPOSE: The aim of this study was to understand attitudes and behaviors of healthcare professionals toward breastfeeding practices and supporting mothers of preterm infants. METHODS: This study adopted an ethnographic research design that involved 135 hours of participant observation over a 6-month period and semistructured interviews of 10 nurses and 5 physicians. RESULTS: Data analysis suggests that while staff members agree with the benefits of breastfeeding for preterm infants, the actual implementation of a breastfeeding policy within NICUs is problematic. Three key themes emerged. The first described the contradiction that exists between the staff beliefs and behaviors in relation to breastfeeding and supporting mothers. The second theme was related to staff working conditions, which described the lack of institutional support and barriers to supporting breastfeeding. The final theme of controlling relationships captured the essence of the practitioner to mother association. Together, these elements revealed a situation whereby the staff appeared more preoccupied with addressing the task of caring for the babies than with supporting mothers in feeding and subsequently caring for their preterm children. IMPLICATIONS FOR PRACTICE: The institutional barriers to breastfeeding promotion within NICUs should be addressed by healthcare providers. Actions that provide a supportive environment within NICUs for both mothers and nurses are essential to improve the overall quality of care. IMPLICATIONS FOR RESEARCH: Future research may include an examination of hospital policies and practices of promoting breastfeeding for preterm infants.