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.

Diacritics: An Important Strategy for Proper Validation of the Arabic Version of the Critical Care Family Needs Inventory.

BACKGROUND AND PURPOSE: Researchers studied the needs of family members using different tools particularly the Critical Care Family Needs Inventory (CCFNI). The purpose of current study was to validate the Arabic version of the CCFNI. METHODS: A jury of experts helped establish content validity of best translated version. Live testing of the revised instrument with a sample of nurses and family members helped ensure its validity and internal consistency reliability. RESULTS: The Content Validity Index indicated an acceptable relevancy and clarity of the translated version. After introducing diacritic to wordings, clarity and readability were ensured by a pilot test with a sample of 22 critical care nurses and 21 family members. Live testing the instrument asserted its discriminant validity where family members (n = 227) ranked total needs higher than nurses (n = 217) (t = 124.2 (df = 442), p < .001). CONCLUSION: After using of diacritics, the new modified Arabic version can be used confidently as a valid and reliable measure of family needs.

Toward developing consensus on family-centred care: An international descriptive study and discussion.

Nurses around the world have described family-centred care (FCC) in various ways. With limited evidence regarding its implementation and with dissent among professionals regarding outcomes that are amorphously defined across age groups, systems and global settings, a group of children's nursing experts from around the world collaborated to seek clarification of the terms, deconstruct the elements in the model and describe empirically a consensus of values toward operationally defining FCC. A modified Delphi method was used drawing on expert opinions of participants from eight countries to develop a contemporary and internationally agreed list of 27 statements (descriptors of FCC) that could form the foundation for a measure for future empirical psychometric study of FCC across settings and countries. Results indicated that even among FCC experts, understandings of FCC differ and that this may account for some of the confusion and conceptual disagreement. Recommendations were identified to underpin the development of a clearer vision of FCC.

Family-Centered Care As a Western-Centric Model in Developing Countries: Luxury Versus Necessity.

Family-centered care (FCC) is a model of care that emerged over many years and is broadly defined as promoting a partnership between the parents and health care professionals in the care of the child. Although recognized by many as the ideal way to care for children and families, previous reviews showed a lack of evidence for its efficacy. A recent Cochrane review recommended further rigorous research to assess the model's effect. Other reports emerged to ascertain FCC poor implementation. There is also a paucity of studies investigating the model outside the Western context. This article dissects the literature and provides a comprehensive summary on FCC in the context of limited resources versus best practice. Lessons learned from the literature for the reproducibility of the model in the developing world are provided. Considered a luxury, the autocratic health systems in most of these countries will not easily accept such a model of care except with a greater understanding and support for the model and high-quality research that can guide hospitals, health systems, and policy makers.

Predictors of psychological well-being and stress among Jordanian menopausal women.

PURPOSE: The aim of this study was to investigate purpose in life, self-acceptance, perceived stress levels, and menopausal symptoms among Jordanian women. METHODS: A descriptive, correlational design with a convenience sample of 193 women aged 40-55 years was employed. RESULTS: The average age at menopause for the current sample was 47.4 years, and menopausal status did not significantly affect purpose in life, self-acceptance, or perceived stress levels. Negative correlations were found between purpose in life and perceived stress, and between self-acceptance and perceived stress (r = -0.49; p = 0.01 and r = -0.58; p = 0.01, respectively). Menopausal symptoms were found to be a strong negative predictor of purpose in life, self-acceptance, and perceived stress levels. In addition, higher health rating was significantly associated with higher psychological well-being and lower perceived stress levels. Perimenopause was found to be a vulnerable stage for severe menopausal symptoms particularly psychological complaints. However, vasomotor symptoms and loss of sexual interest became more intense among postmenopausal women. Although women in the current study had low psychological well-being and high perceived stress, these were not affected by their menopausal status. CONCLUSION: The study showed the importance of including both physical and psychological symptoms during encounters with health professionals, besides considering women's expectations about menopause to help ease their menopausal transition and improve their well-being.

An integrative review of the role of registered nurses in remote and isolated practice.

OBJECTIVE: To examine the role of the registered nurse in remote and isolated areas of Queensland, the Northern Territory, South Australia and Western Australia; and to illustrate the impact of the burden of disease on nursing practice. DATA SOURCES: A literature search was undertaken using electronic databases and the grey literature (including policy documents, project reports and position descriptions). DATA SYNTHESIS: The role of the nurse in remote areas is diverse, and varies according to the context of practice. Although some states and territories offer formal programs to prepare nurses for the role, it is unclear whether this is routinely provided. The burden of disease is higher in remote Australia, and although nurses work to reduce the burden, the need to provide primary care can be at the expense of primary health care. CONCLUSIONS: Whilst the nature of nursing practice is influenced by many factors, considerable agreement exists between states and territories around the role of the registered nurses in remote and isolated communities. The higher burden of disease in remote and isolated areas of Australia impacts on nursing practice, and nurses are uniquely placed to assist in reducing the burden of disease. Greater agreement around what constitutes 'remote' is needed.