Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis.

PURPOSE: The purpose of this study is to describe parents' experiences in caring for 2-5-year-old children with juvenile idiopathic arthritis (JIA). DESIGN AND METHODS: A qualitative study using single-occasion in-depth interviews was conducted. Nine parents (eight mothers and one father) were interviewed in-person or via telephone. Data were analyzed using inductive content analysis. Methods used to protect the trustworthiness of study results included maintenance of an audit trail, peer debriefing, and member checks. RESULTS: The core construct Struggling in the Dark to Help My Child explained parents' experience in six domains: not knowing, trying to reach out in the dark, feeling my child's pain, working out the kinks to stay on top to manage, feeling drained by the whole process, and being hard on the entire household. Parents struggled with the unknown, searched for resources, witnessed their child's suffering without knowing how to help, and tried every possible way to stay on top of the child's illness and treatment, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire family, including the siblings and spouse, and the relationships among family members. CONCLUSION AND IMPLICATIONS: Findings highlight the day-to-day lived challenges parents face when caring for a young child with JIA. Healthcare providers including nurses need to assess the particular needs of an ill child and parents as well as the impact of the illness on the physical and psychosocial health of the entire family so that proper resources can be provided.

The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis.

PURPOSE: To examine the associations among caregiver perceived economic hardship, psychological distress, children's disease activity, and health-related quality of life (HRQOL) in children with juvenile idiopathic arthritis (JIA). METHODS: Caregivers of 182 children with JIA (ages 2-18) attending the rheumatology clinics at the Montreal Children's Hospital and the British Columbia's Children Hospital completed a series of questionnaires on perceived financial hardship, caregiver psychological distress, and children's HRQOL at baseline, 6 and 12 months. Clinical information such as disease activity was obtained from medical charts. Statistical models were used to look at the significance of several factors of interest while controlling for possible confounders. RESULTS: Higher caregiver perceived economic hardship [(ß = 0.03, 95% CI = 0.005, 0.06), P = 0.02], psychological distress [(ß = 0.02, 95% CI = 0.006, 0.03), P = 0.004], and higher children's disease activity [(ß = 0.11, 95% CI = 0.07, 0.15), P < 0.0001] were associated with worse children's HRQOL. CONCLUSIONS: Findings suggest that caregiver financial hardship and psychological distress as well as children's disease activity may impact children's HRQOL. By providing psychological help to parents, offering information regarding financial resources in the community and by ensuring disease control, especially when the disease is severe, health providers may improve children's health outcomes.

Evaluation of psychological stress in primary caregivers of patients with juvenile idiopathic arthritis.

OBJECTIVE: To assess psychological stress in primary caregivers of juvenile idiopathic arthritis (JIA) pediatric patients. METHODS: Uncontrolled cross-sectional analytical study of 40 caregivers of JIA patients. Caregivers were evaluated using the Caregiver Burden Scale, which analyzes five domains of stress on a scale of 1 to 4: general strain, isolation, disappointment, emotional involvement and strain caused by environmental barriers. The data were subjected to statistical analysis. RESULTS: Caregivers of JIA patients were mainly female (87.5%), married (92.1%) and close relatives (90%). Stress levels were higher in caregivers of polyarticular JIA patients (p = 0.006), single caregivers (p = 0.019) and female caregivers (p = 0.017). Environment-related difficulties were reported as the most stressful category by caregivers. CONCLUSION: Caregivers of JIA patients are usually married female relatives. Caring for polyarticular JIA patients is more stressful than caring for oligoarticular JIA patients. Strain caused by environmental barriers accounts for the highest levels of stress among the caregivers included in this study.

'My daughter's rheumatology nurse took away all of her fear'.

My daughter Isabella was diagnosed with juvenile arthritis at the age of one. She was unable to walk and in pain constantly.

An educational needs assessment of children with juvenile rheumatoid arthritis.

OBJECTIVE: Our objective is to describe the use of the PRECEDE model (predisposing, reinforcing, and enabling causes in educational diagnosis and evaluation) to organize needs assessment data in order to define self-management behaviors and plan an educational intervention for children with juvenile rheumatoid arthritis (JRA) and their families. METHODS: Analysis was done of needs assessment data collected from several sources: 1) literature review, 2) survey of parents of 51 children with JRA, 3) group interview of seven parents of children with JRA, 4) results of pilot programs, and 5) clinical experience of an interdisciplinary pediatric rheumatology team. RESULTS: Two sets of interrelated behavioral factors were identified through the needs assessment: 1) those related to managing the school environment to facilitate optimal participation and to minimize school-related disability, and 2) those related to treating pain and stiffness, intervening in the disease process, and preserving joint function. CONCLUSION: Both of these sets of behavioral factors may be related to the optimization of children's mobility, joint function, and autonomy of activities of daily living and should be targets of an educational intervention.

Impact of juvenile arthritis on families. An educational assessment.

State of the art patient education programs have as their goals changes in behaviors, coping styles, health status, and/or costs. The accomplishment of these goals often involves not only the patient but also his or her whole family. This is especially true if the patient is a child. Based on this premise, we undertook an educational needs assessment of 50 children with juvenile arthritis (JA) and their families. Through utilization of a grounded theory methodology, open-ended questionnaires were completed by JA children, their parents, and their siblings. The resulting analysis suggests (1) the need for family-based education, (2) differing needs of various family members, and (3) several hypotheses for further study.

Prevention of nonadherence to nonsteroidal anti-inflammatory medications for newly diagnosed patients with juvenile rheumatoid arthritis.

Adherence to medications for chronic pediatric diseases decreases overtime. This randomized controlled trial evaluated a clinic-based, nurse-administered educational and behavioral intervention to prevent the anticipated drop in adherence to nonsteroidal medications among newly diagnosed patients with juvenile rheumatoid arthritis. Thirty-four participants completed the study (mean age = 8.44 years, SD = 3.96), including 19 in the experimental group and 15 in the standard-treatment (education) control group. There were significant group and Group x Time effects for adherence (assessed with an electronic monitor over a 13-month period) favoring the experimental group. In contrast, the groups did not differ significantly in disease activity or functional limitations. Factors that may have prevented detection of differences in these health parameters are dicussed.

Chronic pain and the child with juvenile rheumatoid arthritis.

This article presents a summary of nursing issues concerning the assessment and management of pain in children with juvenile rheumatoid arthritis (JRA). Following a brief description of the difference between acute and chronic pain and a description of JRA, the developmental issues relating to pain assessment in this population are discussed. Three pain assessment tool alternatives are presented. Finally, current strategies for pain relief and treatment of children with JRA are presented.

Nursing management of a child with juvenile rheumatoid arthritis.

Juvenile rheumatoid arthritis is an incurable chronic disease of childhood which involves connective tissue in the joints. Treatment aims are supportive and directed toward pain management, alleviation of inflammation, and optimization of joint function. A multidisciplinary team approach is helpful, with nursing care an essential part of the treatment plan.

Methotrexate use in juvenile rheumatoid arthritis.

Juvenile Rheumatoid Arthritis (JRA) is a chronic, inflammatory, autoimmune disease of childhood. Methotrexate is an emerging antirheumatic drug in the pediatric population for disease refractory to conventional medications. While observations are encouraging, the toxic side effects can be potentially serious. Toxicity includes gastrointestinal intolerance, ulcerative stomatitis, chemical hepatitis, minor liver fibrosis, infection, hematologic suppression, acute pneumonitis, reversible oligospermia, and cirrhosis. The liver toxicities are of the greatest concern. If proper dosage and monitoring are followed, serious toxic effects can be prevented from occurring.

Even children have arthritis.

Children experience a number of problems related to juvenile rheumatoid arthritis (JRA), including pain, stiffness, and loss of mobility that interferes with normal growth and development. Innovative nursing in a variety of settings is needed to manage the child with this chronic illness.

2019 American College of Rheumatology/Arthritis Foundation Guideline for the Treatment of Juvenile Idiopathic Arthritis: Therapeutic Approaches for Non- Systemic Polyarthritis, Sacroiliitis, and Enthesitis

To develop treatment recommendations for children with juvenile idiopathic arthritis manifesting as non- systemic polyarthritis, sacroiliitis, or enthesitis.Methods. The Patient/Population, Intervention, Comparison, and Outcomes (PICO) questions were developed and recined by members of the guideline development teams. A systematic review was conducted to compile evidence for the benefits and harms associated with treatments for these conditions. GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodology was used to rate the quality of evidence. A group consensus process was conducted among the Voting Panel to generate the nal recommendations and grade their strength. A Parent and Patient Panel used a similar consensus approach to provide patient/caregiver preferences for key questions. Thirty- nine recommendations were developed (8 strong and 31 conditional). The quality of supporting evidence was very low or low for 90% of the recommendations. Recommendations are provided for the use of nonsteroidal antiinflammatory drugs, disease- modifying antirheumatic drugs, biologics, and intraarticular and oral glucocorticoids. Recommendations for the use of physical and occupational therapy are also provided. Specific recommendations for polyarthritis address general medication use, initial and subsequent treatment, and adjunctive therapies. Good disease control, with therapeutic escalation to achieve low disease activity, was recommended. The sacroiliitis and enthesitis recommendations primarily address initial therapy and adjunctive therapies. This guideline provides direction for clinicians, caregivers, and patients making treatment decisions. Clinicians, caregivers, and patients should use a shared decision- making process that accounts for patients' values, preferences, and comorbidities. These recommendations should not be used to limit or deny access to therapies.