Challenges faced by guardians of children diagnosed With cancer admitted in Kenyatta national hospital Pediatric wards

Abstract

Background. Guardians of children with cancer play important role in realizing the ultimate goals of cancer treatment. However, not much has been done to better understand their unique roles, their care giving needs/challenges and the ways in which their needs can be addressed to improve their quality of life as well as for children they take care of in the wards. Objectives. To determine the challenges faced by guardians of children diagnosed with cancer admitted at Kenyatta National Hospital pediatric wards. Methods. This was a cross sectional employing qualitative and quantitative methods. The purpose of the study was to determine the roles, determine the challenges and coping mechanisms of the guardians and supporting factors utilized. The target population was all guardians of children with cancer admitted in the pediatric wards. Simple random sampling technique was used to draw the 96 participants from the population. Qualitative and quantitative data was collected using focused group discussions (FGD) and semi structured questionnaire from the 96 guardians. Data was analyzed using qualitative and quantitative methods. Computer package stata was used. Results The mean age of cancer patients at KNH was 5.9 years and 78.1 % were hospitalized for durations longer than 2 weeks. Leukemia (32.3%) and lymphomas (18.8%) were the leading diagnoses. Mothers (75%) were the primary caregivers and the average age of guardians was 33 years. Twenty seven (28.1 %) guardians felt that their role in the ward was unclear. Most (93.8%) guardians reported that they participated in inpatient care of children admitted with cancer. Buying drugs and bed making were the most commonly undertaken roles reported by 92.7% and 86.5% of the guardians, respectively. Seventy four percent of guardians reported being incorporated in decision making regarding the management of their child. Challenges faced by guardians were categorized into six groups: economic factors, support systems, institutional factors, psychosocial issues and treatment and procedures. In the bivariate analysis guardians aged 35-44 years had significantly lower odds of reporting challenges in care (Odds Ratio, 95% CI = 0.3, 0.1-0.7). Marital status was also significantly associated with reported challenges in cancer care with married guardians having lower odds (OR= 0.2, 95% CI 0.04-0.9) of facing challenges in care compared to single guardians. xiv Guardian age retained a significant association with inpatient care -challenges in the multi-variable logistic regression analysis. The adjusted odds of reporting challenges in care of cancer patients by guardians aged 35-44 years were 0.24 times (95% CI 0.09-0.67) that of guardians aged 15-24 years. Conclusion. The findings show that guardians play a significant role in the care of patients admitted with cancer and these roles span from patient care activities to inclusion in decision making related to patient management. Over one-half of guardians report facing at least one of the six main challenges identified in the study. Nurses prepare guardians for caregiver role but the level of preparation in di fferent areas show wide variation with poor performance noted in nurses' preparation of guardians to understand patient behavior and response to guardian worries. Guardians of patients often face substantial challenges in their care giving role and therefore nurses should continue efforts to explore and test interventions targeted at reducing strain or burden in guardians as caregivers Recommendations. The hospital should consider implement incorporation of family centered care in full; formulate standard operating procedures for care of guardians of children admitted with cancer: formulation of assessment tool for guardian strain; expand palliative care patient support services to cover the pediatric all oncology patients and their families and lastly but not least plan to expand the physical facilities for cancer patients to ensure comprehensive care.