The understated issue of caregiver anxiety for pediatric surgical hospital admissions: opening the blindfolds

Abstract

Key message: Hospitalization is a nerve-wrecking experience for patients and their families (Lam et al. in Int J Nurs Stud 43:535-545, 2006). The financial burden of hospitalization is the prime perpetrator, however, multiple other factors also contribute significantly to the underlying problem which can be eliminated by efforts of the doctors and other healthcare workers and by modifying the hospital policies (Bassett et al. in J Hosp Med 15:652-658, 2020). We can reduce the number of outpatient visits and switch to telemedicine for rescheduling the cases. The pre-anaesthetic clearance and all the relevant investigations can be done on a single OPD visit thereby reducing the requirement of repeated commutes to the hospital. The free of charge category of the hospital can be extended to the patient requiring prolonged hospital stay or for solid tumor patients who require repeated hospital admissions for chemotherapy. Association with child welfare Non-government organizations (NGO's) can also solve major monetary issues for parents of patients suffering from complex congenital anomalies and solid tumors. The pre-operative NPO period can be shortened to 2-4 h, antibiotic use can be completely avoided or minimized in clean elective cases, children living in the same city requiring dressing/catheter removal after a few days (e.g. hypospadias, posterior sagittal anorectoplasty) can be discharged and called for a OPD visit after 5-7 days if the parents are willing to take care of the child at home. Patients undergoing minor elective surgeries can be followed up on telemedicine visits only. Parents of patients suffering from complex congenital anomalies should be referred to a clinical psychologist and receive periodic counseling sessions. A child psychologist should also be included in the management of cases which have social stigma attached as bladder exstrophy, anorectal malformations, spina bifida requiring lifelong follow-up and bowel washes or repeated clean intermittent catheterisation. Anxiety assessment questionnaires must be incorporated in the management of chronic patients and high-risk parents must be identified (Tiedeman in J Pediatr Nurs 12:110-119, 1997). We hereby propose adoption of family centric approach during the management of a patient as this may minimize the overall burden of the hospitalization of the family.

Background: Hospital admission of a child leads to a myriad responses in the parents. Thus, we conducted a hospital-based cross-sectional study to determine the prevalence of anxiety and depression among the primary caregivers of hospitalized children and the factors causing it.

Methods: Parents of 228 children admitted in the pediatric surgery ward at a tertiary care hospital were interviewed using the HADS-A and Hamilton Anxiety Questionnaire to assess the prevalence of anxiety and depression during hospital admission. They were also subjected to a questionnaire comprising of 52 questions spread over 5 segments-demographic details, monetary burden, effect on siblings and other family members, practical problems faced, and surgery-specific concerns.

Findings: Thirty percent of the parents had severe anxiety and 20% developed depression due to the hospitalization of their child. We tested the association of this depression and anxiety against 56 variables in this study. Exorbitant loan amounts (r^a - 0.449, r^d- 0.557), repeated commute to the hospital (r^a - 0.274, r^d - 0.231), monetary burden (r^a - 0.193, r^d - 0.186), repetitive sampling (r^a - 0.248, r^d - 0.203), prolonged absence from work (r^a - 0.440, r^d - 0.424) were found to be the chief perpetrators of this anxiety and depression.

Interpretation: The burden of anxiety and depression in the primary caregivers of pediatric surgical patients is enormous. Identification of the implicating factors is essential. Simple reforms such as reduction in the number of OPD visits, extension of free of charge category, association with non-governmental organizations and involvement of a clinical psychologist can significantly meliorate the hospital journey of both the patients and their parents. (r^d-correlation coefficient of for depression, r^a-correlation coefficient of for anxiety).

Keywords: Anxiety questionnaire; Caregiver anxiety; Hospital anxiety; Parental experiences; Pediatric surgery.