Indian J Pediatr (November 2015) 82(11):1006–1011 DOI 10.1007/s12098-015-1762-y
ORIGINAL ARTICLE
Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study Ankush K. Khanna 1 & Anusha Prabhakaran 2 & Priyanka Patel 2 & Jaishree D. Ganjiwale 3 & Somashekhar M. Nimbalkar 1,3
Received: 14 January 2015 / Accepted: 1 April 2015 / Published online: 15 May 2015 # Dr. K C Chaudhuri Foundation 2015
Abstract Objectives To explore social, psychological and financial burden on caregivers of chronically diseased children. Methods Participants were recruited from ambulatory and hospital areas in pediatrics department following informed consent. Parents who were caregivers of children 18y or below in age with chronic illness were included. Sociodemographic details were collected using a semi structured questionnaire, adapted from Family Burden Interview Schedule (FBIS). The psychological well-being of caregivers was assessed using Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder (GAD-7). Descriptive analysis and ANOVA was done for comparing mean scores of responses to analyze financial, psychological and social burden across different diagnosis. Results A total of 204 (89 females:115 males) participated. Only 27% were receiving some benefits from government or hospital side. No depressive symptoms were reported by 25% caregivers, while 37% reported mild and 38% moderate to severe depressive symptoms. No anxiety symptoms were reported by 33%, while 50% reported mild and 17% moderate to severe anxiety symptoms. No association was seen between gender of the caregiver and depressive or anxiety symptoms. Significantly higher financial and social burden was seen in
* Somashekhar M. Nimbalkar
[email protected] 1
Department of Pediatrics, Pramukhswami Medical College, Karamsad, Anand, Gujarat 388325, India
2
Department of Psychiatry, Pramukhswami Medical College, Karamsad, Gujarat, India
3
Central Research Services, Charutar Arogya Mandal, Karamsad, Gujarat, India
cerebral palsy and cancer groups vis-a-vis other diseases, being least in thalassemia. Disruption of routine life was highest in cancer group caregivers followed by those in cerebral palsy group. Conclusions Most caregivers reported moderate depressive symptoms and mild to moderate anxiety symptoms. Cerebral palsy caused more social and financial burden on family vis-avis thalassemia. Social and financial burden on families of remaining diseases was comparable. Keywords Chronic diseases . Caregiver . Financial burden . Depression . Anxiety
Introduction Chronic illness is defined as a condition that either interferes, or is likely to interfere with an individual’s daily functioning for at least three months of a year, or a condition that will require hospitalization for more than one month in a year [1]. Chronic illnesses seen in pediatric and adolescent population include conditions like anemia, cerebral palsy, thalassemia, epilepsy, chronic renal diseases, diabetes mellitus, chronic respiratory diseases, hemophilia, neuromuscular disease, cancers etc. [2–5]. Stress is a non-specific response of the body to any excessive environmental request [6]. Family with a child who is suffering from chronic illness suffer a significant burden of care, increasing the demands and reorganization of roles [7]. In addition, each parent’s perception of their psychosocial situation, as well as their reaction to it, may affect the parent–child relationship and the child’s functioning. Parents appear to need better support structures to help them cope with the difficulties encountered during all stages of their child's illness [8, 9].
Indian J Pediatr (November 2015) 82(11):1006–1011
Parents of children with chronic disease require problem solving, information seeking financial and practical help, especially when their children are suffering from physical weakness, uncertainty and disruption to peer support. Multidisciplinary approach is needed for the parents of such children to improve their outcomes [8]. Most caregivers feel inadequately trained for the skills that they need to perform, and have never received any formal education in care giving [10, 11]. Most caregivers feel need of more information regarding support services and try to seek the same from their doctors or internet [11]. Interventions improve clinical outcomes, care and quality of life of caregivers [12]. Establishing support groups and supportive care at local levels would help reduce the burden on families of patients with chronic illness to a relatively greater extent [13].
Material and Methods Participants were recruited from the ambulatory and hospital areas in the department of pediatrics. The study participants were approached in the out-patient department of pediatrics while they were waiting to see their respective physician and in the ward. After describing the study, consent was taken and they were informed that the interview would approximately take 20 to 25 min. The socio-demographic details about the parent, family, and child were collected using a semi-structured questionnaire. The social and financial burden was assessed using a semi structured questionnaire which is adapted from Family Burden Interview Schedule (FBIS); the adapted questionnaire was translated in Gujarati [14]. The questionnaire assessed the perception of parent about financial burden, disruption of routine family activities, disruption of family leisure and disruption of family interaction. The psychological wellbeing of the parents was assessed using validated Gujarati translations of Patient Health Questionnaire (PHQ-9) [15] and Generalized Anxiety Disorder (GAD-7) [16]. These are standardized scales to screen for depressive and anxiety features in parents. The study was done after the approval of the institutional ethics committee. Caregivers of children of age group 18y or below with chronic illness like anemia, cerebral palsy, thalassemia, epilepsy, chronic renal diseases, diabetes mellitus, chronic respiratory diseases or cancers were included in the study. Apart from the diseases mentioned above if there were children with other chronic illnesses like chronic meningitis, hypothyroidism, heart problems, hemophilia etc., then their parents were also included. Descriptive analysis was done to assess the social, economic and psychological burden on parents of child with chronic illness. Chi square test was done for comparing number of responses on the questions of GAD7 and PHQ9 in six common chronic diseases to analyze the burden across different diagnosis. ANOVA and post hoc tests were applied to look for differences in financial and social burden.
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Results A total of 204 caregivers (89 Females: 115 Males) were interviewed. Mean (SD) age of the caregivers responding in the study was 33.79 (8.25) y and that of the affected children (93 Females: 111 Males) was 7.11 (4.78) y. There were 20 cases of anemia, 31 cerebral palsy, 28 thalassemia, 40 epilepsy, 15 chronic renal diseases, 15 diabetes mellitus, 30 chronic respiratory diseases, 6 cancer and 19 of other chronic diseases. Forty-five percent families were below poverty line. Majority of caregivers were either semiskilled workers (37.7%) or housewives (35.8%) and majority of caregivers (83%) had received secondary or higher education. Caregivers belonged to 2 religions – 114 were Hindus and 90 were Muslims. Majority of them (54%) were rural and 46% were urban population. Among the patients, 75% of families had two or fewer children. Majority (44%) had a single sibling and 30.9% were single child in the family. More families were joint (136) than nuclear (68). Majority of families (70%) had grandparent (s) living with them. Around 10% of families also had some other chronically diseased member. Number of families below poverty line was as high as 45.6%. Only 27.5% of families were receiving some kind of benefit from government or hospital side. There were 87.3% of families who had a ration card. Majority (75%) of families either used personal vehicle or rickshaw to come to the hospital. Overall 38% of caregivers had moderate to severe depressive symptoms, 37% had mild depressive symptoms, 25% did not show any depressive symptoms. Majority (50%) of caregivers showed mild anxiety symptoms, 17% had moderate to severe anxiety symptoms, whereas 33% did not show any anxiety symptoms. Incidence of depressive and anxiety symptoms in each disease is shown in Table 1. The present results suggest significant psychological distress and burden being experienced by the caregivers of children with chronic illness (Table 1). There was no sex predilection for depressive or anxiety symptoms incidence. Nor was it influenced by the age of the caregiver or family income. As seen in Table 2 there was significantly more (p
