Burden and quality of life of informal caregivers of children with cerebral palsy

Abstract

Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables. Descriptors: Caregivers; Patient Care; Burnout, Psychological; Quality of Life; Cerebral Palsy. RESUMO Objetivo: analisar a sobrecarga e qualidade de vida de cuidadores informais de crianças com paralisia cerebral. Métodos: o estudo transversal envolveu 109 cuidadores recrutados em uma clínica de fisioterapia em um hospital terciário. A qualidade de vida e a sobrecarga foram avaliadas por meio do Personal Wellbeing Index e do Modified Caregivers’ Strain Index, respectivamente. Os dados foram analisados de forma descritiva e inferencial. Resultados: as médias do índice de sobrecarga e dos escores de qualidade de vida foram 11,85 ± 5,72 e 64,68 ± 8,03, respectivamente. A maioria (67,9%) dos cuidadores apresentou bem-estar pessoal razoável, enquanto cerca de um terço (33,0%) apresentou alta sobrecarga. Idade da criança (B=2,454; p<0,005) e ocupação dos cuidadores (B= -2,547; p=0,001) foram preditores de tensão do cuidador. Conclusão: cuidar de crianças com paralisia cerebral impôs uma sobrecarga substancial aos cuidadores e a idade da criança e a ocupação dos cuidadores foram variáveis preditoras. Descritores: Cuidadores; Assistência ao Paciente; Esgotamento Psicológico; Qualidade de Vida; Paralisia Cerebral. 1Federal Medical Centre. Abeokuta, Nigeria. 2School of Health Sciences, University of KwaZulu-Natal, Westville Campus. Durban, South Africa. 3Olabisi Onabanjo University Teaching Hospital. Sagamu, Nigeria. Corresponding author: Olufemi Oyeleye Oyewole Olabisi Onabanjo University Teaching Hospital, PMB 2001, Sagamu, Nigeria. Email: [email protected] EDITOR IN CHIEF: Ana Fatima Carvalho Fernandes ASSOCIATE EDITOR: Renan Alves Silva Abigail Oluwadunni Davis1 Oladapo Michael Olagbegi2 Kayode Orekoya1 Mathew Adekunle1 Olufemi Oyeleye Oyewole3 Modinat Adepoju1 Oluyemisi Soetan1 How to cite this article: Davis AO, Olagbegi OM, Orekoya K, Adekunle M, Oyewole OO, Adepoju M, et al. Burden and quality of life of informal caregivers of children with cerebral palsy. Rev Rene. 2021;22:e61752. DOI: https://doi.org/10.15253/2175-6783.20212261752 Davis AO, Olagbegi OM, Orekoya K, Adekunle M, Oyewole OO, Adepoju M, et al Rev Rene. 2021;22:e61752. 2 Introduction Population based studies from around the world report that the prevalence estimates of cerebral palsy range from 1.5 to more than 4 per 1000 live births of a defined age range(1). However, in a recent clinical overview, the incidence of cerebral palsy is between 2 3 per 1,000 live births with common risk factors including prematurity, small for gestational age, multiple pregnancy and maternal genitourinary infections(2). Caregiving is a normal part of being a parent but the care that children with cerebral palsy require can escalate the burden and stress on the caregiver(3). Living with a chronic condition like cerebral palsy not only affects the child but its effect can extend to other members of the child’s family especially the caregiver, who often are the child’s mother or father(4). Caregivers feel socially isolated and undergo physical stress, including lack of sleep, musculoskeletal aches and pains and hypertension. A caregiver of a child with cerebral palsy is one with the primary responsibility of encouraging a child to become independent in his or her daily activities(5), which requires sacrificing facets of his well-being to have enough time to care for the patients. The quality of life is related to an individual’s view of his/her place in life, in the context of the customs and value systems in which he/she lives, his goals, potential, standards and concerns(6). Measuring the quality of life of caregivers of children with chronic conditions provides insight into the challenges faced by these caregivers while caring for their children(7). As caregiving a child is often a life commitment, it may deteriorate health and health-related quality of life of informal caregivers. Families that have children with cerebral palsy need continuous special care, frequent medical check-ups and physiotherapy management(8). Similarly, a previous Nigerian study highlighted nine factors affecting the psychosocial well-being of carers of children with cerebral palsy, showing that stress of taking care of these children is a major factor(9). The provision of a high level of care required by a child can affect and impact the quality of life of the caregiver(5). For instance, caregiving may lead to decreased opportunities for socialization and formal employment, thus, informal caregivers are more often overwhelmed by the role. The quality of life of the caregiver of a child with cerebral palsy depend on certain conditions, experiences, and activities that threaten the effort of the caregivers in achieving their purpose(10). These factors characterize caregiver strain. Among these factors include the characteristics of the patient, the responsibilities performed, time spent in caregiving and the characteristics of the caregivers themselves(11). There is evidence to support the fact that the level of caregiver’s burden determines their quality of life(12). A study also revealed that increased caregiver’s burden leads to decrease in quality of life of cerebral palsy caregivers(5). However, there is little research done in the South-West region of Nigeria to determine the quality of life and burden of informal caregivers of the children with cerebral palsy, leading to the need for this study. Therefore, the objective of this study was to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy.