Exploring the perceptions of the quality of life of mothers raising a child with cerebral palsy

Abstract

Background: The responsibilities that accompany the care of a child with cerebral palsy (CP) are an extreme form of parenting that comprises a lot of atypical tasks. To provide suitable care in a long-standing condition like CP can impede on a mother’s quality of life (QOL). This study sought to explore the perceptions of the QOL of mothers raising a child with CP. Method: Participants in this qualitative descriptive research were mothers of a child aged less than eighteen years and diagnosed with CP. A purposive sampling was opted in recruiting mothers who were enrolled in a university occupational therapy (OT) based programme and another attending a hospital OT based programme in Malta. Data was collected using an in-depth semi structured interview conducted online and lasted for about forty-five minutes to one hour. Data was analysed thematically and completed through structural coding. Results: Participants gave a discussion about their QOL raising a child with CP. Factors mentioned were: long hours spent in activities of daily living, school closures due to Covid19, limited extra-curricular activities geared for children with special needs, ramification of child’s condition on mother’s socialisation, maternal unemployment, lack of public’s understanding of CP, the need to always plan ahead whenever commuting, high expenses, change in routine due to Covid-19, input of extended family and lack of information given by health care professionals (HCPs). All these factors were effecting mother’s QOL. Conclusion: This study indicates that raising a child with CP can deeply impact a mother’s QOL. Participant’s experiences were unique from each other as they shared positive outlook in the upbringing of their child with CP. However, mothers face a lot of challenges on a daily basis stemming from the disability of their child. Therefore, OT should train and encourage safe carrying of activities of daily living, be a link for the creation of support networks, advocate, assist in prioritising social endeavours and educating the public about CP so as to enhance mothers QOL.