Care demands experienced by family caregivers of children with Primary Immunodeficiency

Abstract

Objective: to understand the experiences of family caregivers of children with Primary Immunodeficiency in view of care demands. Methods: a qualitative research. Data collection was subsidized by an open interview with five family caregivers, and the data were analyzed using the Bardin Content Analysis technique, thematic modality. The Callista Roy’s Adaptation Model of Nursing was used to interpret the data. Results: from participants’ reports, the following categories emerged: Maternity: facing adversity; Remodeling of daily life; The Social Support Network resource. Final considerations: family caregivers experience several feelings such as anguish and low self-esteem due to the fear of losing their child and the routine of illnesses and hospitalizations, in addition to needs that are often not reached due to incompatibility with the family budget. The Social Support Network is strengthened for most caregivers, playing an essential role as a coping strategy for caregivers.

Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers’ Perspective: A Qualitative Study

“…Parents who demonstrated high levels of medical knowledge often use “jargons” and attempted to find answers individually to their medical questions. This behavior has been reported in other studies ( 3 , 8 ).…”

“…The recurrence of ill feelings was observed in the extracted data, including the burden imposed by hospitalization and fear of the children’s illnesses and anguish for the inability to prevent the current state of life. This finding suggests that living and caring for patients with chronic and potentially fatal diseases are bad experiences ( 8 ).…”

“…Parents have to find additional jobs to financially cover their children’s expensive medications. The family budget may not be sufficient at the pursuit and maintenance of a healthy lifestyle, which includes the basic needs of the family, such as food and leisure ( 8 ). Governmental support is essential to the assurance of financial support to these families.…”

“…School absenteeism has raised concerns about the negative effects of PIDs on children. Missing social events and public gatherings, as a result of families living in isolation, reflects the great sense of parental responsibility on the need for modifications and abdications for children with PIDs ( 8 , 11 ). The lack of support can lead to the physical and psychological exhaustion of caregivers, in addition to social isolation ( 8 ).…”

O Terapeuta Ocupacional e o Cuidador na construção de material lúdico em uma Enfermaria Pediátrica

“…Esse dado é semelhante aos da literatura que indicam , em sua maioria, que os cuidadores são do sexo feminino, o que pode ser justificado pelo fato que o cuidado ser atribuído como uma função feminina na sociedade, além do instinto materno que direciona as mulheres a abandonarem suas demais funções e cuidarem dos filhos de forma integral. Também e observada uma maior sobrecarga sobre as cuidadoras (Pereira, Matsue, Vieira, Pereira, 2014;West, Vasconcelos, Coriolano-Marinus, Araújo, 2020;Pinheiro et al, 2021).…”