The psychological impact on family caregivers of children and adolescents with sickle cell anemia

Abstract

Sickle cell anemia represents an aversive context, placing the family in a situation of vulnerability. This study investigated the psychological impact of sickle cell anemia on family caregivers of children and adolescents with this disease. A research with a quantitative approach followed by a survey was carried out, with a non-probabilistic sample of 100 caregivers who answered the instruments for measuring family functioning, disease-related stress, coping, anxiety, and depression. Clinical and sociodemographic characteristics were obtained from medical records and specific protocols. Caregivers of children with late diagnosis presented high disengaged coping scores, and minimum depression; early diagnosis was associated with mild depression. Family functioning domain scores were lower in families with younger children. Regression analyses showed that primary control coping indicates lower depression scores, and involuntaryengagement is a predictor of depression/anxiety. This study contributes to the understanding of the relationship between psychological, clinical, and sociodemographic variables in the context of sickle cell anemia.

The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease

“…Thus, findings from the current study indicate caregiver resilience and the use of adaptive coping strategies. These results are somewhat consistent with findings from a recent study of coping among caregivers of youth with SCD in Brazil,42 although the study indicated lower proportion scores for caregiver PCE coping compared with the current study. Findings from the current study are also comparable to findings from other chronic illness populations; proportion scores for caregiver PCE and disengagement coping in the current study are similar to RSQ coping proportion scores among caregivers of youth with asthma,22 type 1 diabetes,59 and cancer 55.…”

“…Proportion scores are used to control for response bias as well as individual differences in base rates of item endorsement; their use has been supported in the coping literature 40,41. The RSQ has been used in SCD39,42 and its factor structure has been supported by confirmatory factor analysis studies in a range of diverse samples 19. The RSQ has also demonstrated acceptable psychometric properties in various disease populations 43,44.…”

Effect of reading an educational booklet about sickle cell disease on family members' knowledge

“…Pesquisa realizada salientou constantes anseios dos familiares cuidadores de crianças com doença falciforme para compreender os diferentes aspectos que permeiam essa enfermidade sobretudo no que se refere ao enfrentamento e tratamento necessários no cotidiano, os quais podem, por sua vez, gerar eventos estressantes como ansiedade e depressão (18) .…”

Perspectiva do cuidador familiar frente a criança com anemia falciforme: uma revisão integrativa

“…No estudo realizado por Caprini & Motta (2021), apesar da assistência continua ofertada pelo cuidador familiar, e seus medos de situações agravantes, não foi evidenciado predomínios de ansiedade ou depressão, ou seja, os familiares possuem um ajuste emocional e mental estável, o que proporciona estabilidade para desempenhar suas atividades cotidianas. (Garioli, Paula, Enumo, 2019).…”