The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea

Silva, Luiz Bernardino Lima da; Ivo, Maria Lúcia; Souza, Albert Schiaveto de; Pontes, Elenir Rose Jardim Cury; Carvalho, Alexandra Maria Almeida; Araújo, Olinda

doi:10.5581/1516-8484.20120070

Cited by 13 publications

(19 citation statements)

References 20 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The caregivers with a greater burden had a worse QoL. 7 Lower QoL scores were also seen in subscales regarding depressed mood, daily activity and vitality in 54 caregivers of children with SCD in the Netherlands. 21 Considering the perceptions on oral QoL, greater agreement was observed between parents and adolescents than between parents and younger children.…”

Section: Discussionmentioning

confidence: 93%

“…This result confirmed other previous studies conducted with SCD children, which showed that the longer the duration of care, the worse the QoL of SCD caregivers. 6,7 In addition, disease complications may interact with the caregiver's ability to manage proper functioning of the family and QoL. A convenience sample composed of parents of children with SCD from a hospital center (Hemominas) was used to conduct this study.…”

Section: Discussionmentioning

confidence: 99%

“…6 The emotional well-being of parents is fundamental to promoting a good quality of life (QoL) and the health maintenance of children with SCD. 6,7 However, the task of looking after someone without being properly prepared can cause personal and family conflicts and even stress, embarrassment, fatigue and depression for caregivers, and may consequently influence their QoL. 8 Studies of parents of children with SCD have found that these parents have a poor QoL, especially regarding self-esteem, physical functioning and overall perception of health.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

The impact of the oral condition of children with sickle cell disease on family quality of life

et al. 2016

View full text Add to dashboard Cite

The aim of this study was to assess the impact of oral conditions of children with sickle cell disease (SCD) on their parents' quality of life (QoL). A cross-sectional study was performed with parents of outpatients suffering from SCD at a hematology referral center in Belo Horizonte, MG. A qualified dentist performed an intraoral exam. The Family Impact Scale (FIS) was used to assess the parents' perception of QoL. The parents answered some questions regarding sociodemographic and medical information about their children. The dmft/DMFT score, DAI, gum bleeding and SCD severity were evaluated in terms of their impacts on the overall mean FIS scores and subscale scores. The chance of more frequent impacts was greater in parents of adolescents (OR = 2.04; 95%CI = 1.2, 3.4) than of younger children. Dental caries (dmft/DMFT ≥ 1) had a negative impact on

show abstract

Section: Discussionmentioning

confidence: 93%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

The impact of the oral condition of children with sickle cell disease on family quality of life

et al. 2016

View full text Add to dashboard Cite

show abstract

“…One study showed that caregivers tend to become more stressed and tired when the patient is not sleeping well or is not responding positively to treatment. 16…”

Section: Introductionmentioning

confidence: 99%

Mucopolysaccharidosis

Guarany

Vanz

Wilke

et al. 2015

Journal of Inborn Errors of Metabolism and Screening

View full text Add to dashboard Cite

The mucopolysaccharidoses (MPSs) are a group of rare genetic diseases caused by a deficiency of specific enzymes involved in catabolism of glycosaminoglycans, which causes multisystem abnormalities. Quality of life (QoL) is directly associated with physical, mental, and psychological well-being and with social relationships, including family and friends. Aims: To evaluate the QoL of caregivers of patients with MPS. Methods: Cross-sectional study using a convenience sampling strategy. The sample comprised mothers of patients with MPS seen at the

show abstract

“…2 The socioeconomic status, social support networks and the characteristics of disability care in the country also influence the quality of life (QoL) of the caregiver. Few studies have accurately outlined the disease characteristics of patients with MPS 3 associated disorders 4,5 and the psychological profile of their caregivers, so it has been found in different patient associations and organizations that work for these diseases, caregivers burned, poor QoL, psychological distress and stress, and insomnia due to most of them have to be alert at night keep watching patients do not have breathing difficulties while sleeping or sleep apnea. The inheritance pattern of mitochondrial diseases and the lack of information about the diseases can affect the QoL of mothers and can increase the anxiety and burden of the caregiver 6 , mainly related to functionality, vitality, and mental health.…”

Section: Introductionmentioning

confidence: 99%

Mucopolysaccharidoses: Psychosocial Vulnerability of Family Caregiver

Journal¹

2020

MNJ

View full text Add to dashboard Cite

Background: The majority of caregivers are family members and within the symptoms that the caregiver may present, there are manifestations of stress, psychological state of overload, stress or discomfort caused by the continuous provision of care for the family member, feelings and negative perceptions regarding their caring function. Objective: The purpose of this research is to study the psychosocial vulnerability of family caregivers of patients with Mucopolysaccharidoses (MPS). Methods: This study is based on a mixed method with a cross sectional and a descriptive approach. The first stage was quantitative and the second stage was qualitative, both of them to explore the psychosocial vulnerability of a group of family caregivers of patients (n=111) with MPS belonging to the Colombian association of patients with lysosomal storage diseases ACOPEL by its acronym in Spanish. This study collects quantitative data using the patient admission request format from ACOPEL, employed to obtain relevant sociodemographic variables: Gender, Age, Marital status, Education, Occupation, living area, type of housing, live with, socioeconomic stratum, monthly income and time spent as a caregiver. And this study collects qualitative data using a structured interview held to psychologists and healthcare professionals belonging to ACOPEL. Results: The results show that most of them are women, relatives in a relationship or married; most of them belonging to a low socioeconomic stratum and a low professional education. The categories of analysis revealed were the attitude is towards illness, taking account diagnosis and health staff, support networks and psychoeducation. Secondly, the impact of care work on the physical and psychological health of female caregivers. Third, coping resources and finally the double mother role-caregiver and her emotional bond with the patient. Conclusion: In conclusion, the attitude and knowledge towards the disease depend on the diagnosis and the prognosis according to the type of MPS. It is important more research the psychosocial aspects and vulnerability of family caregivers in patients with MPS to develop evidence-based knowledge, psychoeducation, and, appropriate interventions.

show abstract

The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea

Cited by 13 publications

References 20 publications

The impact of the oral condition of children with sickle cell disease on family quality of life

The impact of the oral condition of children with sickle cell disease on family quality of life

Mucopolysaccharidosis

Mucopolysaccharidoses: Psychosocial Vulnerability of Family Caregiver

Contact Info

Product

Resources

About