Family and Caregivers

Abstract

People of African descent and those identifying as Black and/or Latino experience a disproportionate burden of sickle cell disease (SCD), a chronic, serious blood condition. Caregivers of children with chronic medical conditions report worse mental health than others. Disease associated stressors can affect caregivers of children with SCD. We conducted a systematic review to summarize the prevalence of mental health symptoms in caregivers of children with SCD and if symptoms were associated with the child’s SCD. This review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. We searched PubMed, PsycINFO and Embase identifying 1,322 records of which 40 met criteria for inclusion in this review. Findings suggest caregivers experience mental health problems and poorer mental health was associated with worse child SCD-related outcomes and treatment adherence. Efforts should be made to routinely screen SCD caregiver mental health and to refer accordingly.

Keywords:…

Abstract

Sickle cell disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD will hereafter be referred to as sickle cell anemia (SCA) as this is the term our patients and their families prefer. There are approximately 5000 Canadians living with SCA including children. Pediatric SCA patient education can: improve knowledge, decrease hospitalization, improve medication possession ratio, lead to better SCA-related functioning, and lower pain impact. Innovative educational materials were developed to improve knowledge and self-efficacy regarding the illness management of patients and parents/guardians. Patients (n = 5; aged 8–18) with SCA and parents (n = 5) of patients (aged 0–18) were recruited via flyers sent directly to patients and distributed through partner patient organization Sickle Cell Awareness Network of Saskatchewan. Patient and parent focus groups were held separately over Zoom to receive feedback for the video. An additional interview was held for…

Chronic pain is the most common complication affecting adults with sickle cell disease (SCD).1 Pain profoundly affects people’s quality of life, functional ability, and health care utilization. Clinicians are often unsuccessful at addressing chronic pain in SCD, especially among the large number of patients for whom nonopioid analgesics aren’t sufficient and those who have developed opioid tolerance. Why aren’t we doing better?

We believe the medical community is looking at sickle cell pain through the wrong lens — treating it as a hematologic problem, while overlooking the neurologic, psychological, and social aspects of chronic pain. Given the current understanding of the neuropsychology of pain, the health care system has the ability to manage sickle cell pain more effectively. Doing so will require accepting a broader understanding of the experience of pain and devoting adequate resources to addressing its multiple dimensions.

The biopsychosocial model helps capture people’s experience of chronic pain…

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