Emotional distress among parent caregivers of adolescents with sickle cell disease: Association with patients and caregivers variables

Ohaeri, Jude U.; Oluwaniyi, Stephen O; Olagunju, Tinuke O; Chaimowitz, Gary; Olagunju, Andrew T

doi:10.1177/1359105320935986

Cited by 15 publications

(14 citation statements)

References 47 publications

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“…More than one-third of the participants in the qualitative study complained of psychological stress, which sometimes deteriorated their physiological and mental well-being. These results are consistent with a cross-sectional study from Saudi Arabia, which showed that emotional health is one of the most affected aspects of caregivers’ quality of life [ 41 ], and at least four studies from Africa, where the burden of SCD is also the highest in the world, that show a high psychological burden on the caregivers of patients with SCD [ 20 , 42 – 44 ].…”

Section: Discussionsupporting

confidence: 88%

“…Caring for an adolescent with a chronic illness adds significant stress and responsibility to caregivers, affecting them emotionally and mentally [ 19 ]. Anxiety, depression, exhaustion, and poor sleep are the most common ailments reported by caregivers [ 20 ]. Apart from the heavy emotional and mental toll, caregivers’ social lives are also impacted [ 21 ].…”

Section: Introductionmentioning

confidence: 99%

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Caregivers’ experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain

et al. 2022

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Objective This study aimed to determine caregivers’ perspectives on difficulties encountered while seeking care for adolescents with sickle cell disease (SCD). It explored the social, emotional, and financial impact of caring for an adolescent with SCD on their caregivers. Study design A mixed-method study in a major tertiary care hospital in Bahrain was conducted between June and August 2019. Cross-sectional questionnaires and thematic analyzed interviews were performed with 101 and 18 Bahraini caregivers of adolescents with SCD (aged 10–18 years), respectively. Results Lack of parking lots (52.5%) and traffic jams (27%) were identified as the most common challenges in seeking hospital care for adolescents with SCD. These difficulties, including prolonged waiting in the emergency room, discouraged more than half of the caregivers who preferred to seek care from smaller healthcare centers. Most caregivers reported receiving a high degree of support from their families, who emotionally encouraged them to facilitate patient care (73.3%). Therefore, their relationships with their friends, colleagues, and relatives were not significantly affected. Catastrophic health expenditure occurred in 14.8% of caregivers. Qualitative themes that emerged were A) the intricacy of caring for adolescents with SCD, B) dissatisfaction with hospital facilities, and C) insufficient healthcare services, wherein caregivers reported adolescents’ experiences with services during hospital visits. Subthemes for the intricacy of caring for adolescents with SCD were 1) the psychological tragedy, summarizing the initial caregivers’ feelings after the confirmed diagnosis, 2) caregiving hardships that described the caregivers’ emotional and health burden while accepting and adjusting to the disease, and 3) the cost of care on families, which highlights the financial burden of the disease on families. Conclusion The caregivers of adolescents with SCD experienced several overwhelming challenges, including problems in accessing healthcare and receiving medical services, in addition to influences on the emotional, financial, and social aspects of their lives.

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Section: Discussionsupporting

confidence: 88%

Section: Introductionmentioning

confidence: 99%

Caregivers’ experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain

et al. 2022

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“…Mental health responses may have reflected the addition of pandemic‐associated burdens on caregivers and youth living with SCD and stressors associated with high social vulnerability. 25 A survey of adult childhood cancer survivors reported more frequent pandemic‐related health concerns and social isolation compared to unaffected siblings. Those data suggest that mental health concerns may have been exacerbated during the pandemic by feelings of vulnerability from chronic illness.…”

Section: Discussionmentioning

confidence: 99%

Mental health assessment of youth with sickle cell disease and their primary caregivers during the COVID‐19 pandemic

Green

Manwani

Smith‐Whitley

et al. 2022

Pediatric Blood & Cancer

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Youth with sickle cell disease (SCD) and their caregivers are susceptible to stress and depression, perhaps exacerbated by pandemic-associated health and economic concerns. Most of the 50 youth-caregiver dyads enrolled in the multisite trial, Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT), took an online survey of self-reported mental health symptoms and food insecurity during the 2020 COVID-19 pandemic. Compared to largely pre-pandemic results, prevalence of mental health symptoms in dyad members appeared to have shifted: fewer youth and more caregivers were affected during the pandemic; many of both groups lacked optimism.

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“…Indeed, emotional distress is common in caregivers of children with SCD, which is partially attributable to the disruptions in daily routines that arise as a result of frequent hospitalizations. 5 While psychosocial reactions to a child's illness are typically considered normative in the context of medical demands, many families of children with chronic illnesses, such as SCD, are often resilient in the face of significant stressors associated with illness and treatment. 6 Regardless of how patients and families may present in medical settings, it is important to assess the biopsychosocial needs for all families.…”

Section: Introductionmentioning

confidence: 99%

“…Managing a chronic medical illness can be stressful and impact many levels of family functioning. Indeed, emotional distress is common in caregivers of children with SCD, which is partially attributable to the disruptions in daily routines that arise as a result of frequent hospitalizations 5 . While psychosocial reactions to a child's illness are typically considered normative in the context of medical demands, many families of children with chronic illnesses, such as SCD, are often resilient in the face of significant stressors associated with illness and treatment 6 .…”

Section: Introductionmentioning

confidence: 99%

Psychosocial risk and health care utilization in pediatric sickle cell disease

Woodward

Johnson

Cohen

et al. 2021

Pediatric Blood & Cancer

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Introduction: Pain and complications related to pediatric sickle cell disease (SCD) are associated with higher health care utilization. In other pediatric chronic conditions, psychosocial screening can help identify children and families at risk of increased health care utilization to guide resource allocation, address treatment needs, and improve care. This study aimed to investigate the utility of psychosocial screening in predicting increased health care utilization among youth with SCD.Methods: Youth with SCD (n = 74, 8-18 years) and their parents were recruited from comprehensive SCD clinics. Parents completed the Psychosocial Assessment Tool (PAT), which categorized family psychosocial risk into one of three categories: Universal (minimal distress), Targeted (elevated distress), and Clinical (persistent distress).Youth reported on their pain characteristics, and health care utilization was extracted from medical chart review. Differences in health care utilization were evaluated using analysis of variance (ANOVA) and moderation analyses.Results: Based on PAT risk, families were categorized into Universal (56.8%), Targeted (29.7%), and Clinical (13.5%) risk groups, with no significant group differences across demographic variables. Patients in the Targeted group reported significantly higher pain frequency than those in the Universal group (F[2, 66] = 3.7, p < .05). The association between pain frequency and health care utilization significantly varied on the basis of psychosocial risk, such that Clinical psychosocial risk strengthened the connection between pain frequency and health care utilization (β = .2, t = 2.1, p < .05). Conclusions:Integrating the PAT into routine clinical care may help health care providers identify families in need of greater psychosocial or medical support to further optimize SCD management.

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Emotional distress among parent caregivers of adolescents with sickle cell disease: Association with patients and caregivers variables

Cited by 15 publications

References 47 publications

Caregivers’ experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain

Caregivers’ experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain

Mental health assessment of youth with sickle cell disease and their primary caregivers during the COVID‐19 pandemic

Psychosocial risk and health care utilization in pediatric sickle cell disease

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