Articles: caregivers.
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Pediatr Crit Care Me · Dec 2024
Caregiver Perspectives on Provider Continuity During Prolonged PICU Hospitalizations: A Single-Center Qualitative Study, 2021-2022.
To improve continuity of care, some PICUs assign a continuity attending (CA) physician for children with prolonged hospitalizations. Little is known about how this intervention impacts familial caregivers' experiences. The objective of this study was to provide in-depth descriptions of family perspectives about continuity of care during prolonged PICU hospitalizations for children with and without a PICU CA. ⋯ As PICU patient medical complexity and length of stay increase, familial caregivers' needs transition from understanding day-to-day management to navigating care team transitions and partnering with providers to develop long-term care plans. Targeted interventions to increase provider continuity that consider relational, informational, and management continuity are needed to optimize patient outcomes and family experiences.
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Severe burn injuries (SBIs) are known to pose a significant burden on patients, caregivers, and the healthcare system. Yet, scarce data on the short and long-term clinical and economic impacts of these injuries limit the development of evidence-informed strategies and policies to better care for these patients. To fill in this gap, we adapted a previously validated self-reported out-of-pocket cost measurement questionnaire, the Cost for Patients Questionnaire (CoPaQ), to the severe burn injury survivor context. ⋯ Summative content analysis was used to identify items needing to be modified, deleted, or added. Based on this information, a preliminary version of a Burn Injury Cost for Patients Questionnaire (BI-CoPaQ) was developed and subsequently pre-tested on a small sample of SBIs survivors. Further validation of this tool will be required before BI-CoPaQ can be used as the standard for the estimation of the financial burden of SBIs in this population.
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Patients with impaired renal function are at an increased risk of dehydration due to vomiting, diarrhoea or fever (so-called sick days). Temporary medication adjustment during sick days is necessary and current initiatives and information materials for patients are available. However, the knowledge, experiences and information needs of patients and informal caregivers about sick day guidance are unknown. ⋯ Patients with impaired renal function and informal caregivers have little knowledge about and experience with dehydration and safe use of medication during sick days. General practitioners and pharmacists should involve the care network, including informal caregivers, when implementing sick day guidance.
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We hypothesized that patients with amyotrophic lateral sclerosis (ALS) face a dilemma between motivation to live and difficulty in living, and brain-machine interfaces (BMIs) can reduce this dilemma. This study aimed to investigate the present situation of patients with ALS and their expectations from BMIs. ⋯ These results clearly revealed a serious dilemma among patients with ALS between motivation to live and their anxiety about TLS and caregiver burden. Patients expected BMI to reduce this dilemma. Thus, the development of better BMIs may meet these expectations.
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This study explored whether socioeconomic factors and child behavior are associated with caregiver stress in families of children with disabilities aged 2 to 17 living in Jordan. This study employed a cross-sectional design using an online survey. The survey, distributed mainly on social media, consisted of questions on demographics, child disability using the Washington Group Short Set on Functioning (WG-SS), caregiver stress levels using the Kessler Psychological Distress Scale (K6), and child behavior using the Strengths and Difficulties Questionnaire (SDQ). ⋯ Having a child with a higher disability score and more behavioral problems was associated with higher caregiver stress. Our findings highlight the importance of developing a comprehensive evaluation process to identify how child disability affects different areas of caregivers' lives, and interventions to address caregiver stress. We recommend implementing policies to increase access to mental health services and parenting resources, particularly for young and unemployed caregivers.