Background/Objectives: While the number and severity of comorbidities affecting survivors of craniopharyngioma (CP) are well documented, little is known about the perspectives of caregivers and survivors regarding treatment priorities. This study aim...
Cannabidiol (CBD) is a non-intoxicating chemical in cannabis plants that is being investigated as a candidate for treatment in Fragile X Syndrome (FXS), a leading known cause of inherited intellectual developmental disability. Studies have shown that...
In genomics, perceived and personal utility have been proposed as constructs of value that include the subjective meanings and uses of genetic testing. Precisely what constitutes these constructs of utility and how they vary by stakeholder perspectiv...
Background: T-cell redirecting therapies (TCRTs), including CAR T-cell therapies and bispecific antibodies, have transformed treatment for relapsed/refractory multiple myeloma (MM), yet real-world adoption remains limited by awareness and access barr...
Background: Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This stu...
Adolescents with psychiatric illness severe enough to be hospitalized experience many challenges that are also experienced by their caregivers and other family members. The purpose of this study was to explore the challenges experienced by these adol...
Background/Objectives: Children with Down syndrome (DS) have distinct oral care needs and challenges, yet research on their care experiences, exploring caregiver and provider perspectives, is limited. Therefore, this study aimed to describe the barri...
Although technology has the potential to promote aging in place, the use of technology remains scarce among community-living older adults with dementia. A reason might be that many stakeholders are involved who all have a different perspective on tec...
Background: Cancer prevention is a crucial public health strategy, with 30–50% of cancers being preventable through early screening and lifestyle modifications. However, people with intellectual disabilities (PWID) face significant barriers to...
23 October 2024
Background: Individuals with intellectual disabilities (IDs) face unique challenges in accessing cancer prevention measures. Caregivers play a crucial role in facilitating these measures, yet their perspectives are under-researched. Methods: This sys...
Background: Antibiotic resistance (ABR) is a critical global health threat, disproportionately affecting low- and middle-income countries (LMICs) where systemic constraints, economic pressures and sociocultural factors drive inappropriate antibiotic...
Research shows that mentorship can significantly influence the lives of youth. As a society we are becoming more diverse and aware that cultural needs for youth of color are more complex. We have seen an increase in formal mentoring programs that off...
Background: As survival increases among children with congenital and acquired heart disease (HD), understanding how families adapt to long-term care and family needs has become increasingly important. This study explored parents’ experiences an...
Background: Caregiver and healthcare provider perspectives of virtual care have not been explored in depth in the literature for neonatal follow-up clinics. Our objective was to evaluate caregivers’ and healthcare providers’ perspectives...
28 October 2021
We evaluated families’ perspectives on the usability of virtual visits for routine gender care for trans youth during the COVID-19 pandemic. An online survey, which included a validated telehealth usability questionnaire, was sent to families who had...
This qualitative study incorporates caregiver perspectives to identify their (1) experiences with medical and educational supports for their children with chronic TBI following inpatient rehabilitation and across the recovery trajectory and (2) recom...
(1) Background: Suicide is a leading cause of death among young people. Preventing suicide in young people is a priority. Caregivers play a vital role in ensuring interventions for young people experiencing suicide ideation and/or attempts are implem...
31 August 2023
The Water is K’é program was developed to increase water consumption and decrease consumption of sugar-sweetened beverages for young children and caregivers. The pilot program was successfully delivered by three Family and Child Educatio...
Regarding long-term home care needs, nurses need to communicate effectively and reasonably when teaching home caregivers. Designers can assist medical staff and develop pictorial tools to enhance communication. The purpose of this study is to explore...
Background: Validated patient- and caregiver-reported outcome (PRO and CRO) questionnaires are widely used to assess quality of life (QoL) in multiple myeloma (MM). However, most were developed before recent therapeutic advances that have modified di...
Improving public awareness of palliative care is crucial for improving access to, and uptake of, palliative care, which has demonstrated benefits for patients and health systems. However, there is a lack of engaging, accessible educational palliative...
Background/Objectives: While screening, brief intervention, and referral to treatment (SBIRT) is a widely recommended evidence-based approach for early detection and intervention for alcohol and other drug (AOD) use, limited guidance exists for imple...
Background/Objectives: Environmental factors influence the participation of children with disabilities in everyday life. Parents, as primary caregivers, provide insights into how these factors support or hinder participation in health-related, educat...
Background/Objectives: Gastrostomy tube (GT) placement plays a vital role in managing children with chronic illnesses who are unable to meet their nutritional needs orally. While its clinical benefits are well established, limited data exist on careg...
As a result of a rapidly aging population and the increasing prevalence of dementia among older adults, technological solutions are increasingly being considered to facilitate caregiving. This research investigates the perspectives of 20 caregiving d...
Background: Acute malnutrition affects 45 million children under five globally. Nigeria has Africa’s highest number of malnourished children, and wasting in Kaduna State has increased from 4.8% to 5.9%. Evidence on within-child nutritional tran...
Adolescent cancer patients and their caregivers have demonstrated willingness to participate in invasive biological sampling, either for their own potential benefit or for research purposes. However, many malignancies occur primarily in prepubescent...
Background/Objectives: This study investigated the perceived impact of therapy dogs on speech therapy for children with communication disorders. Methods: Using an interpretive descriptive design, we gathered insights from both therapists and caregive...
Background/Objectives: Pediatric oncology patients and families are at risk for increased distress at diagnosis. The New Oncology Program in Psychology (NOPP) aligns psychological care with the established standards of care at diagnosis. This project...
Background/Objectives: Gender differences in the variables of burden, anxiety, depression, and others associated with psychological distress have been found in studies on caregivers caring for a dependent relative, but a gender perspective is seldom...
This study aims to understand the difficulties in caring for the older adults with functional dependence from the perspective of Brazilian and Portuguese caregivers. This is a study based on the Theory of Social Representations, based on the Thematic...
Informal caregivers of people with neurocognitive disorders (NCDs) may play a decisive role in guaranteeing partners’ participation in community-based physical exercise interventions. However, little is still known about their perspective on be...
This study explored the perspectives of elephant mahouts (n = 55) and tiger caregivers (n = 18) working in 4 private or 2 government facilities in Thailand to learn their experiences and viewpoints pertaining to use of animals in tourism. Interviews...
There is a dearth of research on how family caregivers are supported in First Nations. We interviewed family caregivers, health and community providers, and leaders in two Alberta First Nations Communities about their experiences of care and support...
31 October 2025
Multidimensional approaches to understanding the daily lived experiences and well-being among spousal dyads, where one partner has diagnosed mild cognitive impairment (MCI) and the other serves as an informal caregiver, is a relatively unexplored are...
Background: Apathy is a neuropsychiatric symptom that is frequently present in nursing-home residents, including residents with Korsakoff’s syndrome (KS). Although apathy is common in KS, treatment guidelines are lacking. The Shared Action for...
Background: Diagnosing physical and mental health issues in individuals with profound intellectual and multiple disabilities (PIMD) often proves challenging, as these patients are unable to speak for themselves. Caregivers’ tacit knowledge (TK)...
High expressed emotion (EE) is common in caregivers of patients with anorexia nervosa (AN) and associated with poorer outcome for patients. In this study, we examined the prevalence of high EE in caregivers of adolescents with AN and analyzed predict...
Caregiver reports, clinical observations, and diagnostic assessments indicate that most individuals with fragile X syndrome experience high levels of chronic anxiety. However, anxiety is a challenging endpoint for outcome measurement in FXS because m...
Objective: This study aimed to identify caregivers’ perceptions, preferences, and intentions regarding the use of digital articulation therapy applications for children with DLD. Methods: A cross-sectional online survey was conducted between Au...
Ongoing participation in valued and essential everyday activities remains a priority for people with advanced disease. This study sought to understand factors influencing patients with advanced disease and caregivers’ utilisation of assistive e...
25 November 2022
Depressive symptomatology is associated with caregiver burden and poor health outcomes among dementia caregivers. Scholars called for a paradigm shift to focus on positive aspects of caregiving, in particular, meaning making during the caregiving jou...
Introduction: Increased life expectancy and the growing prevalence of disability have led grandmothers and grandfathers to assume a significant role in the care of grandchildren with disabilities. However, their experiences have been scarcely explore...
This qualitative study surveyed caregivers regarding their perspectives on the benefits of, challenges with, and suggestions for improving telehealth during the COVID-19 pandemic. Caregivers who had the responsibility for caring for at least one chil...
8 July 2021
(1) Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for...
Given the crucial role of vaccination in halting the COVID-19 pandemic, it is imperative to understand the factors that motivate adolescents to get vaccinated. We surveyed adolescents and their accompanying guardians scheduled to receive a COVID-19 v...
Very little is known about the perspectives of the caregivers on the use of telemonitoring (TM) interventions in low-middle-income countries. Understanding caregivers’ perspectives on TM interventions is crucial, given that caregiving activitie...
24 November 2022
Context: The care of adults with intellectual disabilities is marginalized and rarely studied in Poland. In recent years, this issue has gained particular importance, partly due to the increasing life expectancy of people with ID. This paper presents...
The care of children with cerebral palsy (CP) requires a complex system of care that is not only dependent on health care resources, but is also strongly influenced by social and cultural attributes. Hence, it is important to explore the understandin...
Background/Rationale: Transnational caregiving may be influenced by religious beliefs and cultural traditions that frame elder care as both a moral and religious obligation. While migration alters caregiving dynamics, religious teachings and cultural...
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