Family caregivers of children transitioning hospital to home receiving nasogastric feeding: descriptive qualitative study.

BACKGROUND: Nasogastric tube (NGT) feeding is used for children unable to tolerate adequate nutrition orally to sustain growth and development. This vulnerable population is at risk of gaps in care because they often lack a medical home due to the transitional nature of the technology. This study explores perspectives and challenges of family caregivers (FCs) of children requiring NGTs transitioning from hospital to home. METHODS: Semi-structured qualitative interviews were conducted with FCs at the Hospital for Sick Children and Children's Hospital of Eastern Ontario. Research ethics approval was obtained (SK REB# 1000064641, CHEO REB# 19/133X). Written informed consent was obtained. RESULTS: Thirteen interviews revealed FCs feeling overwhelmed and uncomfortable with first communication of the NGT but learned to manage NGTs with training and virtual care support over time. Initial transition home was described as challenging due to physical, emotional, and financial strain associated with constant management of NGTs. CONCLUSIONS: Our study describes the importance of emotional support and additional time for decision making during initial communication to FCs of their child's NGT need, and access to specialized healthcare professionals after transitioning home. Future programs should focus on personalized education and psychosocial support for FCs of children with NGTs at home. IMPACT: This study delves into the challenges faced by family caregivers (FCs) of children requiring nasogastric tube (NGT) feeding when returning home from the hospital. There is a pressing need for more time for FC decision-making and emotional support during the initial communication of the need for an NGT for their child. In addition, FCs require ongoing 24/7 support including access to healthcare professionals specialized in NGT care after the initial transition home. The study highlights the need for personalized education and psychosocial supports for FCs of children with NGTs to improve their experiences at home.

Caring for children with new medical technology at home: parental perspectives.

OBJECTIVES: This qualitative descriptive study explores the experiences of family caregivers (FCs) of children with medical complexity who are initiated on new medical technology in the hospital and transition to new daily life at home. The study aims to investigate FCs' response and readiness for medical technology use, the value of education and transition support and the challenges associated with managing new medical technology in the home. STUDY DESIGN: A qualitative descriptive approach was used to conduct and analyse 14 semistructured interviews with a group of FCs composed of 11 mothers and 3 fathers. Content analysis was used to analyse transcripts of the caregiver interviews. The study was conducted at a tertiary paediatric hospital in Toronto, Canada. RESULTS: Our study revealed three main themes: FC's response and readiness for medical technology use, the value of education and transition support for initiation of new medical technology and the challenges associated with managing new medical technology in the home. FCs expressed emotional distress related to coping with the realisation that their child required medical technology. Although the theoretical and hands-on practice training instilled confidence in families, FCs reported feeling overwhelmed when they transitioned home with new medical technology. Finally, FCs reported significant psychological, emotional and financial challenges while caring for their technology-dependent child. CONCLUSIONS: Our study reveals the unique challenges faced by FCs who care for technology-dependent children. These findings highlight the need to implement a comprehensive education and transition programme that provides longitudinal support for all aspects of care.

Screening for psychosocial risk in caregivers of children with medical complexity during the COVID-19 pandemic: a cross-sectional study.

OBJECTIVE: The primary objective was to quantify psychosocial risk in family caregivers (FCs) of children with medical complexity (CMC) during the COVID-19 pandemic using the Psychosocial Assessment Tool (PAT). The secondary objectives were to compare this finding with the average PAT score of this population before the COVID-19 pandemic and to examine potential clinical predictors of psychosocial risk in FCs of CMC. DESIGN: Cross-sectional study. PARTICIPANTS: FCs of CMC were recruited from the Long-Term Ventilation Clinic at The Hospital for Sick Children, Toronto, Ontario, Canada. A total of 91 completed the demographic and PAT questionnaires online from 10 June 2021 through 13 December 2021. MAIN OUTCOME MEASURES: Mean PAT scores in FCs were categorised as 'Universal' low risk, 'Targeted' intermediate risk or 'Clinical' high risk. The effect of sociodemographic and clinical variables on overall PAT scores was assessed using multiple linear regression analysis. Comparisons with a previous study were made using Mann-Whitney tests and χ2 analysis. RESULTS: Mean (SD) PAT score was 1.34 (0.69). Thirty-one (34%) caregivers were classified as Universal, 43 (47%) as Targeted and 17 (19%) as Clinical. The mean PAT score (1.34) was significantly higher compared with the mean PAT score (1.17) found prior to the COVID-19 pandemic. Multiple linear regression analysis demonstrated an overall significant model, with the number of hospital admissions since the onset of COVID-19 being the only variable associated with the overall PAT score. CONCLUSION: FCs of CMC are experiencing significant psychosocial stress during the COVID-19 pandemic. Timely and effective interventions are warranted to ensure these individuals receive the appropriate support.

Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study.

BACKGROUND AND OBJECTIVES: Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic. METHODS: We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. RESULTS: Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic's impact on family caregiver well-being (mental toll, physical toll). CONCLUSIONS: Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

Looking Back to Move Forward: Lessons Learned from a Successful, Sustainable, Replicable Model of Adolescent and Young Adult Program of a Tertiary Cancer Care Center.

Background: The Princess Margaret Cancer Centre (PM) established the adolescent and young adult (AYA) oncology program in 2014 to address the unique needs of AYA by delivering targeted, evidence-based care through a multidisciplinary team. Methods: We performed a retrospective analysis of patients who underwent a consultation with the PM AYA program from 2014 to 2020. The association between the health domain concerns reported and age at consultation, cancer diagnoses, and time since diagnosis was analyzed using chi-square test of independence in SPSS. Results: In our cohort of 1128 AYA, the median age at assessment was 28.2 years. The most common diagnoses were lymphoma (n = 251, 22.2%), leukemia (n = 207, 18.4%), and breast cancer (n = 162, 14.4%). The most common concerns reported were related to fertility (n = 882, 78.2%) and work/school (n = 472, 41.8%). Fertility concerns were most common in 25-34 age group (443/540, 82.0%) and work-/school-related concerns were highest in 18-24 age group (191/355, 53.8%). Diagnoses significantly affect majority of concerns reported. Fertility concerns were most common in AYA consulted near diagnosis, while body image-, exercise-, and diet-related concerns were more frequently reported, while on active treatments. Conclusions: Supporting fertility concerns remains the cornerstone of any successful AYA program. Work-/school-related concerns deserve more elucidation and attention. We identified important patterns in the health-related concerns of AYA, especially as they relate to age, diagnoses, and time since diagnosis. This insight will guide us for improving patient-centered care delivery to AYA.

Student-senior isolation prevention partnership: a Canada-wide programme to mitigate social exclusion during the COVID-19 pandemic.

Amidst the pandemic, Canada has taken critical steps to curb the transmission of the 2019 novel coronavirus disease (COVID-19). A key intervention has been physical distancing. Although physical distancing may protect older adults and other at-risk groups from COVID-19, research suggests quarantine and isolation may worsen mental health. Among older adults, social exclusion and social safety nets are social determinants of health (SDOH) that may be uniquely affected by the COVID-19 physical distancing measures. Health promotion programmes designed to reduce social exclusion and enhance social safety nets are one way to mitigate the potential mental health implications of this pandemic. The Student-Senior Isolation Prevention Partnership (SSIPP) is a student-led, community health promotion initiative that has scaled into a nation-wide effort to improve social connection among older adults. This initiative began with in-person visits and transformed into a tele-intervention guided by health promotion principles due to COVID-19. SSIPP continued to target the SDOH of social exclusion and social safety nets by pairing student volunteers with older adults to engage in weekly phone- and video-based interactions. Informed by the community partnership model by Best et al., SSIPP is built on the three orientations of empowerment, behaviour and organization, which are achieved through cross-disciplinary collaboration. This article reviews the importance of the adaptability of health promotion programmes, such as SSIPP during a pandemic, placing an emphasis on the lessons learned and future steps.

A common way to slow the spread of the 2019 novel coronavirus disease (COVID-19) is for people to keep their distance from one another. This has led to isolation and loneliness, especially for older adults. The Student­Senior Isolation Prevention Partnership (SSIPP) is a programme developed by students and physicians in Toronto, Canada. The programme pairs student volunteers with older adults for weekly social interactions. These interactions were in-person before COVID-19. Following the physical distancing recommendations as a result of COVID-19, the programme quickly adapted to use phone and video calls instead. Establishing and leveraging key partnerships, identifying a window of opportunity, assessing community-specific needs and creating national manuals and protocols were key factors in facilitating simultaneous expansion across Canada. This article addresses the importance of programmes like SSIPP in preventing negative health impacts associated with loneliness and isolation. The authors also discuss the adaptability of SSIPP, lessons learned for future pandemic efforts and next steps.

Coassembly of gold nanoparticles and cellulose nanocrystals in composite films.

Coassembly of nanoparticles with different size-, shape-, and composition-dependent properties is a promising approach to the design and fabrication of functional materials and devices. This paper reports the results of a detailed investigation of the formation and properties of free-stranding composite films formed by the coassembly of cellulose nanocrystals and shape-isotropic plasmonic gold nanoparticles. The effect of gold nanoparticle size, surface charge, and concentration on the structural and optical properties of the composite films has been studied. The composite films retained photonic crystal and chiroptical activity properties. The size and surface charge of gold nanoparticles had a minor effect on the structure and properties of the composite films, while the concentration of gold nanoparticles in the composite material played a more significant role and can be used to fine-tune the optical properties of materials derived from cellulose nanocrystals. These findings significantly broaden the range of nanoparticles that can be used for producing nanocomposite materials based on cellulose nanocrystals. The simplicity of film preparation, the abundance of cellulose nanocrystals, and the robust, free-standing nature of the composite films offer highly advantageous features and pave the way for the generation of functional materials with coupled optical properties.

Structure and properties of composite films formed by cellulose nanocrystals and charged latex nanoparticles.

We report the structural and optical properties of composite films formed from mixed suspensions of cellulose nanocrystals (CNCs) and fluorescent latex nanoparticles (NPs). We explored the effect of NP concentration, size, surface charge, glass transition temperature and film processing conditions on film structure and properties. The chiral nematic order, typical of CNC films, was preserved in films with up to 50 wt% of negatively-charged latex NPs. Composite films were characterized by macroscopically close-to-uniform fluorescence, birefringence, and circular dichroism properties. In contrast, addition of positively charged latex NPs led to gelation of CNC-latex suspensions and disruption of the chiral nematic order in the composite films. Large latex NPs disrupted the chiral nematic order to a larger extend than small NPs. Furthermore, the glass transition of latex NPs had a dramatic effect on the structure of CNC-latex films. Latex particles in the rubbery state were easily incorporated in the ordered CNC matrix and improved the structural integrity of its chiral nematic phase.

Coassembly of nanorods and nanospheres in suspensions and in stratified films.

The entropically driven coassembly of nanorods (cellulose nanocrystals, CNCs) and nanospheres (dye-labeled spherical latex nanoparticles, NPs) was studied in aqueous suspensions and in solid films. In mixed CNC-latex suspensions, phase separation into an isotropic latex-NP-rich and a chiral nematic CNC-rich phase took place; the latter contained a significant amount of latex NPs. Drying the mixed suspension resulted in CNC-latex films with planar disordered layers of latex NPs, which alternated with chiral nematic CNC-rich regions. In addition, fluorescent latex NPs were embedded in the chiral nematic domains. The stratified morphology of the films, together with a random distribution of latex NPs in the anisotropic phase, led to the films having close-to-uniform fluorescence, birefringence, and circular dichroism properties.