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Happy Healthy Homes is a randomised controlled trial (RCT) studying the efficacy of in-person and virtual interventions on family child care home (FCCH) providers’ nutrition practices, self-efficacy, and Child and Adult Care Food Program (CACFP) knowledge. FCCH were randomly assigned to the intervention (NUT) or attention control (CON). Cohort1 (in-person 2017–2018) included 45 (NUT n = 24; CON n = 21) FCCHs. Cohort2 (virtual 2020) included 36 (NUT n = 15; CON n = 21) FCCHs. Outcomes included self-reported nutrition practices, confidence, barriers, and CACFP best practice knowledge. Measures were collected at 3 and 12 months. The primary 12-month analyses accounted for intent-to-treat and used a mixed model on all providers with 3-month outcomes including those who withdrew prior to 12-month assessments. At 12 months, both cohorts demonstrated significant effects. In Cohort1, NUT improved self-reported beverages provided and feeding environment, and confidence in serving healthy foods, while CON remained unchanged. No changes were observed for CACFP best practice knowledge. In Cohort2, NUT did not demonstrate a group effect over time for self-reported nutrition practices. NUT did increase confidence in serving healthy foods and decreased barriers related to food waste, whole grain service, children’s healthy eating habits, and CACFP best practice knowledge while CON experienced minimal changes. This study demonstrated that in-person and virtual interventions can help FCCHs improve their nutrition practices, confidence, and barriers in serving optimal foods, and knowledge in CACFP best practices. The utilisation of virtual interventions may increase reach in rural areas and be appealing to FCCH providers.
Trial Registration:
Clinicaltrials.gov, NCT03560050. Retrospectively registered on 23 May 2018. First participant enrolled October 2017. Trial protocol and analyses plan can be accessed on clinicaltrials.gov.
This study investigated the predictive relationship between self-compassion and spiritual well-being among palliative care caregivers, exploring internal resources to mitigate care burden and existential distress in end-of-life settings.
Methods
This descriptive, cross-sectional, and correlational study was conducted between March and September 2025 with 138 family caregivers in a palliative care unit. Sample size was determined via a priori power analysis ensuring 95% power. Data were obtained using the Introductory Characteristics Form, the Self-Compassion Scale (SCS), and the Spiritual Well-Being Scale. Data analysis involved descriptive statistics, Pearson correlation analysis, and simple linear regression.
Results
The mean self-compassion score was 79.94 ± 11.68, and the mean spiritual well-being total score was 109.26 ± 13.59. Subscale scores were 63.05 ± 9.93 (transcendence), 28.10 ± 3.91 (harmony with nature), and 18.11 ± 5.28 (anomie). A positive, moderate correlation existed between total self-compassion and spiritual well-being (r = 0.349, p < 0.001). Significant associations were also identified across the transcendence (r = 0.217, p = 0.011), harmony with nature (r = 0.213, p = 0.012), and anomie (r = 0.333, p < 0.001) subscales. Regression analysis confirmed that self-compassion positively predicted spiritual well-being (β = 0.349, t = 4.349, p < 0.001), accounting for 11.2% of the total variance (R2 = 0.112, F = 18.910, p < 0.001).
Significance of results
Self-compassion is a critical internal resource for finding spiritual meaning amidst end-of-life stressors. Fostering compassionate attitudes can alleviate anomie and emotional burnout among caregivers. Palliative care nurses should integrate mindfulness-based self-compassion interventions into support programs to bolster caregiver well-being and enhance care quality.
A knowledge gap persists regarding how patients with cancer requiring opioids and their caregivers perceive a co-prescription of naloxone. This study aims to understand caregivers of cancer patients’ perceptions, beliefs, knowledge, and confidence regarding naloxone.
Methods
This prospective cross-sectional survey study was conducted at an outpatient palliative and supportive care clinic in a tertiary cancer center in the US between May 2020 and April 2022. Survey questions were based on an in-depth review of previous literature and opioid studies. Patients at risk for opioid overdose received naloxone prescriptions from our team. The survey study examined the proportion of caregivers who perceived a prescription of naloxone benefits the cancer patient and assessed the association between the patients’ and caregivers’ perceptions. We collected patient demographics and clinical information data. The survey was administered via telephone interview based on the caregivers’ availability.
Results
A total of 150 cancer patients and 29 caregivers were included in the analysis. A total of 100/150 (67%) patients and 23/29 (79%) caregivers perceived naloxone as beneficial. Cohen’s κ showed fair agreement between the patients and their caregivers (Cohen’s κ = 0.34, p = 0.034). A total of 26/29 (89.7%) caregivers felt confident in administering naloxone and calling for help. A total of 29/29 (100%) caregivers agreed that concurrent use of alcohol with pain medications increases risk of overdose.
Significance of results
Cancer patients and caregivers perceived naloxone as beneficial and not likely to cause harm. Agreement between patients and caregivers was only fair, suggesting that better communication regarding naloxone is needed. More research is needed to identify barriers toward safe opioid prescription and increase awareness toward naloxone.
Although it is known that parents caring for adolescent and young adult (AYA) cancer patients experience physical and psychological stress, to our knowledge, there are no reports regarding thiamine deficiency (TD) in this population.
Method
From a series of cancer patient caregivers, we identified TD in a mother caring for an AYA cancer patient and report our experience with this case, as treatment enabled the prevention of Wernicke encephalopathy (WE).
Results
A 49-year-old woman who had been caring for her 18-year-old son after he developed graft-versus-host disease following bone marrow transplantation for leukemia visited our psycho-oncology department at the recommendation of her son’s attending physician after witnessing her son experience a seizure. Thirteen months after the initial consultation, she developed difficulty climbing stairs, suggesting a possible physical abnormality. Blood tests revealed a markedly decreased hemoglobin level of 5.7 g/dL, and subsequent evaluation led to a diagnosis of iron deficiency anemia. Five days later, her thiamine level was found to be markedly reduced at 19 ng/mL (reference range: 24–66 ng/mL), and oral thiamine at a dose of 75 mg was initiated. No progression to WE, such as disturbance of consciousness, was observed.
Significance of the results
Parents caring for AYA cancer patients are profoundly affected both physically and psychologically by their child’s condition. In the future, attention should be paid to the nutritional status (including TD) of families caring for AYA cancer patients, as this may contribute to improving quality of life for both patients and their families.
Parents of adolescents facing suicidality play a crucial protective role, but often feel overwhelmed. The Partners in Parenting Plus – Suicide Prevention (PiP-SP+) programme is a co-designed, coach-supported, online parenting programme aimed to empower parents within their carer role to manage their adolescent’s suicide risk.
Aims
To evaluate PiP-SP+’s acceptability, feasibility, validity and short-term effects.
Method
Fifteen parents of adolescents aged 12–18 years, concerned about their adolescent’s suicidality, participated in an open-label, non-randomised uncontrolled trial. Parents (n = 11) completed semi-structured interviews, exploring the programme’s acceptability, feasibility and validity. Thirteen parents completed quantitative assessments of parental self-efficacy to respond to adolescent suicidality and non-suicidal self-injury, protective parenting behaviours, carer burden, parental distress, mental health support quality, family functioning, and adolescent anxiety and depressive symptoms at baseline and 120 days post baseline. Finally, nine adolescents of the participating parents self-reported anxiety symptoms, depressive symptoms and perceptions of parental support at baseline and 120 days post baseline.
Results
PiP-SP+ was an acceptable, feasible and valid intervention for parents. Significant baseline-to-post-intervention improvements were observed in parents’ self-efficacy to respond to adolescent suicidality and non-suicidal self-injury, protective parenting behaviours, carer burden, parental distress and mental health support quality. No significant differences were reported in family functioning. Adolescents perceived increased parental support; both parents and adolescents reported reductions in adolescent anxiety symptoms. Although parents reported a significant decrease in adolescent depressive symptoms, adolescents did not.
Conclusions
Findings support the value of undertaking an appropriately powered, randomised controlled trial to confirm these pilot findings.
While parrots are popular companion animals, many experience significant welfare challenges, often resulting from not fulfilling their behavioural, environmental, and social needs. To address this issue, we developed a welfare assessment tool designed specifically for companion parrot caregivers. We involved a panel of seven experts with extensive working experience with companion parrots and in animal welfare assessment. Using an iterative process consisting of four online surveys and nine focus group meetings, the expert panel was invited to select relevant welfare indicators, rephrase selected indicators into user-friendly questions, identify missing content, and finally review the wording and structure of the tool. A preliminary version of the tool was then evaluated by four additional anonymous external experts and 69 parrot caregivers for its completeness, clarity and practicality through an online survey. Feedback from this stage was incorporated, and the revised version was subsequently reviewed again by the initial expert panel. The resulting tool, PsittaWel (freely downloadable at: https://www.vetmeduni.ac.at/psittawel), consists of 75 questions covering 145 welfare indicators and is divided into eight sections covering key aspects of parrot welfare: general information; physical health; housing and physical activity; provision of enrichment and exploration; nutrition and maintenance behaviours; social and reproductive behaviours; parrot-human interactions; maladaptive and fear-related behaviours. Further research is needed to assess the reliability of the indicators. Nevertheless, PsittaWel is already a valuable tool for caregivers to monitor welfare and identify potential room for improvement, ultimately improving the lives of their companion parrot.
Family caregivers in low- and middle-income countries (LMICs) provide the lion’s share of care for their relatives with severe mental health conditions amid vast treatment gaps. Yet, their lived experiences are not adequately explored. This systematic review synthesizes evidence on the lived experiences, priorities and needs of these caregivers across diverse LMIC settings. We analyzed 76 articles identified across nine databases. Data were synthesized using thematic analysis. The synthesis identified five themes: (1) the journey to understanding, (2) familial commitment to care, (3) the unrelenting burden of caregiving, (4) Forging resilience: strategies of enduring care and (5) voiced needs and priorities. The early attempts to understand the illness take the family on a journey from initial uncertainty to experiential learning. Familial commitment to care is often rooted in moral obligation and system neglect, but this sustained effort leads to an immense caregiving toll. The burden is profoundly gendered, disproportionately affecting women, who commonly face isolation and burnout. Caregivers often navigate pervasive, multidimensional stigma that restricts the entire family’s social and economic future. Despite these challenges, resilience is fostered through faith, peer support and active inclusion of the person in family routines. Caregivers urgently prioritized mental health services that offer knowledge about the illness, active and respectful involvement in treatment planning, practical caregiving skills and support groups. The pressing need for economic support was also expressed. This review underscores the need for global mental health endeavors to recognize and respond to unsupported family caregiving. Family focused interventions have the potential to modify the home environment in ways that support recovery for the person and alleviate many of the caregiving challenges faced by the family. Alongside this, initiatives are needed to address economic precarity and facilitate social inclusion of the family unit.
College students (those enrolled in two- and four-year postsecondary institutions) with caregiving responsibilities for children or other dependents face unique challenges balancing academic and caregiving duties. This scoping review aimed to describe the prevalence of food insecurity among United States college student caregivers and their experiences with food insecurity, dietary quality/intake, academic outcomes, and food security programming. A search of peer-reviewed and grey literature was conducted in four databases: CINAHL, Google Scholar, Embase, and Medline. Identified articles were evaluated against inclusion criteria. Of 162 articles identified, 61 articles met eligibility criteria and underwent data extraction and descriptive analysis. Forty-two articles (69%) reported the prevalence of food insecurity among college student caregivers, with prevalence ranging from 9% to 79%. Single parents, students of colour, LGBTQ+ individuals, and those with multiple dependents had increased food insecurity risk. Thirteen studies examined dietary patterns, finding caregiving students prioritised feeding their children, reduced their own meal sizes, and chose low-cost, low-nutrient foods due to budget constraints. Academic challenges included difficulties in time management and scheduling stress. No studies examined Grade Point Average (GPA) or academic performance. Thirteen studies identified the use of food assistance programmes. Food assistance programmes were underutilised due to limitations such as restricted pantry hours and availability. Housing insecurity frequently co-occurred with food insecurity. Food insecurity disproportionately affects college student caregivers compared to non-caregiving students. Comprehensive programming is needed to support food and nutrition security, including connections to government and university food assistance programmes, childcare services, and programme modifications to reduce barriers to academic success for caregiving students.
This manifesto explores the biological effects of toxic stress, triggered by strong, frequent or prolonged adversity, on childhood development and long-term health. It highlights how emotion coaching, a form of responsive relationship, can mitigate those effects, support the healthy development of children and improve outcomes for children, young people and families. Emotion coaching involves being present, validating the child’s feelings and helping them understand and manage their emotions. The manifesto advocates for integrating the science of stress and the practice of emotion coaching into educational systems and communities, including strengthening skills and capabilities in the core life skills of adult caregivers. In this way, educators and communities can help children thrive.
The families of cancer patients experience many forms of distress, as a result of their loved one’s cancer diagnosis. However, there have been no reports of suicide attempts of caregivers directly linked to the diagnosis of advanced cancer in a family member.
Methods
We reported a caregiver who attempt suicide two months after his wife was diagnosed with advanced cancer.
Results
The subject was a 69-year-old male who had been caring for his wife, diagnosed with advanced stomach cancer, for two months. The patient’s husband, acting as her caregiver, was referred by his wife (a cancer patient) to meet with a nurse. He reported insomnia and a desire for hastened death. Despite repeated recommendations for specialized care at a caregiver clinic, he declined. Following an argument with his wife at home, he felt unable to cope and attempted suicide. The husband had no psychiatric history but had a history of colon cancer. After the attempt suicide, he began visiting the “Caregivers’ Clinic,” where he received ongoing psychological support that continued until the death of his wife.
Significance of results
In cancer care, it is essential to continuously assess not only the patient’s suicide risk, but also that of closely related family members.
Caregivers of older individuals with dementia experience substantial and enduring burden, often exacerbated by patient neuropsychiatric symptoms (NPS). Few longitudinal studies have examined how specific NPS contribute to prolonged caregiver burden.
Methods:
We conducted a 6-month prospective cohort study of 100 dyads of caregivers and older adults with Alzheimer’s disease, frontotemporal dementia and Lewy body dementia recruited from specialized neurology and geriatric clinics. Caregiver burden was assessed using the Zarit Burden Interview (ZBI), and NPS were measured with the neuropsychiatric inventory (NPI) and associated distress scale (NPI-D). Correlation analyses examined associations between baseline NPS and both concurrent and prolonged high caregiver burden.
Results:
At baseline, nearly one-third of caregivers reported moderate-to-severe burden (mean ZBI 31.4 ± 15.4), a prevalence that persisted at 6 months. Higher burden was strongly correlated with total NPI and NPI-D scores (p < 0.001). Specific symptoms – including delusions, hallucinations, agitation, anxiety, disinhibition, depression, sleep disorders and irritability – were consistently associated with greater burden. Depression, anxiety, disinhibition and sleep disturbances predicted prolonged high burden over 6 months. Sex-specific patterns emerged: psychotic symptoms and sleep disorders were more strongly associated with burden in female caregivers, whereas depression and irritability were key drivers for male caregivers.
Conclusion:
Caregiver burden in dementia is both prevalent and persistent, with NPS emerging as major correlates and predictors. Recognition of sex-related patterns may enable earlier identification of at-risk caregivers. Interventions addressing both patient NPS and caregiver coping resources could help reduce long-term distress and improve outcomes for both caregivers and patients.
Persons living with dementia (PLWD) and their caregivers (CG) face a complex disease trajectory, which includes a multitude of challenges related to identifying credible health resources, access to services, and securing emotional support. Scalable, sustainable interventions that guide recently diagnosed PLWD and CG are desperately needed to minimize unnecessary burden and improve quality of life. This article describes the feasibility and acceptability of an early virtual palliative care intervention (SUPPORT-DTM) for use among PLWD with mild Cognitive Impairment or Alzheimer’s disease and their CG.
Methods
Using a quasi-experimental design, this 6-week prospective feasibility study was conducted among 28 (PLWD/CG) dyads and 2 individual CG. Eligibility criteria for PLWD included those with mild cognitive impairment (FAST score ≥4). SUPPORT-DTM comprises 4 main areas of guided support: 1) understanding the disease, 2) caring for myself, 3) caring for the caregiver, and 4) planning for the future. Outcome data were collected pre/post and during the intervention. Semi-structured interviews were conducted post intervention with 10 dyads. This study was approved by the Medical University of South Carolina IRB and data were collected from January 2023 to March 2024.
Results
Seventy-six percent (23/30) of enrolled dyads successfully completed the study. PLWD and CG scores on validated measures of acceptability, appropriateness, and feasibility indicated SUPPORT-DTM was acceptable, appropriate, and feasible. Post-intervention interview feedback further evidenced the acceptability, appropriateness, and feasibility of SUPPORT-DTM.
Significance of results
Delivery of this virtual nurse-led early palliative care intervention (a Program of SUPPORT-DTM) was feasible for both PLWD and their CGs. A Program of SUPPORT-DTM has potential as a feasible intervention to provide anticipatory guidance to community-dwelling PLWD and CG. Participants endorsed inclusion of additional content specific to physical activity, stress management, and social support as helpful refinements for future delivery.
Patients with advanced cancer, their caregivers, and healthcare professionals can differ in their preferences for patient treatment and care. The objectives of this study were to (1) identify what healthcare professionals in specialist palliative care feel aids or challenges patients with advanced cancer and their caregivers to manage their discordance, and (2) decipher what is helpful or challenging for healthcare professionals themselves to manage discordance between patients with advanced cancer and their caregivers.
Methods
A qualitative study was conducted comprising online focus groups with 19 healthcare professionals from different professions in specialist palliative care. Participants were purposively and snowball sampled, and recruited from specialist palliative care settings, including hospital, hospice, and community-based care. The data were member checked and analyzed using thematic analysis.
Results
Trust and consistent communication between the patient, caregiver, and healthcare professional, were considered by participants as helpful for patients and caregivers to manage discordance. Emotional and psychological burden for both the patient and caregiver together with preexisting conflict between the patient and caregiver, were perceived as barriers for patients and caregivers to manage their discordance. Knowledge and expertise gained from practice combined with professional resilience and peer support enabled participants to help patients and caregivers navigate discordance. Relational conflict between the patient and caregiver combined with participants’ own uncertainty about ethical and legal connotations of helping the patient and caregiver resolve their differences, were barriers to helping the patient and caregiver manage their discordance.
Significance of results
Interventions focused on assisting patients with advanced cancer in palliative care and their caregivers manage their differences in decision-making could serve to alleviate emotional burden for both the patient and caregiver. Healthcare professionals in specialist palliative care value the perspective of both patients with advanced cancer and their caregivers when helping them manage their discordance in decision-making.
Severe mental disorders (SMDs) impose profound suffering on patients and heavy burdens on family caregivers, often resulting in abusive behaviors. This study aimed to examine the association between psychiatric symptom severity and caregiver abuse, and to assess whether caregiver tobacco dependence moderates this relationship.
Methods
A cross-sectional study included 763 patient–caregiver dyads in rural Shandong, China. Psychiatric symptom severity was measured using the 18-item Brief Psychiatric Rating Scale. Caregiver tobacco dependence was assessed using the Fagerström Test for Nicotine Dependence. Patients reported caregivers’ verbal/physical abuse in the past year. Ordered logistic regression and interaction terms tested associations and moderation.
Results
Overall, 25.7% of caregivers engaged in verbal abuse and 14.9% in physical abuse. Psychiatric symptom severity was significantly associated with both verbal (OR = 1.018, 95% CI: 1.010–1.026) and physical abuse (OR = 1.015, 95% CI: 1.005–1.025). Caregivers with moderate to severe tobacco dependence were more likely to commit verbal (OR = 1.851, 95% CI: 1.136–3.016) and physical abuse (OR = 2.292, 95% CI: 1.287–4.079) than non-smokers. Moderate to severe tobacco dependence significantly amplified the association between psychiatric symptom severity and verbal abuse (interaction OR = 1.024, 95% CI: 1.002–1.046), but not physical abuse.
Conclusion
In rural China, greater psychiatric symptom severity among patients with SMDs is associated with increased frequency of both verbal and physical abuse by caregivers, particularly verbal abuse among those with moderate to severe tobacco dependence, underscoring the need for caregiver-targeted psychological support and tobacco cessation interventions.
While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoing cancer treatment experience suffering, the alleviation of which is a main goal of palliative care, yet research has not yet explored whether siblings experience their own suffering. This work aimed to determine whether parents perceive that their child(ren) without cancer suffered throughout the illness course and how that suffering would be described.
Methods
Using literature and expert input, a survey was developed to elicit caregivers’ perceptions of suffering in their children with and without cancer and was disseminated through the American Childhood Cancer Organization. Responses regarding sibling suffering were analyzed, considering differences in accounts between bereaved caregivers and those whose child with cancer remains living.
Results
A total of 202 parents (81 bereaved, 121 whose child with cancer remains alive) responded. Themes of sibling suffering include disconnection and/or displacement, lack of stability and certainty, emotional consequences, bearing witness, and lasting impact. One distinct theme, suffering as continued loss, emerged from bereaved parents’ responses.
Significance of results
Both parental groups described sibling suffering similarly despite different outcomes for their child with cancer. The idea of sibling suffering by bearing witness to what the child with cancer experienced is unique and worthy of further understanding. This work highlights the need for sibling and parent psychosocial assessment and palliative intervention throughout cancer treatment. Gaining longitudinal input from siblings and parents regarding the experience of suffering is a critical next step to develop tailored interventions.
Most persons living with dementia in Canada reside at home, relying on support from family and/or friends as caregivers. Evidentially, knowledge gaps exist when trying to understand how caregivers and persons living with dementia can be better supported in their community and health care environments. This research examined the effect of aging in place with a focus on providing a comprehensive understanding of the barriers to aging in place for persons living with dementia and their caregivers using the social-ecological model. Fourteen caregivers were recruited to participate in one-on-one semi-structured interviews. The subsequent theme, they do not make it easy, emphasizes issues faced with community and societal domains of aging in place care. These findings shed light on the unmet needs of persons living with dementia and their caregivers while aging in place, as well as the need to address systemic barriers to sincerely promote aging in place for all persons.
It is common for caregivers of the cognitively disabled to speak on behalf of their charges who cannot speak for themselves. Their testimony, however, is often dismissed either because of doubt about their having relevant expertise or because of worries that they are blinded by love. This paper is positioned against such dismissals. I argue that good caregivers are uniquely positioned to offer reliable and often insightful testimony about the well-being of their charges and so ought to be taken more seriously. I argue first for the reliability of caregiver testimony via a phenomenological account, which reveals that accuracy is constitutive of good caregiving. I then argue further that caregiver testimony can be especially insightful because the love that is characteristic of good caregiving may be semi-transformative, facilitating insight into cognitively disabled lives in a way that cannot be achieved through more detached forms of engagement.
Patients with advanced cancer and their caregivers experience a substantial amount of anxiety and distress. The purpose of this study was to assess the feasibility, acceptability, and preliminary effects of an 8-week, remotely delivered Resilient Living Program (RLP) for adult patients with advanced cancer and their caregivers.
Methods
Eligible patients included adults (≥18 years) with advanced cancer. Their caregiver had the option to participate. The RLP components included online modules, a print journal, and 4 video-telehealth-delivered sessions. Content focused on techniques for managing stress and building resilience (mindful presence, uplifting emotions, reframing experiences through practicing principles of gratitude, compassion, acceptance, meaning, and forgiveness). Feasibility and acceptability were assessed quantitatively and with semi-structured interviews conducted with a subset of participants. Effectiveness measures (anxiety, stress, quality of life [QOL], sleep, resiliency, and fatigue) were administered at baseline, week 5, week 9, and week 12.
Results
Of the eligible patients, 33/72 (46%) were enrolled. In all, 15 caregivers enrolled. Thirty participants (21 patients/9 caregivers) completed at least 3 video-telehealth sessions (63% adherence). For patients, there were statistically significant improvements in anxiety and fatigue at week 12 (p = 0.05). Other effectiveness measures (stress, QOL, sleep, resiliency) showed positive trends. Eleven participants were interviewed and qualitative analysis revealed 4 themes: Easy to Use, Learning Key Principles, Practice is Essential, and Examples of Benefits.
Significance of results
Participation in the RLP was feasible and acceptable for patients with advanced cancer and their caregivers. Participants tended to indicate that the practices were easy to integrate into their everyday lives, engendered their ability to focus on the positive, and would recommend the RLP to other individuals living with advanced cancer. Preliminary effectiveness data suggest the program may positively impact anxiety, stress, QOL, sleep, resiliency, and fatigue. A larger randomized clinical trial is warranted to confirm these preliminary findings.
The interstage period is a critical phase for single ventricle infants due to their fragile cardiovascular state. Infants often experience medical and feeding challenges during this period, resulting in caregiver stress. We completed a quality improvement project at Children’s Healthcare of Atlanta to understand these challenges to inform targeted interventions.
Methods:
This single-center project included a medical chart review and a cross-sectional caregiver survey. Data were collected on patient and caregiver demographics and clinical variables. Feeding outcomes were assessed using the Pediatric Functional Oral Intake Scale. Caregiver impact was measured using the Feeding/Swallowing Impact Survey.
Results:
The project included 15 single ventricle patients with a mean (standard deviation) age of 151.73(25.92) days at the time of the second-stage palliation. Forty percent of patients experienced at least one readmission, primarily due to feeding intolerance (20%) and desaturations (26.7%). Milk protein allergy (26.9%) was the most common medical complication, followed by interstage unplanned reinterventions. Pediatric Functional Oral Intake Scale scores demonstrated that 33% consumed minimal volumes or no oral intake at the time of the bidirectional Glenn, and 93.3% of patients did not receive outpatient feeding services during the interstage. Caregiver stress scores resulted in mean scores (standard deviation) of 2.23(1.54), with the highest impact on daily activities. All caregivers affirmed the need for a dedicated multidisciplinary clinic.
Conclusion:
The interstage period for single ventricle patients poses significant medical and feeding challenges, resulting in caregiver stress. Comprehensive, multidisciplinary feeding support during the interstage period may improve patient outcomes and alleviate caregiver burden.