A Review of the Use of Hyperthermic Intraperitoneal Chemotherapy for Peritoneal Malignancy in Pediatric Patients.

Hyperthermic intraperitoneal chemotherapy (HIPEC) can directly target microscopic peritoneal disease, has achieved regular consideration in the treatment of several adult cancer types, and is more recently being studied in pediatrics. This review paper provides an overview of the use of this modality in pediatrics in order to identify medication choice, discuss post-operative morbidity and mortality, and evaluate impact on overall survival. Four databases were searched including Scopus, PubMed, Embase, and CINAHL and ultimately 37 papers documenting the use of this modality comprising 264 pediatric patients were included. Malignancies treated include desmoplastic small round cell tumor, rhabdomyosarcoma, angiosarcoma, colorectal carcinoma, and mesothelioma, with several rarer tumor types. Cisplatin was the most commonly used drug for HIPEC at varying concentrations for 30-90 min in duration at temperatures of approximately 41-42 °C. Reported toxicities were generally self-limited and there was no post-operative mortality. The impact on overall survival versus systemic chemotherapy and debulking surgery is uncertain due to lack of clinical trials and very small sample size across tumor subsets and the overall pediatric population. The relationship between degree of tumor burden and extent of surgical debulking needs to be further clarified. Future directions include prospective clinical trials, establishment of patient databases to facilitate standardization of HIPEC in pediatric patients, and additional approaches to optimize HIPEC.

Airway clearance therapy in the school environment: Retrospective analysis of a cohort of pediatric patients with cystic fibrosis.

BACKGROUND: Adherence to airway clearance therapy (ACT) in pediatric cystic fibrosis (CF) patients is reported to be below 50% and inability to sustain daily care is linked to poor health outcomes7,8,9. Through a collaboration between a CF care center and several schools, we hypothesized that ACT completed at school by pediatric CF patients will improve lung function while decreasing pulmonary exacerbations (PEx), days of antibiotics (abx) and hospitalizations. METHODS: This was a retrospective case-control study at a single CF care center consisting of 50 CF patients age < 18 at time when data was recorded (2012-2020). The case group used high-frequency chest wall oscillation or positive expiratory pressure devices at school for at least 1 year after self-reported or physician identified inadequate use at home. Lung function and measures of healthcare utilization were collected. RESULTS: In the case group (n = 14), paired t-tests showed that after initiation of ACT at school, there were significant reductions in PEx requiring IV or PO abx (P = 0.010), total days of abx (P = 0.032), and visits to the CF care center (P = 0.037). There was no change in these outcomes in the matched control group (n = 36). CONCLUSIONS: This is the first known study to highlight an initiative between a CF care center and schools which utilized airway clearance devices at school to ensure pediatric CF patients completed ACT. Through increased adherence, this relationship was associated with improved health outcomes. Use of alternative strategies may help patients with CF sustain adequate airway clearance.

Clinician Communication in Hospice: Constructions of Reality Throughout the End-of-Life Process.

The current study examined qualitative data from hospice clinicians' perspectives on language, surrounding end-of-life (EOL), to understand challenges and opportunities for constructing a trajectory of communication leading towards a good death experience. Findings from two focus groups with nine clinicians' and 12 individual interviews, four of which were follow up interviews after the focus groups, were guided by framework analysis and revealed three themes, constructing language choices, roles and responsibilities, and socio-cultural considerations. We used the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) to make sense of the findings and discuss implications for language use throughout the EOL process. We argue additional efforts should be made in recognizing the value of presence checks, re-constructing advance care planning, and utilizing different forms of media as an educational tool and connection mechanism for clinicians with patients and families to achieve a timely engagement of EOL conversations for all healthcare participants.

Hospice Patient Care Goals and Medical Students' Perceptions: Evidence of a Generation Gap?

BACKGROUND: The ability to perceive care goals of the dying may be an indicator of future quality patient-centered care. Research conducted on end-of-life goals indicates discrepancies between patients and physicians. OBJECTIVE: The aim of this study is to compare end-of-life care goals of hospice patients and medical student perceptions of patient care goals. DESIGN: Hospice patients and medical students were surveyed on their care goals and perceptions, respectively, using an 11-item survey of goals previously identified in palliative care literature. Medical student empathy was measured using the Interpersonal Reactivity Index. SETTINGS/PARTICIPANTS: Eighty hospice patients and 176 medical students (97 first-year and 79 third-year) in a New York State medical school. RESULTS: Medical students ranked 7 of the 11 care goals differently than hospice patients: not being a burden to family (p < .001), time with family and friends (p = .002), being at peace with God (p < .001), dying at home (p = .004), feeling that life was meaningful (p < .001), living as long as possible (p < .001), and resolving conflicts (p < .001). Third-year students were less successful than first-year students in perceiving patient care goals of hospice patients. No significant differences in medical student empathy were found based on student year. CONCLUSIONS: Medical students, while empathetic, were generally unsuccessful in perceiving end-of-life care goals of hospice patients in the psychosocial and spiritual domains. Differences impeding the ability of medical students to understand these care goals may be generationally based. Increased age awareness and sensitivity may improve future end-of-life care discussions. Overall, there is a need to recognize the greater dimensionality of the dying in order to provide the most complete patient-centered care.

End-of-Life Dreams and Visions and Posttraumatic Growth: A Comparison Study.

Background: End-of-life dreams and visions (ELDVs) can provide both meaning and comfort to individuals nearing death. While research has examined the prevalence and content of ELDVs, little is known on how dreaming at end of life may affect psychological processes. Objective: This study aimed to explore differences in posttraumatic growth (PTG) between hospice patients who experience ELDVs and hospice patients who do not experience this phenomenon. Design: This is a multimethod cross-sectional comparison study. Settings/Subjects: 70 hospice patients (35 with ELDV experiences and 35 without ELDV experiences) were recruited after being admitted to a hospice inpatient unit. Measurements: PTG was assessed using a modified version of the Posttraumatic Growth Inventory (PTGI). Demographic information, ELDV occurrence, and a brief description of ELDVs were also collected. Results: Significant differences emerged between groups in terms of personal strength (p = 0.012), spiritual change (p = 0.002), and overall PTG (p = 0.019). Patients with ELDV experiences had higher scores on all subscales as well as overall PTG compared to nondreaming patients. Conclusions: Dreams and visions at the end of life affect PTG of dying individuals in hospice care. Further research should be conducted between groups to examine the effects ELDVs may have on other psychological processes.

Expanding the Understanding of Content of End-of-Life Dreams and Visions: A Consensual Qualitative Research Analysis.

Background: Research has established End-of-Life Dreams and Visions (ELDVs) as prevalent, meaningful valid experiences that may help patients cope with illness and approaching death. However, no inductive qualitative analysis has explored the phenomenology of ELDVs from the perspective of hospice homecare patients. Objective: The purpose of this study is to evaluate the content of ELDVs by using a rigorous qualitative approach. Design: Five hundred forty-eight ELDVs were collected from weekly interviews of hospice homecare patients and analyzed by using Consensual Qualitative Research Methodology. Settings/Subject: Participants were enrolled in a county-wide hospice homecare program between January 2013-March 2015. Results: The following domains emerged: (1) Interpersonal, (2) Affective Experience and Reflection, (3) Activities, and (4) Setting/Location. Conclusions: This study suggests that ELDV content may include a broader spectrum of experiences that reflect waking life than previously believed. Clinical implications suggest that it may be important for providers to engage with ELDVs, as they are psychologically significant experiences that may be a source of clinical insight.

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention.

BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.

"People don't understand what goes on in here": A consensual qualitative research analysis of inmate-caregiver perspectives on prison-based end-of-life care.

BACKGROUND: The age demographic of the incarcerated is quickly shifting from young to old. Correctional facilities are responsible for navigating inmate access to healthcare; currently, there is no standardization for access to end-of-life care. There is growing research support for prison-based end-of-life care programs that incorporate inmate peer caregivers as a way to meet the needs of the elderly and dying who are incarcerated. AIM: This project aims to (a) describe a prison-based end-of-life program utilizing inmate peer caregivers, (b) identify inmate-caregiver motivations for participation, and (c) analyze the role of building trust and meaningful relationships within the correctional end-of-life care setting. DESIGN: A total of 22 semi-structured interviews were conducted with inmate-caregivers. Data were analyzed using Consensual Qualitative Research methodology. SETTING/PARTICIPANTS: All inmate-caregivers currently participating in the end-of-life peer care program at Briarcliff Correctional Facility were given the opportunity to participate. All participants were male, over the age of 18, and also incarcerated at Briarcliff Correctional Facility, a maximum security, state-level correctional facility. RESULTS: In total, five over-arching and distinct domains emerged; this manuscript focuses on the following three: (a) program description, (b) motivation, and (c) connections with others. CONCLUSION: Findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining access to patient-centered end-of-life care and include potential inmate-caregiver rehabilitation, correctional medical staff feeling supported, and correctional facilities meeting end-of-life care mandates. Additional research is imperative to work toward greater standardization of and access to end-of-life care for the incarcerated.

Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

OBJECTIVE: Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. BACKGROUND: Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. METHODS: A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. RESULTS: An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. DISCUSSION: High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

A consensual qualitative research analysis of the experience of inmate hospice caregivers: Posttraumatic growth while incarcerated.

A growing number of correctional facilities train inmates to provide end-of-life care for dying inmates. This study explores the phenomenological perspective of inmate-caregivers participating in an inmate-facilitated hospice program (IFHP) with regard to meaning and purpose in life, attitudes on death and dying, and perceived personal impact of participation. Twenty-two inmate-caregivers were interviewed at a maximum-security state correctional facility in the United States. The interviews were transcribed verbatim and analyzed using the Consensual Qualitative Research Methodology. Results suggest that participating in an IFHP may facilitate personal growth and transformation that mirrors the tenets of posttraumatic growth.