The challenges of PICU research: Lessons learned from a minimal-risk study with PICU parents.

Research conducted in pediatric intensive care units (PICUs) with families is essential to advancing evidenced-based practice and improving patient outcomes in this unique setting. However, several ethical, logistical, and methodological challenges have been cited in the literature as having a significant effect on the development of PICU research. Investigators at a large midwestern health care center encountered several challenges during the course of a minimal-risk, survey-based study with parents of PICU patients. This manuscript aims to highlight the challenges faced by the research team, which included challenges related to the environment of the PICU, the patients' length of stay, the health status of the patient, and the etiology of the patient's admission, as well as share the actions that the research team took to address these challenges.

A Qualitative Study of Parents' Experiences in the Pediatric Intensive Care Unit: Riding a Roller Coaster.

PURPOSE: Post-traumatic stress disorder rates in parents following PICU admission ranged between 12.2% and 42%. Despite the numbers affected and the magnitude of parents' distress, little is known about parents' experience in the PICU that could be a source of their stress. This study sought to describe parents' experience of the PICU during their child's stay, including their perceived stressors. DESIGN AND METHODS: Single occasion interviews with 15 parents of children with complex medical conditions admitted for 48 or more hours to a tertiary PICU in the USA. Interviews were inductively coded using methods adapted from Grounded Theory. RESULTS: Riding a Roller Coaster was the core construct that explained parents' experiences. Analyses revealed four domains: Being in a New Stressful World, My Brain Is Burning All the Time, Going through a Hurricane of Emotions, and Being in a Safe Place with Great People. CONCLUSION: Despite outstanding medical services, parents were traumatized by seeing their child in a life-threatening situation and were buffeted by a tidal wave of emotions. Parents lived in a constant state of uncertainty, helplessness and fear, not knowing if their child would survive or have devastating outcomes or permanent disabilities. PRACTICE IMPLICATIONS: Supporting parents during their emotional roller coaster ride requires targeted services throughout the child's illness trajectory, including ways to interpret what is happening in the PICU, helping parents self-regulate their stress, and offering services around parents' fears, concerns, and strategies to manage their uncertainty and feelings of helplessness.

Helping Her Heal: Randomized clinical trial to enhance dyadic outcomes in couples.

OBJECTIVE: The objective of this study was to test the short-term efficacy of a brief, fully manualized marital communication and interpersonal support intervention for couples facing recently diagnosed breast cancer. METHODS: A total of 322 women diagnosed within 6 months with stages 0 to III breast cancer and their 322 spouse caregivers were enrolled. Spouses in the experimental group received five 30- to 60-minute intervention sessions at 2-week intervals by master's-prepared patient educators; controls received the booklet, "What's Happening to the Woman I Love?" Outcomes were assessed at 3, 6, and 9 months using the linear mixed models within an intent-to-treat analysis. RESULTS: Compared with controls, at 3 months, spouse caregivers significantly improved on standardized measures of depressed mood, anxiety, cancer-related marital communication, interpersonal support, and self-care. All differences except depressed mood and anxiety were sustained at 9 months. Wives significantly improved at 3 months on marital communication and positive appraisal of spouses' interpersonal support; gains remained significant at 9 months. Compared with controls on chemotherapy, wives in the experimental group additionally improved on depressed mood and tended to improve on anxiety. CONCLUSIONS: A brief, fully manualized intervention delivered directly to spouse caregivers early in the course of their wives' medical treatment improves caregivers' self-care and behavioral-emotional adjustment and wives' positive view of their spouses' support and communication. The brevity and manualized structure of the intervention argue strongly for its scalability, use in cost-sensitive settings, and its potential dissemination through e-health channels.

The Enhancing Connections-Telephone study: a pilot feasibility test of a cancer parenting program.

PURPOSE: The purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer parenting education program, the Enhancing Connections-Telephone (EC-T) Program, on maternal anxiety, depressed mood, parenting competencies, and child behavioral-emotional adjustment and (2) compare those outcomes with outcomes achieved from an in-person delivery of the same program (EC). METHODS: Thirty-two mothers comprised the sample for the within-group design and 77 mothers for the between-group design. Mothers were eligible if they had one or more dependent children and were recently diagnosed with stages 0-III breast cancer. Mothers in both groups received five intervention sessions at 2-week intervals from a patient educator using a fully scripted intervention manual. RESULTS: Outcomes from the within-group analysis revealed significant improvements on maternal anxiety, parenting competencies, and the child's behavioral-emotional functioning. Outcomes from the between-group analysis showed the EC-T did as well or better than EC in positively affecting maternal anxiety, depressed mood, parenting competencies, and the child's behavioral-emotional adjustment. Furthermore, the EC-T had a significantly greater impact than the EC on maternal confidence in helping their family and themselves manage the cancer's impact and in staying calm during emotionally charged conversations about the breast cancer with their child. CONCLUSIONS: Regardless of the channel of delivery, the Enhancing Connections Program has the potential to positively affect parenting competencies and behavioral-emotional adjustment in mothers and dependent children in the first year of stages 0-III maternal breast cancer. Its positive impact from telephone delivery holds promise for sustainability.

Exploring Factors Affecting Parental Psychological Vulnerability During Their Child's PICU Admission: A Prospective Pilot Cohort Study.

INTRODUCTION: Parental psychological responses during their child's pediatric intensive care unit (PICU) admission are often overlooked. This study aimed to identify pre-existing and peri-traumatic factors explaining parental stress and anxiety during their child's PICU admission and one-month follow-up. METHOD: A prospective pilot study included 60 PICU parents. Parental Stressors Scale and State-trait Anxiety Inventory measured stress and anxiety during PICU admission, and the State-trait Anxiety Inventory and Perceived Stress Scale at a one-month follow-up. RESULTS: During PICU admission, parental stress correlated with age, race, and adverse childhood experiences (ACEs), anxiety was linked to income. At one-month follow-up, anxiety related to child's health worries, perceived stress was linked to parental ACEs and education. Parental ACEs predicted perceived stress (b = 0.83, p = .028). Children's diagnoses explained anxiety, particularly respiratory and cardiac diagnoses (b = -13.44, p = .023; -10.03, p = .045). DISCUSSION: Identifying factors helps teams understand parental vulnerability and provide appropriate support.

Parents' Challenges beyond the Pediatric Intensive Care Unit: Fraying at the Seams while Balancing between Two Worlds, Home and Hospital.

BACKGROUND: The dominant tradition in studying parents' responses to their child's hospitalization in the pediatric intensive care unit (PICU) is to focus on their immediate environment and their children's well-being. This view of the parents' experiences fails to describe the broader set of concurrent challenges beyond the PICU that parents carry with them into the PICU. OBJECTIVES: This study describes (a) parents' reactions to juggling their two worlds, home and hospital, when their child is hospitalized in the PICU, and (b) the impact of this juggling on their lives. METHODS: Fifteen parents whose child was admitted into a PICU at a tertiary medical center for children in the Pacific Northwest participated in semi-structured interviews. Data analysis and interpretation were guided by grounded theory. RESULTS: The theory grounded in the data and integrated with the core category was Fraying at the Seams while Balancing between Two Worlds, Home and Hospital. Analyses revealed two categories: Bringing My Life to a Halt and Throwing Our Whole Life Off. CONCLUSION: Even though parents were physically and emotionally present with their child in the PICU, they felt frayed as they concurrently struggled with their physical distance from other children at home. This strain of living in two worlds caused feelings of inadequacy to fulfill their parental role.

Content Validity of Parental Stressor Scale: Pediatric Intensive Care Unit (PSS:PICU).

Around 10% to 42% of parents suffer from post-traumatic stress disorder following child's Pediatric Intensive Care Unit (PICU) admission. What is needed is an understanding of factors associated with parental stress at the beginning of the PICU admission to guide strategies to prevent the development of stress-related morbidity. Only one measure exists to assess sources of PICU-related parental stress, the Parental Stressor Scale: Pediatric Intensive Care Unit (PSS:PICU). However, this scale has not been modified in over 30 years. The purpose of this study is to examine the content validity and descriptive statistics of the PSS:PICU, propose initial refinements of the scale based on interviews and quantitative analyses, and identify threats to validity in this measure using a convergent parallel mixed methods design. Three validity threats were identified: construct underrepresentation, construct-irrelevant variance, and item redundancy. Suggested scale refinements were to delete 17, revise 7, retain 15, and add 16 items for future testing.

Exploratory model of parental stress during children's hospitalisation in a paediatric intensive care unit.

OBJECTIVES: This exploratory study (a) examined pre-existing and peri-trauma risk factors of parental stress during a child's PICU hospitalisation using the Integrative Trajectory Model of Paediatric Medical Traumatic Stress and (b) identified the type of PICU-related stressors that predicted parental stress during the child's PICU hospitalisation. METHODS: A cross-sectional, descriptive correlational design with 81 parents of children admitted 48 or more hours to a Paediatric Intensive Care Unit (PICU). Questionnaires measured parent's and child's demographic and clinical characteristics and parent-reported stressors using the Parental Stressors Scale (PSS:PICU). Analysis included descriptive statistics and multiple linear regression analyses with simultaneous predictor entry. RESULTS: Male parents tended to be significantly more stressed than female parents. Parental stress was significantly increased when parents had one or more stressful life events one-month prior to PICU admission, when the child required ventilatory support, or the child had a cardiovascular diagnosis. Parental stress was also predicted by the child's appearance, procedures, child's behaviour, behaviour of staff, and parental role. CONCLUSION: Nurses are in a prime position to identify parents at potentially high risk for psychological morbidity when they know a parent has had a stressful life event prior to admission, has a child with a cardiovascular diagnosis or requires ventilatory assistance. Nurses can diminish parental stress by interpreting the child's appearance for parents, helping parents understand the procedures being done for the child, interpreting the child's behaviour, explaining the staff's behaviour, and assisting parents to define their parental role during the child's hospitalisation.

Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program.

Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap. Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes. Design: Quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression). Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program. Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment. Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.

Being Fully Present: Gains Patients Attribute to a Telephone-Delivered Parenting Program for Child-Rearing Mothers With Cancer.

BACKGROUND: Oncology nurses can assist patients in gaining skills and confidence in multiple areas of illness self-management, including parenting skills. Child-rearing parents with cancer are a unique population because they must self-manage their illness and also help their child manage the intrusion of cancer on everyday life. The telephone offers an inexpensive channel for nurses to assist mothers in developing competencies to parent their child. The acceptability and attributed gains from such telephone services are unknown. OBJECTIVE: The aims of this study were to (1) describe the gains child-rearing mothers attribute to participation in a nurse-delivered telephone cancer parenting program and (2) assess mothers' evaluation of the telephone as a channel for delivering the program. METHODS: Study participants were child-rearing mothers diagnosed with cancer (N = 31) who had completed a manualized telephone-delivered cancer parenting program by a nurse. Mothers were interviewed 1 month after exiting the program by a specially trained interviewer masked on the content of the program. RESULTS: Most mothers were white (74%), highly educated, and had breast cancer (93.5%). Mothers attributed gains from the program in 3 areas: (1) being fully present for my child, (2) communicating in new ways, and (3) putting away my assumptions. CONCLUSIONS: Communication skills learned from nurses can assist mothers to self-manage the impact of the cancer on their own well-being and add to their parenting skills and competencies to help their children. IMPLICATIONS FOR PRACTICE: The telephone is an effective and indeed preferred channel for delivering services to child-rearing parents impacted by cancer.