Psychometric evaluation of a modified version of the family satisfaction in the ICU survey in parents/caregivers of critically ill children*.

OBJECTIVES: The Family Satisfaction in the Intensive Care Unit 24 (FS-ICU 24) survey consists of two domains (overall care and medical decision-making) and was validated only for family members of adult patients in the ICU. The purpose of this study was to evaluate the internal consistency and construct validity of the FS-ICU 24 survey modified for parents/caregivers of pediatric patients (Pediatric Family Satisfaction in the Intensive Care Unit 24 [pFS-ICU 24]) by comparing it to McPherson's PICU satisfaction survey, in a similar racial/ethnic population as the original Family Satisfaction in the Intensive Care Unit validation studies (English-speaking Caucasian adults). We hypothesized that the pFS-ICU 24 would be psychometrically sound to assess satisfaction of parents/caregivers with critically ill children. DESIGN: A prospective survey examination of the pFS-ICU 24 was performed (1/2011-12/2011). Participants completed the pFS-ICU 24 and McPherson's survey with the order of administration alternated with each consecutive participant to control for order effects (nonrandomized). Cronbach's alphas (α) were calculated to examine internal consistency reliability, and Pearson correlations were calculated to examine construct validity. SETTING: University-affiliated, children's hospital, cardiothoracic ICU. SUBJECTS: English-speaking Caucasian parents/caregivers of children less than 18 years old admitted to the ICU (on hospital day 3 or 4) were approached to participate if they were at the bedside for greater than or equal to 2 days. MEASUREMENTS AND MAIN RESULTS: Fifty parents/caregivers completed the surveys (mean age ± SD = 36.2±9.6 yr; 56% mothers). The α for the pFS-ICU 24 was 0.95 and 0.92 for McPherson's survey. Overall, responses for the pFS-ICU 24 and McPherson's survey were significantly correlated (r = 0.73; p < 0.01). The average overall pFS-ICU 24 satisfaction score was 92.6 ± 8.3. The average pFS-ICU 24 satisfaction with care domain and medical decision-making domain scores were 93.3 ± 8.8 and 91.2 ± 8.9, respectively. CONCLUSIONS: The pFS-ICU 24 is a psychometrically sound measure of satisfaction with care and medical decision-making of parents/caregivers with children in the ICU.

Chronic Pain in Children: A Look at the Referral Process to a Pediatric Pain Clinic.

We reviewed the referral pattern of children with chronic pain to a specialized pediatric pain clinic. Data were obtained from referring physicians and medical records and during an interview with patients and their parents by physicians and a psychologist. We analyzed the following: referral diagnosis, demographics, duration of symptoms, number of physicians previously consulted, school attendance, sports activities, presence of psychological disorders, final team diagnosis, and outcomes. Children had been experiencing pain for 34 ± 55 months. Patients had consulted on average 3 physicians in addition to their pediatrician. 32% of the patients had missed at least 10 days of school in a calendar year, and 47% had stopped playing sports. 15% had an operation because of pain that had been unsuccessful. The most common missed diagnosis was anxiety (25%) and depression (13%). 69% of the patients were back to school and/or playing sports within 4 months from our initial consultation. 32% of the patients did not make any progress during the follow-up period. The most common reasons for failure to improve were no compliance with the recommended treatments and poorly controlled major mood disorder. The time to refer children with chronic pain for specialized care could be extremely long causing significant social and psychological consequence.

Satisfaction with care and decision making among parents/caregivers in the pediatric intensive care unit: a comparison between English-speaking whites and Latinos.

PURPOSE: Because of previously documented health care disparities, we hypothesized that English-speaking Latino parents/caregivers would be less satisfied with care and decision making than English-speaking non-Latino white (NLW) parents/caregivers. MATERIALS AND METHODS: An intensive care unit (ICU) family satisfaction survey, Family Satisfaction in the Intensive Care Unit Survey (pediatric, 24 question version), was completed by English-speaking parents/caregivers of children in a cardiothoracic ICU at a university-affiliated children's hospital in 2011. English-speaking NLW and Latino parents/caregivers of patients, younger than 18 years, admitted to the ICU were approached to participate on hospital day 3 or 4 if they were at the bedside for greater than or equal to 2 days. Analysis of variance, χ(2), and Student t tests were used. Cronbach αs were calculated. RESULTS: Fifty parents/caregivers completed the survey in each group. Latino parents/caregivers were younger, more often mothers born outside the United States, more likely to have government insurance or no insurance, and had less education and income. There were no differences between the groups' mean overall satisfaction scores (92.6 ± 8.3 and 93.0 ± 7.1, respectively; P = .80). The Family Satisfaction in the Intensive Care Unit Survey (pediatric, 24 question version) showed high internal consistency reliability (α = .95 and .91 for NLW and Latino groups, respectively). CONCLUSIONS: No disparities in ICU satisfaction with care and decision making between English-speaking NLW and Latino parents/caregivers were found.

Developing a pediatric palliative care service in a large urban hospital: challenges, lessons, and successes.

BACKGROUND AND AIM: We report the process of creating a new palliative care service at a large, urban children's hospital. Our aim was to provide a detailed guide to developing an inpatient consultation service, along with reporting on the challenges, lessons, and evaluation. METHODS: We examined the hiring process of personnel and marketing strategies, a clinical database facilitated ongoing quality review and identified trends, and a survey project assessed provider satisfaction and how referring physicians used the palliative care service. RESULTS AND CONCLUSION: The pilot phase of service delivery laid the groundwork for a more effective service by creating documentation templates and identifying relevant data to track growth and outcomes. It also allowed time to establish a clear delineation of team members and distinction of roles. The survey of referring physicians proved a useful evaluation starting point, but conclusions could not be generalized because of the low response rate. It may be necessary to reconsider the survey technique and to expand the sample to include patients and families. Future research is needed to measure the financial benefits of a well-staffed inpatient pediatric palliative care service.