Measuring Parent Satisfaction in the PICU Across the World: Does One Size Fits All?*

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Excerpt

PICUs are complex environments where specialist trained healthcare professionals are working hard to optimize health outcomes for critically ill children. The successes of the advanced PICU treatments are improved mortality rates. However, the reverse is that children might be prone to new morbidities, such as reported in a multicenter study where the occurrence rate of new morbidity was 4.8%, twice the mortality rate (1). Another challenge for PICU staff is the expansion of family-centered care in clinical practice. In brief, family-centered care refers to respecting and being responsive to the needs and values of family members (2).
Although family-centered care is standard practice in the many PICUs, the reality remains that in many countries across the world parents are not fully incorporated as partners in care. Even in PICUs where it is claimed that parents are fully involved in care, such as their presence during medical rounds, resuscitation, and in decision-making processes, there is limited evidence of effective family-centered care interventions (3). This was recently highlighted in the new guidelines for family-centered care in the ICU which provided weak recommendations for clinical practice (4). More importantly, evidence of reliable parent reported outcome measures to evaluate the impact of family-centered care interventions has been sparse.
Few parent satisfaction instruments in PICU have been developed and tested in recent years. The pediatric Family Satisfaction in the ICU 24 (pFS-ICU 24) is an adapted version of the FS-ICU survey (5). The pFS-ICU 24 survey has 24 Likert-scale questions divided in two domains: satisfaction with care (14 questions) and satisfaction with medical decision-making (10 questions). The survey was tested among 50 parents or caregivers and revealed adequate psychometric properties (5). The authors acknowledge the limitations of the small sample size. But more interestingly, the main limitation might be that the survey has not been translated and tested in different languages. In addition, the pFS-ICU 24 survey was derived from the adult ICU version which does not specifically originated from a family-centered care perspective but from frameworks of patient satisfaction, decision-making, and quality of end-of-life care (6).
Family-centered care is widely implemented in pediatric healthcare and in PICUs around the world. Thus, instruments measuring parent satisfaction in the PICU should ideally be based on these principles. The family-centered care scale (FCCS) is one of the few instruments related to the core principles of family-centered care (7). The FCCS was developed and tested in three phases. In the last phase, the shortened version with seven questions was validated among 454 parents in a children’s hospital in the United States (7). Although not specifically designed for measuring parent satisfaction in the PICU, the FCCS could be an appropriate instrument for parents in the PICU given the short and easy design. However, a major limitation of the FCCS is that it measures the perceptions of parents regarding nursing care only.
Two other parent satisfaction instruments have been developed in the Netherlands: the EMpowerment of PArents in The Intensive Care (EMPATHIC) questionnaire and the shortened version EMPATHIC-30 (8, 9). The 57-item EMPATHIC was developed by consultation rounds with parents and PICU staff in eight children’s hospitals (10, 11). The items in both instruments are divided in five domains related to family-centered care principles: information, care and treatment, organization, parental participation, and professional attitude. Statistical redundancy of the EMPATHIC instrument to the shortened version was achieved by 3,354 parents who completed the questionnaire (8). The explained variances of the 30 items on domain level ranged between 85% and 93% and on total items level 97%.

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