The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study

Abstract

BACKGROUND AND OBJECTIVES: Families of children with medical complexity are experts on their child's baseline behavior and temperament and may recognize changes in their hospitalized child's health before clinicians. Our objective was to develop a comprehensive understanding of how families identify and communicate their child's deteriorating health with the hospital-based health care team. METHODS:In this qualitative study, our multidisciplinary team recruited family members of hospitalized children with neurologic impairment. Interviews, conducted in the hospital, were audio recorded, deidentified, and transcribed. By using inductive thematic analysis, each transcript was independently coded by 3 or 4 team members. Members met regularly to reach consensus on coding decisions. Patterns observed were organized into themes and subthemes.RESULTS: Participants included 28 family members of 26 hospitalized children 9 months to 17 years of age. Children had a mean of 9 hospitalizations in the previous 3 years. Analysis resulted in 6 themes. First, families often reported their child "writes his own book," meaning the child's illness narrative rarely conformed to textbooks. Second, families developed informal, learned pathways to navigate the inpatient system. Third, families stressed the importance of advocacy. Fourth, families self-identified as "not your typical parents" and discussed how they learned their roles as part of the care team. Fifth, medical culture often did not support partnership. Finally, families noted they are often "running on empty" from stress, fear, and lack of sleep.CONCLUSIONS: Families of children with medical complexity employ mature, experience-based pathways to identify deteriorating health. Existing communication structures in the hospital are poorly equipped to incorporate families' expertise.

Clinical utility and acceptability of a whole-hospital, pro-active electronic paediatric early warning system (the DETECT study): A prospective e-survey of parents and health professionals

“…However, acceptability could have been improved for some parents if more information (e.g., the results of their child’s vital signs) had been shared with them. It is interesting to note that other escalation of care studies focus attention on information and/or education about how to express concern [ 48 – 50 ], but do not present evidence of educating parents about their child’s vital signs.…”

Parents’ experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic pediatric early warning system (the DETECT study): A qualitative interview study

“…None of the parents perceived the parental concern question which is part of DETECT e-PEWS as being problematic or a burden (TFA-C2) ( 29 ) and it was a clear way they could engage with the system (TFA-C7) ( 29 ); indeed, this was welcomed by them as they saw this as one of the ways HPs were keeping their child safe. It is clear from other research that parents value the opportunity to be heard and involved in their child’s care, particularly if they are experts in their child’s health care needs ( 26 ). Some research shows that parents are considered to be trustworthy partners in escalating care ( 39 ), and other studies show that raising awareness is key to success ( 16 ).…”

“…Parents whose child requires admission to an intensive care unit have their lives turned upside down and liken the experience to “riding a rollercoaster” ( 25 ). Some parents (e.g., those with children with complex medical conditions) may be “experts” in their child’s vital signs and health status and may recognize changes before HPs ( 26 ). However, this is not always the case and only a few studies have examined parents’ understandings of vital sign observations or experiences of PEW systems ( 16 , 17 ) and it is noted that few PEWS include parent concern as an item ( 27 ) with calls for parents’ concerns to be investigated in future studies ( 28 ).…”

Clinical progress note: Situation awareness for clinical deterioration in hospitalized children

“…With regard to clinical deterioration, families play a vital role in recognizing when a child's clinical status is worsening; this is particularly important for children with medical complexity, for whom the family voice is imperative to determining when a child is significantly different from their baseline status. 14 At one center, family-activated RRT calls represented a small (2.9%) but important proportion of all RRT activations, identifying instances of both clinical deterioration and communication failures. 15 The updated SA model at Cincinnati Children's Hospital explicitly incorporates families into the model by listing families as an important component of any SA huddle, utilizing door signage with prompts to describe key SA concepts to families, and incorporating caregivers into a posthuddle checklist.…”

“…In addition to improving shared SA among clinical staff, collaborating with patients and families to understand and mitigate preventable harm is a critical area of focus. With regard to clinical deterioration, families play a vital role in recognizing when a child's clinical status is worsening; this is particularly important for children with medical complexity, for whom the family voice is imperative to determining when a child is significantly different from their baseline status 14 . At one center, family‐activated RRT calls represented a small (2.9%) but important proportion of all RRT activations, identifying instances of both clinical deterioration and communication failures 15 .…”