Parent involvement key to discharge planning for chronically ill children

Last Updated: 2016-12-02

By Marilynn Larkin

NEW YORK (Reuters Health) - Parental priorities, preferences and goals should provide the basis for hospital discharge planning for children with complex medical needs, researchers suggest.

"National health care policy recommends that patients and families be actively involved in discharge planning. Although children with medical complexity account for more than half of pediatric readmissions, scalable, family-centered methods to effectively engage families of CMC in discharge planning are lacking," write Dr. JoAnna Leyenaar of Dartmouth-Hitchock Medical Center in Lebanon, New Hampshire and colleagues.

As reported in Pediatrics, online December 2, the team investigated the preferences, priorities and goals of the parents of children with medical complexity, defined as "children with complex chronic conditions, severe functional limitations, and involvement of multiple health care providers and services." They also talked with health care providers working with the families.

They purposely selected patient participants with diverse types of medical complexity, including cancers, noncancerous multisystem disease and technology dependence; various age groups; and native and non-native English speakers. Family participants were mainly mothers, with diverse race/ethnicity and levels of educational achievement.

Health care participants were expressly selected to include nurses, nurse practitioners and physicians who worked in inpatient and outpatient settings.

The researchers conducted 39 in-depth interviews, including 23 with the children's family caregivers and 16 with health care providers. After analyzing the input from the interviews, the team determined that families' priorities, preferences, and goals for hospital-to-home transitions aligned with seven domains: effective engagement with health care providers; respect for families' discharge readiness; care coordination; timely and efficient discharge processes; pain and symptom control; self-efficacy to support recovery and ongoing child development; and normalization and routine.

The same domains emerged in the interviews with health care providers, with some minor differences.

Dr. Leyenaar told Reuters Health by email, "Very often in pediatrics, we adopt clinical practices that have been successful in adults. The results of this study suggest several areas related to hospital-to-home transitions that may be unique to children with medical complexity - specifically, families' prioritization of normal routines and their desire to support child development concurrent with their child's recovery."

"Parents . . . particularly emphasized how important it was to take into account their normal routines, both during the hospital stay and when planning for discharge," Dr. Leyenaar said. "(Our) results suggest that we have important work to do, both to support families' routines as they come into the hospital, and to take them into consideration when they go home."

Dr. Stephen Lauer, associate chair of pediatrics at the University of Kansas Hospital, told Reuters Health that many of the issues raised in the study are "everyday concerns" at his hospital, whether for children or adult patients, and with an additional burden in that some families don't speak English.

Specifically, Dr. Lauer said by email, the authors "note the complexity of the whole process, the multiple handoffs of information often to people with no prior knowledge of their children or their history. The chances for a breakdown in that handoff - e.g., inaccurate information transfer or just deficits in information - are huge."

"Too often the goals are those of the inpatient team, not those of the family," he continued. "These goals can be very different and the inpatient team won't know about those goals if they don't ask."

"The passing on of information to the outpatient team is frequently terrible," he observed. "Very frustrating . . . and can take a long time to sort out. While the inpatient team often has a specific care coordination person such as a social worker, that person may not be well identified in the outpatient world. That lack of continuity of care leads to poor outcomes, such as readmissions and lots of anxiety for the family and patient."

'The idea that discharge begins at admission, which is frequently mentioned (in the study), is not frequently put into practice," Dr. Lauer said. "This leads to the comments about what appears to be a hasty, pressured discharge even after the patient has been in the hospital for many days."

"Overall, communication of complex information in a stressful environment without a structured process is frequently going to go poorly despite the best intentions of all those involved," he concluded.

Dr. Christopher Timan, medical director, Children's Homecare Services at Nationwide Children's Hospital in Columbus, Ohio, told Reuters Health, "Parents contribute as vital members of the health care team and are the greatest advocates for keeping their children out of the hospital and assuring compliance with home care plans. Parents need to feel supported and that their child will be safe and comfortable in the transition to home."

"Discharge home care planning begins on hospital admission," he said by email, "and health care providers must consider the home environment, siblings, and the home routine, especially for pediatric patients who are technology-dependent, requiring G-tube feedings or respiratory support in the home."

Dr. Timan concluded, "Hospitals must allow parents to assume care of their child while in the hospital so they can help identify potential barriers to home care. Parents need to feel safe to ask questions, and to discuss barriers in the home such as stairs or need for storage space for supplies."

SOURCE: http://bit.ly/2ghMnJq

Pediatrics 2016.