First name
Wynne
Last name
Morrison

Title

Parents as Advocates for Pediatric Palliative Care.

Year of Publication

2021

Date Published

2021 Oct 01

ISSN Number

1098-4275

Abstract

<p>Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.</p>

DOI

10.1542/peds.2021-052054

Alternate Title

Pediatrics

PMID

34599007

Title

Changes Over Time in Good-Parent Beliefs Among Parents of Children with Serious Illness: A Two-Year Cohort Study.

Year of Publication

2019

Date Published

2019 Apr 23

ISSN Number

1873-6513

Abstract

<p><strong>BACKGROUND: </strong>Parents of seriously ill children hold personal beliefs about what they should do to be good parents. How these beliefs change over time is unknown.</p>

<p><strong>OBJECTIVE: </strong>Describe the pattern of Good-Parent Beliefs over time, and determine whether parents' hopeful patterns of thinking, affect, and perceived child's health are associated with changes in beliefs at 12 and 24 months.</p>

<p><strong>METHODS: </strong>Our longitudinal sample included 124 parents of 100 children hospitalized with serious illness. We used latent transition models (LTM) to classify parents into groups with similar Good-Parent Beliefs during the baseline and follow-up periods, and modeled the change in good-parent beliefs over time as a function of covariates using generalized linear mixed models.</p>

<p><strong>RESULTS: </strong>Two parent belief profiles emerged from the LTM: Loved ("Making sure my child feels loved", n=61 at baseline) and Informed ("Making informed decisions", n=63 at baseline). At 12 months, 21 parents (20.4%) had moved into the Loved group and no parents transitioned to the Informed group. By 24 months, 8 parents transitioned to the Loved group and 4 to the Informed group (13.04%). Transition into the Loved group was associated with parents' baseline degree of hopeful thinking and positive perceptions of child's health at baseline.</p>

<p><strong>CONCLUSION: </strong>Some parents change their parenting priorities over time. Hopeful patterns of thinking and perception of child health appear to predict change. Clinicians should regularly reevaluate Good-Parent Beliefs over time to promote priority-congruent dialogue.</p>

DOI

10.1016/j.jpainsymman.2019.04.018

Alternate Title

J Pain Symptom Manage

PMID

31026508

Title

Modes of Death Within a Children's Hospital.

Year of Publication

2018

Date Published

2018 Sep 19

ISSN Number

1098-4275

Abstract

<p><strong>BACKGROUND</strong>: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care.</p>

<p><strong>METHODS: </strong>We conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient. Analysis included the calculation of descriptive statistics and multinomial logistic regression modeling.</p>

<p><strong>RESULTS: </strong>We identified 579 patients who were deceased; 61% were &lt;1 year of age. The ICU was the most common location of death (NICU 29.7%; PICU 27.8%; cardiac ICU 16.6%). Among the 5 modes of death, the most common was the withdrawal of life-sustaining technology (40.2%), followed by nonescalation (25.6%), failed resuscitation (22.8%), code then withdrawal (6.0%), and death by neurologic criteria (5.3%). After adjustment, patients who received a palliative care consultation were less likely to experience a code death (odds ratio 0.31; 95% confidence interval 0.13-0.75), although African American patients were more likely than white patients to experience a code death (odds ratio 2.46; 95% confidence interval 1.05-5.73), mostly because of code events occurring in the first 24 hours of hospitalization.</p>

<p><strong>CONCLUSIONS: </strong>Most deaths in a children's hospital occur in ICUs after the withdrawal of life-sustaining technology. Race and palliative care involvement may influence the manner of a child's death.</p>

DOI

10.1542/peds.2017-4182

Alternate Title

Pediatrics

PMID

30232217

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