Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

Weaver, Meaghann S.; Neumann, Marie L.; Lord, Blyth; Wiener, Lori; Lee, Junghyae; Hinds, Pamela S.

doi:10.3390/children7120265

Cited by 7 publications

(9 citation statements)

References 23 publications

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“…Survey respondents included 60 biological mothers, 5 fathers, and 2 foster parents or legal guardians of sons (52%) and daughters (48%). 14 The average age for living children was 7.6 years (mean duration of illness was 6.7 years). Eleven bereaved parents participated, with their children having lived a mean lifespan of six years.…”

Section: Resultsmentioning

confidence: 99%

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Care Provider Behaviors That Shape Parent Identity as a “Good Parent” to Their Seriously Ill Child

Neumann

Weaver

Lord

et al. 2021

Palliative Medicine Reports

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Background: Parents of medically complex children hold deeply personal definitions of how to be ''good parents'' that guide their medical decision making and interactions with providers and are impacted by provider behaviors.Objective: This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their ''good parent'' definitions. Methods: A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed-and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Results: Respondents' medical decisions are driven by goals of unselfishly doing what is best for my child (61%) and being my child's voice (18%). Almost half indicated that their personal ''good parent'' definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal ''good parent'' definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their ''good parent'' beliefs. Conclusions:The findings indicate that trusted provider-initiated conversations about ''good parent'' beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their ''good parent'' beliefs.

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Section: Resultsmentioning

confidence: 99%

“…Findings related to respondents' ''good parent'' definition, its development over time, and caregivers' sense of living up to their definitions are described in detail elsewhere. 14 A total of eight survey questions were analyzed to investigate the impact of provider behaviors on parents' ''good parent'' beliefs (Table 2).…”

Section: Resultsmentioning

confidence: 99%

Care Provider Behaviors That Shape Parent Identity as a “Good Parent” to Their Seriously Ill Child

Neumann

Weaver

Lord

et al. 2021

Palliative Medicine Reports

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“…More than half of assigned medically necessary hours are not filled because of staff shortages and wait lists 4 . Additional barriers to accessing respite services include sociocultural interpretations of receiving non–family-based help or self-judgment regarding breaks from what may be perceived as parental duty 26 …”

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confidence: 99%

“…4 Additional barriers to accessing respite services include sociocultural interpretations of receiving non-familybased help or self-judgment regarding breaks from what may be perceived as parental duty. 26 Little is known on the state-level provision of respite services available to families of children with CMC. Although accessible and acceptable respite services are notably beneficial for children receiving palliative care, 27 a landscape summation of available respite offerings in the United States is lacking.…”

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confidence: 99%

A Narrative Review of Pediatric Respite Care Initiatives in the United States

Ferragamo

Pituch

Sorkin

et al. 2022

J Hosp Palliat Nurs

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Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.

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“…Second, research aiming to understand how conditions that impact (or may come to) the health of parents and children influence parenting capacity or mediating processes. This line includes the papers of Burns et al [13], about the practice of physical activity; Uhm and Kim [14] focused on the impact of diabetes on parents' quality of life; and Weaver et al [15] centered on parenting in the face of complex medical needs. Third, parental behavior in the face of interventions (medical, psychological, social, educational, or multidisciplinary) raised by health needs, developed in different contexts (school, hospital, domestic, residential care, etc.)…”

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confidence: 99%