Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study

Mooney-Doyle, Kim; Deatrick, Janet A.; Ulrich, Connie M.; Meghani, Salimah H.; Feudtner, Chris

doi:10.1089/jpm.2017.0054

Cited by 38 publications

(64 citation statements)

References 65 publications

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“…24 In addition, parents expressed angst over their role of being a parent to multiple children. Parents feel pulled between two fronts and describe this as, “no one is getting what they need and won’t be for a while.” 7 Parents may have goals for themselves in caring for all of their children they are unable to meet because demands on their time and energy are numerous or intense.…”

Section: Resultsmentioning

confidence: 99%

“…Parents have described a process of trading-off the needs of one family member in order to meet the needs of another while caring for a seriously ill child. 7 Understanding how the concept of moral distress applies to families of seriously ill children can inform how providers undertake discussions on goals of care and collaborate with families and how ethics consultants approach conflicts between families and healthcare providers that arise in the day-to-day care of these children. Therefore, we present the results of our dimensional analysis review to answer the question, “What is the nature of parent moral distress in serious pediatric illness?…”

Section: Introductionmentioning

confidence: 99%

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Parent moral distress in serious pediatric illness: A dimensional analysis

Mooney-Doyle

Ulrich

2020

Nurs Ethics

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Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Parent moral distress in serious pediatric illness: A dimensional analysis

Mooney-Doyle

Ulrich

2020

Nurs Ethics

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“…The nursing shortage translates into a lived experience for families with children with complex medical conditions through employment, economic, emotional, and psychosocial impact. 34 …”

Section: Discussionmentioning

confidence: 99%

Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care

Weaver

Wichman

Bace

et al. 2018

J Hosp Palliat Nurs

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The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage (P < .02) correlated with the gap in home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.

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“…This finding is congruent with our research. Authoritarian style is a part of overparenting, which comprises two related aspects of over-controlling and overprotection (16). Furthermore, previous studies have found that over-controlling parents are more prone to depression and overprotective parents are more prone to anxiety (17).…”

Section: Discussionmentioning

confidence: 99%

Distress Tolerance in Mothers of Children with Cancer for Predicting Her Parenting Style and Child’s Attachment Behaviors: A Cross Sectional Study

Firoozi

2020

Int J Cancer Manag

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Background: Childhood cancer leads to emotional disruption and distress in mothers. Objectives: The aim of this study was to determine how much maternal distress tolerance could predict parenting style and the child's attachment behaviors. Methods: In this cross-sectional study, which was carried out in May and June 2018 in Mahak Hospital (a specialized pediatric oncology hospital), based on Morgan tables, 130 mothers of children with cancer (leukemia or brain tumor) participated. The available sampling method was used. Simultaneous multiple regression analysis by SPSS 24 was applied for data analysis. Results: The results of this study showed that the level of low distress tolerance predicted authoritarian parenting style (P < 0.05) and high tolerance predicted logistic authority (P < 0.001), while the permissive style was not predicted with maternal disturbances. On the other hand, high tolerance foresaw positive adaptive evolution and low tolerance projected emotional response and negative behaviors of the child with cancer (P < 0.001), but could not predict avoidance behavior. Conclusions: Mothers with more ability for disruption tolerance tended to use the authoritative parenting style and mothers, who were more disrupted, were more likely to use authoritarian style. Mothers with less disturbance in the development of positive adaptive evolution and management of emotional reactions and negative behaviors in the patient's child were more effective (or at least had a more positive perception of their child's excitement and behavior), but maternal disturbances had a disturbing behavior in children with cancer. The education of distress management is recommended for mothers with a child with cancer.

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Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study

Abstract: Future research can further examine trade-offs and associated effects, how to support parent problem-solving and decision-making around trade-offs, and how to best offer social services alongside illness-directed care.

Cited by 38 publications

References 65 publications

Parent moral distress in serious pediatric illness: A dimensional analysis

Parent moral distress in serious pediatric illness: A dimensional analysis

Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care

Distress Tolerance in Mothers of Children with Cancer for Predicting Her Parenting Style and Child’s Attachment Behaviors: A Cross Sectional Study

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