The Tenacity and Tenuousness of Hope

Barrera, Maru; Granek, Leeat; Shaheed, Jenny; Nicholas, David; Beaune, Laura; D’Agostino, Norma Mammone; Bouffet, Éric; Antle, Beverly

doi:10.1097/ncc.0b013e318291ba7d

Cited by 45 publications

(50 citation statements)

References 16 publications

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“…Individuals sometimes make poor decisions if they do not have sufficient time to replenish self-regulation resources [36,37]. Parents of seriously ill children often report feeling physically and emotionally depleted [38] and may not have sufficient self-regulation resources to reevaluate their initial goals.…”

Section: Discussionmentioning

confidence: 99%

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

et al. 2014

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BackgroundParents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling.DiscussionRegoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care.SummaryThe psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.

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Section: Discussionmentioning

confidence: 99%

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

et al. 2014

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“…A child's uncertain life expectancy looms over those who love and care for them. There are multiple studies highlighting the importance of supporting children diagnosed with life-limiting (LLI) and/or life-threatening illnesses (LTI) and their parents' physical, emotional, cultural, spiritual, and psychosocial needs (Bally et al, 2014a; Barrera et al, 2013;O'Shea & Kanarek, 2013). However, research consistently identified that parents' needs are not being met and supportive interventions specific to this population are needed and limited in the current literature (Bally et al, 2014b;Rempel, Ravindran, Rogers, & Magill-Evans, 2012).…”

Section: Introductionmentioning

confidence: 99%

“…It is not clearly understood how parents of children with lifethreatening or life-limiting conditions should be supported (O'Shea & Kanarek, 2013). A review of related literature about parental caregivers and supportive interventions revealed that caregivers repeatedly identified a lack of psychosocial support, but very few concrete interventions used to support caregivers are available (Bally et al, 2014a;Barrera et al, 2013;Revier, Meiers, & Herth, 2012). Many parental coping mechanisms have been qualitatively analyzed in research regarding caregivers' experiences and have provided important insight into potential psychosocial interventions.…”

Section: Introductionmentioning

confidence: 99%

Supporting parental caregivers of children living with life‐threatening or life‐limiting illnesses: A Delphi study

Smith

Bally

Holtslander

et al. 2018

Specialist Pediatric Nursing

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Background The impact of a child s life‐limiting or life‐threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking. Purpose: The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three‐phase study, the findings provided direction in the development of a theory‐based hope intervention. Design and Methods A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness. Results Sixty‐eight experts consisting of parental caregivers of children diagnosed with life‐limiting or life‐threatening illnesses and those who care for them (community members, nurses, social workers, and physicians) were recruited to participate. Through three rounds of survey questions, response rates ranged from 92–97%. A consensus revealed eight major themes that support parental hope: Organize Basic Needs; Connect with Others; Prioritize Self‐care; Obtain Meaningful Information; Take Things Day by Day; Advocate for Parental Participation; Manifest Positivity; and Celebrate Milestones. Practice Implications This study identified a wide variety of psychosocial needs for parental caregivers. Results also offered direction for a theory‐based hope intervention while highlighting the need for additional research in this area. These results will provide the foundation for a booklet parents can work through in their journey of caring for a child with a life‐limiting or life‐threatening illness.

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“…Social support can be thought of as a social ‘fund’ from which people may draw to help manage stressors (Thoits, 1995: 64), and research consistently finds that access to social support is an important factor in shaping families’ abilities to manage the stress associated with caring for a child with cancer (Fletcher, 2011; Hoekstra-Weebers et al, 2011; Manne et al, 2000; Rini et al, 2008; Trask et al, 2003; Wijnberg-Williams et al, 2006). For example, access to social support improves parents’ psychological and emotional resiliency throughout their child’s cancer therapy (Barrera et al, 2013; Greening & Stoppelbein 2007; Manne et al, 2000). Parents who have discussions about their child’s treatment with health care professionals feel they are better equipped to make decisions about their child’s care (Markward et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

The architecture of support: The activation of preexisting ties and formation of new ties for tailored support

Gage‐Bouchard

LaValley

Panagakis

et al. 2015

Social Science & Medicine

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This study examines differences in the resources, information, and support parents coping with pediatric cancer accessed from different types of network contacts. Using interviews with parents of childhood cancer patients (N = 80 parents), we examine (1) if parents rely on different types of network ties to access tailored information, resources or support; (2) differences in the nature or utility of information, resources, and support offered by different types of network contacts; and (3) the role of health-related professionals in brokering new network ties. Findings show that after a child’s cancer diagnosis, parents received support from a broad portfolio of network members, which included preexisting network ties to friends and families as well as the formation of new ties to other cancer families and health-related professionals. Family, friends, and neighbors offered logistical support that aided balancing preexisting work and household responsibilities with new obligations. Parents formed new ties to other families coping with cancer for tailored health-related emotional and informational support. Health-related professionals served as network brokers, who fostered the development of new network ties and connected parents with supportive resources.

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The Tenacity and Tenuousness of Hope

Cited by 45 publications

References 16 publications

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

Supporting parental caregivers of children living with life‐threatening or life‐limiting illnesses: A Delphi study

The architecture of support: The activation of preexisting ties and formation of new ties for tailored support

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