Living with uncertainty and hope: A qualitative study exploring parents’ experiences of living with childhood multiple sclerosis

Hinton, Denise; Kirk, Susan

doi:10.1177/1742395316664959

Cited by 46 publications

(101 citation statements)

References 27 publications

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“…Comparable to other literature, the Delphi highlighted the comfort and a sense of purpose that parental caregivers experience when caring for an ill child (Angström-Brännström et al, 2010;Samson et al, 2009). The idea that parents benefited from taking on the role of being an advocate for their child were echoed within literature that described parents feeling in control of their circumstances by being an advocate for their child (Cadell et al, 2012;Hinton & Kirk, 2017;Whiting, 2012).…”

Section: Subprocess Ofmentioning

confidence: 99%

“…Delphi participants agreed that parental caregivers needed access to information that helped them to process and gain control of their situation and other studies have indicated these exact findings (Angström-Brännström et al, 2010;Hinton & Kirk, 2017). In Cadell et al's (2012) mixed-method study of pediatric palliative care parents' personal growth and resources, parents called for a more open process and guidance in finding information for their family.…”

Section: Celebrate Milestonesmentioning

confidence: 99%

“…Manifest Positivity was reflected in a study by Hinton and Kirk (2017) conditions, reoccurring themes that were not prioritized by Delphi participants were identified. One theme repeated in other studies included parents discussing the impact that the financial burden of having an ill child had on their psychosocial well-being (Cadell et al, 2012;Rallison & Raffin-Bouchal, 2013;Wolff, Pak, Meeske, Worden, & Ernest, 2010 (Vernon, 2009).…”

Section: Subprocess Ofmentioning

confidence: 99%

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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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Section: Subprocess Ofmentioning

confidence: 99%

Section: Celebrate Milestonesmentioning

confidence: 99%

Section: Subprocess Ofmentioning

confidence: 99%

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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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“…[9][10][11] Alternatively, parents have reported benefits to uncertainty, including recognizing that uncertainty allows for the possibility for positive outcomes for their child. 6,9,11,12 This dichotomization of uncertainty appraisals is further elucidated by Mishel's Uncertainty in Illness Theory. Mishel argued that uncertainty is classified as neutral until it has been appraised as either a danger or opportunity.…”

Section: Introductionmentioning

confidence: 99%

“…Research has found that uncertainty can negatively affect parental coping and adaptation; and increase feelings of psychological distress, anxiety, depression, and hopelessness . Alternatively, parents have reported benefits to uncertainty, including recognizing that uncertainty allows for the possibility for positive outcomes for their child . This dichotomization of uncertainty appraisals is further elucidated by Mishel’s Uncertainty in Illness Theory.…”

Section: Introductionmentioning

confidence: 99%

Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy

et al. 2019

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Uncertainty is a challenging aspect of caring for children with Duchenne/Becker muscular dystrophies (DBMD). Although uncertainty is often perceived as a state to be avoided, hope may influence caregivers' perceptions of uncertainty as opportunity. The goal of this cross‐sectional quantitative study was to pilot a novel measure of state‐based hope, and test relationships among uncertainty, hope, spirituality, and coping efficacy in mothers of children with DBMD. Mothers (n = 202) were recruited through DuchenneConnect, Parent Project Muscular Dystrophy, and Cincinnati's Children Hospital. A one‐component solution for the novel Parent Hope Scale explained 44.3% of the variance, and the measure showed high internal consistency. Higher hope (P < 0.001), further disease progression (P = 0.042), and older mother's age (P = 0.001) were significantly associated with lower perceptions of uncertainty. Mothers reporting less hope (P < 0.001), higher perceptions of uncertainty (P < 0.001), and less spirituality (P = 0.001) reported lower coping efficacy. As such, hope appears to be a key variable in shaping uncertainty appraisals and facilitating coping efficacy. While further research is needed, counseling aimed at bolstering hope, particularly among less‐hopeful mothers, and interventions to reappraise uncertainty, may be helpful in promoting coping efficacy.

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Holistic Care – Family Partnership in Practice

Strudley‐Brown

2023

Care Planning in Children and Young People's Nursing 2e

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Living with uncertainty and hope: A qualitative study exploring parents’ experiences of living with childhood multiple sclerosis

Abstract: Background: There is growing recognition that multiple sclerosis (MS) is a possible, albeit

Cited by 46 publications

References 27 publications

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

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

Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy

Holistic Care – Family Partnership in Practice

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