Examining the Experiences of Fathers of Children with a Life-Limiting Illness

Nicholas, David; Beaune, Laura; Barrera, Maru; Blumberg, Jonathan; Belletrutti, Mark

doi:10.1080/15524256.2016.1156601

Cited by 43 publications

(114 citation statements)

References 17 publications

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“…Studies in varied contexts have found that males engage in a greater proportion of information-based communication relative to communication focussed on emotional support, relative to females, 43,44 with some evidence to suggest that males may find it harder to communicate with the goal of providing emotional support relative to the goal of information provision. 44 In situations where there is a seriously unwell child, it is commonly reported that mothers spend more time than fathers with the sick child, 45 which may involve being away from the home during the child's hospital admissions. Consequently, fathers may spend more time with the well-siblings at home.…”

Section: Parent and Well-sibling Communication Framework: Gaps In Thementioning

confidence: 99%

Communication between parents and well‐siblings in the context of living with a child with a life‐threatening or life‐limiting condition

Jaaniste

Tan

Aouad

et al. 2020

J Paediatrics Child Health

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Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with comprehending the situation, to help maintain their own ability to function across various life areas or to receive emotional support. There is a need for more investigation into the nature and importance of parent-child communication in the context of living with a seriously ill brother or sister. The current paper presents a framework of parent-sibling communication in the context of living with a seriously unwell child, distinguishing the focus of communication (illness-related vs. non-illness-related) and the purpose of communication (information-provision vs. emotional support). Such a framework offers a holistic approach to exploring some of the challenges of communication between parents and well-siblings. The state of current knowledge regarding the focus and purpose of communication between parents and well-siblings is reviewed, and implications for research and possible clinical applications discussed.

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Section: Parent and Well-sibling Communication Framework: Gaps In Thementioning

confidence: 99%

Communication between parents and well‐siblings in the context of living with a child with a life‐threatening or life‐limiting condition

Jaaniste

Tan

Aouad

et al. 2020

J Paediatrics Child Health

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“…The responsibility for providing care at home is also a heavy psychological load and not easy to delegate. Many of the families living in such conditions therefore need the constant presence of trained personnel, not just occasional home visits . The Veneto Regional Center for Pediatric Palliative Care and Pain Control has been dealing with the needs of children who are eligible for PPC, and their families, for more than a decade and is considered to be a centre of excellence in Italy.…”

Section: Introductionmentioning

confidence: 99%

Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life‐saving devices

Lazzarin¹,

Schiavon²,

Brugnaro

et al. 2017

Acta Paediatrica

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“…The scoping review identification process highlighted 48 studies which discussed the unmet needs of children with LLCs and their families from the parent’s perspective 15 27–73. The references of these 48 studies were then hand-searched by GC, identifying seven further studies meeting the inclusion criteria 74–80.…”

Section: Resultsmentioning

confidence: 99%

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

Constantinou

Garcia

Cook

et al. 2019

BMJ Support Palliat Care

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BackgroundChildren with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families’ needs by exploring and identifying the parents’ perspectives of unmet needs.AimTo identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally.Eligibility criteriaInclusion criteria: papers from the perspective of parents of children aged 0–19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance.Charting methodsA scoping review was conducted in accordance with the methods of Arksey and O’Malley.Sources of evidenceThe electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people.ResultsTotal hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills.ConclusionsThe findings suggest many unmet needs from the parent’s perspective, across several aspects of the Quality Standards and Children’s Palliative Care Frameworks. Further research is needed which explores the parent’s unmet needs in palliative care services.

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Examining the Experiences of Fathers of Children with a Life-Limiting Illness

Cited by 43 publications

References 17 publications

Communication between parents and well‐siblings in the context of living with a child with a life‐threatening or life‐limiting condition

Communication between parents and well‐siblings in the context of living with a child with a life‐threatening or life‐limiting condition

Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life‐saving devices

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

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