‘Starting Out in Haziness’: Parental Experiences Surrounding the Diagnosis of their Child's Non-Malignant Life-Limiting Condition in Ireland

Hurley, Fiona; Kiernan, Gemma; Price, Jayne

doi:10.1016/j.pedn.2020.12.015

Cited by 7 publications

(15 citation statements)

References 28 publications

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“…Having a child with a C3 condition could make them fall between two stools, and they had to arrange meetings with appropriate personnel to receive, for example, respite care (Davies et al, 2004;Steele, 1999;Ware & Raval, 2007;Wood & Milo, 2001) Being shattered in their perception of fatherhood revealed aspects of anticipatory mourning when fathers grieved over losses associated with the progression of their child's life-limiting condition (Rando, 1988(Rando, , 2000. The anticipatory mourning reactions seem to be consistent with findings in previous studies exploring parents' experiences within PPC (Fisher et al, 2021;Hurley et al, 2021;Krantz et al, 2022;Postavaru et al, 2020;Price et al, 2022). In our review, we found that most fathers felt a heightened feeling of love towards their child, which brings to light Rando's (1988) anticipatory mourning theory of being drawn closer to the dying patient.…”

Section: Striving To Be Acknowledged As a Part Of The Caring Teamsupporting

confidence: 90%

“…However, they could not receive first‐hand information from HCP if they were at work or felt they were overlooked by HCP. In contrast to the principles of mutuality, shared responsibility and support of family in FCC (Mikkelsen & Frederiksen, 2011), being overlooked or unable to be present leads fathers to receive second‐hand information and mothers to receive information alone and unsupported (Hurley et al, 2021). To compensate for the lack of information and support, the fathers in our review sought information from other sources, such as organizations related to their child's diagnosis.…”

Section: Discussionmentioning

confidence: 99%

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Fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options: A qualitative systematic review

Sjuls,

Ludvigsen,

Robstad

et al. 2023

Journal of Advanced Nursing

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AimTo systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options (C3 conditions).DesignSystematic review and metasynthesis.MethodsSandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research.Data SourcesA systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English‐written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life‐limiting condition without curative treatment options.ResultsSeven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: ‘Being shattered in the perception of fatherhood’, ‘Establishing a new normal’ and ‘Striving to be acknowledged as a part of the caring team’.ConclusionFathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences.ImpactThe findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine.Reporting MethodFollowing EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework.Patient or Public ContributionNo patient or Public Contribution.

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Section: Striving To Be Acknowledged As a Part Of The Caring Teamsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options: A qualitative systematic review

Sjuls,

Ludvigsen,

Robstad

et al. 2023

Journal of Advanced Nursing

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“…66 They need confidence that the care team, whether specialized in palliative care 39,44,80 or not, 50,85 takes responsibility for supporting them in what they consider important. 39,44,49,50,66,78,80,85 Parents, therefore, need adequate care that fits their child and family situation and they actively guide healthcare professionals to provide such care. 49,95 Being connected to others Being connected to others as a source of spirituality.…”

Section: Personal Developmentmentioning

confidence: 99%

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review

et al. 2023

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Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. Aim: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents’ perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.

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“…Families felt that continuous communication between parents, family caregivers, and health care providers is crucial during a child’s end of life care to facilitate decision-making [ 50 – 52 ] and integrated palliative care [ 53 •]. Learning about a child’s diagnosis was highly distressing for parents [ 54 •]. Commonly, they did not receive clear and honest communication about their child’s illness, and they emphasised the need to know about their child’s prognosis and what to expect [ 51 , 55 ].…”

Section: Needs Of Children and Their Families In A Paediatric Oncolog...mentioning

confidence: 99%

Palliative Care in Paediatric Oncology: an Update

2022

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Purpose of this Review The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in paediatric oncology. Recent Findings Cancer constitutes 5.2% of the palliative care needs in children. Approximately, 90% of children with cancer lives in low and middle-income countries, constituting 84% of the global burden of childhood cancers. Children in low and middle-income countries have low cure rates and high death rates making palliative care relevant in a paediatric oncology setting. Children with cancer experience pain and physical symptoms, low mood, anxiety, and fear. They feel less resilient, experience low self-worth, and have challenges coping with the illness. The families lead very stressful lives, navigating the hospital environment, and dealing with uncertainties of the future. Palliative care referral in children with cancer improves physical symptoms, emotional support, and quality of life. It enables communication between families and health care providers. It improves end-of-life care support to children and their families and facilitates less invasive diagnostic and therapeutic interventions at the end of life. Worldwide children with cancer are infrequently referred to palliative care and referred late in the illness trajectory. Most of the children referred to palliative care receive some form of cancer-directed therapy in their last days. Children in low and low-middle income countries are less likely to access palliative care due to a lack of awareness amongst paediatric oncologists about palliative care and the reduced number of services providing palliative care. A three-tier model is proposed to provide palliative care in paediatric oncology, where most children with palliative care needs are managed by paediatric oncologists and a smaller number with complex physical and psychosocial needs are managed by paediatric palliative care specialists. There are several palliative care models in paediatric oncology practised globally. However, no one model was considered better or superior, and the choice of model depended on the need, preferences identified, and available resources. Summary Children with cancer are sparingly referred to palliative care and referred late and oncologists and haematologists gatekeep the referral process. Knowledge on palliative care referral in paediatric oncology settings might enhance collaboration between paediatric oncology and paediatric palliative care.

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‘Starting Out in Haziness’: Parental Experiences Surrounding the Diagnosis of their Child's Non-Malignant Life-Limiting Condition in Ireland

Cited by 7 publications

References 28 publications

Fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options: A qualitative systematic review

Fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options: A qualitative systematic review

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review

Palliative Care in Paediatric Oncology: an Update

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