Palliative Care Services for Children with Life-Limiting Conditions
Palliative Therapy; Ireland; Adolescent; Article; Child; Cohort Analysis; Community Support; Controlled Study; Hospice; Human; Major Clinical Study; Male; Nurse; Patient Referral; Place of Death; Residential Care; Retrospective Study; Social Welfare; Terminal Care
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Method(s): Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Result(s): Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Conclusion(s): Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.Copyright © 2022, The Author(s), under exclusive licence to Royal Academy of Medicine in Ireland.
Hayden J; Larkin MA; Noonan H; Conroy M; Twomey F; O'Reilly V; Gallagher S
Irish Journal of Medical Science
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s11845-022-03134-3" target="_blank" rel="noreferrer noopener">10.1007/s11845-022-03134-3</a>
Synthesis of health promotion concepts in children's palliative care
Best fit framework; Child; Children's palliative care; Health Policy; Health Promotion; Ireland; Nursing; Palliative Care; Quality of Life
BACKGROUND: Palliative care improves the health of children with a life-limiting condition and appears to draw implicitly on concepts shared with a model of health promotion. However, to date there has been no scrutiny about how this relationship may shape understanding about children's palliative care. AIM: To explore the influence of health promoting concepts on children's palliative care models, policies and guidelines. DATA SOURCES: Health and social care databases were searched for policies, models and guidelines published between 2000-2018. Additional searches of professional national and international healthcare websites, children's palliative care charities and UK and Ireland government websites were conducted. METHODS: A best fit framework synthesis was used. FINDINGS: A total of 55 policies and guidelines were reviewed for the framework synthesis. Eight themes were generated: (1) health promoting children's palliative care policy and guidelines; (2) planning ahead; (3) creating a supportive environment; (4) enabling coping and independence; (5) reorienting children's palliative care sectors; (6) the lengthening trajectory of need for support; (7) strengthening community engagement in children's palliative care; and (8) quality of life and value-based ideologies. CONCLUSION: The best fit framework synthesis confirmed a conceptual relationship between children's palliative care and health promotion. This is captured in a new model that will extend professionals' understanding.
Bennett V; Hain R; Pritchard AW; Noyes J
International Journal of Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2021.27.10.490" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.10.490</a>
Evaluating the validity, reliability and clinical utility of the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA): protocol of a validation study
Adolescent; Child; Reproducibility of Results; Ireland; Music Therapy; Consciousness; paediatric palliative care; rehabilitation medicine; developmental neurology & neurodisability; State Medicine; neurological injury; paediatric neurology
INTRODUCTION: A growing number of children and young people are surviving severe acquired brain injuries due to advances in healthcare. However, many fail to emerge from coma and continue to live with disorders of consciousness (DOC). Diagnostic, clinical and ethical challenges are prominent in this group. Misdiagnosis can have severe consequences for children and their families, including inadequate care, insufficient access to rehabilitation and stimulation, reduced accessibility to services and inappropriately limited opportunities for participation. The proposed project will develop and validate a diagnostic measure that supports detailed goal-planning-the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA). METHODS AND ANALYSIS: Face validity will be assessed using a short questionnaire and the MuSICCA will be amended if face validity is insufficient. Once face validity is sufficient, 80 participants with suspected DOC will be recruited from multiple sites around the UK, USA and Ireland.Validity will be assessed using external reference standards (Coma Recovery Scale-Revised, Coma Near-Coma Scale and Nociception Coma Scale). Intra-rater reliability will be established using repeated ratings of video recordings from the assessment sessions. Inter-rater reliability will be assessed through video ratings by a second blinded assessor. In addition to these analyses, the clinical utility of the MuSICCA will be evaluated using a questionnaire to be completed by clinicians and relatives of the participants following the completion of the MuSICCA assessment. ETHICS AND DISSEMINATION: Ethical approval has been obtained for this study from the Research Ethics Committee and Health Research Authority of the National Health Service of the UK (ID: 167534). Results will be presented at national and international conferences, published in scientific journals and disseminated to participant representatives, clinicians, educators and care providers. TRIAL REGISTRATION DETAILS: This study was registered at ClinicalTrials.gov Protocol Registration and Results System on 7(th) August 2019 (ID: NCT04050995); Pre-results.
Pool JW; Siegert RJ; Taylor S; Dunford C; Magee W
BMJ Open
2020
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<a href="http://doi.org/10.1136/bmjopen-2020-039713" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-039713</a>
The agony of the child with complexity: Exploring the psychological impact on parents caring for children with complex healthcare needs
Medline; child; female; human; male; qualitative research; conference abstract; caregiver; systematic review; meta analysis; publication; social support; depression; sample size; disease exacerbation; North America; health care need; Ireland; medical leave; mental stress; parental stress; prevention; psychological well-being; social isolation
Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for children with complex healthcare needs across North America and Europe, and more specifically within Ireland. Method(s): A comprehensive search of the literature published within the last ten years was performed using PubMed and PyschINFO databases. Ten papers, consisting of qualitative studies and meta-analyses, which varied in sample size and methodology, were selected for detailed review. Result(s): Recent publications emphasise that caring for a child with complex care needs has a significant negative impact on the psychological wellbeing of parents. Several qualitative studies have shown that caregivers of children with life-limiting illness are up to twice as likely to report higher levels of parenting stress and depressive symptoms than parents of healthy children. The literature suggests that women experience greater parenting stress in caring for severely ill children than men, with one study noting an increase in maternal sick leave for psychological distress. However, women were more likely to report being the predominant caregiver, which could account for this discrepancy. Social isolation was a recurring factor contributing to the perceived burden of stress experienced by caregivers. Similar themes were evident across North America and Europe publications. We noted a paucity of research in the Irish context. Conclusion(s): Further research is needed to evaluate the psychological impact of caring for a child with complex healthcare needs and to guide management and prevention of parental stress and psychological illness, particularly in Ireland. Additional studies are needed to determine if increased social support reduces psychological stress and to investigate the effects of parental stress on disease progression in children with complex heathcare needs.
Crothers E; Bradbury M; Lewis S; O'Gorman C; Murphy A M
Archives of Disease in Childhood
2019
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The qualitative study on the experience and perception of healthcare professionals in pediatric palliative care
human; child; male; palliative therapy; diagnosis; death; hospice; home care; major clinical study; conference abstract; Ireland; quality of life; awareness; interview; perception; qualitative research; grounded theory; pediatric nursing; constant comparative method; pediatric nurse
Introduction: In Italy there are approximately 12000 children affected by life-limiting illnesses, which require palliative care services. The national reality, however, confirms the lack of a proper palliative care services network to ensure relief continuity. Therefore, there is an increase for need to find and develop effective methodologies and services that grant adequate assistance and continuous care to children affected by terminal and incurable diseases. Sensitizing society and empowering the health care environment about this theme could be the first step to improve the life of children and families who are subject to this situation. Research aim: The aim of the study is to analyze healthcare professionals' experiences involved in pediatric palliative care to identify their difficulties during the assistance. Study design and methods: The study started from the review of national and international literature. The chosen methodology is supported by the production of open questions interviews from the article "Professional Carers' Experiences of Providing a Pediatric Palliative Care Service in Ireland," submitted to palliative healthcare professionals of home- services. The results of the interviews are analyzed by the constant comparative method developed in Glaser and Strauss's Grounded Theory methodology. Results and interpretation: Interviews demonstrate that healthcare professionals faced several difficulties in relationships with children and their families. These include parental acceptance of the terminal diagnosis of the child's illness, the choice of the place of care or death, the involvement and the awareness of the young patient in the disease or the feeling of vulnerability of both families and operators. The communication and mediation between the team, the child and his family are essential to the care process and its problems. The awareness of the peculiarity of the service and the will of the operators to continuously improve the service are necessary elements for growth. Conclusion: The results of the study have shown that there is the need to improve in technical and emotional support and in the constant training of operators to make as "normal" as possible the remaining time available to the child and his family. Keywords: Home care, palliative care, pediatric nursing care, hospice, pediatric nurses, quality of life, relationship with assisted persons.
Salvaggio E
Palliative Medicine
2018
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<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition
Child; Female; Humans; infant; Male; bereavement; mothers; Adult; Attitude to Death; social support; Self Care; Ireland; Stress; Preschool; Adaptation; Psychological; Newborn; Grief
BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in Ireland use following the death of their child. OBJECTIVE: The aim of this study was to explore mothers' experiences of bereavement support in Ireland following the death of their child from a life-limiting condition. METHOD: A descriptive qualitative design was used. The study sample was ten mothers who had been bereaved in the previous 5 years. All mothers were recruited to the study by a gatekeeper from a voluntary organisation. Data were obtained through unstructured single interviews and analysed using conventional content analysis. RESULTS: The findings indicate that the mothers relied on a combination of informal and formal bereavement support. In addition to depending on others to provide support, the mothers described their ability to self-support. CONCLUSIONS: The findings show that mothers in Ireland use a variety of sources of support following the death of their child from a life-limiting condition. Health professionals involved in caring for families and children with a life-limiting condition should have an understanding of these sources.
2014-04
Jennings V; Nicholl H
International Journal Of Palliative Nursing
2014
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2014.20.4.173" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.4.173</a>
Depression and anxiety in rheumatoid arthritis: the role of perceived social support
Female; Humans; Male; Middle Aged; social support; Anxiety Disorders; Sick Role; Depressive Disorder; Ireland; Arthritis; Social Perception; Rheumatoid; Social Support and Chronic Pain
BACKGROUND: Rheumatoid arthritis is a common, disabling, autoimmune disease with significant psychiatric sequelae. AIMS: We aimed to identify the prevalence of depression and anxiety in patients with rheumatoid arthritis attending hospitals, and to elucidate the role played by illness variables, disability variables and psychosocial variables in predicting levels of depression and anxiety. METHODS: We assessed depression, anxiety, arthritis-related pain, arthritis-related disability and perceived social support in 68 adults with rheumatoid arthritis. RESULTS: Sixty-five per cent of patients had evidence of depression (37.5% moderate or severe) and 44.4% had evidence of anxiety (17.8% moderate or severe). Both depression and anxiety were highly correlated with several measures of arthritis-related pain and functional impairment. After controlling for age, gender, marital status and duration of arthritis, perceived social support was a highly significant independent predictor of both depression and anxiety. CONCLUSIONS: These findings suggest that increasing social support may be particularly important in the management of depression and anxiety in rheumatoid arthritis.
2006-06
Zyrianova Y; Kelly BD; Gallagher C; McCarthy C; Molloy MG; Sheehan J; Dinan TG
Irish Journal Of Medical Science
2006
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Journal Article
<a href="http://doi.org/10.1007/bf03167946" target="_blank" rel="noreferrer">10.1007/bf03167946</a>
Adverse childhood experiences and lifetime suicide ideation: a cross-sectional study in a non-psychiatric hospital setting
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Hospitals; Ireland; Emergency Service; adolescent; Non-U.S. Gov't; Research Support; Psychological; PedPal Lit; Hospital; Interview; General; Child Abuse/prevention & control/psychology; Suicide/prevention & control/psychology
We have assessed the effect of adverse childhood experiences on the lifetime prevalence of suicide ideation in a cross-sectional study involving 182 patients aged 18 to 44 years, consecutive attenders at an A&E review clinic. All participants were interviewed by a psychologist using standardised questionnaire instruments addressing participants' demographic characteristics, drug use, depressed mood, eight major categories of adverse childhood experiences (including physical, emotional and sexual abuse) and suicide ideation. The response rate was 73%. In multivariate logistic regression analyses, those with a history of two or more forms of childhood adversity relative to those with none were at increased risk of depressed mood (OR = 5.5, 95% CI = 2.3-13.3) and suicide ideation (OR = 3.5, 95% CI = 1.5-8.3). The findings emphasise the need to set suicide prevention within the broader context of society's obligation to protect children from physical, emotional and sexual abuse.
2006
Corcoran P; Gallagher J; Keeley HS; Arensman E; Perry IJ
Irish Medical Journal
2006
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Journal Article
Children's Nurses' experiences in delivering bereavement care to children and families with life limiting conditions in the Irish context
Bereavement support; nurse; bereavement; Child; genetic transcription; hospice care; Human; Informed Consent; Ireland; Only Child; Palliative therapy; research ethics; semi structured interview; Terminal Care
Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and frequently caring for the child and family. This relationship is essential within the delivery of bereavement care. However, there is a dearth of information on nurses' emic perspective and experiences within this area. The aim of this study was to gain a deeper understanding of the experiences of children's nurses' (RCN) in delivering bereavement care to children and their families with life limiting conditions, and what meaning they ascribe to their experience. In addition, the aim was to explore what impact provision of bereavement care had on RCN's as service providers, and what their needs were in the provision of effective, supportive, quality driven bereavement care to this population. Using a phenomenological design guided by Heideggerian approach underpinned by Ricoeur's analytical framework, seven semistructured interviews were conducted with RCN's with experience of delivering children's palliative care and bereavement care in Ireland. Interviews were taped and transcribed verbatim. Three themes were identified; 'being communicative and collaborative', 'being challenged' and 'being familiar'. These themes encompassed nurses' experiences with both families and healthcare professionals, highlighting the benefits for RCN involvement in the delivery of bereavement care to promote overall best outcomes. The findings support the role of RCN's in the delivery of bereavement care to children and families with life limiting conditions. It highlights the need for RCN's to be educated, up-skilled, supported, and included within the interdisciplinary team to deliver bereavement care. Ethical approval for the study was granted by LauraLynn Research Ethics Committee (2016). Written informed consent was obtained by all study participants.
Power S; Kelly-Horrigan M
Bmc Pregnancy And Childbirth
2017
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<a href="http://doi.org/" target="_blank" rel="noreferrer"></a>
Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study
Palliative Care; Pediatrics; Research; Children; Databases Factual; Delphi Study; Delphi Technique; Health Services Needs And Demand; Hospice Care; Humans; Ireland; Life-limiting Conditions; Parents; Quality Of Life; Research Priorities; Siblings; Terminal Care
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies. As a new specialty, there is a need to develop an evidence-based approach to providing children's palliative care. In order to do this in a systematic way, identification of the research priorities in children's palliative care within Ireland is required.
Quinn C; McCarthy S; Devins M; O'Reilly M; Twomey M; Ling J
International Journal Of Palliative Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.12968/ijpn.2017.23.2.88" target="_blank" rel="noreferrer">10.12968/ijpn.2017.23.2.88</a>
Exploring perinatal death with midwifery students' using a collaborative art project
Grief; Perinatal Death; Affective Learning; Artist; Collaborative Artwork; Education Nursing; Female; Humans; Infant Newborn; Ireland; Midwifery/ Education; Midwifery Students; Mothers/psychology; Parents; Perinatal Death; Pregnancy; Students Nursing
OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews following institutional ethical approval. SETTING: A regional Maternity Hospital in Ireland which hosted the National Artwork and Exhibition exploring the hidden world of infant death. PARTICIPANTS: A purposive sample of six consenting post registration midwifery students who had attended the Amulet artwork and exhibition. FINDINGS: Four core themes emerged and these were i) entering the mother's world and hearing her pain; ii) the journey of grief and connecting with the bereaved parent's unique experience; iii) facing the challenge of providing effective perinatal bereavement care; and iv) maintaining a journey of compassionate practice. CONCLUSION AND IMPLICATIONS FOR PRACTICE: Exposure to, and reflection on the Amulet artwork and exhibition increased students' awareness and insight into the non-linear nature of the grieving process, and to the importance of maintaining a journey of compassionate care for parents experiencing perinatal death. The findings suggest that the use of creative women-centered strategies promote affective learning in relation to perinatal death and so may be of use to educators and maternity care providers. Copyright © 2016 Elsevier Ltd. All rights reserved.
Barry M; Quinn C; Bradshaw C; Noonan M; Brett M; Atkinson S; New C
Nurse Education Today
2017
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<a href="https://doi.org/10.1016/j.nedt.2016.09.004" target="_blank" rel="noreferrer">10.1016/j.nedt.2016.09.004</a>
The Provision Of Spiritual And Pastoral Care Following Stillbirth In Ireland: A Mixed Methods Study
Attitude To Death; Bereavement; Chaplaincy Service Hospital/standards; Female; Hospitals Maternity/organization & Administration; Humans; Ireland; Male; Pastoral Care; Pregnancy; Professional-family Relations; Spirituality; Stillbirth/psychology
Bereavement; Chaplain; Pastoral Care; Spiritual Care; Stillbirth
Background The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical, emotional, spiritual and social needs of parents are attended to. This study reviewed how spiritual care is provided to bereaved parents following stillbirth in maternity units in Ireland and the impact of stillbirth on healthcare chaplains.
Methods This was a mixed methods study using semistructured qualitative interviews with hospital chaplains in Irish maternity units. Quantitative data about the provision of services to bereaved parents were collated from the interviews. Qualitative data were analysed thematically to identify key themes.
Results 20 chaplains from 17 units participated in the study (85% of Irish maternity units). 12 chaplains (60%) are formally accredited chaplains; only one has received specialist training in perinatal bereavement care. 11 chaplains (55%) provide follow-up bereavement care. Seven chaplains (35%) did not feel part of the multidisciplinary team. The main themes that emerged were the impact of stillbirth, suffering and the challenge to faith creating inner conflict and doubt.
Conclusions The provision of spiritual care following stillbirth in Ireland is diverse. Spiritual care in this specialised area by chaplains who are not professionally trained and accredited potentially impacts quality and depth of care. Chaplains experience considerable impact and challenge to personal faith and belief as they provide care. Recommendations are made for ongoing education and greater support for chaplains.
Daniel Nuzum; Sarah Meaney; Keelin O'Donoghue
Bmj Supportive & Palliative Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://dx.doi.org/10.1136/bmjspcare-2013-000533"></a>