"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
Humans; Parents; Child; child; Male; Attention; Emotions; sibling; life-threatening condition; Adaptation Psychological; life-limiting condition; paediatric palliative care; lived experience; Siblings; Hermeneutics
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
Kittelsen TB; Castor C; Lee A; Kvarme LG; Winger A
International Journal of Qualitative Studies on Health and Well-being
2024
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/10.1080/17482631.2024.2321645" target="_blank" rel="noreferrer noopener">10.1080/17482631.2024.2321645</a>
Ethics Roundtable: How Much is Too Much?
Infant; Newborn; Humans; Infant; Premature Ectodermal Dysplasia Pylorus/abnormalities; Gastric Outlet Obstruction; Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; Life-limiting condition; Palliative Care
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a diagnosis of Carmi syndrome (junctional epidermolysis bullosa and pyloric atresia). While the medical team felt that a do-not-resuscitate order and redirection to comfort care were appropriate, the family held on to hope for recovery and wished to continue with full intensive care measures.
Theodoro MF; Hays J; DiBartolomeo M; Carter B
American Journal of Hospice and Palliative Medicine
2023
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/10.1177/10499091221088829" target="_blank" rel="noreferrer noopener">10.1177/10499091221088829</a>
Care management trajectories of infants with life-limiting conditions who died before 12 months of age; a retrospective patient health record review
End-of-life-care; Infant; Life-limiting condition; Neonate; Palliative Care
PURPOSE: To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from cure-orientated to palliative care and specialist palliative care team involvement. DESIGN AND METHODS: Retrospective patient health record review of infants with life-limiting conditions who died before 12 months of age and received care at three hospitals in Western Australia. Two data analysis methods; directed content analysis and process mapping. RESULTS: A total of 45 patient health records were reviewed. Process mapping led to typology of care management encompassing four trajectories; early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until a significant point; and early treatment limits. Standardised advance care planning processes were used for just over 10% of infants. There was specialist palliative care team involvement for 25% of infants. CONCLUSION: Only a proportion of infants received early integration of palliative care principles and practices. Infants and their families may benefit from earlier integration of palliative care, and standardised processes for advance care planning that are done in parallel to treatment. PRACTICE IMPLICATIONS: There is opportunity to further enhance the delivery of palliative care to infants with life-limiting conditions and optimise the experience for families through education for health professionals, implementation of advance care planning and standardisation through policies and clinical practice guidelines.
Iten R; O'Connor M; Cuddeford L; Gill FJ
Journal of Pediatric Nursing
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/10.1016/j.pedn.2022.11.014" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.11.014</a>
The Health of Mothers of Children with a Life-Limiting Condition: A Qualitative Interview Study
Life-Limiting Condition; Child; Paediatrics; Palliative Care; Qualitative
BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers' perspectives. AIM: To explore mothers' accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. DESIGN: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. SETTING/PARTICIPANTS: Thirty mothers of children with a life-limiting condition were recruited via three UK children's hospices and social media. RESULTS: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers' reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child's. Hospice support was particularly valuable in this respect. CONCLUSIONS: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.
Fisher V; Atkin K; Fraser LK
Palliative Medicine
2022
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<a href="http://doi.org/10.1177/02692163221122325" target="_blank" rel="noreferrer noopener">10.1177/02692163221122325</a>
Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review
Palliative care; Advance care planning; Adolescents; Young adults; Age-appropriateness; Life-limiting condition
Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development. This systematic review was aimed to evaluate the age appropriateness of pACP interventions by assessing their characteristics, content, and evidence. CINAHL, Embase and MEDLINE were searched from 1 January 1998 to 31 August 2020 in order to identify peer-reviewed articles containing strategies and tools to facilitate pACP in both children (0-18 years) with life-limiting conditions and their families. An assessment of quality was performed using Cochrane tools and COREQ. The full protocol is available as PROSPERO CRD42020152243. Thirty-one articles describing 18 unique pACP tools were included. Most tools were developed for adolescents and young adults. In most cases, the interventions tried to assess the child's and family's preferences concerning their current and future hopes, wishes, and goals of the care. This was aimed to enhance communication about these preferences between children, their families, and health-care providers and to improve engagement in pACP. The relevance of an age-appropriate approach was mentioned in most articles, but this was mainly implicit. Seven articles implemented age-appropriate elements. Six factors influencing age appropriateness were identified. Tools to support pACP integrated age-appropriate elements to a very limited extent. They mainly focused on adolescents. The involvement of children of all ages may need a more comprehensive approach.
Brunetta J; Fahner J; Legemaat M; van den Bergh E; Krommenhoek K; Prinsze K; Kars M; Michiels E
Children
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/10.3390/children9060830" target="_blank" rel="noreferrer noopener">10.3390/children9060830</a>
F*** what the doctors tell you': Mistrust and disempowerment in fathers of children with life limiting conditions
Caregiver Attitudes; Ethical issue; fathers perspectives; life-limiting condition; pediatric palliative care
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted within a predominant mother narrative, raising questions about their needs and support within the healthcare setting. This study aimed to provide a greater insight into the caregiving experiences of fathers with a child with an LLC. Methods Meta-ethnography was used to synthesise existing qualitative studies exploring fathers' caregiving experiences. PubMed, PsycINFO, CINAHL and Science Direct search databases were used (up to April 2020) and qualitative, English studies were selected. Results Sixty-three studies were included. A conceptual model of fathers' key experiences was developed. It encompassed the following overarching concepts: 'The paradox of support'; 'Challenges in the caring process'; 'Nobody thinks of men'; 'Impact on family life' and; 'The fall of the curtain: an irrevocably altered world'. This presentation will focus on the first and third named concepts, which highlighted many paradoxical experiences within the healthcare setting. The concepts of honesty, trust, mistrust, empathy, alienation and abandonment described fathers' experiences of health services and medical expert knowledge. Feeling side-lined and experiencing inconsistency in the healthcare system were also key themes. These informed fathers' experiences of disempowerment when interacting with health professionals, as well as examples of reassurance and support. These issues, as well as sensitive challenges around intimate personal/nursing care, and the impact on fathers' confidence in the caregiving process will be explored. Conclusions This study highlights the trust and health communication needs of an increasing number of fathers who are involved in caring for an ill child. Practical recommendations are provided, for example in relation to healthcare policy, and ethical issues around the recognition of fathers in child safeguarding and dignity of care policies.
Postavaru GI; Swaby H; Swaby R
BMJ Open
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/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-QHRN.27</a>
Perinatal palliative care
Bereavement; Child; Infant; Life-limiting condition; Life-threatening condition; Neonatal death; Newborn; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Quality of Life
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later). To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Martín-Ancel A; Pérez-Muñuzuri A; González-Pacheco N; Boix H; Espinosa Fernández MG; Sánchez-Redondo MD; Cernada M; Couce ML
Anales de Pediatría (English Edition)
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/10.1016/j.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2021.10.003</a>
The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff
children; Initiation; life-limiting condition; palliative care
Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequate due to a lack of indicators. This study aimed to find considerations in the process of initiating palliative care services. The general and clinical characteristics of 181 patients aged less than 24 years who were registered at the pediatric palliative care center from January 2019 to August 2021 were evaluated. Life-limiting condition group 1 had the largest number of patients. The primary need for palliative care was psychological and emotional support, followed by information sharing and help in communication with the medical staff in decision-making processes. Seventy-two patients were technologically dependent, with one to four technical supports for each patient. The registration of patients with cancer increased with time, and the time from disease diagnosis to consultation for pediatric palliative care service was significantly reduced. In conclusion, before starting pediatric palliative care, it is necessary to understand the needs of patients and their families and to cooperate with medical staff.
Bae SH; Kim YH
Healthcare
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/10.3390/healthcare10010127" target="_blank" rel="noreferrer noopener">10.3390/healthcare10010127</a>
The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study
Challenges; child; Coping; life-limiting condition; Need; Neurology; Paediatric palliative care
OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. MATERIALS AND METHODS: A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information. RESULTS: A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers' context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children. CONCLUSION: There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers' needs and the planning for palliative care support.
Taib F; Beng KT; Chan LC
Indian Journal of Palliative Care
2021
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<a href="http://doi.org/10.25259/ijpc_3_21" target="_blank" rel="noreferrer noopener">10.25259/ijpc_3_21</a>
Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
child; life-limiting condition; systematic review; Transition to adult care
Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services.
Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK
Pediatric Research
1120
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<a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a>
Parent and Well-Sibling Communication in Families With a Child Who Has a Life-Limiting Condition: Quantitative Survey Data
child; communication; life-limiting condition; parent; sibling
OBJECTIVE: Living with a child with a life-limiting condition (LLC), for which there is no hope of cure and premature death is expected, places much stress on a family unit. Familial communication has the potential to serve as a buffer when children are faced with stressful situations. The overall aim of the study was to learn more about illness-related communication between parents and well-siblings, giving particular consideration to the amount of illness-related communication, and sibling satisfaction with familial communication. METHODS: Participants included 48 well-siblings (aged 6-21 years) of children with LLCs and their parents. Parents and well-siblings independently completed validated measures of familial communication and sibling functioning. Parents also provided demographic information and completed a questionnaire assessing amount of illness-related information provided to well-siblings. RESULTS: Parents reported that 47.8% of well-siblings never or rarely initiated conversations about their sibling's illness. Moreover, 52.2% of well-siblings never or rarely spoke about death. Amount of illness-related communication between parents and well-siblings was most strongly predicted by parental resilience and well-sibling age. Parents engaged in significantly more illness-related communication with girls than boys (t(44)=-2.28, p = .028). Well-siblings (p < .01) and parents (p < .05) rated satisfaction with familial communication significantly higher than published norms. The only significant predictor of well-sibling satisfaction with familial communication was greater familial cohesion. Family communication variables were not significantly correlated with measures of sibling functioning (all p's>.05). CONCLUSIONS: This study provides new information regarding parent and well-sibling communication in families who have a child with a LLC.
Jaaniste T; Chin WLA; Tan SC; Cuganesan A; Coombs S; Heaton M; Cowan S; Potter D; Aouad P; Smith PL; Trethewie S
Journal of Pediatric Psychology
2021
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<a href="http://doi.org/10.1093/jpepsy/jsab128" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsab128</a>
A Scoping Review of Perinatal Palliative Care: Allowing Parents to Be Parents
congenital; fetal anomaly; life-limiting condition; perinatal hospice; perinatal palliative care; prenatal diagnosis
OBJECTIVE: -Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition, which decreases the burden of the condition using a multidisciplinary approach. STUDY DESIGN: -This review discusses the landmark literature in the past two decades, which have seen significant growth and development in the concept of PPC. RESULTS: -The literature describes the background, quality, and benefits of offering PPC, as well as the ethical principles that support its being offered in every discussion of fetal life-limiting diagnoses. CONCLUSIONS: -PPC shares a similar risk profile to other options after life-limiting diagnosis, including satisfaction with choice of continuation of pregnancy. The present clinical opinion closes by noting common barriers to establishing PPC programs and offers a response to overcome each one. KEY POINTS: · Perinatal palliative care serves patients who continue pregnancies with life-limiting fetal anomaly.. · Perinatal palliative care has a risk profile similar to other options such as termination.. · Health care providers can serve as champions to extend PPC to patients in their region..
Buskmiller C; Calhoun BC
American Journal of Perinatology
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/10.1055/s-0041-1740251" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1740251</a>
Living with a child who has a life-limiting condition: The functioning of well-siblings and parents
child; sibling; life-limiting condition; functioning; parent
BACKGROUND: Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The current study aimed to investigate the psychosocial functioning of well-siblings and parents living with a child with an LLC. Further, the study aimed to assess the resilience resources of both well-siblings and parents, giving consideration to how these relate to psychosocial functioning. METHODS: Participants included 48 well-siblings (6-21 years) and 42 parents of children with LLCs. Parents and well-siblings independently completed validated measures of child and adult functioning and personal resilience. Parents provided demographic information about the patient and family. RESULTS: The emotional, social and school functioning of well-siblings in the current study was found to be significantly poorer than published norms (all p's < .01). Parental self-reported depression, anxiety and stress scores were also all significantly poorer than published norms (all p's < .01). There was negligible agreement between well-sibling self-reported functioning and parental proxy-report of the well-siblings functioning (all r's < .126, all p's > .464). Sibling self-reported resilience was positively correlated with each of the measures of psychosocial functioning (all r's > .318, p's < .05). Parental resilience was significantly negatively correlated with depressive symptoms (r = -.369, p < .05) and anxiety symptoms (r = -.473, p < .01) but not stress scores (r = -.074, p = .644). CONCLUSION: Family members living with a child who has an LLC were found to have significantly poorer psychosocial functioning than published norms. Although one cannot infer a causal direction from the current study, greater self-reported well-sibling and parental resilience were associated with aspects of better self-reported psychosocial functioning. Future studies should assess the impact of psychosocial interventions aimed at enhancing the resilience and functioning of both well-siblings and parents.
Jaaniste T; Cuganesan A; Chin WLA; Tan SC; Coombs S; Heaton M; Cowan S; Aouad P; Potter D; Smith PL; Trethewie S
Child: Care, Health and Development
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/10.1111/cch.12927" target="_blank" rel="noreferrer noopener">10.1111/cch.12927</a>
Factors associated with quality of life in children receiving pediatric palliative care
caregiver depression; children; life-limiting condition; Pediatric palliative care; quality of life; underlying disease
CONTEXT: Since pediatric palliative care (PPC) aims to improve the health-related quality of life (HRQoL) of children with life-limiting conditions (LLC), assessment of their HRQoL and identification of its determinants is crucial. OBJECTIVES: To examine the clinical and family factors associated with HRQoL of children with LLC METHODS: This was a cross-sectional study of 136 pediatric patients with LLC who were enrolled in the PPC services at Seoul National University Hospital in South Korea. Patients' HRQoL was measured using the Pediatric Quality of Life 4.0. Clinical and family characteristics were gathered from the medical records and PPC registry database. RESULTS: Most children with LLC have a poor HRQoL at their enrollment for PPC services with significant variation in their total HRQoL scores according to the diagnostic categories. Patients with nonmalignant conditions showed significantly lower HRQoL scores than patients with malignancy. Lower HRQoL scores were associated with more caregiver depressive symptoms. In a multivariable regression model, total HRQoL scores of patients were significantly associated with diagnostic categories and caregiver's depressive symptoms after controlling for other clinical and family variables. Physical health summary scores were significantly associated with diagnostic categories and caregiver depressive symptoms. Psychosocial health summary scores were significantly associated with patient location and caregiver's depressive symptoms. CONCLUSION: The HRQoL of children with LLC receiving PPC differed among underlying disease categories. Lower HRQoL was associated with more caregiver depressive symptoms. These findings suggest the needs for optimized intervention in palliative care for children with nonmalignant conditions and family-centered intervention to address caregivers' psychosocial problems.
Lee J; Kim MS; Kim CH; Moon YJ; Choi YH
Journal of Pain and Symptom Management
2021
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.10.005</a>
Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period
palliative care; symptom management; life-limiting condition; perinatal palliative care; Comfort care; medications
INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an approach that includes the standardized management of end-of-life symptoms that are anticipated around the time of birth. AREAS COVERED: A need was identified to develop medication orders for the initial pharmacological management of symptoms at end-of-life for infants with life-limiting conditions intended for use outside of an intensive care setting. The choice of medications was based on a review of the literature, discussion with content experts and guided by their ease of use, accessibility and noninvasive route of delivery. The recommendations can be used as a guide for the initial management of common symptoms encountered in perinatal palliative care. EXPERT OPINION: There are studies looking at many qualitative aspects of perinatal palliative care including perceptions of care, decision-making, and bereavement; however, few specifically focus on symptom management in the delivery room and postpartum ward settings. There is a need for standardization of the medical management of infants born with life-limiting conditions whose parents choose to pursue palliative care.
Veldhuijzen van Zanten S; Ferretti E; MacLean G; Daboval T; Lauzon L; Reuvers E; Vadeboncoeur C
Expert Opinion on Pharmacotherapy
2021
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<a href="http://doi.org/10.1080/14656566.2021.1965574" target="_blank" rel="noreferrer noopener">10.1080/14656566.2021.1965574</a>
The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review
caregiver; children; life-limiting condition; parents; physical health
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review. RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.
Hartley J; Bluebond-Langner M; Candy B; Downie J; Henderson EM
Pediatrics
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/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-014423</a>
F*** what the doctors tell you': Mistrust and disempowerment in fathers of children with life limiting conditions
Caregiver Attitudes; Ethical issue; fathers perspectives; life-limiting condition; pediatric palliative care
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted within a predominant mother narrative, raising questions about their needs and support within the healthcare setting. This study aimed to provide a greater insight into the caregiving experiences of fathers with a child with an LLC. Methods Meta-ethnography was used to synthesise existing qualitative studies exploring fathers' caregiving experiences. PubMed, PsycINFO, CINAHL and Science Direct search databases were used (up to April 2020) and qualitative, English studies were selected. Results Sixty-three studies were included. A conceptual model of fathers' key experiences was developed. It encompassed the following overarching concepts: 'The paradox of support'; 'Challenges in the caring process'; 'Nobody thinks of men'; 'Impact on family life' and; 'The fall of the curtain: an irrevocably altered world'. This presentation will focus on the first and third named concepts, which highlighted many paradoxical experiences within the healthcare setting. The concepts of honesty, trust, mistrust, empathy, alienation and abandonment described fathers' experiences of health services and medical expert knowledge. Feeling side-lined and experiencing inconsistency in the healthcare system were also key themes. These informed fathers' experiences of disempowerment when interacting with health professionals, as well as examples of reassurance and support. These issues, as well as sensitive challenges around intimate personal/nursing care, and the impact on fathers' confidence in the caregiving process will be explored. Conclusions This study highlights the trust and health communication needs of an increasing number of fathers who are involved in caring for an ill child. Practical recommendations are provided, for example in relation to healthcare policy, and ethical issues around the recognition of fathers in child safeguarding and dignity of care policies.
Postavaru GI; Swaby H; Swaby R
BMJ Open
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/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-QHRN.27</a>
Summary of the Key Concepts on How to Develop a Perinatal Palliative Care Program
life-threatening condition; life-limiting condition; program; perinatal palliative care; interest.; limit of viability
Purpose of review: The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles. Recent findings: PnPC is a new concept in neonatal intensive care approach. Advancements in perinatal diagnostics and medical technology have changed the landscape of the perinatal world. The threshold of viability continues to decrease, and diagnostic information is available earlier in pregnancy and more rapidly at the bedside; overall outcomes continue to improve. This rapid technological improvement brings ethical debates on the quality of life of patients with life-limiting and life-threatening conditions and the need to involve the family in the decision-making process, according to their wishes and cultural beliefs. Although the Perinatal Hospice concept was developed in the 1980s in the US, the first recommendations on how to develop a PnPC pathway were published in the early 2000s. We considered the most relevant position statements or guidelines on PnPC published in the last two decades. Some of them were more pertinent to pediatrics but still useful for the fundamental concepts and PnPC project's development. Summary: Health care providers and institutions are encouraged to develop PnPC programs, which have the goal of maximizing the quality of life of infants with non-curable conditions. These may generally include the following: a formal prenatal consultation; development of a coordinated birth plan between obstetrician, newborn care, and family; access to other neonatal and pediatric specialties, as needed; comfort palliative care during the prenatal, birth, and postnatal periods; and psychosocial and spiritual support for families, siblings, and staff.
Lago P; Cavicchiolo ME; Rusalen F; Benini F
Frontiers in Pediatrics
2020
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/10.3389/fped.2020.596744" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.596744</a>
Progress in palliative care for children in the UK
Palliative Care; Pain; cancer; life-limiting condition; Neurodisability; symptom control
Paediatric palliative care has continued to develop as a philosophy of care and as a practical clinical service to children with life-limiting conditions. More doctors and nurses identify themselves as particularly interested in the subject, and there is a more modest increase in those considering themselves to be ‘specialists’. Where even five years ago even the phrase ‘palliative care’ was unfamiliar to many paediatricians, there is now an expectation that a specialist service should be available locally. This expectation is not yet met in practice; paediatric palliative care ‘networks’ have emerged in many parts of the country but, in general, these link existing services rather than expanding the service infrastructure. There are even areas in which innovative palliative care services to children have been cut or are under threat. This contribution examines the progress—and some of the regress—in children’s palliative care over the last five years, and considers some augurs for the future.
2008
Hain R; Wallace A
Paediatrics & Child Health
2008
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).
Journal Article
<a href="http://doi.org/10.1016/j.paed.2007.12.006" target="_blank" rel="noreferrer">10.1016/j.paed.2007.12.006</a>
Quality Predictors Of Parental Satisfaction After Birth Of Infants With Life-limiting Conditions
Foetal Diagnosis; Life-limiting Condition; Parental Satisfaction; Perinatal Palliative Care
AIM: This study examines parental satisfaction with care received in the context of a life-limiting fetal diagnosis and subsequent birth. METHODS: Survey methods were utilized to embed the Quality Indicators (QI) and Parental Satisfaction of Perinatal Palliative Care Instrument in a survey: "The Voice of Parents". RESULTS: The web-based survey had a final sample of N=405 parent responders. Overall, parents reported satisfaction with care (80.2%; n=393). Parents satisfied with care reported higher agreement with quality indicator items for all subscales. In total, 17 items from the 41-item instrument revealed the ability to predict higher parental satisfaction when particular QI are reported. CONCLUSION: This study has led to credible insights into parental satisfaction with care given after the birth of an infant with a life-limiting condition. The findings contribute to development of a model with a good fit in ascertaining the importance of compassion, unhurried provider-patient communication and bereavement interventions. This article is protected by copyright. All rights reserved.
Wool C; Kain V J; Mendes J; Carter BS
Acta Paediatrica
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).
DOI: 10.1111/apa.13980