The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Nogueira AJ; Ribeiro MT
Clinics and Practice
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/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
The most painful estrangement: Death at birth
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Cacciatore J
Seminars in Perinatology
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/10.1016/j.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
child; diagnosis; article; female; human; male; social support; palliative therapy; Internet; interview; medical information; physician; health care personnel; therapy; caregiver; semi structured interview; case study; nurse; child health; Hong Kong
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions. Setting/participants: The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC-parent-healthcare provider) were recruited, with 65 individual interviews conducted. Results: A total of 3784 units of analysis were identified, resulting in three themes with subthemes. 'Living with the disease' (55.8%) occupied the largest proportion, followed by 'information and understanding about the disease' (27.4%), and 'care support and palliative care' (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.
Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW
Archives of Disease in Childhood
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/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325810</a>
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Rapoport A; Nicholas DB; Zulla RT
BMC Palliative Care
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/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
child; adult; article; human; social support; palliative therapy; clinical article; caregiver; parent; Portugal; United Kingdom; therapy; questionnaire; coping behavior; semi structured interview; vulnerability; psychologic assessment; Coping Strategy Questionnaire
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
Nogueira AJ; Ribeiro MT
Annals of Medicine
2023
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<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener">10.1080/07853890.2023.2268093</a>
A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Cochrane Database of Systematic Reviews
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/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</a>
The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience
child; Neoplasms; childhood cancer; article; female; human; major clinical study; male; social support; palliative therapy; health care cost; follow up; retinoblastoma; cancer patient; overall survival; cancer registry; leukemia; brain tumor; cancer center; refugee; lymphoma; bone sarcoma; Jordanian; public health; Jordan; drug cost; Foundations; Iraqi; Syrian; Yemeni
Introduction: Jordan hosts one of the highest numbers of refugees per capita in the world, with the Syrian crisis leading to an influx of displaced persons to the already vulnerable population. However, limited resources and a lack of cancer-care strategies have made it difficult for refugees in Jordan to access quality cancer care. The King Hussein Cancer Center (KHCC) and Foundation (KHCF) have played a pivotal role in providing financial and medical support for displaced children with cancer, treating 968 non-Jordanian children with cancer between 2011-2022, with a median age of 6 years. Of these, 84% were fully funded by KHCF, and nationalities included Syrians (29%), Palestinians (26%), Iraqis (23%), and Yemenis (17%). Cancer diagnoses included solid tumors (44%), leukemia (23%), lymphoma (13%), bone sarcomas (9.5%), and retinoblastoma (9.1%). The median cost of treatment was JOD 18,000 (USD 25,352), with a total estimated cost of JOD 23.8 million (USD 33.5 million). More recently, in partnership with St. Jude Children's Research Hospital (SJCRH), two successive humanitarian funds (HF) were established to optimize cancer care for displaced children in Jordan.
Results: Between February 2018 and September 2022, 51 children were fully treated on KHCC-SJCRH-HF, with a median age of 6 years and nationalities including Syrians (80%), Iraqis (6%), and Yemenis (8%). The most common cancer diagnoses were leukemia (41%), lymphoma (25%), solid tumors (24%), retinoblastoma (6%), and brain tumors (4%). Of these, 94% are alive and 51% are still receiving coverage. The median coverage for patients was JOD 21,808 (USD 30,715), and the total cost of treatment on KHCC/KHCF-SJCRH/American Lebanese Syrian-Associated Charities HF1 and HF2 was JOD 1.44 million (USD 1.97 million) and JOD 1.18 million (USD 1.67 million), respectively.
Conclusion: This experience highlights the high burden of displaced children with cancer in Jordan, and the importance of local foundations like KHCC/KHCF and partnerships with international partners like SJCRH in providing lifesaving humanitarian initiatives and quality cancer care. Innovative cancer-care delivery models and sustainable financing are essential to ensure continuous coverage and access to cancer care for displaced persons in Jordan.
Rihani R; Jeha S; Nababteh M; Rodriguez-Galindo C; Mansour A; Sultan I
Frontiers in Oncology
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/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1112788</a>
Social support and prolonged grief disorder symptoms in parents who lost their only child from urban and rural China
Parents; Grief; social support; China; Social Support; Symptoms; International Classification of Diseases; Only Children; parents who lost their only child (shiduers); prolonged grief disorder (PGD); Rural Environments; urban/rural area
Objective: The one-child policy has existed in China for more than 30 years. It brought benefits to the country's economic development and reduced the magnitude of the population within a short period. However, it has led to the emergence of a significant number of parents who have lost their only child, referred to as shiduers (失独者). This study explored the symptoms of prolonged grief disorder (PGD) among shiduers and their relationship with the social support shiduers received after they lost the child, specifically accounting for the disparity between rural and urban areas. Method: In total, 405 participants were recruited with a mean age of 60.37 years (SD = 7.78). Around 68.75% were female, and 58.66% were urban shiduers. They were asked to complete a series of self-reported questionnaires, including demographic information, the Social Support Rate Scale, and the Prolonged Grief-13. Results: First, 29.63% of the participants (N = 120) fulfilled the International Classification of Diseases (11th rev.) diagnostic criteria for PGD symptoms; second, PGD symptoms of shiduers were negatively related to social support, including objective support, subjective support, and the availability of support; and third, urban/rural location moderated the effect of objective support on the PGD symptoms of shiduers, but not the effect of subjective support on PGD symptoms. Furthermore, the simple-slope tests indicated that the shiduers in rural areas benefited most from objective support. Conclusions: The present results revealed high rates of PGD symptoms in Chinese shiduers, and our findings highlight the important role of urban/rural location in the relationship between social support and PGD symptoms. (PsycInfo Database Record (c) 2023 APA, all rights reserved) This study could help government leaders and primary health care workers to create targeted programs for shiduers in the future, especially those living in rural areas. (PsycInfo Database Record (c) 2023 APA, all rights reserved)
Song C; Fu Z; Li W; Yu Y; Ma J; Li X; Wang J
Psychological Trauma: Theory, Research, Practice, and Policy
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/10.1037/tra0001116" target="_blank" rel="noreferrer noopener">10.1037/tra0001116</a>
Challenges and coping styles of fathers as primary medical caretakers: a multicultural qualitative study.
Humans; Male; United States; Neoplasms; Middle Aged; Adult; Qualitative Research; Socioeconomic Factors; Social Support; Anemia, Sickle Cell; *Adaptation, Psychological; *Caregivers/px [Psychology]; *Fathers/px [Psychology]; *Father-Child Relations/eh [Ethnology]; Ethnicity/px [Psychology]; Family Conflict
Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary medical caretakers of children diagnosed with cancer or sickle cell disease. Using a life story method, fathers completed semistructured interviews regarding their overall experiences. Data was analyzed using narrative analysis with multiple case studies. Results indicated single, low socioeconomic status, and immigrant fathers with limited English proficiencies were at highest risk for coping difficulties. This study also examined gender biases that men experienced and masculine norms in coping.
Wolff, Joshua; Pak, Jenny; Meeske, Kathleen; Worden, J William; Katz, Ernest
Journal of Psychosocial Oncology
2010
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/10.1080/07347330903516902" target="_blank" rel="noreferrer noopener">10.1080/07347330903516902</a>
Differences and similarities between mothers and fathers of premature children: a qualitative study of parents' coping experiences in a neonatal intensive care unit.
Humans; Infant, Newborn; Female; Male; Middle Aged; Adult; Qualitative Research; *Parent-Child Relations; Social Support; Object Attachment; *Professional-Family Relations; *Adaptation, Psychological; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; *Mothers/px [Psychology]; Intensive Care, Neonatal/mt [Methods]; *Intensive Care, Neonatal/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; Intensive Care, Neonatal/og [Organization & Administration]
BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight mothers., RESULTS: The main findings were that parents with previous complicated births had more difficulties in coping compared to those parents with no experience with complications. Coping seemed easier where parents' opinions were heard regarding their baby's care and when both parents were present in the neonatal intensive care unit (NICU). The main similarities between mothers and fathers were the reluctance to speak their opinions on childcare, and both experienced a sense of alienation and problems in bonding with the baby. They also needed a limitation on the number of visitors in the NICU. Differences between mothers and fathers were that fathers tried hard to be the strong partner in the relationship, and were more concerned with the mother if she was seriously ill postpartum, while mothers were more concerned for their baby. Mothers' postpartum period was felt as more stressful if the father was not present, but mothers were also better at welcoming support from the health personnel., CONCLUSION: This study highlights the parent's coping experiences in NICUs. Coping seemed easier where parents' opinions were heard. Nurses in the NICU should take the former experiences of the parents into consideration when nursing in the NICU and planning for discharge.
Hagen, I H; Iversen, V C; Svindseth, M F
BMC Pediatrics
2016
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/10.1186/s12887-016-0631-9" target="_blank" rel="noreferrer noopener">10.1186/s12887-016-0631-9</a>
Psychological distress and social support among community paediatric palliative care programme caregivers: longitudinal analysis
Palliative Care; child; human; palliative therapy; pediatrics; home care; Social Support; social support; caregiver; distress syndrome; mental stress; letter
Wong ECY; Au-Doung PLW; Chu YYL; Wong SSY; Li CK; Cheung YT
BMJ Supportive and Palliative Care
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="https://spcare.bmj.com/content/early/2023/04/03/spcare-2023-004301">10.1136/spcare-2023-004301</a>
Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting
Adult; Child Preschool; Cohort Studies; Female; Humans; Infant; Male; Qualitative Research; Prospective Studies; Family; Continuity of Patient Care; Hospitalization; Child Mortality; Social Support; Acute Disease; Caregivers; Health Facilities; Family Characteristics; Vulnerable Populations; Rural Population; Kenya/epidemiology; Agency; Child Health; Childhood acute illness; Delivery of Health Care/standards; Treatment-seeking; Vulnerability
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice. METHOD: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches. RESULTS: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers. CONCLUSION: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.
Zakayo SM; Njeru RW; Sanga G; Kimani MN; Charo A; Muraya K; Sarma H; Uddin MF; Berkley JA; Walson JL; Kelley M; Marsh V; Molyneux S
International Journal for Equity in Health
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/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener">10.1186/s12939-020-01252-x</a>
Listening to Parents of Children With Cancer-Between Life and its end
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.
Manor-Binyamini I; Schreiber-Divon M
Journal of Patient Experience
2022
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<a href="http://doi.org/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener">10.1177/23743735221106589</a>
Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
Family/Psychology; Parents/Psychology; Adolescent; Child; Child Care; Children; End of Life Care; Humans; Normality; Paediatrics; Palliative Care; Qualitative Research; Social Support; Symptom Assessment
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
Coombes L; Braybrook D; Roach A; Scott H; Harðardóttir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Harding R
European Journal of Pediatrics
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/s00431-022-04566-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04566-w</a>
A Qualitative Study Into Parents' Experiences With Loss During Their Child's End-Of-Life: Enduring and Intrusions of Grief
child; social support; semi-structured interview; clinical; Child-parent relation; thinking
Background/aims: Parents of children receiving palliative care experience incremental losses and feelings of grief. During the end-of-life (EOL), the dynamics of being confronted with the growing threat of losing their child while fulfilling parenthood gets more strained. A better understanding of grief during the EOL will facilitate bereavement care aligned to the parents' needs. This study aims to gain insight into how parents experience and cope with losses and feelings of grief during their child's EOL.
Kochen E M; Teunissen SC; Boelen PA; Grootenhuis MA; Houben M L; Tataranno ML; Fahner JC; De Jonge RR; Kars MC
Palliative Medicine
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/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
Parental support needs during pediatric resuscitation: A systematic review
Health services needs and demand; Parents; Pediatrics; Resuscitation; Social support; Systematic review
Background Resuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective. Method The PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents. Results There were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met. Conclusion Parents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.
Ghavi A; Hassankhani H; Powers K; Arshadi-Bostanabad M; Namdar-Areshtanab H; Heidarzadeh M
International Emergency 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.ienj.2022.101173" target="_blank" rel="noreferrer noopener">10.1016/j.ienj.2022.101173</a>
Parents' Experiences About Support Following Stillbirth and Neonatal Death
neonatal death; parent experiences; parental grief; professional support; social support; stillbirth
BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.
Camacho ÁM; Fernández MIM; Jiménez-López FR; Granero-Molina J; Hernández-Padilla JM; Hernández SE; Fernández-Sola C
Advances in Neonatal Care
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/10.1097/ANC.0000000000000703" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000703</a>
Making room for life and death at the same time - a qualitative study of health and social care professionals' understanding and use of the concept of paediatric palliative care
Alleviation; Child; Concept; Health care professionals; Hospice and Palliative Care Nursing; Humans; Life limiting; Paediatric; Palliative care; Palliative Care/psychology; Pediatric; Ppc; Qualitative Research; Quality of Life; Social Support; Terminal care
BACKGROUND: The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. METHODS: We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. RESULTS: The data analysis of the concept of pediatric palliative care resulted in two themes. The first theme "A frightening concept that evokes negative emotions," contains categories to explore the meaning, named "An unfamiliar and not meaningful concept, "A concept still associated with death and dying" and "Healthcare professionals' responsibility for introducing and using the concept and, to obtain a common meaning." The second theme was named "A broad and complementary concept," containing the categories "Total care for the child and the family," "Making room for life and death at the same time" and "The meaning of alleviation and palliative care." CONCLUSIONS: The included HCPs reflected differently around PPC but most of them highlighted quality of life, total care for the child and the child's family and interdisciplinary collaboration as core elements. Attention to and knowledge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.
Winger A; Früh EA; Holmen H; Kvarme LG; Lee A; Lorentsen VB; Misvær N; Riiser K; Steindal SA
BMC Palliative Care
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/10.1186/s12904-022-00933-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00933-4</a>
Volunteer-Based Social Support Structures and Program Exposure Outcomes in an Adolescent Young Adult Palliative Care Peer Support Program
Adolescents and young adults; Hospital; Palliative care; Social network analysis; Social support; Volunteer
Objective: To conduct a social network analysis (SNA) of patient-volunteer networks and assess the impact of patient characteristics on network measures. Background(s): Volunteers play a critical role in providing peer support to adolescent and young adult (AYA) palliative care patients. Streetlight at UF Health is a peer support palliative care program for hospitalized AYAs that aims at forming positive peer relationships through volunteer visits, events, and a virtual online health community. Method(s): Data were collected on patient characteristics, hospitalizations, average length of stays (LOS), and volunteer visitation records. Egocentric SNAs were conducted on each patient to calculate network outcomes. Study participants were AYA patients (N=69), enrolled in the US-based Streetlight program at UF Health Shands Hospital. Result(s): The LOS was significantly associated with network size (B=0.583; 95% confidence interval; CI [0.463 to 0.702]). Autoimmune patients had smaller network sizes when controlling for LOS. Total hospital admissions predicted -0.172 ([-0.263 to -0.080]) lower average repeat visits. Higher average repeat visits were predicted for patients who had cancer (B=0.246 [0.046 to 0.447]) and awaiting organ transplantation (B=0.370 [0.082 to 0.658]). Although cystic fibrosis patients received more visits (B=0.364 [0.003 to 0.724]) compared with other illness populations, the network density was lower (B=-0.580 [1.01 to -0.155]). Cancer patients had networks with a higher diversity in volunteer repeat visits (B=0.714 [0.312 to 0.920]). Conclusion(s): Significant relationships between patient characteristics and network outcomes highlight the differences in social support service delivery among diverse populations. These analyses can be utilized in practice to guide program delivery for high-need patients.
Walker AL; Marchi E; Puig A; Slayton W; Dodd V; McVay MA; Livingston MD
Journal of Palliative Medicine
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/10.1089/jpm.2021.0426" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0426</a>
Mothers' Support Preferences With Their Chronically Ill Child's Health Care Team
Pediatric palliative care; Health communication; Pediatric nursing; Chronic illness; Social support
Children living with medical complexities are a growing population in the United States. Supportive pediatric health care team members are arguably the single most important factor in helping mothers manage their child's multifaceted condition. To better understand what constitutes helpful support from health care team members, we interviewed 17 mothers affiliated with a pediatric palliative care program at a large Midwestern U.S. hospital. Using Charmaz's approach to grounded theory analysis, we found that mothers desired a collaborative partnership with their child's health care team. However, the development of this partnership was contingent upon team members' effective use of informational, emotional, and network support. We identified two specific strategies that qualified each of these three different types of helpful supportive communication. These strategies may be implemented into training and educational programs for health care professionals to improve their communication skills.
Rafferty KA; Nemmers-Bello S; Tietz S; Lipovac M
Western Journal of Nursing Research
2021
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<a href="http://doi.org/10.1177/01939459211030338" target="_blank" rel="noreferrer noopener">10.1177/01939459211030338</a>
Utilization of Parallel Resources and Sociodemographic Factors in Treating Children with Complex Chronic Diseases: A Cross-Sectional Study
pediatric; social support; public health; psychosocial support systems; child health services; socioeconomic factors; complex chronic care; multiple chronic conditions; alternative therapies
Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other out-of-pocket expenses for healthcare. The use of these alternative health resources is sometimes unclear and may lead to health inequalities. To characterize the use made of alternative healthcare resources for children with complex chronic conditions. Additionally, we evaluate the influence of sociodemographic factors on the distribution of this utilization of resources; (2) Methods: Cross-sectional study. Children with complex chronic diseases were treated at a tertiary hospital in Granada, Spain in 2016. We analyzed their use of healthcare resources and socioeconomic variables. This research complies with STROBE guidelines for observational studies; (3) Results: In total, 265 children were analyzed (mean age 7.3 years, SD 4.63). A total of 105 children (39.6%) attended private consultations with specialists, and 12.1% (n = 32) of the children had additional private health insurance. One out three parents belonged to a mutual support association (n = 78), and 26% (n = 69) of the children used alternative therapies. Furthermore, 75.4% (n = 199) of the children received no psychological support. Children whose parents had a higher educational level and occupations status made greater use of parallel healthcare resources.; (4) Conclusions: A significant proportion of children used multiple health resources in addition to the public healthcare system depending on sociodemographic determinants. Studies are needed to determine whether the use of these alternative services achieves better levels of health.
Pérez-Ardanaz B; Peláez-Cantero MJ; González-Cano-Caballero M; Gutiérrez-Rodríguez L; Gómez-González AJ; Lupiáñez-Pérez I; Morales-Asencio JM; Canca-Sánchez JC
Children
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/10.3390/children8110973" target="_blank" rel="noreferrer noopener">10.3390/children8110973</a>
Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
Attitude to Health; Decision Making; Fetal Viability; Financial Stress; Parents; periviable delivery; Pilot Projects; Pregnancy; Premature Birth; Qualitative Research; Quality of Life; Religion; Resuscitation Orders; Second Trimester Pregnancy; shared decision making; Social Support; values clarification
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "Financial Concerns" the highest (average 6.6), both groups ranked "Financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
Tucker EB; Hoffman SM; Laitano T; Bhamidipalli SS; Jeffries E; Fadel W; Kavanaugh K
Paediatric and Perinatal Epidemiology
2020
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<a href="http://doi.org/10.1111/ppe.12590" target="_blank" rel="noreferrer noopener">10.1111/ppe.12590</a>
Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review
social support; palliative care; nursing; parents; Child health
The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.
Oakley S; Dunbar H; de Vries K
Journal of Child Health Care
2021
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<a href="http://doi.org/10.1177/13674935211026122" target="_blank" rel="noreferrer noopener">10.1177/13674935211026122</a>
Defining Legacy: The Perceptions of Pediatric Health Care Providers
Child; Female; Humans; Male; Adaptation Psychological; Attitude to Death; Child Hospitalized/psychology; Terminal Care/psychology; pediatrics; Parents/psychology; Physician's Role; Social Support; Pediatrics/standards; Terminally Ill/psychology; health care; legacy; perceptions; providers
Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored pediatric health care providers' perceptions of legacy at an academic medical center to ensure that future legacy interventions are evidence-informed and theoretically grounded. An electronic survey featuring three open-ended questions and two multiple-choice questions with an option for free text response was completed by 172 medical and psychosocial health care providers. Analysis yielded four themes: (1) legacy is intergenerational, enduring, and typically associated with end-of-life; (2) legacies articulate the impacts on others for which one is known and remembered; (3) legacies can be expressed through tangible items or intangible qualities; and (4) legacies are informed and generated by family relationships and work experiences. By understanding legacy as a personally and professionally contextualized experience, health care providers can better assess and meet the legacy needs of hospitalized pediatric patients and families.
Boles J; Jones M; Dunbar J; Cook J
Clinical Pediatrics
2020
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<a href="http://doi.org/10.1177/0009922820940808" target="_blank" rel="noreferrer noopener">10.1177/0009922820940808</a>
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Pediatric Blood and Cancer
2020
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<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer
social support; pediatric cancer; parental experience; meaning making; emotional support; parent support; practical support
Problem Identification: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs.Literature Search: The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria.Data Evaluation/Synthesis: Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying childRest in peace: Parent needs during the child's deathFeeling abandoned: Parent needs for contact after the child's deathSearching for Meaning: Parents needs when making sense of lossConclusion: Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).
Kenny M; Darcy-Bewick S; Martin A; Eustace-Cook J; Hilliard C; Clinton F; Storey L; Coyne I; Murray K; Duffy K; Fortune G; Smith O; Higgins A; Hynes G
Journal of Psychosocial Oncology
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/10.1080/07347332.2020.1762822" target="_blank" rel="noreferrer noopener">10.1080/07347332.2020.1762822</a>
When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
Attitude to Death; Grief; Adaptation; Bereavement; Hospice Care/methods/psychology/standards; Humans; Interventions; Models theoretical; Paediatrics; Parenting/psychology; Parents; Parents/psychology; Psychological; Psychological Theory; Social Support; Systematic review
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base. CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality. TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).
Kochen EM; Jenken F; Boelen PA; Deben LMA; Fahner JC; van den Hoogen A; Teunissen SCCM; Geleijns K; Kars MC
BMC Palliative Care
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/10.1186/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-0529-z</a>
The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
ethics; social support; neonatal intensive care; end-of-life decision making; job satisfaction; neonatologists; health behavior; medical personnel; study design; well-being of health workers
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the decision-making process, parental communication, to analyse the differences between HUNIC results in 2015-2016 and EURONIC results in 1996-1997, to compare the attitudes of neonatologists and neonatal nurses, and to identify factors that might affect those attitudes and opinions. A further important objective of the HUNIC study is to compare these attitudes and opinions of neonatal care providers with their personal work experience, educational background in the bioethics field, social support, work and life satisfaction, burnout, health behaviour and psychosocial health. This paper aims to present the methodology of an extensive, complex, and multidisciplinary survey (HUNIC) within the framework of the EURONIC. Copyright © 2019 Semmelweis University Institute of Mental Health, Budapest
Feith H J; Kiss Z S; Pilling J; Kovacs A; Szabo M; Cuttini M; Berbik I; Gezsi A; Gradvohl E
European Journal of Mental Health
2019
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/10.5708/EJMH.14.2019.2.6" target="_blank" rel="noreferrer noopener">10.5708/EJMH.14.2019.2.6</a>
Parents' Experiences About Support Following Stillbirth and Neonatal Death
neonatal death; parent experiences; parental grief; professional support; social support; stillbirth
BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.
Camacho Ávila M; Fernández Medina I M; Jiménez-López F R; Granero-Molina J; Hernández-Padilla J M; Hernández Sánchez E; Fernández-Sola C
Advances in Neonatal Care
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/10.1097/ANC.0000000000000703" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000703</a>
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
Adult; Age Factors; Clinical Competence; confidence and comfort; Cross-Sectional Studies; Educational Status; Female; Humans; Male; Marital Status; neonatal palliative care; neonatal professional; neonatology; Palliative Care; Self Concept; Social Support; Surveys and Questionnaires; Taiwan
BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This study evaluated the factors associated with the confidence and comfort levels of neonatal clinicians providing neonatal palliative care. METHODS: A cross-sectional survey and questionnaire were used to investigate the confidence and comfort levels of neonatal clinicians regarding neonatal palliative care. RESULTS: Research subjects included 154 neonatal clinicians. Clinicians' confidence in providing neonatal palliative care was significantly impacted by age, marital status, years of professional experience (p < 0.05), and prior palliative care training. Comfort levels were significantly impacted by educational degree, marital status, and years of working experience. Clinicians with a supportive workplace reported increases in both professional confidence (r = 0.286, p < 0.001) and personal comfort (r = 0.521, p < 0.001). CONCLUSION: Research reveals the importance of neonatal palliative education and suggests further development of interdisciplinary neonatal palliative care teams to improve clinicians' professional confidence and personal comfort.
Peng N H; Liu H F; Wang T M; Chang Y C; Lee H Y; Liang H F
Journal of Palliative Medicine
2018
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/10.1089/jpm.2018.0102" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0102</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
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).
"You Are Not Alone": Advice Giving for Parents of Children Living with Complex Chronic Conditions
complex chronic conditions; Advice; health communication; parental caregivers; pediatric healthcare; social support
Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer different forms of experiential wisdom garnered from their own parental caregiving experiences. Contributing to the naturalistic, health-context investigations of advice messages, we interviewed 35 parents who discussed their experiences with parenting their medically complex child. Part of the broader interview protocol asked parents about advice they would offer to other parents like them. We conducted a thematic analysis of parents' responses to these questions to understand advice content, form of advice giving messages, challenges experienced by parents, and suggested best practices for managing a child's CCC. We present our findings and discuss implications on educating health care professionals about how to cultivate advice networks and the need for more parent peer mentoring programs.
Rafferty KA; Beck GA
Health Communication
2019
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/10.1080/10410236.2019.1636341" target="_blank" rel="noreferrer noopener">10.1080/10410236.2019.1636341</a>
Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study
death; article; child; female; human; major clinical study; male; palliative therapy; social support; decision making; ethics; thematic analysis; trisomy 13; trisomy 18; trust; adverse event; clinician; disability; questionnaire
BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. AIM: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict. DESIGN: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods. SETTING/PARTICIPANTS: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children. RESULTS: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make-or be part of-life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust. CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.
Janvier A; Farlow B; Barrington KJ; Bourque CJ; Brazg T; Wilfond B
Palliative Medicine
2019
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/10.1177/0269216319860662" target="_blank" rel="noreferrer noopener">10.1177/0269216319860662</a>
Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach
Palliative Care/og [Organization & Administration]; Social Support; Child; Humans; Adolescent; Information Storage and Retrieval; Respite Care; Siblings
BACKGROUND: Models of palliative care need to address the unmet needs of children, young people and families. OBJECTIVE: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents. DATA SOURCES: Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies. STUDY SELECTION: Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion. DATA EXTRACTION AND SYNTHESIS: Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach. RESULTS: Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24h specialist support, respite care and sibling support. CONCLUSIONS: Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.
Virdun C; Brown N; Phillips J; Luckett T;Agar M; Green A; Davidson PM
Collegian: Journal of the Royal College of Nursing, Australia
2015
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.colegn.2014.07.001" target="_blank" rel="noreferrer noopener">10.1016/j.colegn.2014.07.001</a>
Development and delivery of a one-stop multidisciplinary clinic to provide comprehensive palliative and supportive care for children with cancer
pain; social support; caregiver; terminal care; education; major clinical study; psychologist; outpatient; cancer patient; hospital patient; holistic care; malignant neoplasm; antibiotic agent; conference abstract; financial management; physiotherapist; human; child; female; male; palliative therapy; drug therapy; multidisciplinary team; doctor nurse relation; ambulatory care; dietitian; nutritional counseling; patient coding; physiotherapy; wound
Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and ambulatory care IV antibiotics. Other Cankids Social Support services were generally not being offered. Objective of this service was to run a One-stop Social Support Clinic providing holistic care and strengthening Palliative Care Outpatient and Inpatient Services. Design/Methods: Pilot phase of the Clinic (Mar-Sep 2017) supplemented the ambulatory care service with additional access to Pain, Symptom, Wound Management, Psychological and Nutritional Counselling, Physiotherapy, Educational, Financial Support and Patient Navigation along with care giver education by trained professional team. The Clinic operated seven days a week, with 68 clinics, providing 11 services. Providers were trained for Patient Navigation and referrals, Standard Operational Procedures and Patient data management. Results: Total 1,204 patients received 7,101 episodes of care. 195(16%) patients received Palliation of symptoms. Indication for inpatient admissions in 8 out of 64 were for end of life care. 23(62%) of 37 new inpatient admissions were from the Clinic. 261 (57%) of 456 patients who came for IV Ambulatory Care received other social support services including Pain, Symptom Management, Psychological, Nutritional, Hematological Support, Physiotherapy, Medical assistance and Investigations and Educational Scholarships. 25 Patient Care Training Sessions were attended by 347 caregivers. 62.6% participants were extremely satisfied and 37.6% satisfied with the services provided. Conclusions: A well run Social Support One-stop Clinic together with a Multi Disciplinary Team including Palliative Care Physicians, Nurses, Psychologists, Nutritionists,Physiotherapists and Patient Navigators at the Pediatric Palliative Care Center provides enhanced holistic care and a better understanding and acceptance of palliative care. It also provides a platform and the time for parent education on how to care for their child during treatment at home and in the hospital setting.
Anis H; Taluja A; Chuki T; Crack L; Arora R; Bagai P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services
social support; qualitative analysis; palliative therapy; major clinical study; sibling; non profit organization; skill; joint; human; article; child; female; male; controlled study; adult; interview; total quality management; transition to adult care; learning; social media; adult child; secondary analysis; dilution; facilitation; social isolation
AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).
Noyes J; Pritchard S; Pritchard A; Bennett V; Rees S
Journal of advanced nursing
2018
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener">10.1111/jan.13811</a>
Grief and growth in bereaved siblings: Interactions between different sources of social support
Bereavement; Grief; Interpersonal Interaction; Siblings; Social Support
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3–12 months after a child’s death. Bereaved siblings were 8–18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record (c) 2018 APA, all rights reserved) Impact and Implications—This study suggests that school-based social support may enhance the positive effect of parental support for bereaved siblings and, in the case of peer support, compensate for low parental support. Thus, bereaved siblings may benefit from social support from teachers and close friends across ages, with adolescents in middle/high school particularly benefitting from social support from peers and close friends. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Howard SKM; Russell C; Keim M; Barrera Maru; Gilmer Mary Jo; Foster AT; Compas BE; Fairclough DL; Davies B; Hogan Nancy; Young-Saleme T; Vannatta K; Gerhardt CA
School Psychology Quarterly
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1037/spq0000253" target="_blank" rel="noreferrer noopener">10.1037/spq0000253</a>
Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child
economics; empathy; nursing; psychology; adult; climacterium; complication; coping behavior; critical illness; etiology; female; human; male; mental stress; parent; pediatric intensive care unit; qualitative research; social support
Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their families. In most cases this means the child's carers, their parents, most often their mothers, are required to undertake a great deal of the child's care. During a project on parental coping I became aware of the ways in which parents were restructuring their working lives in order to meet the demands of the nursing and medical care needs of their children. In this paper I relate the stories we discovered in this qualitative study and discuss the tensions between parental and state's responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children's care. I use Margret Urban Walker's ideas of expressive collaborative morality to argue that the care of life limited and life threatened children should be framed in a negotiation between the state and the carers, both informal and professional. That such an agreement should include a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child's life and their death.
Randall DC
Comprehensive child and adolescent 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="http://doi.org/10.1080/24694193.2017.1376360" target="_blank" rel="noreferrer noopener">10.1080/24694193.2017.1376360</a>
Developing a process to support perinatal nurses after a critical event
Humans; Terminal Care; Attitude to Death; Neonatal Nursing; social support; Clinical Competence; Perinatal Care; Program Development; Needs Assessment; Nursing Methodology Research; Self Care; Risk Management; Family Nursing; Staff Development; Stress; Adaptation; Psychological; Models; Grief; Emergencies; Crisis Intervention
The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization identified processes to help themselves recover and to support each other. The result of this work is a written plan to facilitate the support of perinatal nurses after critical events. This article describes the development and implementation of this plan.
2014-03
Foreman S
Nursing For Women's Health
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).
Journal Article
<a href="http://doi.org/10.1111/1751-486X.12094" target="_blank" rel="noreferrer">10.1111/1751-486X.12094</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
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/10.12968/ijpn.2014.20.4.173" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.4.173</a>