Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)
Bereavement; Cause of Death; Child Pediatricians; Child Welfare; Childhood; Coping; Death; Emergency Service; England; Evaluation; Family; Family Support; Infancy; Parents; Police Home Visits; Psychosocial Factors; Sudden
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater Manchester, United Kingdom (UK) shows how a number of key service outcomes can be measured and achieved through a raft of actions which are commensurate with and exceed the service level recommended by the UK Government. Annual reports covering the work of the Greater Manchester SUDC team are compiled from audit forms completed by the attending SUDC pediatrician for each case. Data from these reports from April 1, 2015 to March 31, 2020 were analyzed. Most cases happened out of normal working hours, predominantly on Sundays. This supports the need for a 24-hour, 7 days per week SUDC service to enable early investigation and timely support for families. The review demonstrated that the Greater Manchester model is able to deliver this in a rapid response with early attendance in emergency departments and early home visits; effective joint agency working with police, children's social services, and other agencies; and provision of support to families. The proposed instigation of a key worker role in the SUDC team is a welcome development. This is central to ameliorating the experience for parents by providing bereavement support separate from the investigative role of the SUDC team. Research is needed into the role of the key worker, potentially as a dedicated bereavement nurse, and understanding of families' experiences to ensure that support is optimal.
Quinn S; Dierckx E; Long T; Rowland AG
Comprehensive Child & Adolescent Nursing
2022
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<a href="http://doi.org/10.1080/24694193.2022.2047828" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2047828</a>
Good-parent beliefs of parents of seriously ill children
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Parent-Child Relations; Parents; Questionnaires; Chronic disease; Child welfare; Acute Disease; Stress; Practice; Preschool; Adaptation; Psychological; Attitudes; Newborn; Health Knowledge; Philadelphia
IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
2015-01
Feudtner C; Walter JK; Faerber JA; Hill DL; Carroll KW; Mollen CJ; Miller VA; Morrison WE; Munson DA; Kang T; Hinds PS
Jama Pediatrics
2015
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Journal Article
<a href="http://doi.org/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.2341</a>
Pediatric palliative care.
Child; Humans; Professional-Family Relations; Interdisciplinary Communication; Resuscitation Orders; Adaptation; Psychological; patient care team; Psychological; Stress; DNAR; Child welfare; hospice care; Analgesics/tu [Therapeutic Use]; Palliative Care/px [Psychology]; decision making; Pain/dt [Drug Therapy]; Pediatrics/td [Trends]; Quality of Life/px [Psychology]; Analgesics/ae [Adverse Effects]; Constipation/ci [Chemically Induced]; Nausea/ci [Chemically Induced]; Vomiting/ci [Chemically Induced]
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).Copyright 2010 Mosby, Inc. All rights reserved.
2010
Klick JC; Hauer JM
Current Problems In Pediatric And Adolescent Health Care
2010
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Journal Article
<a href="http://doi.org/10.1016/j.cppeds.2010.05.001" target="_blank" rel="noreferrer">10.1016/j.cppeds.2010.05.001</a>
One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer
adolescent; Child; Female; Humans; Male; Neoplasms; Emotions; Siblings; Age Factors; Health Status; Child welfare; Sex Factors; Cognition Disorders; quality of life; Adaptation; Psychological; sibling bereavement
BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the illness. METHODS: Participants were 83 siblings from 56 families-46 girls and 37 boys, aged 7-18. The assessment took place 1 month to 8 weeks after the diagnosis of cancer in the ill child. The siblings' QoL was assessed with the TNO-AZL children's quality of life questionnaire (TACQOL). Coping strategies were assessed with the Cognitive Coping Strategies Scale for siblings (CCSS-s). Physical problems and eating and sleeping problems that existed before the ill child was diagnosed were determined in a structured interview with the parents. RESULTS: A substantial number of siblings reported impaired cognitive and emotional QoL compared to the reference group. School-aged siblings (7-11 years) reported more trouble with motor functioning than peers. The coping strategy 'predictive control' (maintaining positive expectations regarding the illness) positively predicted siblings' QoL. The presence of health problems before diagnosis was negatively associated with siblings' QoL. Older siblings reported more negative emotions, while girls reported lower social QoL and reliance on 'interpretative control' (trying to understand the illness) was associated with fewer positive emotions. CONCLUSIONS: During the first 2 months after the diagnosis of cancer in a brother or sister, siblings have relatively lower QoL than peers. Health problems that existed before diagnosis may be a predictor of later adjustment problems. Positive expectations about the course of the illness appear to protect siblings from distress. Information about the illness is a delicate issue that requires parental guidance.
2005-01
Houtzager BA; Grootenhuis MA; Hoekstra-Weebers JE; Last BF
Child: Care, Health And Development
2005
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2005.00459.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2005.00459.x</a>
Surviving childhood cancer: parents' perceptions of their child's health
Adaptation; PedPal Lit; Therapy; Child welfare; Health Status Humans Long-Term Care Longitudinal Studies Male Middle Aged Neoplasms/diagnosis/psychology/; Non-U.S. Gov't Risk Assessment Survivors Time Factors; Parent-Child Relations Probability Questionnaires Regression Analysis Research Support; Preschool Female Follow-Up Studies; Psychological Adolescent Adult Caregivers/psychology Child
2005
Svavarsdottir EK
Journal Of Pediatric Oncology Nursing
2005
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Journal Article
<a href="http://doi.org/10.1177/1043454204273812" target="_blank" rel="noreferrer">10.1177/1043454204273812</a>
Silhouette of pain
Child; Female; Humans; Pregnancy; Pregnancy Complications; Adult; Family Health; PedPal Lit; Chronic disease; Infectious; poverty; Child welfare; Relief Work; Vulnerable Populations; Benzocaine; Chickenpox/complications; Hepatitis/complications; Mississippi
2006
Cora-Bramble D
Academic Medicine
2006
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Journal Article
Children, cancer, and nutrition--A dynamic triangle in review
Child; Humans; infant; Prognosis; Nutritional Support; Health Status; Survival Analysis; Incidence; Preschool; Non-U.S. Gov't; Research Support; infant; Nutritional Status; Newborn; Nutritional Failure; Child welfare; Developing Countries; Malnutrition/epidemiology/physiopathology; Neoplasms/complications/therapy; Nutrition Assessment
The overall cure rate for cancer in childhood now exceeds 70% and is projected to reach 85% by the year 2010 in industrialized countries. Therefore, major attention is being placed on reducing the side effects of therapy. However, 85% of the world's children live in developing countries, where access to adequate care often is limited and health status frequently is influenced adversely by prevalent infectious diseases and malnutrition. Despite several confounding factors (different definitions of nutritional status, the wide variety of measures used for its assessment, the selection biases by disease and stage, treatment protocols of variable dose intensity and efficacy, small sample sizes of the studies conducted in the last 20 years), it is accepted that the prevalence of malnutrition at diagnosis averages 50% in children with cancer in developing countries; whereas, in industrialized countries, it is related to the type of tumor and the extent of the disease, ranging from < 10% in patients with standard-risk acute lymphoblastic leukemia to 50% in patients with advanced neuroblastoma. The importance of nutritional status in children with cancer is related to its possible influence on the course of the disease and survival. Some authors have described decreased tolerance of chemotherapy associated with altered metabolism of antineoplastic drugs, increased infection rates, and poor clinical outcome in malnourished children. In this article, the authors review methods of nutritional assessment and the pathogenesis of nutritional morbidity in children with cancer as well as correlations of nutritional status with diagnosis, treatment, and outcome.
2004
Sala A; Pencharz P; Barr RD
Cancer
2004
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Journal Article
<a href="http://doi.org/10.1002/cncr.11833" target="_blank" rel="noreferrer">10.1002/cncr.11833</a>
Narrative based medicine
Child; Humans; Physician-Patient Relations; Communication; Health Services; Child welfare; Biography
2003
Taylor DC
Developmental Medicine And Child Neurology
2003
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Journal Article
<a href="http://doi.org/10.1017/s0012162203000288" target="_blank" rel="noreferrer">10.1017/s0012162203000288</a>
Family, maternal, and child health through photovoice
Child; Female; Humans; Male; Adult; Health Planning; Middle Aged; California; Needs Assessment; Family Health; adolescent; Non-U.S. Gov't; Research Support; Policy Making; Community Networks; Child welfare; Maternal Welfare; Photography
OBJECTIVE: (1) To introduce photovoice, a participatory action research methodology, for use by MCH program managers to enhance community health assessments and program planning efforts, (2) to enable community people to use the photovoice methodology as a tool to record, reflect, and communicate their family, maternal, and child health assets and concerns, and (3) to educate community leaders about family, maternal, and child health issues from a grassroots perspective. METHODS: Photovoice is based upon the theoretical literature on education for critical consciousness, feminist theory, and community-based approaches to documentary photography. Picture This Photovoice project took place in Contra Costa, an economically and ethnically diverse county in the San Francisco Bay area. Sixty county residents of ages 13-50 participated in 3 sessions during which they received training from the local health department in the techniques and process of photovoice. Residents were provided with disposable cameras and were encouraged to take photographs reflecting their views on family, maternal, and child health assets and concerns in their community, and then participated in group discussions about their photographs. Community events were held to enable participants to educate MCH staff and community leaders. RESULTS: The photovoice project provided MCH staff with information to supplement existing quantitative perinatal data and contributed to an understanding of key MCH issues that participating community residents would like to see addressed. Participants' concerns centered on the need for safe places for children's recreation and for improvement in the broader community environment within county neighborhoods. Participants' definitions of family, maternal, and child health assets and concerns differed from those that MCH professionals may typically view as MCH issues (low birth weight, maternal mortality, teen pregnancy prevention), which helped MCH program staff to expand priorities and include residents' foremost concerns. CONCLUSIONS: MCH professionals can apply photovoice as an innovative participatory research methodology to engage community members in needs assessment, asset mapping, and program planning, and in reaching policy makers to advocate strategies promoting family, maternal, and child health as informed from a grassroots perspective.
2004
Wang CC; Pies CA
Maternal And Child Health Journal
2004
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Journal Article
<a href="http://doi.org/10.1023/b:maci.0000025732.32293.4f" target="_blank" rel="noreferrer">10.1023/b:maci.0000025732.32293.4f</a>
Evaluation of heart murmurs in children: cost-effectiveness and practical implications
Child; Humans; infant; Prevalence; Decision Support Techniques; Sensitivity and Specificity; Infant Welfare; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Comparative Study; Newborn; Child welfare; Radiography; Cardiology/economics; Cost-Benefit Analysis/economics; Echocardiography/economics; Electrocardiography/economics; Heart Murmurs/diagnosis/economics/epidemiology; Pediatrics/economics; Referral and Consultation/economics; Thoracic/economics
OBJECTIVE: To assess the cost-effectiveness of various strategies to evaluate heart murmurs in children. METHODS: We modeled 6 strategies to follow the initial examination by the pediatrician: (1) refer suspected pathologic murmurs to a cardiologist, (2) obtain a chest radiograph (CXR) and electrocardiogram (ECG) and refer suspected pathologic murmurs to a cardiologist, (3) refer suspected pathologic murmurs for an echocardiogram (ECHO), (4) obtain a CXR and ECG and refer suspected pathologic murmurs for an ECHO, (5) refer all patients with murmurs to a cardiologist, or (6) refer all patients with murmurs for an ECHO. RESULTS: The least effective was strategy 1, which detects 82% of pathologic murmurs at $72 per patient evaluated. Strategy 5 detects 95% of pathologic murmurs at $38,000 per additional case detected over strategy 1. The most effective, strategy 6, detects 100% of pathologic murmurs at $158,000 per additional case detected over strategy 5. Strategies 2, 3, and 4 were not cost-effective. The results were sensitive to the costs of cardiology referral and ECHO. CONCLUSIONS: Adding a CXR and ECG to the pediatrician's evaluation, or selectively referring directly to ECHO increases costs with little gain in accuracy. Given the current cost constraints present in health care, whether the optimal strategy involves referring to a cardiologist or obtaining an ECHO for all patients with murmurs depends on how much society should allocate to diagnose pathologic murmurs.
2002
Yi MS; Kimball TR; Tsevat J; Mrus JM; Kotagal UR
The Journal Of Pediatrics
2002
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Journal Article
<a href="http://doi.org/10.1067/mpd.2002.127502" target="_blank" rel="noreferrer">10.1067/mpd.2002.127502</a>
Sorting through the haystack--decision analysis and the search for heart disease among children with murmur
Child; Humans; infant; Adult; Decision Support Techniques; Sensitivity and Specificity; Infant Welfare; adolescent; Preschool; infant; Newborn; Child welfare; Cost-Benefit Analysis/economics; Heart Diseases/diagnosis/economics
2002
Danford DA
The Journal Of Pediatrics
2002
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Journal Article
<a href="http://doi.org/10.1067/mpd.2002.128657" target="_blank" rel="noreferrer">10.1067/mpd.2002.128657</a>
Pain in children with cerebral palsy: a review.
Child; Humans; Pain Measurement; Nurse's Role; Severity of Illness Index; Needs Assessment; Risk Factors; Activities of Daily Living; Nursing Assessment; Child welfare; Cerebral Palsy/co [Complications]; Pain/di [Diagnosis]; Pain/et [Etiology]; Pain Management; Motor Skills; Pain
Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for children with CP due in part to the inherent deficits associated with the disease, as well as the invasive medical and surgical procedures and rehabilitative activities children with CP undergo on a regular basis. A review of current literature indicates pain is a common experience for children with CP and has been understudied in this population. Further emphasis and research on appropriate assessment and management strategies sensitive to the unique characteristics and limitations of children with CP are warranted.
2004
Kieckhefer GM; Engel Joyce M; Jensen MP; Labyak S
The Journal Of Neuroscience Nursing : Journal Of The American Association Of Neuroscience Nurses
2004
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Journal Article
<a href="http://doi.org/10.1097/01376517-200410000-00004" target="_blank" rel="noreferrer">10.1097/01376517-200410000-00004</a>
The 2002 Schering Lecture. Children's cancer symptom experiences: keeping the spirit alive in children and their families
Child; Humans; Palliative Care; Nurse's Role; Motivation; Non-U.S. Gov't; Research Support; PedPal Lit; social support; Emotions; Attitude; Child welfare; Family Health; Religion; Neoplasms/complications/nursing/psychology
Despite the finding that each child and family experienced cancer in their own unique way, they all shared the need to maintain a sense of spirit. Just as the suffering united the families, so too did their sense of spirit. Talk of the spirit is not foreign in the pediatric oncology literature. Statements such as "the children's responses suggest a resolute spirit that accepts cancer and goes on with life" (Hockenberry-Eaton & Minick, 1994, p.1030) are dispersed throughout the literature and reinforce the importance of the spirit in children and families experiencing childhood cancer. Yet despite this, the spirit in children with cancer has received minimal attention from researchers (Woodgate, 2001). The focus has been solely directed at studying the sense of self in children. In fact, some would even argue that the spirit can be equated with one's sense of self. There is also the feeling that the spirit is something that does not exist. How could it be "real" when it has never been seen or even measured in research? However, just because something cannot be seen or measured, does not mean that it does not exist. As was revealed by the families participating in my study, there was a spirit within them that got them through the cancer experience, especially during times of increased symptom distress. Research that seeks to describe the "spirit within" of children and families who are going through many of life's challenges is warranted. This includes understanding the conceptualization of the spirit from the perspectives of children experiencing illness. Although understanding spirituality and spiritual distress is beginning to be studied in children experiencing illness (Pehler, 1997), children's perspectives are usually not accessed. By developing a deeper understanding of the "spirit within," oncology nurses and other professionals caring for children with cancer may be able to provide more sensitive and comprehensive care. They will have a better understanding to nursing the spirit. So to conclude, let us as oncology nurses continue to help families maintain their sense of spirit. And yes, let us maintain a sense of spirit within ourselves. We could learn from the families we care for with respect to how to nurture our spirits and the spirits of those close to us. Taking care, holding on to the belief, taking one day at a time, and so on, are all strategies that we could learn to incorporate more frequently into our daily lives. May a part of the spirits of those we care for be with us and live on in us forever, because their lingering spirits are sources of hope and strength, as this mother reinforced.
2003
Woodgate RL
Canadian Oncology Nursing Journal
2003
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Journal Article
Beliefs about pain among professionals working with children with significant neurologic impairment
Child; Female; Humans; Male; Physician-Patient Relations; Adult; Health Care Surveys; Attitude of Health Personnel; Pain; quality of life; Nervous System Diseases/complications; caregivers; Child welfare
2001
Oberlander T; O'Donnell ME
Developmental Medicine And Child Neurology
2001
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Journal Article
<a href="http://doi.org/10.1111/j.1469-8749.2001.tb00734.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.2001.tb00734.x</a>
ABC of palliative care. Special problems of children
Child; Humans; Palliative Care; Pain Measurement; Great Britain; Child Health Services; Family Health; Preschool; bereavement; Pain/etiology; social support; Child welfare
1998
Goldman A
Bmj (clinical Research Ed.)
1998
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Journal Article
<a href="http://doi.org/10.1136/bmj.316.7124.49" target="_blank" rel="noreferrer">10.1136/bmj.316.7124.49</a>
Assessing mothers' attitudes about the physician's role in child health promotion
Child; Female; Humans; Adult; Attitude to Health; Questionnaires; Massachusetts; Physician's Role; Preschool; Adolescent Transitions; Child welfare; health promotion; Mothers/psychology/statistics & numerical data
OBJECTIVE: This study assessed maternal attitudes about the physician's role in child health promotion. METHODS: Home interviews were conducted with 200 Massachusetts mothers (with one child age 2 to 3 years) enrolled in a health maintenance organization. RESULTS: Mothers chose growth and nutrition, physical development, and illness as the most important topics and felt that providers have the ability to prevent problems and to help. Psychosocial and safety issues were less important, although mothers felt susceptible to these issues and believed they greatly affected children's health. CONCLUSIONS: On all issues, mothers believed physicians were more effective in helping families after, not before, problems arose. The Health Belief Model provided insight into attitudes and possible interventions.
1996
Cheng TL; Savageau JA; Bigelow C; Charney E; Kumar S; DeWitt TG
American Journal Of Public Health
1996
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Journal Article
<a href="http://doi.org/10.2105/ajph.86.12.1809" target="_blank" rel="noreferrer">10.2105/ajph.86.12.1809</a>