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>
Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
Collaboration; Child; Pain; Hospitals Pediatric; Critical Illness; Female; Male; Palliative Care; Quality of Life; Questionnaires; Needs Assessment; Data Collection; Cognition; Health Services Accessibility; Education; Community Health Services; Program Implementation; Child Advocacy; Human; India; Symptoms; Administration; International Agencies; Licensure; Pediatric Care; Only Child; In Infancy and Childhood; Academic Performance; Health and Welfare Planning; Health Facility Administrators; Personnel Health Facility; Psychosocial Functioning; Teamwork
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Materials and Methods: The CPC project was a 5-year service development project (April 2010--March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC. Results: The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level. Conclusion: The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.
Muckaden MA; Ghoshal A; Talawadekar P; Marston JM; Paleri AK
Indian Journal of Palliative Care
2022
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<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener">10.25259/IJPC_20_2021</a>
Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments
Palliative Care; pain; quality of life; pediatric palliative care; symptoms; assessment tools
The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting, the heterogeneity of diseases, the presenceof cognitive impairment in many patients, and the physiological development of children, outcomescan be complex and difficult to measure. Consequently, in this context, the use of standardizedand validated tools to assess the needs of children and families, to assess symptom severity, andto estimate the quality of PPC service represent a current need. Even if efforts have been made tostandardize approaches and tools for palliative care in adults, to our knowledge, a similar comprehensiveassessment of PPC has not yet been conducted to date. This narrative review provides anoverview and discusses the evaluation of tools currently applied in PPC, with an educational intentfor healthcare providers. We found that several instruments are available to assess different dimensionsof PPC. We proposed a classification into eligibility tools, patient and family needs assessmenttools, and care assessment tools. At present, two main eligibility tools exist, the PaPaS Scale and theACCAPED Scale questionnaire. Most of the tools for patient and family needs assessment have notbeen specifically validated in the PPC setting, and many may be more readily applied in researchsettings rather than in daily practice. Similar considerations can be made for tools assessing QoL,while tools assessing PPC service quality seem to be easily applied. Efforts to develop new specifictools and validate existing ones are undoubtedly advocated. However, in the patient's best interest,PPC healthcare providers should start using available tools, regardless of their validation status.
Papa S; Mercante A; Giacomelli L; Benini F
Children (Basel)
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/10.3390/children10081406" target="_blank" rel="noreferrer noopener">10.3390/children10081406</a>
Research barriers in children and young people with life-limiting conditions: a survey
Adolescent; Child; Humans; Palliative Care/methods; Research Design; Surveys and Questionnaires; Clinical Decisions; Ethics; Methodological Research; Paediatrics; Symptom Management; Symptoms
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
BMJ Support Palliat Care
2022
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<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</a>
Childhood cancer physical symptom burden and parent distress: The role of parent rumination
Pain; Family; Pediatrics; Symptoms; Neoplasms; Distress; Parental Role; Caregiver Burden; Income Level; Rumination (Cognitive Process)
Objective: Symptom burden of children with cancer appears to contribute to parent distress, but the mechanisms of this relationship are relatively unexplored. The current cross-sectional study examined rumination (i.e., repeated focus on negative events and experiences) as a mediator of the associations between parent-report of child (a) pain or (b) nausea, and parent posttraumatic stress symptoms (PTSS); parent-report of child symptoms → parent rumination → parent PTSS. Methods: Caregivers (N = 40, MAge = 38.7 years, female = 87.5%, White = 67.5%) of children with cancer (MAge = 9.4 years) were recruited at a Midwest pediatric cancer center following their child’s diagnosis (MMonths = 2.97 ± 1.98). Parents completed the PedsQL-Cancer Module, the Ruminative Response Scale, and the Impact of Events Scale—Revised. To test the hypothesized indirect effects, 2 separate regression models specifying 5,000 bias-corrected bootstrapping resamples were conducted via Hayes’ PROCESS macro. Family income served as a covariate. Results: Bootstrap regression analysis revealed that parent-report of child pain had an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .37, ß = −.24, 95% CI [−.494, −.033]. Child nausea demonstrated an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .36, ß = −.22, 95% CI [−.428, −.008]. Conclusions: Findings indicate that worse parent perception of child symptoms may lead to elevated parent distress through increased rumination. These results support the role of pediatric psychologists and the interdisciplinary team in alleviating parent distress through clinical management of both child physical symptoms and parent rumination. (PsycInfo Database Record (c) 2021 APA, all rights reserved)
Fisher RS; Perez MN; Basile NL; Pepper M; Gamwell KL; McNall-Knapp R; Carrick Carter J; Mayes S; Chaney JM; Mullins LL
Clinical Practice in Pediatric Psychology
2021
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<a href="http://doi.org/10.1037/cpp0000403" target="_blank" rel="noreferrer noopener">10.1037/cpp0000403</a>
Pediatric Palliative Care in Oncology
pediatrics; review; cancer; oncology; pediatric cancer; symptoms; communication; psychosocial concerns; spiritual considerations
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology-encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases-is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.
Snaman J; McCarthy S; Wiener L; Wolfe J
Journal of Clinical Oncology
2020
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<a href="http://doi.org/10.1200/jco.18.02331" target="_blank" rel="noreferrer noopener">10.1200/jco.18.02331</a>
Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer
cancer; oncology; pediatric cancer; symptoms; patient-reported outcomes
BACKGROUND: Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE: This study evaluated the feasibility of electronic data collection in children with advanced cancer using self-report of symptom frequency, severity, and distress. METHODS: A multisite prospective cohort design was used for this study. Children who were 7 to 18 years of age and English-speaking and had a diagnosis of advanced cancer were included. Symptom frequency, severity, and level of distress were measured every 2 weeks. RESULTS: Forty-six children completed 563 of 622 (91%) administered electronic symptom assessments. Pain, fatigue, nausea, and sleeping difficulties were the most reported symptoms across all assessments and during the last 12 weeks of life. Symptoms with the highest composite scores included pain, fatigue, nausea, and sleeping difficulties. During the last 12 weeks of life, pain, fatigue, diarrhea, and sleeping difficulties had the highest composite scores. When the domains of frequency, severity, and distress were compared between groups, children reported significantly higher frequency of pain and eating difficulty during the last 12 weeks of life. CONCLUSIONS: Electronic data collection is a feasible way to evaluate the constellation of symptoms. Children with advanced cancer continue to experience physical and psychological symptoms, especially during the last 12 weeks of life despite quality care. IMPLICATIONS FOR PRACTICE: Assessment of symptom domains, including frequency, severity, and distress when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.
Montgomery K E; Raybin J L; Ward J; Balian C; Gilger E; Murray P; Li Z
Cancer Nursing
2020
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<a href="http://doi.org/10.1097/ncc.0000000000000721" target="_blank" rel="noreferrer noopener">10.1097/ncc.0000000000000721</a>
Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer
pediatric; childhood cancer; symptoms; advanced cancer
PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this subanalysis were to (1) compare reports of symptom prevalence, symptom burden, and symptom frequency, severity, and distress between groups of children and adolescents and their parents, and (2) describe concordance of symptom reports within individual child-parent dyads. DESIGN AND METHODS: Forty-six children with relapsed, refractory, or progressive cancer and their parents from five pediatric cancer centers prospectively reported symptoms every 2 weeks for up to 61 weeks. The abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology-Memorial Symptom Assessment Scales were used to measure symptom prevalence, frequency, severity, and distress. RESULTS: Children and parents reported pain, fatigue, nausea, and sleeping difficulties as the most frequently occurring symptoms. With the exception of shortness of breath, parents reported symptom prevalence more often than children. The differences in parent reports were statistically significant for fatigue, nausea, lack of appetite, feeling nervous, and sadness. Parents reported higher symptom burden scores compared to children for all individual symptoms except shortness of breath. Children reported higher scores for 19 of 32 possible symptom frequency, severity, and distress ratings. Children's scores were higher for frequency and severity, while parents' scores were higher for distress. Sleeping difficulties, pain, nausea, and diarrhea demonstrated the highest concordance, while feeling nervous, sadness, irritability, and fatigue yielded the lowest concordance between children's and parents' symptom reports. PRACTICE IMPLICATIONS: Eliciting the symptom experience from the child, when appropriate, rather than a parent proxy is best practice given evidence supporting the overestimation of symptom prevalence by parents and underestimation of symptom frequency and severity for some symptoms. When proxy raters must be used, pediatric nurses should educate proxy raters regarding symptom assessment, and assess and tend to symptoms that may not exhibit visual cues. Pediatric nurses should conduct a comprehensive symptom assessment and evaluate beyond the presence of symptoms and include an assessment of frequency, severity, and distress for physical and psychological symptoms to optimize symptom management strategies.
Montgomery K E; Vos K; Raybin J L; Ward J; Balian C; Gilger E A; Li Z
Journal for Specialists in Pediatric Nursing
2020
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<a href="http://doi.org/10.1111/jspn.12316" target="_blank" rel="noreferrer noopener">10.1111/jspn.12316</a>
Delivering Hospital-Based Pediatric Palliative Care: The Symptoms, Interventions, and Outcomes for Children With Cancer in Bangladesh
pediatrics; cancer; symptoms; outcomes; pediatric palliative care; Bangladesh; interventions
PURPOSE: The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services. METHODS: This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics. RESULTS: There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21). CONCLUSION: A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.
Doherty M; Power L; Thabet C
JCO Global Oncology
2020
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<a href="http://doi.org/10.1200/go.20.00076" target="_blank" rel="noreferrer noopener">10.1200/go.20.00076</a>
Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study
children; concerns; outcomes; paediatrics; palliative care; Symptoms
BACKGROUND: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. AIM: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa. SETTING AND PARTICIPANTS: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report. RESULTS: A total of 120 interviews were conducted with children with life-limiting conditions (n = 61; age range: 7-17 years), and where self-report was not possible, caregivers (n = 59) of children (age range: 0-17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns - pain and symptom distress; psycho-social concerns - family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns - worry about death, and loss of ambitions; health care quality - child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age. CONCLUSION: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.
Namisango E; Bristowe K; Murtagh F E; Downing J; Powell R A; Abas M; Lohfeld L; Ali Z; Atieno M; Haufiku D; Guma S; Luyirika E B; Mwangi-Powell F N; Higginson I J; Harding R
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216319900137" target="_blank" rel="noreferrer noopener">10.1177/0269216319900137</a>
Self-injurious behaviour in Cornelia de Lange syndrome: 2. association with environmental events
intervention; symptoms; children; Rehabilitation; Neurology; Education & Educational Research; prevalence; Genetics & Heredity; behavioural phenotype; brachmann-delange syndrome; Cornelia de Lange syndrome; descriptive analysis; functional-analysis; individuals; Neurosciences &; phenomenology; phenotype; prader-willi syndrome; Psychiatry; self-injurious behaviour; social reinforcement; behavioral problems; De Lange syndrome; psychological intervention; environmental conditions; demand denial no contact; environment; self-injury
Background Self-injurious behaviour is commonly seen in Cornelia de Lange syndrome (CdLS). However, there has been limited research into the aetiology of self-injury in CdLS and whether environmental factors influence the behaviour. Methods We observed the self-injury of 27 individuals with CdLS and 17 participants who did not have CdLS matched for age, gender, level of intellectual disability and mobility. Descriptive analyses were used to determine the extent to which environmental events were associated with self-injury. Results Lag sequential analysis of the association between self-injurious behaviour and environmental events revealed no differences between the two groups in terms of either the number or degree of environmental associations. Conclusions The results suggest that the associations between the environment and self-injury in CdLS do not differ from those seen in the broader population of people with intellectual disability. By implication the social reinforcement hypothesis is equally applicable to both groups.
Sloneem J; Arron K; Hall S; Oliver C
Journal of Intellectual Disability Research
2009
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<a href="http://doi.org/10.1111/j.1365-2788.2009.01183.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2009.01183.x</a>
Standardized assessment of behavior and adaptive living skills in juvenile neuronal ceroid lipofuscinosis
symptoms; children; Pediatrics; validity; Neurosciences & Neurology; childhood; epilepsy; scale; batten-disease; impairments; NCL3; NCL6; trajectory; characteristics; behavioral problems; psychiatric problems
We obtained information about the behavioral, psychiatric, and functional status of 26 children (13 males, 13 females) with juvenile neuronal ceroid lipofuscinosis (JNCL; mean age 12y 3mo [SD 3y 4mo]; range 6y 9mo to 18y 8mo). Twenty-five children had visual impairment and 18 were known to have a positive seizure history before enrollment. Parents completed the Child Behavior Checklist, Scales of Independent Behavior Revised, and a structured interview to assess obsessive-compulsive symptoms. Participants exhibited a broad range of behavioral and psychiatric problems, rated as occurring frequently and/or as severe in more than half of the sample. Males and females did not differ with regard to the number of behavioral and psychiatric problems. Children were also limited in their ability to perform activities of daily living, including self-care, hygiene, socialization, and other age-appropriate tasks. Results provide a quantitative baseline for behavioral and psychiatric problems and functional level in JNCL, against which further decline can be measured. Longitudinal assessment of behavioral and psychiatric symptoms and functional abilities is continuing and will provide much-needed data on the natural history of JNCL.
Adams H; De Blieck E A; Mink J W; Marshall F J; Kwon J; Dure L; Rothberg P G; Ramirez-Montealegre D; Pearce D A
Developmental Medicine and Child Neurology
2006
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<a href="http://doi.org/10.1017/s0012162206000570" target="_blank" rel="noreferrer noopener">10.1017/s0012162206000570</a>
Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
palliative care; decision-making; funding; pediatric; family; infrastructure; methodology; research; symptoms; training
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship. OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities. METHODS: The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report. RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education. CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
Feudtner C; Rosenberg A R; Boss R D; Wiener L; Lyon M E; Hinds P S; Bluebond-Langner M; Wolfe J
Journal of Pain and Symptom Management
2019
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.011</a>
Symptoms and problem clusters in cancer and non-cancer patients in specialized palliative care-is there a difference?
Female; Humans; Male; Palliative Care; Neoplasms; symptoms; Aged; Inpatients; Germany; cancer; Cluster Analysis; non-cancer; problems
CONTEXT: In clinical practice, some symptoms and problems frequently occur in combination, which may have consequences for symptom management. OBJECTIVES: Facing a growing number of non-cancer patients in palliative care, this study aimed to differentiate symptom clusters in the non-cancer population from those in cancer patients. METHODS: Inpatient data from the German Hospice and Palliative Care Evaluation between 2007 and 2011 were used for a cluster analysis of a 16-item symptom and problem checklist. An agglomerative hierarchical method was chosen. Coefficients from distance matrix ranging between 0 and 1 were calculated to indicate the interrelationship of clustered symptoms. RESULTS: The analysis identified five clusters in cancer patients: 1) nausea and vomiting (d = 0.000); 2) anxiety, tension, and feeling depressed (d = 0.125); 3) wound care and disorientation/confusion (d = 0.229); 4) organization of care and overburdening of family (d = 0.202); and 5) weakness, tiredness, need for assistance with activities of daily living, and loss of appetite (d = 0.207). Five comparable clusters were identified in non-cancer patients: 1) nausea and vomiting (d = 0.000); 2) anxiety, tension, and feeling depressed (d = 0.166); 3) organization of care and overburdening of family (d = 0.187); 4) weakness and need for assistance with activities of daily living (d = 0.139); and 5) tiredness and loss of appetite (d = 0.182). CONCLUSION: As symptom clusters do not significantly differ between cancer and non-cancer patients, specific frequent symptoms in non-cancer patients should be assessed. Identification of symptom clusters may help to target therapies and focus the use of medications to improve patients' quality of life.
2014-07
Stiel S; Matthies Dominik MK; Seuß D; Walsh D; Lindena G; Ostgathe C
Journal Of Pain And Symptom Management
2014
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.08.018" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.08.018</a>
Proxy assessment of quality of life in pediatric clinical trials: application of the Health Utilities Index 3
symptoms; U.S. Gov't; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Adolescent ChildClinical Trials Female Health Status Humans Leukemia/drug therapy/physiopathology/psychology MalePediatricsProxy Quality of Life/psychology Research Support; domains specific and sensitive to both disease and treatment; P.H.S.Sickness Impact Profile%X BACKGROUND: With increased cure rates; pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease; the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined
2005
Cox CL; Lensing S; Rai SN; Hinds P; Burghen E; Pui CH
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-4714-y" target="_blank" rel="noreferrer">10.1007/s11136-004-4714-y</a>
Evaluating Palliative Care: Bereaved Family Members' Evaluations of Patients' Pain, Anxiety and Depression.
Female; Male; Grief; Palliative Care; symptoms; Pain; Longitudinal Studies; Depression; Anxiety; bereavement; Human; Family Members; Major Depression; psychological symptoms; symptom evaluation
Palliative care surveys often rely on bereaved family members to act as proxies to provide information on patient care at the end of life, after the patient's death. However, when comparing bereaved family members' assessments with those of the patients, agreement is found to be better for symptoms that are more concrete and observable than subjective aspects such as psychological symptoms and pain. To date, little is known about how proxies actually evaluate these types of symptoms. The present study used retrospective verbal protocol analysis to elucidate the thought processes of 30 bereaved relatives during their evaluations of patients' pain, anxiety and depression. The qualitative analysis raised awareness of the difficulties experienced by proxies when discerning the presence of symptoms. It also provided insights into the cues and strategies used when making decisions, contributing to a fuller understanding of how proxies distinguish symptoms. Recommendations are made to improve the design of retrospective palliative care surveys. (PsycINFO Database Record (c) 2007 APA, all rights reserved) (journal abstract)
2004
McPherson CJ; Addington-Hall JM
Journal Of Pain And Symptom Management
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2003.11.010" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2003.11.010</a>
How children die in hospital.
Child; Humans; Death; Palliative Care; symptoms; Euthanasia; Communication; Death; Resuscitation Orders; Longitudinal Studies; Critical Care; Children; Children; Preschool; infant; DNAR; Human; Pediatric intensive care unit; Passive; Hospital Mortality; Infant Mortality; Canuck Place 15 year chart review; dying; Infants; Pediatric intensive care unit
A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236 infants and children who died after hospital admission in Edmonton, Canada between January 1996 and June 1998 met entry criteria. Only children who died after a minimum hospitalization of 24 hours in the case of chronic illness or after a minimum hospitalization of 7 days following an acute event were included. Unanticipated deaths were excluded. Eighty-three percent of children died in intensive care settings (64/77), and 78 % (60/77) were intubated prior to their death. Symptoms were recorded in narrative progress notes. Five of 77 (6%) charts contained specific pain assessment and treatment records. Opioid analgesia was provided in 84 % of all cases (65/77). Six (8 %) patients had do not resuscitate (DNNR) orders preceding final hospital admission and 56/71 (79%) remaining patients had documented discussion resulting in DNR decision during final hospital admission. Median time from DNR to death was < 1 day. Mode of death was withdrawal of therapy in 33/77 (43 %), no cardiopulmonary resuscitation (CPR) in 26/77 (34 %), andfailed CPR in 13/77 (17%). Five children were declared brain dead. In only one case was there evidence in the medical record of the possibility of death being discussed explicitly with the patient. Decision-making regarding end-of-life issues in this pediatric population was deferred very close to the time of death, and only after no remaining curative therapy was available. Acuity of care was very high prior to death. Children are rarely told that they are dying.
2000
McCallum DE; Byrne P; Bruera E
Journal Of Pain And Symptom Management
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(00)00212-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00212-8</a>
The Measurement of Symptoms in Children with Cancer
Child; Female; Humans; Male; symptoms; Pediatrics; Longitudinal Studies; Sleep Stages; Children; adolescent; Pain/etiology; Oncology at EOL; cancer; Cough/etiology; Fatigue/etiology; Eating Disorders/etiology; malignancy; Nausea/etiology; Neoplasms/complications/physiopathology/psychology; symptom distress
The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult version, provided multidimensional information about the symptoms experienced by children with cancer. This instrument was administered to 160 children with cancer aged 10–18 (45 inpatients, 115 outpatients). To confirm the instrument's reliability and validity, additional data about symptoms were collected from both the parents and the medical charts, and retesting was performed on a subgroup of inpatients. Patients could easily complete the scale in a mean of 11 minutes. The analyses supported the reliability and validity of the MSAS 10–18 subscale scores as measures of physical, psychological, and global symptom distress, respectively. Symptom prevalence ranged from 49.7% for lack of energy to 6.3% for problems with urination. The mean (± SD) number of symptoms per inpatient was 12.7 ± 4.9 (range, 4–26), significantly more than the mean 6.5 ± 5.7 (range, 0–28) symptoms per outpatient. Patients who had recently received chemotherapy had significantly more symptoms than patients who had not received chemotherapy for more than 4 months (11.6 ± 6.0 vs. 5.2 ± 5.1), and those patients with solid tumors had significantly more symptoms than patients with either leukemia, lymphoma, or central nervous system malignancies (9.9 ± 7.0 vs. 6.8 ± 5.5 vs. 6.8 ± 5.0 vs. 8.0 ± 6.1). The most common symptoms (prevalence > 35%) were lack of energy, pain, drowsiness, nausea, cough, lack of appetite, and psychological symptoms (feeling sad, feeling nervous, worrying, feeling irritable). Of the symptoms with prevalence rates > 35%, those that caused high distress in more than one-third of patients were feeling sad, pain, nausea, lack of appetite, and feeling irritable. Subscale scores demonstrated large variability in symptom distress and could identify subgroups with high distress. The prevalence, characteristics, and distress associated with physical and psychological symptoms could be quantified in older children with cancer. The data confirm a high prevalence of symptoms overall and the existence of subgroups with high distress associated with one or multiple symptoms. Symptom distress is relatively higher among inpatients, children with solid tumors, and children who are undergoing antineoplastic treatment. Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in clinical chemotherapeutic trials. Symptom epidemiology may also provide a focus for future clinical trials related to symptom management in children with cancer.
2000-05
Collins J J; Byrnes ME; Dunkel IJ; Lapin J; Nadel Traci; Thaler H; Polyak Tanya; Rapkin B; Portenoy RK
Journal Of Pain And Symptom Management
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/S0885-3924(00)00127-5" target="_blank" rel="noreferrer">10.1016/S0885-3924(00)00127-5</a>
A Qualitative Study Of Nurse Observations Of Symptoms In Infants At End-of-life In The Neonatal Intensive Care Unit
End-of-life Care; Infant; Neonatal Intensive Care Unit; Qualitative; Symptoms
Fortney CA; Steward DK
Intensive And Critical Care 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).
10.1016/j.iccn.2016.10.004
"you Don't Know Until You Get There": The Positive And Negative "lived" Experience Of Parenting An Adult Child With 22q11.2 Deletion Syndrome.
22q11.2 Deletion Syndrome; Ipa; Developmental-disabilities; Mothers; Stress; Psychology Clinical; Velo-cardio-facial Syndrome; Trauma; Interpretative Phenomenological Analysis; Velo-cardio-facial Syndrome; Families; Psychological Growth; Psychology; Symptoms; Prevalence; Disorders; Traumatic Distress
Ipa; Velo-cardio-facial Syndrome; 22q11.2 Deletion Syndrome; Traumatic Distress; Psychological Growth
OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations of parents supporting an adult child with 22q11DS, a poorly researched area.
METHOD:
Interpretative phenomenological analysis informed a detailed and open exploration of parenting a child through to adult life with 22q11DS. Using in-depth semistructured interviews, 8 parents (2 male, 6 female) of adult children with 22q11DS were individually interviewed; providing the data set for transcription and thematic analysis.
RESULTS:
Losing "I" Finding "self," overarched 6 subordinate themes that emerged from participants' articulated descriptions of psychological distress and psychological growth. Distress in parenting a child with 22q11DS was experienced through stigma, loss, grief, and guilt. Progressively, stigma undermined independence, friendships, and instinctual judgement. Ill-informed hierarchical structures experienced as layers of obstruction and lack of awareness of the syndrome triggered angry advocacy for their child. Diagnosis brought opposing relief and grief. In time, they came to value their unique "accomplishments," collected on their journey with 22q11DS, and in turn, consciously valued authentic "self" expressed through empathy, humility, gratitude, and pride.
CONCLUSION:
Parental distress through societal, educational, and health care invalidation persisted for decades for all participants. Conversely, distress facilitated psychological growth for redefining "self" and role as parents over time. Building on this phenomenological cameo, future research can educate against the plight of 22q11DS families. It can enlighten health care professionals in buffering against associated stigma, blame, and self-doubt, and in fostering psychological well-being. (PsycINFO Database Record
Goodwin J; McCormack L; Campbell LE
Health Psychology
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).
DOI: 10.1037/hea0000415