Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Infant Newborn; Decision Making; Germany; terminal care; adult; female; human; major clinical study; male; newborn; quality of life; aged; interview; physician; life sustaining treatment; shared decision making; cross-sectional study; medical ethics; middle aged; adolescent; parent; conference paper; decision making; euthanasia; treatment withdrawal; socioeconomics; attitude to health; sociodemographics; comprehension; German (language)
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective: To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, setting, and participants: This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main outcomes and measures: Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results: The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and relevance: Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
Schneider K; Roll S; Tissen-Diabate T; Buhrer C; Garten L
JAMA Network Open
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/10.1001/jamanetworkopen.2023.53264" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.53264</a>
Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
child; adult; article; female; human; male; palliative therapy; Information Dissemination; caregiver; health care personnel; human experiment; health care policy; cross-sectional study; adolescent; Jordan; qualitative research; attitude to health; semi structured interview; pediatric patient; Jordanian; implicit bias; advanced cancer/dm [Disease Management]; doctor patient relationship; medical information; refugee; health care practice; myelodysplastic syndrome; myeloproliferative disorder; reticuloendothelial tumor
Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Method(s): A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Finding(s): Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion(s): The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.Copyright © 2023 Alarjeh, Boufkhed, Alrjoub, Guo, Yurdusen, Ahmed, Abdal-Rahman, Alajarmeh, Alnassan, Al-Awady, Kutluk, Harding and Shamieh.
Alarjeh G; Boufkhed S; Alrjoub W; Guo P; Yurdusen S; Ahmed F; Abdal-Rahman M; Alajarmeh S; Alnassan A; Al-Awady S; Kutluk T; Harding R; Shamieh O
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.2023.1118992" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1118992</a>
What constitutes meaningful engagement for patients and families as partners on research teams?
Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.
Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C
Journal of Health Services Research & Policy
2018
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<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener">10.1177/1355819618762960</a>
Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; difficult situation; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/psychology; Poland; Preschool; Psychological
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.
Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P
Annals of Agricultural and Environmental Medicine
2020
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<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</a>
Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
Newborn Infant; Preschool Child; Academic Medical Centers; Adolescent; Attitude to Health; Child; Chronic Disease; Continuity of Patient Care; Health Knowledge, Attitudes, Practice; Health Services Accessibility; Infant; Interviews as Topic; Male; Parents; Patient Readmission; Qualitative Research
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent perspectives on circumstances surrounding 30-day readmissions for CMC. METHODS: We conducted 20 semistructured interviews with parents of CMC experiencing an unplanned 30-day readmission at 1 academic medical center between December 2016 and January 2018, asking about topics such as previous discharge experiences, medical services and resources, and home environment and social support. Interviews were recorded, professionally transcribed, and analyzed thematically by using a modified grounded theory approach. RESULTS: Children ranged in age from 0 to 15 years, with neurologic complex chronic conditions being predominant (35%). Although the majority of parents did not identify any factors that they perceived to have contributed to readmission, themes emerged regarding challenges associated with chronicity of care and transitions of care that might influence readmissions, including frequency of hospital use, symptom confusion, lack of inpatient continuity, resources needed but not received, and difficulty filling prescriptions. CONCLUSIONS: Parents identified multiple challenges associated with chronicity of medical management and transitions of care for CMC. Future interventions aiming to improve continuity and communication between admissions, ensure that home services are provided when applicable and prescriptions are filled, and provide comprehensive support for families in both the short- and long-term may help improve patient and family experiences while potentially decreasing readmissions.
Leary JC; Krcmar R; Yoon GH; Freund KM; LeClair AM
Hospital Pediatrics
2020
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<a href="http://doi.org/10.1542/hpeds.2019-0185" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0185</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
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/ppe.12590" target="_blank" rel="noreferrer noopener">10.1111/ppe.12590</a>
Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; Chronic Disease/*psychology; difficult situation; Disabled Persons/psychology; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/*psychology; Poland; Preschool; Psychological
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.
Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P
Annals of Agricultural and Environmental Medicine
2020
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<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</a>
Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
Humans; Adolescent; Child; Female; Male; Middle Aged; palliative care; Attitude to Death; Preschool; Adult; Attitude to Health; Spirituality; Practice Guidelines as Topic; Pediatrics/*standards; Advance Care Planning/*standards; United Kingdom; Family/*psychology; paediatric practice; Palliative Care/*psychology/*standards
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals.
Clayton M; Aldridge J
Archives of Disease in Childhood - Education and Practice
2019
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<a href="http://doi.org/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314525</a>
Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
adolescent; adult; article; female; human; male; palliative therapy; clinical article; palliative care; health care personnel; priority journal; caregiver; parent; perception; communication; semi structured interview; adolescence; attitude to health; cystic fibrosis; health education; lung fibrosis; patient education; qualitative analysis
Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, caregivers, and CF care providers may lack knowledge about palliative care and perceive barriers to integrated care. Objective(s): To: 1) explore knowledge and perceptions of palliative care among patients with CF, caregivers, and CF care providers; 2) solicit opinions about incorporating palliative care into routine CF care; and 3) solicit recommendations for CF-specific palliative care education for patients and caregivers. Method(s): We conducted semi-structured interviews with adult patients with CF, parents of adolescents with CF, and CF care providers to assess knowledge and perceptions of palliative care. Discussion included suggestions for palliative care education and integration into CF care. The sample was characterized using summary statistics. Key themes were identified using qualitative content analysis. Result(s): Ten patients with CF, ten parents, and eight CF care providers participated. Many had minimal knowledge of palliative care and endorsed the association with end of life as a barrier to palliative care, but after learning more about palliative care, thought it could be helpful, and should be introduced earlier. Conclusion(s): In this single center study, many patients with CF, caregivers, and providers lacked knowledge about palliative care. These findings warrant replication in a larger, multisite study to inform palliative care educational interventions as a step toward consistent integration of palliative care into routine CF care. Copyright � 2018 Wiley Periodicals, Inc.
Dellon E P; Helms S W; Hailey C E; Shay R; Carney S D; Schmidt H J; Brown D E; Prieur M G
Pediatric Pulmonology
2019
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<a href="http://doi.org/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">10.1002/ppul.24073</a>
Individualised advance care planning in children with life-limiting conditions
Child Health Services/og [Organization & Administration]; Palliative Care/og [Organization & Administration]; Netherlands; Palliative Care/st [Standards]; Quality of Health Care; Male; Practice Guidelines as Topic; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; Child; Humans; Palliative Care/px [Psychology]; Female; Attitude to Health; Pilot Projects; Advance Care Planning/st [Standards]; Child Health Services/st [Standards]; Evidence-Based Medicine/mt [Methods]; Patient Satisfaction/sn [Statistics & Numerical Data]
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires. METHODS: A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness. RESULTS: The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness. CONCLUSION: We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients' and parents' preferences and desires are included next to the recommendations of the evidence-based guideline 'Palliative care for children'.
Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group
Archives of Disease in Childhood
2018
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<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-312731</a>
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Neoplasms/psychology; Medical Oncology; Middle Aged; Male; Disease Progression; dying; Child; Humans; Adult; Qualitative Research; Pediatrics; Adolescent; Parents; palliative care; Female; Attitude to Death; Attitude to Health; Narration; Switzerland; narrative; Leukemia/psychology; paediatric oncology; stories; lived experience; Oncologists; Bone Neoplasms/psychology; Sarcoma/psychology; Soft Tissue Neoplasms/psychology
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.
De CE; Elger BS; Wangmo T
European Journal of Cancer Care
2017
<a href="http://doi.org/%2010.1111/ecc.12651" target="_blank" rel="noreferrer noopener">10.1111/ecc.12651</a>
Awareness of pediatric palliative care among health care workers
clinical competence; education; palliative therapy; pediatrics; attitude to health; child; health care personnel; human; psychology; questionnaire; Ukraine
Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare workers providing medical services to children.Materials and methods: It was carried out a survey at health facilities of Ivano-Frankivsk region, which provided medical care for children. It was interviewed 578 healthcare workers, among them were generally practitioners - 131, primary care pediatricians - 52, pediatricians-specialists - 36, health care managers - 78, nurses - 281. The half of the respondents (57.2%) had work experience more than 20 years.Results: It was established that every fourth respondent (25.3%) did not know what is mean of pediatric palliative care. At the same time, the main object of its delivery was considered to be patients with cancer (71.5%), and not with incurable chronic diseases (54.8%). Only 59.7% of respondents knew that palliative care (PC) should begin with the diagnosis of an incurable disease, and not at the end of life, as well as half (52.6%) of them knew that the relatives of seriously ill children are object of PC. The majority of respondents recognized the lack of their knowledge of pediatric palliative care (85.8%). All answers differed depending on the position of respondents (p%#60;0.05). However, regardless of this, almost all respondents (94.5%) expressed their desire to receive proper knowledge of pediatric palliative care.Conclusion: It was established lack of knowledge on pediatric palliative care among medical workers served children. The majority of respondents recognized the lack and need of knowledge on pediatric palliative care. Overall level of knowledge among healthcare workers about palliative care was poor, and it is necessary to improve it.
Detsyk OZ; Zolotarova ZM; Stovban IV; Melnyk RM
Wiadomosci lekarskie
2018
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<a href="http://doi.org/https://europepmc.org/abstract/med/29783228" target="_blank" rel="noreferrer noopener">https://europepmc.org/abstract/med/29783228</a>
Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study
pediatrics; Attitude to Health; Adolescent; Adult; Attitude to Death; Child; Cohort Studies; Female; Health Surveys; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Only Child; Parents/ psychology; Pediatrics; Prevalence; Quality of Life/ psychology; Terminal Care/ psychology; Young Adult; decision-making; problems; Parent-Child Relations; Hope; Preschool; serious illness; child; female; male; young adult; adult; Child Health/statistics & numerical data; Critical Illness/epidemiology/ psychology; hopes; parental concordance; Philadelphia/epidemiology
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time. METHODS: Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately. RESULTS: The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance. CONCLUSION: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
Hill DL; Nathanson PG; Fenderson RM; Carroll KW; Feudtner C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2016.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.11.007</a>
Pediatric advance directives: parents' knowledge, experience, and preferences
Child; Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Attitude to Health; Logistic Models; Prospective Studies; Health Services Needs and Demand; Socioeconomic Factors; end of life; adolescent; Preschool; infant; advance care planning; DNAR; Parents; Parents/px [Psychology]; Advance Directives; Hispanic Americans/sn [Statistics & Numerical Data]; Advance Directives/px [Psychology]; decision making; Attitude; Chronic disease; special-needs children
OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. RESULTS: Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. CONCLUSIONS: The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care.
2014-08
Liberman DB; Pham PK; Nager AL
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">10.1542/peds.2013-3124</a>
Stress, coping, and hope
Humans; Attitude to Health; Uncertainty; Stress; Adaptation; Psychological; Neoplasms/psychology; Psychological/psychology
Hope is discussed in many literatures and from many perspectives. In this essay hope is discussed from the vantage of psychology and stress and coping theory. Hope and psychological stress share a number of formal properties: both are contextual, meaning-based, and dynamic, and both affect well-being in difficult circumstances. Two assumptions underlie this essay: (1) hope is essential for people who are coping with serious and prolonged psychological stress; and (2) hope is not a perpetually self-renewing resource; it has peaks and valleys and is at times absent altogether. The relationship between hope and coping is dynamic and reciprocal; each in turn supports and is supported by the other. This relationship is illustrated with two adaptive tasks common across situations that threaten physical or psychological well-being-managing uncertainty and coping with a changing reality. The essay describes ways in which coping fosters hope when it is at low ebb as well as ways in which hope fosters and sustains coping over the long term.
2010
Folkman S
Psycho-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).
Journal Article
<a href="http://doi.org/10.1002/pon.1836" target="_blank" rel="noreferrer">10.1002/pon.1836</a>
Long term posttraumatic growth after breast cancer: prevalence, predictors and relationships with psychological health
Cross-Sectional Studies; Female; Humans; Adult; Prevalence; Attitude to Health; Follow-Up Studies; Aged; Middle Aged; Predictive Value of Tests; Adaptation; Psychological; retrospective studies; Post-Traumatic/diagnosis/epidemiology/psychology; Stress Disorders; Disease-Free Survival; Breast Neoplasms/epidemiology/psychology; Quality of Life/psychology
This study evaluated the prevalence and predictors of long term posttraumatic growth (PTG) after breast cancer, and relationships of PTG with psychological health in a random sample of 307 currently disease-free women 5-15 years after diagnosis. This cross-sectional study reveals long term posttraumatic growth scores comparable to those found in shorter term studies. Prevalence of a better appreciation of life is especially noteworthy. With the exception of perceived current sequelae of disease associated in a somewhat curvilinear fashion with PTG, demographic and medical variables are poor predictors of the issue. On the contrary, dispositional positive affectivity and adaptative coping of positive, active, relational, religious and to some extent denial coping have a strong effect on growth. Finally, PTG is slightly associated with mental quality of life and happiness. Findings are discussed in the light of posttraumatic growth theory.
2010
Lelorain S; Bonnaud-Antignac A; Florin A
Journal Of Clinical Psychology In Medical Settings
2010
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Journal Article
<a href="http://doi.org/10.1007/s10880-009-9183-6" target="_blank" rel="noreferrer">10.1007/s10880-009-9183-6</a>
Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue
adolescent; Female; Humans; Male; Young Adult; Pain; Adult; Attitude to Health; Emotions; Questionnaires; Chronic disease; Aged; Middle Aged; Comorbidity; Self Efficacy; Fatigue; Problem Solving; Severity of Illness Index; Activities of Daily Living; Regression Analysis; Depressive Disorder; Adaptation; Psychological; Stress Disorders; Chronic; Fatigue Syndrome; Fibromyalgia; Major; Post-Traumatic
OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis. METHODS: We identified 138 consecutive clinic patients who met criteria for CWP and chronic fatigue. We collected demographic and clinical characteristics, as well as measures of emotion-focused and problem-focused coping styles, fatigue-related self-efficacy and self-reported general health. Psychiatric diagnoses were determined with a structured interview. Short Form-36 subscales of pain-related and fatigue-related functioning were the dependent variables in ordinal multiple regression analyses to identify the best-fit model for each. RESULTS: In the final model for pain, increased functional impairment was associated with increased emotion-focused coping as well as less education, lower general health scores and higher body mass index. Conversely, in the final model for fatigue, increased functional impairment was significantly associated with less emotion-focused coping, lower general health scores and lower self-efficacy. CONCLUSIONS: The unexpected finding that emotion-focused coping was associated differently with chronic pain and fatigue among patients who experience both symptoms is discussed in the context of the research on the effects of self-efficacy and possible treatment approaches.
2009-08
Smith WR; Strachan ED; Buchwald D
General Hospital Psychiatry
2009
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Journal Article
<a href="http://doi.org/10.1016/j.genhosppsych.2009.03.012" target="_blank" rel="noreferrer">10.1016/j.genhosppsych.2009.03.012</a>
Missed opportunities-adolescents with a chronic condition (insulin-dependent diabetes mellitus) describe their cigarette-smoking trajectories and consider health risks
Female; Humans; Male; Adult; Attitude to Health; Parents; Interviews as Topic; Peer Group; adolescent; Adolescent Transitions; Chronic disease; Adolescent Behavior/psychology; Diabetes Mellitus; Type 1/psychology; Smoking Cessation/psychology; Smoking/adverse effects/prevention & control/psychology; Tobacco Use Disorder/psychology
AIM: To enhance our knowledge on why adolescents with a chronic condition (insulin-dependent diabetes mellitus, IDDM) choose to smoke despite possible awareness of health risks. METHODS: Twelve patients aged 15-20 with IDDM who smoked cigarettes volunteered to participate in qualitative interviews. The results were analyzed with content analysis according to Miles and Huberman 1994. RESULTS: One set confirmed what is earlier known on cigarette smoking among adolescents, such as plain exploring, needs to conform with group norms, identity needs and denial of risks. Other themes gave new insights. One was the emotional attitudes-or lack of emotions-expressed by important others, which exerted strong influences on the smoking trajectories. These emotions affected both initiation and motivation for quitting cigarette smoking and seemed crucial as means of meaningful communications concerning smoking. One theme was a flow path of cigarette smoking, which demonstrated opportunities for secondary prevention. Finally, developmental reasons for smoking and motivation for quitting could be described. CONCLUSIONS: There are several windows of opportunities to lower the risk of adolescents with IDDM and other chronic conditions from becoming and remaining smokers, as reported by young people themselves.
2007
Regber S; Kelly KB
Acta Paediatrica
2007
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Journal Article
<a href="http://doi.org/10.1111/j.1651-2227.2007.00566.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2007.00566.x</a>
Predictors of good adherence of adolescents with diabetes (insulin-dependent diabetes mellitus)
Female; Humans; Male; Physician-Patient Relations; Attitude to Health; Logistic Models; Questionnaires; Nurse-Patient Relations; adolescent; Adolescent Transitions; Chronic disease; social support; Adolescent Behavior/psychology; Diabetes Mellitus; Patient Compliance/psychology; Self Care/psychology; Type 1/psychology/therapy
OBJECTIVES: The purpose of this study was to identify the factors that predict good adherence to health regimens by adolescents with diabetes (insulin-dependent diabetes mellitus). METHODS: Altogether, 300 individuals aged 13-17 years were randomly selected from the Finnish Social Insurance Institution's register. Ninety-seven per cent (N=289) of the selected adolescents returned the questionnaire. The data were analysed using the SPSS (Statistical Package for Social Sciences) for Windows software package. Logistic regression was used to find the factors that predict good adherence to health regimens. RESULTS: About one-fifth (19%) of the respondents with diabetes felt that they complied fully with the health regimens, while 75% placed themselves in the category of satisfactory adherence, and the remaining 6% reported poor adherence. The most powerful predictor was the threat to mental wellbeing. The likelihood that adolescents who felt the disease to be a threat to their mental wellbeing would comply with health regimens was 7.68-fold as compared to those who did not regard the disease as a threat to their mental wellbeing. The next most powerful predictor was support from physician. The support from nurses, and the motivation, energy and willpower to take care of themselves and the threat to physical wellbeing, also predicted good adherence. The logistic regression model explained 82% of the variance, and the model predicted correctly 88% of the adolescents with good adherence. DISCUSSION: This paper shows that adolescents with diabetes show quite good adherence. It also indicates the factors that predict good adherence to health regimens. To improve adherence, these factors should be given special attention in the care of adolescents.
2007
Kyngas HA
Chronic Illness
2007
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Journal Article
<a href="http://doi.org/10.1177/1742395307079191" target="_blank" rel="noreferrer">10.1177/1742395307079191</a>
Hope and prognostic disclosure
Child; Female; Humans; Male; Physician-Patient Relations; Adult; Attitude to Health; Parent-Child Relations; Prognosis; Truth Disclosure; Multivariate Analysis; quality of life; adolescent; Preschool; infant
PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer (overall response rate, 70%) in their first year of treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA), and we surveyed the children's physicians. We evaluated relationships between parental recall of prognostic disclosure by the physician and possible outcomes, including hope, trust, and emotional distress. Our main outcome was assessed by asking parents how often the way the child's oncologist communicated with them about the children's cancers made them feel hopeful. RESULTS: Nearly half of parents reported that physician communication always made them feel hopeful. Parents who reported receiving a greater number of elements of prognostic disclosure were more likely to report communication-related hope (odds ratio [OR], 1.77 per element of disclosure; P = .001), even when the likelihood of a cure was low (OR, 5.98 per element of disclosure with likelihood of a cure < 25%; P = .03). In a multivariable model, parents were more likely to report that physician communication always made them feel hopeful when they also reported receipt of more elements of prognostic disclosure (OR, 1.60; P = .03) and high-quality communication (OR, 6.58; P < .0001). Communication-related hope was inversely associated with the child's likelihood of cure (OR, 0.65; P = .005). CONCLUSION: Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.
2007
Mack JW; Wolfe J; Cook EF; Grier HE; Cleary PD; Weeks JC
Journal Of Clinical Oncology
2007
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Journal Article
<a href="http://doi.org/10.1200/JCO.2007.12.6110" target="_blank" rel="noreferrer">10.1200/JCO.2007.12.6110</a>
The reflections you get': an exploration of body image and cachexia.
Female; Humans; Male; England; Attitude to Health; Interpersonal Relations; Prognosis; Questionnaires; Aged; Middle Aged; Health Services Needs and Demand; Qualitative Research; Social Isolation; Holistic Health; Spirituality; Nursing Methodology Research; Body Image; 80 and over; Adaptation; Psychological; social support; Social Behavior; Terminally Ill/px [Psychology]; Narration; Palliative Care/mt [Methods]; Cachexia/et [Etiology]; Neoplasms/co [Complications]; Quality of Life/px [Psychology]; Palliative Care/px [Psychology]; Cachexia/px [Psychology]; N
BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people with advanced cancer, their emotions, relationships and social functioning. DESIGN: qualitative study using face-to-face in-depth interviews of a conversational style. Rich narrative data analysed by thematic content analysis. PARTICIPANTS: 12 participants recruited from two community palliative care teams in south east England. RESULTS: altered body image impacts on other aspects of embodiment: the emotions, spirituality, relationships and social functioning. Lives were restricted and isolated, which was compounded by emotional distancing by carers and health care professionals. Participants discussed their repeated attempts to re-adapt to disruptions of self caused by an altered body image. CONCLUSIONS: the key study implications focus on the need for (i) improved holistic care and support, and advice; (ii) training and awareness raising of care professionals; (iii) further research on the lived experiences of the condition and the development of effective measures of cachexia.
2007
Hinsley R; Hughes R
International Journal Of Palliative Nursing
2007
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2007.13.2.23068" target="_blank" rel="noreferrer">10.12968/ijpn.2007.13.2.23068</a>
Disease trajectories and ACT/RCPCH categories in paediatric palliative care
Child; Female; Humans; Male; Palliative Care; Family; Attitude to Health; Interviews as Topic; Professional-Family Relations; Disease Progression; caregivers; Qualitative Research; Focus Groups; Wales; Caregivers/psychology; Family/psychology; PEDI Study; Palliative Care/psychology; Attitude to Health; Disease Progression
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12
Wood F; Simpson S; Barnes E; Hain R
Palliative Medicine
2010
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Journal Article
Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input
Child; Humans; Terminal Care; Attitude to Health; Questionnaires; Professional-Family Relations; Patient-Centered Care; Qualitative Research; Nurse's Role; Pediatric Nursing; Program Development; Needs Assessment; Patient Selection; Helping Behavior; Adaptation; Psychological; PedPal Lit; decision making; Parents/psychology; Neoplasms; social support; Quality of Life/psychology; Focus Groups/methods; Focus Groups/utilization; Morale; Nursing Methodology; Oncologic Nursing
The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.
2006
Tomlinson D; Capra M; Gammon J; Volpe J; Barrera M; Hinds PS; Bouffet E; Geenberg ML; Baruchel S; Llewellyn-Thomas HA; Sung L
European Journal Of Oncology Nursing
2006
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Journal Article
<a href="http://doi.org/10.1016/j.ejon.2005.11.003" target="_blank" rel="noreferrer">10.1016/j.ejon.2005.11.003</a>
Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up
Child; Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Adult; Attitude to Health; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Severity of Illness Index; Risk Factors; Nursing Methodology Research; Preschool; infant; Mothers/psychology; retrospective studies; ICU Decision Making; social support; Psychiatric Status Rating Scales; Stress Disorders; Acute/diagnosis/prevention & control/psychology; Aftercare/organization & administration/psychology; Hospitalized; Mass Screening; Pediatric/organization & administration; Traumatic
The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff. Thirty-four mothers completed the Parental Stressor Scale:PICU, the General Health Questionnaire (GHQ-28) and the Impact of Event Scale, 8 months after discharge. In total 18/34 (53%) scored > or =5 on the GHQ-28 and 6/32 (18%) of the sample scored in the severe range (>35) on the Impact of Event Scale. Distress was associated with retrospective reports of stress experienced during admission (p < 0.001) but not with other demographic or medical variables. Mothers who talked about their feelings at the time of the admission had lower posttraumatic stress scores at 8 months (p = 0.02) and 25/34 (74%) mothers would have appreciated the offer of a follow up appointment. Screening for distress during admission with the Parental Stressor Scale:PICU may identify those mothers in greatest need of psychological support. Mothers' recollections of the Paediatric Intensive Care Unit: Associations with psychopathology and views on follow up.
2006
Colville GA; Gracey D
Intensive and Critical Care Nursing
2006
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Journal Article
<a href="http://doi.org/10.1016/j.iccn.2005.04.002" target="_blank" rel="noreferrer">10.1016/j.iccn.2005.04.002</a>
Coping with chronic pain
Female; Humans; Male; Pain; Adult; Attitude to Health; Emotions; Questionnaires; Chronic disease; Aged; Middle Aged; Self Concept; social support; Nurse's Role; Problem Solving; Multivariate Analysis; Depression; Nursing Methodology Research; Predictive Value of Tests; Regression Analysis; Stress; Adaptation; Psychological; Models; Psychiatric Status Rating Scales; Norway
Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena and coping strategies related to chronic pain. Chronic pain often necessitates new coping skills. An understanding of the concept of coping and how the patients cope is therefore crucial for the success of rehabilitation. The current study examined how coping, as measured by the Ways of Coping Checklist, was related to medical variables, depression measured by the Short Zung depression rating scale, and Rosenberg's self-esteem scale. The study sample consisted of 88 people who were recruited for a multidisciplinary pain management programme. Data were collected as part of a routine pre-treatment evaluation. Results indicated that the most predominant stressors were related to family life and social activities. We also recognised on the one hand, appraising pain as a challenge was predictive of problem-focused coping, while on the other hand, appraising pain as a threat, experiencing depression, and reduced self-esteem were predictive of emotion-focused coping. Clinical implications of these results in nursing are discussed.
2005-03
Dysvik Elin; Natvig GK; Eikeland Ole-Johan; Lindstrøm TC
International Journal Of Nursing Studies
2005
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Journal Article
<a href="http://doi.org/10.1016/j.ijnurstu.2004.06.009" target="_blank" rel="noreferrer">10.1016/j.ijnurstu.2004.06.009</a>
Parent resuscitation preferences for young people with severe developmental disabilities.
Child; Female; Humans; Male; Adult; Attitude to Health; Choice Behavior; Massachusetts; Program Evaluation; Analysis of Variance; Organizational Policy; adolescent; Preschool; retrospective studies; Parents/education/psychology; DNAR; Attitude to Health; Developmental Disabilities/th [Therapy]; Health Education/og [Organization & Administration]; Parents; Resuscitation Orders/px [Psychology]; Advance Care Planning/og [Organization & Administration]; Advance Care Planning/organization & administration; Consent Forms; Developmental Disabilities/co [Complications]; Developmental Disabilities/complications/therapy; documentation; Health Education/organization & administration; Parents/ed [Education]; Parents/px [Psychology]; Resuscitation Orders/psychology; Skilled Nursing Facilities/og [Organization & Administration]; Skilled Nursing Facilities/organization & administration; Treatment Refusal/psychology; Treatment Refusal/px [Psychology]
OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not., SETTING: Pediatric skilled nursing facility in Massachusetts., PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years., MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR., RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053)., CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.
2006
Friedman SL
Journal Of The American Medical Directors Association
2006
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Journal Article
<a href="http://doi.org/10.1016/j.jamda.2005.06.004" target="_blank" rel="noreferrer">10.1016/j.jamda.2005.06.004</a>
Transition: a conceptual analysis in the context of siblings of children with cancer
adolescent; Child; Female; Humans; bereavement; Neoplasms; Adolescent Psychology; Attitude to Health; Siblings; Oncology Nursing; Nurse's Role; Pediatric Nursing; Child Psychology; Life Change Events; Sibling Relations; Nursing Methodology Research; Nursing Evaluation Research; Family Health; Adaptation; Psychological; Models; Human Development; sibling bereavement; Nursing; health promotion
Transition has been described by many disciplines. However, the concept of transition has yet to be applied to the sibling experience of childhood cancer. Understanding the transitions that siblings encounter is important because it will offer nurses new possibilities for enhancing siblings' outcomes. Accordingly, the purpose of this article is to provide a conceptual framework that will assist nurses in their efforts to promote healthy transitions in siblings of children with cancer. The method of concept analysis developed by Walker and Avant [Walker, L., & Avant, K. (1995). Concept analysis. In Strategies for theory construction in nursing (3rd ed.) (pp. 37-54). Norwalk, CT: Appleton and Lane.] is employed. The result is a definition of transition that is relevant and useful for research and clinical practice in pediatric oncology.
2006-08
Wilkins KL; Woodgate RL
Journal Of Pediatric Nursing
2006
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Journal Article
<a href="http://doi.org/10.1016/j.pedn.2006.01.090" target="_blank" rel="noreferrer">10.1016/j.pedn.2006.01.090</a>
Dealing with missing data in a multi-question depression scale: a comparison of imputation methods
Female; Humans; Male; Attitude to Health; Questionnaires; Research Design; Hospitals; Reproducibility of Results; Regression Analysis; Alberta; Teaching; Statistical; Data Interpretation; Psychiatric Status Rating Scales; Self Assessment (Psychology); Surgical Procedures; Depression/classification/diagnosis; Operative/psychology; Outcome Assessment (Health Care)/methods/statistics & numerical data; Preoperative Care; Psychometrics/methods
BACKGROUND: Missing data present a challenge to many research projects. The problem is often pronounced in studies utilizing self-report scales, and literature addressing different strategies for dealing with missing data in such circumstances is scarce. The objective of this study was to compare six different imputation techniques for dealing with missing data in the Zung Self-reported Depression scale (SDS). METHODS: 1580 participants from a surgical outcomes study completed the SDS. The SDS is a 20 question scale that respondents complete by circling a value of 1 to 4 for each question. The sum of the responses is calculated and respondents are classified as exhibiting depressive symptoms when their total score is over 40. Missing values were simulated by randomly selecting questions whose values were then deleted (a missing completely at random simulation). Additionally, a missing at random and missing not at random simulation were completed. Six imputation methods were then considered; 1) multiple imputation, 2) single regression, 3) individual mean, 4) overall mean, 5) participant's preceding response, and 6) random selection of a value from 1 to 4. For each method, the imputed mean SDS score and standard deviation were compared to the population statistics. The Spearman correlation coefficient, percent misclassified and the Kappa statistic were also calculated. RESULTS: When 10% of values are missing, all the imputation methods except random selection produce Kappa statistics greater than 0.80 indicating 'near perfect' agreement. MI produces the most valid imputed values with a high Kappa statistic (0.89), although both single regression and individual mean imputation also produced favorable results. As the percent of missing information increased to 30%, or when unbalanced missing data were introduced, MI maintained a high Kappa statistic. The individual mean and single regression method produced Kappas in the 'substantial agreement' range (0.76 and 0.74 respectively). CONCLUSION: Multiple imputation is the most accurate method for dealing with missing data in most of the missind data scenarios we assessed for the SDS. Imputing the individual's mean is also an appropriate and simple method for dealing with missing data that may be more interpretable to the majority of medical readers. Researchers should consider conducting methodological assessments such as this one when confronted with missing data. The optimal method should balance validity, ease of interpretability for readers, and analysis expertise of the research team.
2006
Shrive FM; Stuart H; Quan H; Ghali WA
Bmc Medical Research Methodology
2006
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Journal Article
<a href="http://doi.org/10.1186/1471-2288-6-57" target="_blank" rel="noreferrer">10.1186/1471-2288-6-57</a>
Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff
Child; Humans; Pain Measurement; Great Britain; Attitude to Health; Attitude of Health Personnel; Questionnaires; Pediatric Nursing; Child Psychology; Fear; Nursing Methodology Research; Nonverbal Communication; Crying; Child Behavior; Stress; Adaptation; Psychological; Charting the Territory; Causality; Vomiting/etiology/prevention & control; Hospice Care/psychology; Anxiety/etiology; Medical Staff/psychology; Nursing Staff/psychology; Occupational Diseases/etiology; Psychological/diagnosis/etiology/prevention & control; Seizures/etiology/prevention & control; Spasm/etiology/prevention & control
BACKGROUND: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer. METHOD: A postal questionnaire was sent to children's hospice staff who were asked to identify symptoms experienced by life-limited children which caused them anxiety. RESULTS: Staff in 23 hospices were sent questionnaires. Twenty-eight questionnaires were returned from 10 doctors and 18 nurses. Just under half of the hospices contacted were represented. The staff were very experienced but had significant anxieties about treating some of their patients. AIMS: This study aimed to identify the symptoms which cause anxiety to staff working in children's hospices. More than 70% of all staff groups felt that identifying the symptom correctly caused more anxiety than treating identified symptoms. For doctors the top five symptom problems were, seizure control, spasms, pain assessment, unidentified distress and vomiting. For nurses the main concerns were the non-verbal child in distress, psychiatric or psychological problems, assessing pain, seizures, pain management, vomiting. CONCLUSIONS: Doctors and nurses perceive seizures, pain management, and vomiting as the most troublesome symptoms for children with life-limiting conditions. Further research is needed into symptom management in this area.
2006
McCluggage HL
International Journal Of Palliative Nursing
2006
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2006.12.6.21450" target="_blank" rel="noreferrer">10.12968/ijpn.2006.12.6.21450</a>
Health care transition: youth, family, and provider perspectives
Female; Humans; Male; Physician-Patient Relations; Family; Adult; Attitude to Health; Attitude of Health Personnel; Interdisciplinary Communication; Disabled Persons; Health Services Research; Focus Groups; Continuity of Patient Care; Patient Care Planning; Family Practice; adolescent; Adolescent Transitions; Health; Insurance; Chronic Disease/therapy; Adolescent Health Services/organization & administration; Delivery of Health Care/organization & administration; Pediatrics/organization & administration; Adolescent Medicine/organization & administration; CHIR Best Practices; Insurance Coverage
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
2005
Reiss JG; Gibson RW; Walker LR
Pediatrics
2005
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Journal Article
<a href="http://doi.org/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">10.1542/peds.2004-1321</a>
The art of healing and knowing in cancer and palliative care
Child; Humans; Grief; Adult; Self Concept; Communication; Social Isolation; Child Psychology; Nurse-Patient Relations; Psychological; PedPal Lit; social support; Anger; knowledge; Attitude to Death; Morale; Oncologic Nursing; Adaptation; Attitude to Health; Nurse's Role/psychology; Symbolism; Art Therapy/methods; Color; Palliative Care/methods/psychology; Unconscious (Psychology)
This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child's reaction to his mother's illness showing his distress through painting. Artwork from children are included in the text to help demonstrate some feelings and reactions to illness. Some themes, which emerged from examination of the artwork, were isolation, anger, and lack of hope. Carers became overtly aware of the distress people were experiencing through artwork. Art depicted graphically what people were feeling and can, therefore, be considered a valuable tool in the communication process. It is useful especially when individuals are unable to express their feelings verbally. Recommendations focus on how artwork may be implemented in hospice and hospital settings and on how the environment may be made safe psychologically. The importance of the art process rather than on artistic skill is discussed. The potential for developing creativity at the end of life, when self-esteem may be low is explored.
2006
Devlin B
International Journal Of Palliative Nursing
2006
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
Pain in pediatric oncology: do the experiences of children and parents differ from those of nurses and physicians?
Child; Humans; Pain Measurement; Adult; Attitude to Health; Non-U.S. Gov't; Research Support; PedPal Lit; Comparative Study; Parents/psychology; Physicians/psychology; Nurses/psychology; Attitude of Health Personnel; Neoplasms/complications/psychology; Pain/etiology/prevention & control/psychology
Diagnosis and treatment of pain are central components in the care of children with cancer. The aim of the present study was to compare the viewpoints of children and parents with those of professionals, on different aspects of pain in children with cancer. Information was collected through questionnaires and interviews. In particular, we focused on the extent and causes of pain, strategies to reduce procedural pain, pain evaluation, and attitudes to pain treatment. We found that both families and professionals shared the opinion that pain was a common symptom during different phases of cancer treatment but, surprisingly, professionals regarded it as more frequent than families. The groups agreed that treatment related pain is the most critical problem, followed by procedure and cancer related pain. Concerning strategies to decrease procedural pain, there was a high concordance in views between groups. Nurses and physicians more often claimed that failing pain treatment was associated with psychological factors such as high levels of anxiety in parents and children, loneliness, and lack of preparation. The self-report, according to both parents and professionals, is a feasible procedure even in young children from 4 years of age. Both groups asserted that parents were better in ascertaining the extent of their child's pain. In conclusion, although the families and professionals in this study have many comparable views concerning pain in children with cancer, divergences also exist. To acquire a more accurate picture of the situation we must focus on the views of the children first, and then those of parents and professionals. A tendency to overestimate the problems was observed in professionals. Hopefully this reflects a keen awareness of the current situation.
2006
Ljungman G; Kreuger A; Gordh T; Sorensen S
Upsala Journal of Medical Sciences
2006
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
Pediatric palliative care: the time has come.
Child; Humans; Attitude to Health; Professional-Family Relations; Communication; Child Psychology; Longitudinal Studies; Needs Assessment; quality of life; Family/psychology; Chronic disease; Palliative Care/methods/psychology/trends; Pediatrics/methods/trends; Terminal Care/methods/psychology/trends
2002
Hutton N
Archives Of Pediatrics & Adolescent Medicine
2002
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/10.1001/archpedi.156.1.9" target="_blank" rel="noreferrer">10.1001/archpedi.156.1.9</a>
I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain
Female; Humans; Adult; Attitude to Health; Middle Aged; Chronic disease; Feminism; Narration; Pain/psychology
In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The women described themselves in various ways as 'strong', and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women's descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the scepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in 'storied form' according to a gendered work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman.
2004
Werner A; Isaksen LW; Malterud K
Social Science & Medicine
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.socscimed.2003.12.001" target="_blank" rel="noreferrer">10.1016/j.socscimed.2003.12.001</a>
Changes in mothers' basic beliefs following a child's bone marrow transplantation: the role of prior trauma and negative life events
Child; Female; Hospitalization; Humans; Male; Adult; Attitude to Health; Mother-Child Relations; Health Status; Longitudinal Studies; Mental Health; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Psychological; Stress; Bone Marrow Transplantation/psychology; Wounds and Injuries/psychology
This longitudinal study examined the relation between life stress and basic beliefs about self-worth and the benevolence and meaningfulness of the world among mothers of children undergoing bone marrow transplantation (BMT). One hundred mothers completed study measures during the child's hospitalization for BMT and 1 year later. Prior trauma and recent negative events were associated with basic beliefs during hospitalization and also with changes in basic beliefs in the subsequent year, with distress mediating some of these relations. Findings also demonstrated relations between basic beliefs and physical and mental functioning. However, each basic belief exhibited different relations with study variables, suggesting the need to investigate them separately.
Rini C; Manne S; DuHamel KN; Austin J; Ostroff J; Boulad F; Parsons SK; Martini R; Williams S; Mee L; Sexson S; Redd WH
Journal Of Traumatic Stress
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/10.1023/B:JOTS.0000038481.17167.0d" target="_blank" rel="noreferrer">10.1023/B:JOTS.0000038481.17167.0d</a>
Recruiting for research in hospice: feasibility of a research screening protocol
Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Attitude to Health; Eligibility Determination; Aged; Middle Aged; Patient Selection; Feasibility Studies; adolescent; 80 and over; Multi-site Ethics; Research Subjects/psychology; Hospice Care/utilization; Community Health Services/utilization; Health Services Research/methods
BACKGROUND: The growth of palliative care research has been limited by challenges of slow recruitment and underenrollment. One potential solution to this problem is the use of screening questions embedded in clinical data collection, which identify patients who are interested in participating in research and who can then be approached directly. The goal of this study was to evaluate the feasibility of this strategy for identifying hospice patients who are interested in research participation. DESIGN: Cross-sectional survey. SETTING/ SUBJECTS: Patients and their families who had enrolled in one of two community-based hospice programs. MEASUREMENTS: Three screening questions (for survey-based research, clinical trials and family- focused research) were integrated into the intake process of two community-based hospice organizations. RESULTS: Of the 214 patients who were able to respond, 54% indicated willingness to be approached about survey-based research, 40% were willing to be approached for clinical trials and 65% were willing to be approached for family-focused research. CONCLUSIONS: These results suggest that screening questions may be useful in identifying hospice patients who are willing to be recruited for research. Further study is needed to define the likelihood that these patients will consent and whether these screening questions introduce selection bias in the recruitment process.
2004
Casarett D; Kassner CT; Kutner JS
Journal Of Palliative Medicine
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/10.1089/jpm.2004.7.854" target="_blank" rel="noreferrer">10.1089/jpm.2004.7.854</a>
Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs
Child; Humans; infant; Family; Attitude to Health; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Primary Health Care; adolescent; Non-U.S. Gov't; Research Support; infant; Chronic disease; Newborn; social support; Health Services/standards
OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic health conditions. Mothers completed the Family Needs Survey, as well as other measures of child and family functioning. RESULTS: Mothers reported a high prevalence and broad range of unmet family needs. The most frequent area of need was for information about services and ways to promote child health and development. Predictors of total number of family needs included demographic characteristics, ratings of social support, and appraisals of family burden. Predictors of specific types of family needs varied according to category of need. CONCLUSIONS: Innovative psychosocial intervention programs are needed in primary care settings to reduce family needs and promote child health. More intensive family supports may be indicated for those with minority-group or low socioeconomic status, limited social support, or high perceived burden.
2004
Farmer JE; Marien WE; Clark MJ; Sherman A; Selva TJ
Journal of Pediatric Psychology
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/10.1093/jpepsy/jsh039" target="_blank" rel="noreferrer">10.1093/jpepsy/jsh039</a>
Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units
Female; Humans; Male; Intensive Care Units; Adult; Attitude to Health; Attitude of Health Personnel; Logistic Models; Prospective Studies; Aged; Middle Aged; Multivariate Analysis; Consumer Satisfaction; Depression; Anxiety; decision making; Family/psychology; ICU Decision Making; France
OBJECTIVE: To evaluate the opinions of intensive care unit staff and family members about family participation in decisions about patients in intensive care units in France, a country where the approach of physicians to patients and families has been described as paternalistic. DESIGN: Prospective multiple-center survey of intensive care unit staff and family members. SETTING: Seventy-eight intensive care units in university-affiliated hospitals in France. PATIENTS: We studied 357 consecutive patients hospitalized in the 78 intensive care units and included in the study starting on May 1, 2001, with five patients included per intensive care unit. INTERVENTIONS: We recorded opinions and experience about family participation in medical decision making. Comprehension, satisfaction, and Hospital Anxiety and Depression Scale scores were determined in family members. MEASUREMENTS AND MAIN RESULTS: Poor comprehension was noted in 35% of family members. Satisfaction was good but anxiety was noted in 73% and depression in 35% of family members. Among intensive care unit staff members, 91% of physicians and 83% of nonphysicians believed that participation in decision making should be offered to families; however, only 39% had actually involved family members in decisions. A desire to share in decision making was expressed by only 47% of family members. Only 15% of family members actually shared in decision making. Effectiveness of information influenced this desire. CONCLUSION: Intensive care unit staff should seek to determine how much autonomy families want. Staff members must strive to identify practical and psychological obstacles that may limit their ability to promote autonomy. Finally, they must develop interventions and attitudes capable of empowering families.
2004
Azoulay E; Pochard F; Chevret S; Adrie C; Annane D; Bleichner G; Bornstain C; Bouffard Y; Cohen Y; Feissel M; Goldgran-Toledano D; Guitton C; Hayon J; Iglesias E; Joly LM; Jourdain M; Laplace C; Lebert C; Pingat J; Poisson C; Renault A; Sanchez O; Selcer D; Timsit JF; LeGall JR; Schlemmer B; FAMIREA Study Group
Critical Care Medicine
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/10.1097/01.ccm.0000139693.88931.59" target="_blank" rel="noreferrer">10.1097/01.ccm.0000139693.88931.59</a>
Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Attitude to Health; Health Services Accessibility; Socioeconomic Factors; Patient Acceptance of Health Care; Sex Factors; Quality of Health Care; Respite Care; Non-U.S. Gov't; Research Support; social support; caregivers; Cerebral Palsy/complications/rehabilitation
OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about their experience with formal respite services. Interviews were part of a larger cross-sectional study on caregiver health. Caregivers were asked about their knowledge of formal respite services; their use of formal respite services in the past year; financial implications relating to formal respite use; perceived barriers to formal respite service use; and reasons for not using formal respite services (if applicable). RESULTS: Nearly half (46%) of caregivers in the sample reported using respite services in the past year. Most of the caregivers who used respite services used more than one source of respite, had services provided in their home, often for less than 1 day, and reported using them more than six times. The most commonly cited reason for using formal respite services was for a planned break. Many factors influenced caregivers' use of formal respite services. Caregivers who had a child with a lower level of function, with multiple additional conditions, or who was male, were more likely to use formal respite services. Although over 90% of caregivers indicated that respite use is beneficial for both their family and child, over 60% reported facing many barriers while attempting to access respite services. CONCLUSION: Results from this cross-sectional study indicate that caregivers who used respite services used them frequently for breaks from caregiving. Caregivers described facing many barriers while attempting to access respite services therefore to improve caregiver's experience with respite services, strategies are suggested.
2004
Damiani G; Rosenbaum P; Swinton M; Russell D
Child: Care, Health And Development
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/10.1111/j.1365-2214.2004.00391.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2004.00391.x</a>
Coordinating the norms and values of medical research, medical practice and patient worlds-the ethics of evidence based medicine in orphaned fields of medicine
Delivery of Health Care; Humans; Personal Autonomy; Attitude to Health; Clinical Competence; Ethics; Medical; Analytical Approach; Models; Theoretical; Health Care and Public Health; Social Responsibility; Allied Health Occupations/ethics; Cognitive Therapy/ethics; Evidence-Based Medicine/ethics; Integrated/ethics; Interprofessional Relations/ethics; Logic; Patient Care Team/ethics; Physical Therapy Modalities/ethics; Social Justice/ethics
Evidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical professionals had better make sure their competency is state of the art medical science. What goes for the ethics of clinical trials goes for the ethics of medicine as a whole: anything that is scientifically doubtful is, other things being equal, ethically unacceptable. This particularly applies to so called orphaned fields of medicine, those areas where medical research is weak and diverse, where financial incentives are lacking, and where the evidence regarding the aetiology and treatment of disease is much less clear than in laboratory and hospital based medicine. Examples of such orphaned fields are physiotherapy, psychotherapy, medical psychology, and occupational health, which investigate complex syndromes such as RSI, whiplash, chronic low back pain, and chronic fatigue syndrome. It appears that the primary ethical problem in this context is the lack of attention to the orphaned fields. Although we agree that this issue deserves more attention as a matter of potential injustice, we want to argue that, in order to do justice to the interplay of heterogeneous factors that is so typical of the orphaned fields, other ethical models than justice are required. We propose the coordination model as a window through which to view the important ethical issues which relate to the communication and interaction of scientists, health care workers, and patients.
2004
Vos R; Willems D; Houtepen R
Journal Of Medical Ethics
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/10.1136/jme.2003.007153" target="_blank" rel="noreferrer">10.1136/jme.2003.007153</a>