Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Female; Anxiety; Grief; Adult; Health Personnel; Quality of Health Care; Adolescence; Self Concept; Medical Records; Emotions; Interviews; Purposive Sample; Qualitative Studies; Culture; Fear; Descriptive Research; Human; Hope; Reflection; Content Analysis; Field Notes; Evaluation; Hospitals Community; Women; Health Knowledge; Perinatal Death; Psychosocial Factors; Cultural Competence; Cultural Sensitivity; Forgiveness; Self-Talk; Social Norms; Thailand
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that will be useful in meeting the unmet needs of women experiencing perinatal death. This qualitative study explored the grief journey set among cultural beliefs of Thai women experiencing perinatal death. Twenty-five participants who experienced perinatal death between six months and two years before participating in the study were recruited by purposive sampling through the medical history records of four community hospitals in a province of Thailand. Data were collected by in-depth interviews from September 2020 to March 2021 until data saturation. Content analysis was applied to analyze the data. Findings revealed four themes: 1) bewildering in the dark (wondering what is wrong, anxiety and fear about the anticipated loss, flickering hope); 2) grief response (the world suddenly shuts down, overwhelming sorrow); 3) self-reflection (by talking to self, talking to others); and 4) self-healing (compliance with cultural beliefs, the forgiveness of self and others). In conclusion, healthcare providers should be equipped with essential knowledge for addressing issues holistically based on cultural sensitivity that will be useful in enhancing the utmost ability of women in moving through their grief.
Nedruetai P; Puangpaka K; Bih-Ching S
Pacific Rim International Journal of Nursing Research
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Attitude of Health Personnel; Attitudes; Female; Health Knowledge; Hospital/psychology; Humans; Intensive Care Units; Male; Medical Staff; Neonatal/statistics & numerical data; Nursing Staff; Practice; Professional-Family Relations; Resuscitation Orders/psychology; Retrospective Studies; Surveys and Questionnaires; United States; Withholding Treatment/statistics & numerical data
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.
Arzuaga BH; Wraight CL; Cummings CL; Mao W; Miedema D; Brodsky DD
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population
bloodspot;Ethics;Health Knowledge;newborn genetic screening;social implications;spinal muscular atrophy;Adolescent;Adult;Aged;Attitudes;Family;Female;Genetic Testing utilization;Humans;Infant;Internet;Male;Middle Aged;Muscular Atrophy;Neonatal Screening methods;Neuromuscular Diseases genetics;Newborn;Practice;Risk Assessment methods;Spinal diagnosis genetics;Surveys and Questionnaires;United Kingdom epidemiology
BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of screening tests to accurately predict disease severity are among the key reasons implementation of screening has faltered in the UK. With the recent release of the first therapy for SMA (Nusinersen), calls are being made for a reconsideration of this stance; however, very little is known about the views of the general public. METHODS: An online survey was administered to 232 individuals with no prior relationship with SMA to assess their attitudes toward a newborn screening program for it. Results are compared with previously gathered data on the views of SMA-affected families toward screening. RESULTS: Eighty-four percent of participants were in favor of newborn screening. Key reasons for support were a belief that it would lead to better healthcare and life expectancy for affected infants and facilitate informed decision-making for future pregnancies. Key reasons for nonsupport were a belief in the potential for significant negative impact on the family unit in terms of bonding and stress. CONCLUSIONS: Public acceptability is a key component in the evaluation of any potential screening program in the UK. This study demonstrates that newborn screening for SMA is viewed largely positively by people unfamiliar with the condition. The importance of early identification overrode all other social and ethical concerns about screening for the majority of participants.
Boardman FK;Sadler C;Young PJ
Molecular genetics & genomic medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/mgg3.353" target="_blank" rel="noreferrer noopener">10.1002/mgg3.353</a>
The impact of a palliative care team on residents' experiences and comfort levels with pediatric palliative care
Child; Female; Humans; Male; United States; Palliative Care; patient care team; Pediatrics; Adult; Attitude of Health Personnel; Questionnaires; Internship and Residency; Practice; Attitudes; Health Knowledge
BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative care team (PCT) on pediatric and internal medicine/pediatric (IM/Peds) residents knowledge, comfort level and experience providing pediatric palliative care (PPC). DESIGN: Electronic 32-item questionnaire. SUBJECTS: Pediatric and IM/Peds residents at ACGME accredited programs during the 2011-2012 academic year. MEASUREMENTS: Residents' PPC training, knowledge, comfort levels and experiences. RESULTS: Nearly two-thirds of 294 respondents (63.6%; 95% CI: 58.2, 69.1) selected a description of PPC that describes palliative care as starting at the time of diagnosis regardless of treatment goals. Participants who reported the presence of a PCT at their institution selected this accurate description of PPC more often than those who did not report the presence of a PCT (72.3% vs. 53.3%; p<0.001, Fisher's Exact Test). Overall, 55.3% (95% CI: 49.2, 61.3) were comfortable providing PPC. Reporting the presence of a PCT was also associated with more comfort in providing PPC (p<0.01). CONCLUSIONS: Reported presence of a PCT may be associated with greater resident comfort in providing PPC and a more accurate understanding of PPC. There remains ample opportunity to educate pediatric and IM/Peds residents in PPC.
2014-01
Wu KL; Friderici J; Goff Sarah L
Journal Of Palliative Medicine
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0227" target="_blank" rel="noreferrer">10.1089/jpm.2013.0227</a>
Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care
Female; Humans; Male; Palliative Care; Neoplasms; Pediatrics; Adult; Aged; Middle Aged; Health Personnel; Focus Groups; Medical Oncology; Practice; Palliative Care; Attitudes; Health Knowledge
BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for pediatric patients to identify barriers and facilitators that might assist in understanding how care could be improved. PROCEDURES: Pediatric oncology providers were recruited to participate in four focus groups. A proposal for early integration of a pediatric palliative care team (PPCT) was presented and followed by a facilitated discussion. Data were analytically categorized into themes by three independent coders using constant comparative analysis and crystallization techniques. A consensus approach was used to identify final themes. RESULTS: Barriers to the proposed care model of early integration of a PPCT included provider role, conflicting philosophy, patient readiness, and emotional influence and were more prevalent in the physician participants compared to nurse practitioner, nursing, and social work participants. Facilitators included patient eligibility, improved patient care, education, and evidence-based medicine. Though all participants were invested in providing optimal patient care, physician participants believed the current standard of care model is meeting the needs of patients and family, while the nurse practitioner, nursing, and social work participants working on the same healthcare team believed the proposed care model would improve the overall care of children diagnosed with cancer. CONCLUSIONS: Differing perceptions among healthcare providers regarding the care of children with cancer suggest that team functioning could be improved. Avenues for pilot testing early integration of PC could provide useful information for a next study.
2013-11
Dalberg T; Jacob-Files E; Carney PA; Meyrowitz J; Fromme EK; Thomas G
Pediatric Blood & Cancer
2013
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/pbc.24673" target="_blank" rel="noreferrer">10.1002/pbc.24673</a>
The effects of the Palliative Medicine Consultation on the DNR status of African Americans in a safety-net hospital.
Female; Humans; Male; Critical Illness; Prognosis; Aged; Middle Aged; Communication; Poverty Areas; Attitudes; retrospective studies; Health Knowledge; DNAR; Resuscitation Orders; Palliative Care/mt [Methods]; Advance Directives/eh [Ethnology]; Palliative Care/og [Organization & Administration]; New York City; Advance Directives/sn [Statistics & Numerical Data]; African Americans/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Palliative Care/sn [Statistics & Numerical Data]; Practice/eh [Ethnology]; Referral and Consultation/statistics & numerical data
OBJECTIVE: To examine the effectiveness of palliative medicine consultation on completion of advance directives/do-not-resuscitate (DNR) orders by racial/ethnic minorities., METHOD: A sample of 1999 seriously ill African American and Hispanic inpatients was obtained from the Palliative Medicine Consultation database (n = 2972). Associations between race/ethnicity and diagnosis and documentation of DNR status on admission and discharge were examined., RESULTS: Cancer was the primary diagnosis, 34.5%. Among patients with a consultation, 98% agreed to discuss advance directives; 65% of African Americans and 70% of Hispanics elected DNR status. Inpatient deaths were 46%; 74% of decedents agreed to DNR orders. Discharged patients referred to hospice were 29%., CONCLUSION: Palliative medicine consultations resulted in timely completion of DNR orders and were positively associated with DNR election and hospice enrollment.
2013
Sacco J; Deravin Carr DR; Viola D
The American Journal Of Hospice & Palliative Care
2013
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/10.1177/1049909112450941" target="_blank" rel="noreferrer">10.1177/1049909112450941</a>
Development and validation of the Communicating with Family about Brain Death Scale
Communication; Family; Tissue and Organ Procurement; adolescent; Adult; Attitudes; brain-dead organ donation; Brain Death/ diagnosis; communicating with family about brain death; Cross-Sectional Studies; decision making; end-of-life decision making; FACTOR analysis; Female; first-person organ donation consent laws; Health Knowledge; Humans; Male; Middle Aged; misconceptions about brain death; Practice; Reproducibility of Results; statistical; Young Adult
This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using confirmatory factor analysis. In both studies, the same 6 items were shown to be unidimensional with acceptable reliability. Parallelism was shown between the Brain Death Scale and a measure of communication with family. Predictive validity was exhibited between participants' donor status and the Brain Death Scale. The scale was associated with knowledge about brain death confirming misconceptions about brain-dead organ donation.
2016-07
Bresnahan M; Zhuang J
Journal Of Health Psychology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1359105314550349" target="_blank" rel="noreferrer">10.1177/1359105314550349</a>
Good-parent beliefs of parents of seriously ill children
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Parent-Child Relations; Parents; Questionnaires; Chronic disease; Child welfare; Acute Disease; Stress; Practice; Preschool; Adaptation; Psychological; Attitudes; Newborn; Health Knowledge; Philadelphia
IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
2015-01
Feudtner C; Walter JK; Faerber JA; Hill DL; Carroll KW; Mollen CJ; Miller VA; Morrison WE; Munson DA; Kang T; Hinds PS
Jama Pediatrics
2015
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/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.2341</a>
Palliative care of children with brain tumors: a parental perspective
adolescent; Child; Female; Humans; infant; Male; Young Adult; Palliative Care; home care services; Adult; Parents; Middle Aged; Attitude to Death; Qualitative Research; Focus Groups; Activities of Daily Living; Spirituality; Practice; Preschool; Adaptation; Psychological; Attitudes; Brain neoplasms; Health Knowledge; PEDI Study
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
2010-03
Zelcer S; Cataudella D; Cairney A; Elizabeth L; Bannister SL
Archives Of Pediatrics & Adolescent Medicine
2010
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Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.284</a>
Adherence to medical recommendations and transition to adult services in pediatric transplant recipients
Humans; Young Adult; Adult; Practice Guidelines as Topic; Drug Monitoring; Treatment Outcome; Risk Assessment; Risk Factors; Continuity of Patient Care; Health Behavior; Patient Education as Topic; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Graft Survival; Immunosuppressive Agents/therapeutic use; Graft Rejection/etiology/prevention & control; Medication Adherence; Organ Transplantation/adverse effects
PURPOSE OF REVIEW: Nonadherence to treatment recommendations, especially when associated with transition to adult care providers, account, by some estimates, for most organ rejections and death in long-term pediatric survivors of solid organ transplantations. It is therefore imperative that providers become familiar with the issues related to those major risks and ways to address them. RECENT FINDINGS: It is possible, and important, to routinely measure adherence to medications by using one of several available and proven methods of surveillance. There are numerous ways to improve adherence, and it is in fact possible to improve adherence and therefore outcomes in the transplant setting. The transition to adult services is a vulnerable period. The authors believe that it is possible to improve the transition process, and suggestions are presented in this review. However, solid research into interventions to improve transition is lacking. SUMMARY: Nonadherence to medical recommendations is prevalent and leads to poor outcomes following otherwise successful pediatric transplantation. An especially vulnerable period is the time when a recipient transitions to adult care. Routine monitoring of adherence, evaluating and addressing barriers to adherence, and collaborative, multidisciplinary care are all expected to substantially improve adherence and reduce the risks associated with transition.
2010
Shemesh E; Annunziato RA; Arnon R; Miloh T; Kerkar N
Current Opinion In Organ Transplantation
2010
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Journal Article
<a href="http://doi.org/10.1097/MOT.0b013e32833984a5" target="_blank" rel="noreferrer">10.1097/MOT.0b013e32833984a5</a>
The experiences of Chinese family members of terminally ill patients - a qualitative study
Female; Humans; Male; Grief; Adult; Questionnaires; Aged; Middle Aged; Professional-Family Relations; Health Services Needs and Demand; Qualitative Research; Nursing Methodology Research; Health Education; Nursing Staff; Practice; adolescent; 80 and over; Adaptation; Psychological; Attitudes; Health Knowledge; social support; Anger; Attitude to Death/ethnology; Hong Kong; Hospital/psychology; Nurse's Role/psychology; Attitude to Health/ethnology; Family/ethnology; Palliative Care/organization & administration/psychology
AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. DESIGN: A phenomenological study was conducted. Data were collected by semi-structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. RESULTS: Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. CONCLUSION: This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. RELEVANCE TO CLINICAL PRACTICE: This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.
2007
Wong MS; Chan SW
Journal Of Clinical Nursing
2007
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2007.01943.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2007.01943.x</a>
Creating social work competencies for practice in hospice palliative care
Child; Humans; Palliative Care; Adult; Canada; Professional Role; Clinical Competence; Interprofessional Relations; Delphi Technique; Practice; PPC Book Chapter 2011 (Kim Widger); Attitudes; Health Knowledge; hospice care; Social Work/education; Educational Measurement/standards
Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care. Despite the prominent and longstanding position of social work in this area, the role and functions of social workers had not been clearly defined. A Canadian task group of social work practitioners and educators utilized a modified Delphi process to consult front line clinicians nationally, and thereby achieved consensus regarding the identification and description of eleven core competencies in Hospice Palliative Care. These competencies are relevant for social workers at different experience levels across care settings. They can be used to inform social work practice, as well as professional development and educational curricula in this area.
2010
Bosma H; Johnston M; Cadell S; Wainwright W; Abernethy N; Feron A; Kelley ML; Nelson F
Palliative Medicine
2010
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Journal Article
<a href="http://doi.org/10.1177/0269216309346596" target="_blank" rel="noreferrer">10.1177/0269216309346596</a>
Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception
Female; Humans; Data Collection; Parents; Logistic Models; Questionnaires; Practice; adolescent; Empirical Approach; Attitudes; Adolescent Transitions; Health Knowledge; Genetics and Reproduction; Confidentiality/legislation & jurisprudence/psychology; Contraception Behavior; Family Planning Services/legislation & jurisprudence/utilization; Parental Notification/legislation & jurisprudence; Sexual Behavior; Unsafe Sex
CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to which parents are currently aware that their teenage daughters are accessing reproductive health services and how minors would react in the face of mandated parental involvement laws for prescription birth control. DESIGN, SETTING, AND PARTICIPANTS: A total of 1526 female adolescents younger than 18 years seeking reproductive health services at a national sample of 79 family planning clinics were surveyed between May 2003 and February 2004. MAIN OUTCOME MEASURES: Proportions of minor females who reported that a parent or guardian was aware that they were at the family planning clinic and, under conditions of mandated parental involvement, proportions of minors who would access prescription contraceptives at family planning clinics or engage in unsafe sex. RESULTS: Sixty percent of minors reported that a parent or guardian knew they were accessing sexual health services at the clinic. Fifty-nine percent of all adolescents would use the clinic for prescription contraception even if parental notification were mandated. This response was less common (29.5%) among adolescents whose parents were unaware of their clinic visits and more common (79%) among those whose parents were aware. Many adolescents gave more than 1 response to mandated parental involvement. Forty-six percent would use an over-the-counter method, and 18% would go to a private physician. Seven percent said that they would stop having sex as one response, but only 1% indicated this would be their only reaction. One in 5 adolescents would use no contraception or rely on withdrawal as one response to mandated notification. CONCLUSIONS: Most minor adolescent females seeking family planning services report that their parents are aware of their use of services. Most would continue to use clinic services if parental notification were mandated. However, mandated parental notification laws would likely increase risky or unsafe sexual behavior and, in turn, the incidence of adolescent pregnancy and sexually transmitted diseases.
2005
Jones RK; Purcell A; Singh S; Finer LB
Jama
2005
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Journal Article
<a href="http://doi.org/10.1001/jama.293.3.340" target="_blank" rel="noreferrer">10.1001/jama.293.3.340</a>
Estimates of life expectancy by adolescents and young adults with congenital heart disease
Female; Humans; Male; Adult; Logistic Models; Questionnaires; Health Status; Awareness; Health Behavior; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Heart Defects; Life Expectancy; Congenital/epidemiology
OBJECTIVES: This study sought to determine what adolescents and young adults with moderate to complex congenital heart disease (CHD) believe their life span to be and to examine correlates of their beliefs. BACKGROUND: Patients with moderate to complex CHD have a shortened life expectancy. Patients' perceptions of their life expectancy have not been examined. METHODS: Young adults and older adolescents with moderate or complex CHD (n = 296) estimated their own life expectancy and that of healthy peers, and rated their health status and risk of CHD complications. Adults with CHD discussed reasons for life expectancy ratings in an interview. RESULTS: Patients with CHD expected to live to age 75 +/- 11 years, only 4 years less than their healthy peers. Over 85% of patients expected to live longer than our estimates of their life expectancy. Poorer health status and higher perceived risk of CHD complications related to shorter perceived life expectancy. Young adults lacked awareness and understanding of CHD-specific risks, and their life expectancy perceptions often related to risk factors for coronary artery disease. CONCLUSIONS: Patients with moderate to complex CHD expect to live almost as long as their healthy peers. For most patients, this is unlikely. The implications of these beliefs on health behaviors and life choices are unknown, but should be examined. Nevertheless, patients need accurate information delivered in a sensitive manner to make informed life choices regarding education, careers, and family.
2006
Reid GJ; Webb GD; Barzel M; McCrindle BW; Irvine MJ; Siu SC
Journal Of The American College Of Cardiology
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
<a href="http://doi.org/10.1016/j.jacc.2006.03.041" target="_blank" rel="noreferrer">10.1016/j.jacc.2006.03.041</a>
Brief report: family-based group intervention for young siblings of children with chronic illness and developmental disability
adolescent; Child; Female; Humans; infant; Male; Adult; Chronic disease; Follow-Up Studies; Siblings; Social Adjustment; Developmental Disabilities; Family Therapy; Analysis of Variance; Practice; Preschool; Adaptation; Psychological; Attitudes; PedPal Lit; Health Knowledge; Intervention; Interventions; sibling bereavement
OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. RESULTS: Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. CONCLUSIONS: Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.
2005-12
Lobato DJ; Kao BT
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi054" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi054</a>
Social work competencies in palliative and end-of-life care
Humans; Interdisciplinary Communication; Attitude; Clinical Competence; Information Dissemination; Social Work; Practice; Attitudes; Health Knowledge; Palliative Care/standards; Terminal Care/standards; Educational Measurement/standards; Patient Care Planning/standards
Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and "best practice" social work interventions.
2005
Gwyther LP; Altilio T; Blacker S; Christ G; Csikai EL; Hooyman N; Kramer B; Linton J; Raymer M; Howe J
Journal of Social Work in End-of-Life & Palliative Care
2005
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/10.1300/j457v01n01_06" target="_blank" rel="noreferrer">10.1300/j457v01n01_06</a>
Social work and end-of-life care: reviewing the past and moving forward
Humans; Health Services Accessibility; Interdisciplinary Communication; Clinical Competence; Altruism; Practice; Attitudes; Health Knowledge; Terminal Care/organization & administration; Social Work/education/organization & administration
This paper reviews the professional literature with respect to the social work profession's involvement in end-of-life care. The search process was conducted by entering key words in various combinations to electronic databases. Eligible articles were required to address one of the following: roles and activities of social workers in providing end-of-life care; core principles valued by social workers in the provision of end-of-life care; and barriers to provision of effective end-of-life care. The literature from 1990 through July 2004 was searched most rigorously. Based on this review, suggestions for where the profession of social work should focus its energies are offered. These key areas include focusing on generating empirically-based knowledge for practice and policy analysis and developing a system of social work education that addresses the unique knowledge and skills needed to participate in end-of-life practice as competent and informed professional practitioners. Current initiatives with regard to critical areas are summarized.
2005
Brandsen CK
Journal of Social Work in End-of-Life & Palliative Care
2005
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/10.1300/j457v01n02_05" target="_blank" rel="noreferrer">10.1300/j457v01n02_05</a>
Paediatric fever management: continuing education for clinical nurses
Child; Cross-Sectional Studies; Female; Humans; Male; Analgesics; Attitude of Health Personnel; Education; Questionnaires; Health Services Needs and Demand; Nurse's Role; Time Factors; Hospitals; Nursing Staff; Practice; Pediatric; Attitudes; PedPal Lit; Health Knowledge; Non-Narcotic/therapeutic use; Nursing; Educational Status; Certification; Urban; Nursing Process; Clinical Competence/standards; Continuing/organization & administration; Evidence-Based Medicine/education; Fever/nursing/prevention & control; Hospital/education/psychology; Negativism; Pediatric Nursing/education
PURPOSE: This study examined the influence of level of practice, additional paediatric education and length of paediatric and current experience on nurses' knowledge of and beliefs about fever and fever management. METHOD: Fifty-one nurses from medical wards in an Australian metropolitan paediatric hospital completed a self-report descriptive survey. RESULTS: Knowledge of fever management was mediocre (Mean 12.4, SD 2.18 on 20 items). Nurses practicing at a higher level and those with between one and four years paediatric or current experience were more knowledgeable than novices or more experienced nurses. Negative beliefs that would impact nursing practice were identified. Interestingly, beliefs about fever, antipyretic use in fever management and febrile seizures were similar; they were not influenced by nurses' knowledge, experience, education or level of practice. CONCLUSIONS: Paediatric nurses are not expert fever managers. Knowledge deficits and negative attitudes influence their practice irrespective of additional paediatric education, paediatric or current experience or level of practice. Continuing education is therefore needed for all paediatric nurses to ensure the latest clear evidence available in the literature for best practice in fever management is applied.
2006
Walsh AM; Edwards HE; Courtney MD; Wilson JE; Monaghan SJ
Nurse Education Today
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
Nurses' attitudes to pain management during routine venepuncture in young children
Child; Humans; Pain Measurement; Questionnaires; Age Factors; Severity of Illness Index; Nursing Assessment; Nursing Methodology Research; Child Advocacy; Nursing Staff; Patient Rights; Practice; Preschool; Attitudes; PedPal Lit; infant; Health Knowledge; Hospitalized/psychology; Child; Nurse's Role/psychology; Attitude of Health Personnel; administration/psychology; Hospital/education/organization &; Pain/diagnosis/etiology/prevention & control/psychology; Pediatric Nursing/education/organization & administration; Phlebotomy/adverse effects
Venepuncture is one of the most commonly performed clinical procedures carried out on young children. Evidence indicates inconsistency in the use of pain management strategies during these procedures. A survey method was used to explore nurses' views on the experience of pain by infants and toddlers and the pain management techniques they use. All children's nurses on the general medical and surgical wards at one hospital site were invited to participate (n=55)
45 responses were receive (81 per cent). These children's nurses believe that infants and toddlers feel more pain and display more distress than older children. Respondents reported that pharmacological preparations were not generally used on infants prior to venous cannulation
Melhuish S; Payne H
Paediatric 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
Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care
Female; Humans; Male; Adult; Health Care Surveys; Prospective Studies; Massachusetts; Boston; Needs Assessment; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Aging/psychology; Continuity of Patient Care/organization & administration; Counseling/organization & administration; Cystic Fibrosis/psychology/therapy; Day Care/organization & administration; Preventive Medicine/organization & administration; Pulmonary Disease (Specialty)/statistics & numerical data
The purpose of this study was to investigate how adolescents and adults with cystic fibrosis (CF) view preventive counseling and their transition to adult-centered care within a children's hospital. Thirty-two patients >/=16 years old diagnosed with CF were recruited from a pediatric tertiary care setting. During face-to-face interviews, patients were asked 27 structured questions and completed a 30-item self-administered questionnaire on preventive counseling by healthcare providers and on transition issues. The median age of patients was 25.5 years (range, 16-43 years); 69% of patients identified a pulmonologist as their "main doctor," even though 78% had a primary care provider. Participants felt that 13-16 years of age was the best time for them to begin spending time alone with their main doctor. Less than half of the participants recalled receiving preventive counseling during the previous 12 months, and more patients wanted to discuss issues than actually did. Qualitative data emphasized the importance of independence in making decisions in healthcare and establishing relationships with providers, and many patients did not desire to transfer care to an adult hospital. Participants identified adult-focused services such as inpatient rooms, discussion groups, work options, and social service support that would enhance care. In conclusion, the majority of adolescent/young adult patients with CF receiving care in a pediatric institution reported satisfaction with their healthcare. However, patients identified preventive issues that they desired to be more regularly addressed, starting in early adolescence, and changes in the delivery of services to enhance transition to adult-oriented care. This study underscored the understanding of the integration of transition planning into the facilitation of healthcare decision-making by the adolescent in issues of self-care, sexuality, education, and finances. Future initiatives to enhance the care of patients with CF should provide training of pulmonologists in preventive care and increased attention to helping patients utilize appropriate primary-care services during the adult years. In addition, prospective studies are needed to compare outcomes of CF patients who have transitioned and transferred to adult hospitals and those transitioning to adult-oriented services in a pediatric institution.
2003
Zack J; Jacobs CP; Keenan PM; Harney K; Woods ER; Colin AA; Emans SJ
Pediatric Pulmonology
2003
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Journal Article
<a href="http://doi.org/10.1002/ppul.10342" target="_blank" rel="noreferrer">10.1002/ppul.10342</a>
End-of-life care in the pediatric intensive care unit: research review and recommendations
Child; Humans; Intensive Care Units; Adult; Attitude of Health Personnel; Attitude to Death; Infant Mortality; Evidence-Based Medicine; Forecasting; Practice; bereavement; Attitudes; decision making; infant; Practice Guidelines; Health Knowledge; ICU Decision Making; Parents/psychology; United States/epidemiology; Quality Assurance; Analgesia/ethics/standards; Conscious Sedation/ethics/standards; Health Care/organization & administration; Intensive Care/ethics/organization & administration/psychology; Pediatric/ethics/organization & administration; Resuscitation/ethics/standards; Terminal Care/ethics/organization & administration/psychology; Withholding Treatment/ethics/standards
Improving the quality of end-of-life care has become a national health care priority. A necessary step in this process in the pediatric intensive care unit (ICU) is examining the knowledge, attitudes,and behaviors of pediatric critical care practitioners in this area. In addition, the perspectives of bereaved parents must be uncovered as well. In this article, the empirical data in the literature on end-of-life care in the pediatric ICU are reviewed, common ethical controversies in this environment are discussed, and promising interventions for the future are presented.
2004
Burns JP; Rushton CH
Critical Care Clinics
2004
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Journal Article
<a href="http://doi.org/10.1016/j.ccc.2004.03.004" target="_blank" rel="noreferrer">10.1016/j.ccc.2004.03.004</a>
The use of methadone for cancer pain
Child; Humans; Analgesics; Attitude of Health Personnel; Treatment Outcome; Information Dissemination; Patient Selection; Drug Interactions; Clinical Protocols; Drug Administration Schedule; Practice; Attitudes; Health Knowledge; Palliative Care/methods; Dose-Response Relationship; Drug; Neoplasms/complications; Pain/diagnosis/drug therapy/etiology; Biological Availability; Drug Costs; Drug Industry/economics; Drug Information Services; Metabolic Clearance Rate; Methadone/chemistry/economics/pharmacology/therapeutic use; Morphine/pharmacology/therapeutic use; Opioid/chemistry/economics/pharmacology/therapeutic use
Methadone is not a new analgesic drug [69]. Several studies have demonstrated that methadone is a valid alternative to morphine, hydromorphone, and fentanyl for the treatment of cancer-related pain, and extensive reviews on the subject have been published in recent years [10,23,25,64,70,71]. Most people involved in pain therapy, however, are not well informed about the properties of methadone. The authors believe that the low cost of methadone paradoxically contributes to the limited knowledge of its characteristics and to the restricted therapeutic use of this drug. The low cost of methadone means there is little financial incentive for pharmaceutical companies to invest in research or to disseminate scientific information. Unfortunately, the lack of scientific information from pharmaceutical companies frequently results in a lack of knowledge on the part of physicians. Unless the existing approach changes, both culturally and politically, ignorance about methadone will persist among medical experts. The low cost of methadone, rather than being an advantage, will result in the limited exploitation of an effective drug.
2002
Ripamonti C; Bianchi M
Hematology/oncology Clinics Of North America
2002
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Journal Article
<a href="http://doi.org/10.1016/s0889-8588(02)00017-5" target="_blank" rel="noreferrer">10.1016/s0889-8588(02)00017-5</a>
Treatment adherence of youth and young adults with and without a chronic illness
Child; Female; Humans; Male; Adolescent Psychology; Adult; Questionnaires; Age Factors; Needs Assessment; Mental Health; Internal-External Control; Predictive Value of Tests; Case-Control Studies; Practice; adolescent; Adaptation; Psychological; Attitudes; Health Knowledge; Adolescent Behavior/psychology; Chronic Disease/psychology; Patient Education; Acute Disease/psychology; Patient Compliance/psychology; Self Care/psychology
The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational study was undertaken to compare the psychosocial functioning of young people, with and without chronic illness, aged between 12 and 24 years. Subjects were recruited from a metropolitan teaching hospital. Group 1 included 44 young people with chronic illness; Group 2 included 41 young people without chronic illness. Both groups were divided on the basis of age: younger (12-18 years, n = 24); older (19-24 years, n = 61) and sex (female = 43; male = 42). Subjects completed the Achenbach self-report questionnaire as a measure of psychosocial functioning, and a second questionnaire constructed for this study to explore treatment adherence. Psychosocial functioning scores were found to be similar on the majority of subscales. Young women with chronic illness were, however, found to have significantly higher internalizing scores than young women without chronic illness. A significant negative relationship was found for the chronic illness group between internalizing scores and treatment adherence. The findings highlight potential areas of difficulty in psychosocial functioning of some young people with chronic illness. They also suggest the existence of a subgroup of young people with chronic illness who experience more problems than their peers. More research is needed to generate evidence about this possible subgroup to determine predictors of psychosocial functioning and test the timing and efficacy of psychosocial interventions.
2003
Rosina R; Crisp J; Steinbeck K
Nursing & Health Sciences
2003
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Journal Article
<a href="http://doi.org/10.1046/j.1442-2018.2003.00149.x" target="_blank" rel="noreferrer">10.1046/j.1442-2018.2003.00149.x</a>
Family beliefs regarding the nutritional care of a terminally ill relative: a qualitative study
Female; Humans; Male; Palliative Care; Adult; Canada; Middle Aged; Nutritional Support; Practice; adolescent; Non-U.S. Gov't; Research Support; Interviews; Terminally Ill/psychology; Attitudes; Family/psychology; Health Knowledge; Neoplasms/psychology/therapy; History; 18th Century
OBJECTIVE: To develop a conceptual model of family caregiver beliefs and behavior related to nutritional care of the terminally ill by examining the perspectives of family members, patients, and health care providers. DESIGN: Qualitative study using in-depth, open-ended, face to face interviews, participant observation, and content analysis. PARTICIPANTS: A total of 47 participants from 4 groups: hospitalized palliative patients with cancer (n = 13), family members of hospitalized palliative patients with cancer (n = 13), health care providers on a palliative care unit (n = 11), and bereaved family members who had previously experienced the death of a relative on a palliative care unit. OUTCOME MEASURES: Participant views on nutritional care in the terminal phases of illness. RESULTS: There is marked variability in the ways family members respond to a dying cachectic anorexic relative. The overarching theme of "doing what's best" captures this variability and integrates the major categories into the key analytic model emerging from this study. CONCLUSION: We have developed a conceptual model of family beliefs regarding the nutritional care of a hospitalized terminally ill relative. The model has implications for education, practice, and research regarding nutritional care in the palliative care setting.
2003
McClement SE; Degner LF; Harlos MS
Journal Of Palliative Medicine
2003
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Journal Article
<a href="http://doi.org/10.1089/109662103322515248" target="_blank" rel="noreferrer">10.1089/109662103322515248</a>
Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects
Cross-Sectional Studies; Female; Humans; Male; Adult; Canada; Practice; adolescent; Attitudes; Adolescent Transitions; Pediatrics/statistics & numerical data; Health Knowledge; Heart Defects; Congenital/therapy; Patient Transfer/statistics & numerical data; disabled children; Cardiology/statistics & numerical data; Continuity of Patient Care/statistics & numerical data
OBJECTIVES: More than 85% of children born today with chronic medical conditions will live to adulthood, and many should transfer from pediatric to adult health care. The numbers of adults with congenital heart defects (CHDs) are increasing rapidly. Current guidelines recommend that just over half of adult CHD patients should be seen every 12 to 24 months by a cardiologist with specific CHD expertise at a regional CHD center, because they are at risk for serious complications (eg, reoperation and/or arrhythmias) and premature mortality. The present study aimed to determine the percent of young adults with CHDs who successfully transferred from pediatric to adult care and examine correlates of successful transfer. DESIGN: Cross-sectional study with prevalence data from an entire cohort. SETTING AND PATIENTS: All patients (n = 360) aged 19 to 21 years with complex CHDs who, according to current practice guidelines, should be seen annually at a specialized adult CHD center were identified from the database of the cardiology program at the Hospital for Sick Children in Toronto, Canada, a pediatric tertiary care center. Of these patients, 234 completed measures about health beliefs, health behaviors, and medical care since age 18 years. MAIN OUTCOME MEASURE: All 15 specialized adult CHD centers in Canada formed the Canadian Adult Congenital Heart (CACH) Network. Attendance for at least 1 follow-up appointment at a CACH center before the age of 22 years was ascertained for all eligible patients. Attendance at a CACH center provides a clear criterion for successful transfer. RESULTS: In the total cohort, 47% (95% confidence interval [CI]: 42-52) had transferred successfully to adult care. There was no difference in rates of successful transfer between patients consenting to complete questionnaires (48%) and those who declined (47%). More than one quarter (27%) of the patients reported having had no cardiac appointments since 18 years. In multivariate analyses of the entire cohort, successful transfer was significantly associated with more pediatric cardiovascular surgeries (odds ratio [OR]: 2.47; 95% CI: 1.40-4.37), older age at last visit to the Hospital for Sick Children (OR: 1.29; 95% CI: 1.10-1.51), and documented recommendations in the medical chart for follow-up at a CACH center. In multivariate analyses of the patients completing questionnaires, successful transfer was significantly related to documented recommendations and patient beliefs that adult CHD care should be at a CACH center (OR: 3.64; 95% CI: 1.34-9.90). Comorbid conditions (OR: 3.13; 95% CI: 1.13-8.67), not using substances (eg, binge drinking; OR: 0.18; 95% CI: 0.07-0.50), using dental antibiotic prophylaxis (OR: 4.23; 95% CI: 1.48-12.06), and attending cardiac appointments without parents or siblings (OR: 6.59; 95% CI: 1.61-27.00) also correlated with successful transfer. CONCLUSIONS: This is the first study to document the percent of young adults with a chronic illness who successfully transfer to adult care in a timely manner. Patients were from an entire birth cohort from the largest pediatric cardiac center in Canada, and outcome data were obtained on all eligible patients. Similar data should be obtained for other chronic illnesses. There is need for considerable improvement in the numbers of young adults with CHDs who successfully transfer to adult care. At-risk adolescents with CHDs should begin the transition process before their teens, should be educated in the importance of antibiotic prophylaxis, should be contacted if a follow-up appointment is missed, and should be directed to a specific CHD cardiologist or program, with the planned timing being stated explicitly. Adult care needs to be discussed in the pediatric setting, and patients must acquire appropriate beliefs about adult care well before transfer. Developmentally appropriate, staged discussions involving the patient, with and without parents, throughout adolescence may help patients acquire these beliefs and an understanding of the need for ongoing care. Improved continuity of pediatric care and provision of clear details for adult follow-up might be sufficient to cause substantive improvements in successful transfer. An understanding of why patients drop out of pediatric care may be needed to improve the continuity of care throughout adolescence. Almost one quarter of the patients believed adult care should be somewhere other than at a CACH center despite opposite recommendations. For these patients, a single discussion of adult care during the final pediatric visit may be too little, too late. In addition to earlier discussions, multiple mechanisms such as referral letters and transition clinics are needed. Similarly, patients engaging in multiple risky or poor health behaviors such as substance use may need more intensive programs to make substantial changes in these behaviors, which hopefully would lead to successful transfer. Overall, these data support the view that transition to adult care (a planned process of discussing and preparing for transfer to an adult health center) is important and should begin well before patients are transferred. The future health of adults with chronic conditions may depend on our ability to make these changes.
2004
Irvine MJ; McCrindle BW; Sananes R; Ritvo PG; Siu SC; Webb GD
Pediatrics
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/10.1542/peds.113.3.e197" target="_blank" rel="noreferrer">10.1542/peds.113.3.e197</a>
Confidentiality in health care. A survey of knowledge, perceptions, and attitudes among high school students
Female; Humans; Male; Questionnaires; Massachusetts; Health Behavior; Emergency Service; Practice; adolescent; Hospital/utilization; Empirical Approach; Professional Patient Relationship; Attitudes; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Health Knowledge; Adolescent Health Services/utilization; Confidentiality; Community Health Centers/utilization; Physicians' Offices/utilization; School Health Services/utilization; Students
OBJECTIVE--To assess adolescent knowledge, perceptions, and attitudes about health care confidentiality. DESIGN--Anonymous self-report survey with 64 items addressing confidentiality issues in health care. SETTING--Rural, suburban, and urban high schools in central Massachusetts. PARTICIPANTS--Students in ninth through 12th grades from three schools. RESULTS--A total of 1295 students (87%) completed the survey: 58% had health concerns that they wished to keep private from their parents, and 69% from friends and classmates; 25% reported that they would forgo health care in some situations if their parents might find out. There were differences in response by gender, race, and school. About one third were aware of a right to confidentiality for specific health issues. Of those with a regular source of care, 86% would go to their regular physician for a physical illness, while only 57% would go there for questions about pregnancy, the acquired immunodeficiency syndrome, or substance abuse that they wished to keep private. Sixty-eight percent had concerns about the privacy of a school health center. CONCLUSIONS--A majority of adolescents have concerns they wish to keep confidential and a striking percentage report they would not seek health services because of these concerns. Interventions to address confidentiality issues are thus crucial to effective adolescent health care.
1993
Cheng TL; Savageau JA; Sattler AL; DeWitt TG
Jama
1993
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Journal Article
<a href="http://doi.org/10.1001/jama.269.11.1404" target="_blank" rel="noreferrer">10.1001/jama.269.11.1404</a>
Gender-specific factors in the utilization of medical services during adolescence
Female; Humans; Male; Parent-Child Relations; Health Services Accessibility; Socioeconomic Factors; Patient Acceptance of Health Care; Health Status; Sex Factors; Patient Satisfaction; Regression Analysis; Germany; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Adolescent Health Services/utilization; Discriminant Analysis
Although adolescents suffer from a variety of complaints, they do not often consult a doctor. Following a high rate of medical consultation during infancy and childhood, the rate dramatically decreases at the age of 10 and increases again around the age of 16. In this study we investigated factors that influence the use of medical services during adolescence. We focused our attention on gender-specific differences and examined the following hypotheses: (i) Girls and boys differ generally in their consultation behaviour; and (ii) the use of medical services depends on the kind of prevailing illness and is influenced by gender-specific factors. The investigation is based on a standardized questionnaire answered by 2300 schoolgirls and -boys, aged 12 to 16. The topics of the questionnaire were, apart from sociodemographic variables: subjective state of health; prevailing illnesses and complaints; health-related cognitions; quality of the parental relationship; stress at school; and satisfaction with previous medical treatment. The results showed that girls reported suffering significantly more frequently from most illnesses than boys. However, there was no difference between girls and boys in the general consultation rate. In a regression analysis we found that subjective impairment, satisfaction with the previous medical consultation and the tendency to be concerned with one's health were the best statistical predictors of consultation behaviour. Age, social status, sex, stress at school and the quality of the relationship between adolescents and their parents were not significantly related to consultation rate. A discriminant analysis (consultation vs. non-consultation) revealed that, depending on specific illnesses, different factors influenced the decision to consult a doctor.
1997
Settertobulte W; Kolip P
Journal Of Adolescence
1997
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Journal Article
<a href="http://doi.org/10.1006/jado.1996.0068" target="_blank" rel="noreferrer">10.1006/jado.1996.0068</a>
The Delphi technique: a comparison of results obtained using two expert panels
Humans; New South Wales; Delphi Technique; Job Description; Practice; Attitudes; Health Knowledge; Nursing; Nursing Administration Research; Professional Competence/standards; Supervisory/standards
The Delphi technique is a useful method of obtaining group consensus. However, "consensus" is not usually defined when this technique is used. This paper describes a study in which two panels of experts (registered nurses who were nurse managers or involved in management education) were asked to identify the competencies expected of first-line nurse managers using the Delphi technique. The results from both panels are compared. Prior to the commencement of the Delphi rounds a baseline mean of 3.00 ("agree" on the Likert scale used) was set for the inclusion of items. The level at which consensus was achieved was defined as the point at which 10% or less of the 168 competencies provided to the panel moved above or below this point of inclusion. A total of 156 of the 168 competencies (93%) presented to the two panels were either retained or rejected by both.
1993
Duffield C
International Journal Of Nursing Studies
1993
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Journal Article
<a href="http://doi.org/10.1016/0020-7489(93)90033-q" target="_blank" rel="noreferrer">10.1016/0020-7489(93)90033-q</a>
Use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units
Child; Humans; infant; Intensive Care Units; Analgesics; Neonatal; Practice; Pediatric; Attitudes; Newborn; Health Knowledge; Analgesia/utilization; Pain/prevention & control
The purpose of this study was to assess the use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units. The directors of 38 pediatric units and 31 neonatal units reported that analgesics were infrequently used for intravenous cannulation (10%), suprapubic bladder aspiration (8%), urethral catheterization (2%), or venipuncture (2%). Analgesics were used significantly more regularly in pediatric than in neonatal intensive care units for arterial line placement, bone marrow aspiration, central line placement, chest tube insertion, paracentesis, and lumbar puncture.
1992
Bauchner H; May A; Coates E
The Journal Of Pediatrics
1992
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Journal Article
<a href="http://doi.org/10.1016/s0022-3476(05)81164-3" target="_blank" rel="noreferrer">10.1016/s0022-3476(05)81164-3</a>
The Cardiovascular Health Education Program: assessing the impact on rural and urban adolescents' health knowledge
Female; Humans; Male; Program Evaluation; Educational Measurement; Practice; adolescent; Attitudes; Health Knowledge; Health Education/organization & administration; Cardiovascular Diseases/prevention & control; Newfoundland and Labrador; Rural Health Services/organization & administration; School Health Services/organization & administration; Urban Health Services/organization & administration
In this research study, a quasi-experimental, nonequivalent control group pretest-posttest design was used to assess the impact of the Cardiovascular Health Education Program (CHEP) on the cardiovascular health knowledge of grade eight adolescents. A total of 146 adolescents participated in study, with 88 in the experimental group and 58 in the control group. One-hundred two of the adolescents resided in a rural region and 44 resided in an urban region in the province of Newfoundland and Labrador, Canada. The findings from this study indicate that the CHEP did have a significant positive impact on the cardiovascular health knowledge of the rural adolescents, but it did not have a comparable impact on the cardiovascular health knowledge of the urban adolescents. The findings also indicate that there was no significant difference between rural and urban cardiovascular health knowledge prior to implementing the program. These findings support the need for implementation of the CHEP within this population. This study also shows that nurses can design, implement, and evaluate community-based health promotion programs for targeted populations.
1999
MacDonald SA
Applied Nursing Research
1999
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Journal Article
<a href="http://doi.org/10.1016/s0897-1897(99)80362-0" target="_blank" rel="noreferrer">10.1016/s0897-1897(99)80362-0</a>
End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses
Child; Cross-Sectional Studies; Humans; United States; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Questionnaires; Middle Aged; Attitude to Death; Multivariate Analysis; Hospitals; Analysis of Variance; Child Advocacy; Ethics; Medical; Nursing Staff; Practice; Pediatric; Empirical Approach; Death and Euthanasia; Attitudes; decision making; Health Knowledge; ICU Decision Making; Nursing; Pediatrics/methods; Critical Care/organization & administration/psychology; Hospital/education/psychology; Physician's Practice Patterns/organization & administration; Terminal Care/organization & administration/psychology
OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric hospitals in the United States. MEASUREMENTS AND MAIN RESULTS: The survey was completed by 110/130 (85%) physicians and 92/130 (71%) nurses. The statement that withholding and withdrawing life support is unethical was not endorsed by any of the physicians or nurses. More physicians (78%) than nurses (57%) agreed or strongly agreed that withholding and withdrawing are ethically the same (p < .001). Physicians were more likely than nurses to report that families are well informed about the advantages and limitations of further therapy (99% vs. 89%; p < .003); that ethical issues are discussed well within the team (92% vs. 59%; p < .0003), and that ethical issues are discussed well with the family (91% vs. 79%; p < .0002). On multivariable analyses, fewer years of practice in pediatric critical care was the only clinician characteristic associated with attitudes on end-of-life care dissimilar to the consensus positions reached by national medical and nursing organizations on these issues. There was no association between clinician characteristics such as their political or religious affiliation, practice-related variables such as the size of their intensive care unit or the presence of residents and fellows, and particular attitudes about end-of-life care. CONCLUSIONS: Nearly two-thirds of pediatric critical care physicians and nurses express views on end-of-life care in strong agreement with consensus positions on these issues adopted by national professional organizations. Clinicians with fewer years of pediatric critical care practice are less likely to agree with this consensus. Compared with physicians, nurses are significantly less likely to agree that families are well informed and ethical issues are well discussed when assessing actual practice in their intensive care unit. More collaborative education and regular case review on bioethical issues are needed as part of standard practice in the intensive care unit.
2001
Burns JP; Mitchell C; Griffith JL; Truog RD
Critical Care Medicine
2001
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/10.1097/00003246-200103000-00036" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00036</a>
Experiencing transitions: an emerging middle-range theory
Humans; Cultural Diversity; Health Status; Life Change Events; Helping Behavior; Outcome and Process Assessment (Health Care); Practice; quality of life; Adaptation; Psychological; Caregivers/psychology; Attitudes; Family/psychology; Health Knowledge; Health Care; Quality Indicators; Psychological Theory; nursing theory; Emigration and Immigration; Menopause/psychology; Nursing Care/methods/psychology/standards; Parenting/psychology
Changes in health and illness of individuals create a process of transition, and clients in transition tend to be more vulnerable to risks that may in turn affect their health. Uncovering these risks may be enhanced by understanding the transition process. As a central concept of nursing, transition has been analyzed, its components identified, and a framework to articulate and to reflect the relationship between these components has been defined. In this article, the previous conceptual analysis of transitions is extended and refined by drawing on the results of five different research studies that have examined transitions using an integrative approach to theory development. The emerging middle-range theory of transitions consists of types and patterns of transitions, properties of transition experiences, facilitating and inhibiting conditions, process indicators, outcome indicators, and nursing therapeutics. The diversity, complexity, and multiple dimensionality of transition experiences need to be further explored and incorporated in future research and nursing practice related to transitions.
2000
Meleis AI; Sawyer LM; Im EO; Hilfinger Messias DK; Schumacher K
Advances In Nursing Science
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00012272-200009000-00006" target="_blank" rel="noreferrer">10.1097/00012272-200009000-00006</a>
Dimensions of the role of the social worker in palliative care
Humans; Great Britain; Questionnaires; Professional-Family Relations; Professional Practice; Practice; Palliative Care/organization & administration; Attitudes; Health Knowledge; Social Work/organization & administration; Judgment; Anxiety/rehabilitation
There has been very little research focusing on the role of the social worker in a specialist palliative care service. A qualitative research methodology was used which sought to capture the essence of that role, as perceived by those carrying it out, rather than simply to approach it as a series of tasks. A specialist palliative care social worker was asked to describe her role in selected cases that she had worked with. The interviews were taped and transcribed. The data were then analysed for themes using the techniques of constant comparative analysis. The themes were grouped into six categories and a conceptual framework developed. This was then validated with four other experienced social workers. Integrating categories in the framework were knowing and working with limits and values and valuing. The four other categories, a family focus, being a team member, managing the environment and managing anxiety related to the everyday activities of the social worker. The results are discussed in relation to social work in other specialties and in relation to other professional roles in specialist palliative care. Further research is needed to add the perspective of the social worker's client to understanding of the role.
2000
Sheldon FM
Palliative Medicine
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1191/026921600701536417" target="_blank" rel="noreferrer">10.1191/026921600701536417</a>
Palliative care on the net: an online survey of health care professionals
Female; Male; Adult; Questionnaires; Aged; Middle Aged; Computer Communication Networks; Practice; Attitudes; Health Knowledge; Human; Databases; Periodicals; Attitude of Health Personnel; Attitude to Computers; Factual/utilization; Health Personnel/psychology/statistics & numerical data; Information Services/utilization; Internet/utilization; Nurses/psychology/statistics & numerical data; Online Systems/utilization; Pharmacists/psychology/statistics & numerical data; Physicians/psychology/statistics & numerical data; Terminal Care/statistics & numerical data
A survey was conducted to explore Internet use by palliative care health professionals (HCP). The survey was placed on the World Wide Web with an underlying database, and palliative care HCP were invited to participate via a palliative-care-related website, listserv, and newsletter. A total of 417 evaluable responses were received over a four-month period. Of these, 36% indicated they were from physicians and 30% from nurses, a third of respondents were practicing palliative care full time. Although 63% of respondents were from North America, regions from all over the world were represented. Eighty-eight percent of respondents were searching the Internet for clinical information, 80% were using email, 69% were accessing online medical journals, and 59% were subscribers to a palliative-care-related listserv or newsgroup. This survey illustrates the global outreach of the Internet and draws attention to the growing interest in the use of the Internet for education, research, and clinical use. Further development of online resources should address the needs of users. Evaluation of these resources is called for.
2001
Pereira J; Bruera E; Quan H
Journal Of Palliative Care
2001
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
Barriers to conducting advance care discussions for children with life-threatening conditions.
Child; Female; Humans; Male; United States; Adult; Medical Staff; Questionnaires; Hospitals; Practice; Pediatric; Attitudes; DNAR; DNAR Outcomes; Palliative Care/st [Standards]; Advance Care Planning/og [Organization & Administration]; Critical Illness/th [Therapy]; Attitude of Health Personnel; Communication Barriers; Health Knowledge; Medical Staff; Hospital/es [Ethics]; Hospital/px [Psychology]; Hospital/st [Standards]
BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this study was to identify barriers to conducting ACD for children with life-threatening conditions., METHODS: Physicians and nurses from practice settings where advance care planning typically takes place were surveyed to collect data regarding their attitudes and behaviors regarding ACD., RESULTS: A total of 266 providers responded to the survey: 107 physicians and 159 nurses (54% response rate). The top 3 barriers were: unrealistic parent expectations, differences between clinician and patient/parent understanding of prognosis, and lack of parent readiness to have the discussion. Nurses identified lack of importance to clinicians (P = .006) and ethical considerations (P < .001) as impediments more often than physicians. Conversely, physicians believed that not knowing the right thing to say (P = .006) was more often a barrier. There are also perceived differences among specialties. Cardiac ICU providers were more likely to report unrealistic clinician expectations (P < .001) and differences between clinician and patient/parent understanding of prognosis (P = .014) as common barriers to conducting ACD. Finally, 71% of all clinicians believed that ACD happen too late in the patient's clinical course., CONCLUSIONS: Clinicians perceive parent prognostic understanding and attitudes as the most common barriers to conducting ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and skills in addressing these barriers may help health care providers overcome perceived barriers.
Durall A; Zurakowski D; Wolfe J
Pediatrics
2012
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/10.1542/peds.2011-2695" target="_blank" rel="noreferrer">10.1542/peds.2011-2695</a>
An Online Educational Program Improves Pediatric Oncology Nurses' Knowledge, Attitudes, and Spiritual Care Competence
Computer-assisted Instruction/mt [methods]; Neoplasms/nu [nursing]; Nurse's Role; Oncology Nursing/ed [education]; Pediatric Nursing/ed [education]; Spiritual Therapies/nu [nursing]; Adult; Attitudes; Child; Female; Health Knowledge; Humans; Male; Practice; Prospective Studies
This study evaluated the potential impact of an online spiritual care educational program on pediatric nurses' attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life. It was hypothesized that the intervention would increase nurses' positive attitudes toward and knowledge of spiritual care and increase nurses' level of perceived spiritual care competence. A positive correlation was expected between change in nurses' perceived attitudes toward and knowledge of spiritual care and change in nurses' perceived spiritual care competence. A prospective, longitudinal design was employed, and analyses included one-way repeated-measures analysis of variance, linear regression, and partial correlation. Statistically significant differences were found in nurses' attitudes toward and knowledge of spiritual care and nurses' perceived spiritual care competence. There was a positive relationship between change scores in nurses' attitudes toward and knowledge of spiritual care and nurses' spiritual care competence. Online spiritual care educational programs may exert a lasting impact on nurses' attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life. Additional studies are required to evaluate the direct effects of educational interventions patient outcomes.
Petersen CL; Callahan MF; McCarthy DO; Hughes RG; White-Traut R; Bansal NK
Journal Of Pediatric Oncology Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1043454216646542" target="_blank" rel="noreferrer">10.1177/1043454216646542</a>