Psychologists in pediatric palliative care: Clinical care models within the United States
Pediatrics; Palliative Care; Collaboration; Models; Treatment Barriers; Clinical Models; Clinical Psychologists; Funding; Integrated Services; Roles
Objective: To examine the roles of psychologists in delivering pediatric palliative care (PPC) services, barriers and facilitators of psychologists’ involvement in PPC, and strategies to improve psychology integration into PPC. Method: N = 131 PPC professionals (45% physicians, 26% psychologists, 12% advanced practice nurses, 17% other disciplines) employed at hospitals serving pediatric patients across the United States completed an online survey. Results: Most psychologists who provide PPC services are members of a primary team that delivers palliative care independently or in collaboration with a specialized PPC program. Psychologists provide various services within the purview of PPC, including interventions to relieve children’s psychological and physical symptoms, support patient and family decision-making, and address grief and bereavement. Psychologists also commonly provide psychosocial support for health care providers and teach, supervise, and/or mentor trainees in PPC. Findings suggest a range of interrelated factors that influence integration of psychology in PPC, including funding, billing, time, training, institutional/departmental culture, quality of interdisciplinary collaborations, extent of psychosocial provider role differentiation, and perceptions of the value of psychology services. Strategies to improve integration included addressing funding, billing, and reimbursement challenges; expanding training and developing professional competencies for psychologists in PPC; optimizing communication and collaboration between psychologists and other PPC professionals; and conducting research on the value psychologists add to PPC teams. Conclusions: Pediatric psychologists provide a variety of important services to advance holistic care for children with life-limiting conditions and their families. Additional research examining the effectiveness of different models of psychology integration in PPC is warranted. (PsycInfo Database Record (c) 2021 APA, all rights reserved)
Hildenbrand AK; Amaro CM; Gramszlo C; Alderfer MA; Levy C; Ragsdale L; Wohlheiter K; Marsac ML
Clinical Practice in Pediatric Psychology
2021
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<a href="http://doi.org/10.1037/cpp0000402" target="_blank" rel="noreferrer noopener">10.1037/cpp0000402</a>
Palliative care: an international view
Terminal Care; Age Factors; Research; Models; Human; hospice care; Theoretical; Palliative Care/methods/standards
This review article addresses first the different palliative care models currently in use. Studies addressing the effectiveness of the models used are briefly summarized. Special attention is further given to models developed and tested in palliative care in children. Finally, the problems and pitfalls encountered in evaluating palliative care services are highlighted and recommendations are made where further research is still warranted.
2000
Abu-Saad HH
Patient Education And Counseling
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
Opioid dependence and addiction during opioid treatment of chronic pain
Humans; Analgesics; Models; Chronic disease; Opioid/adverse effects/therapeutic use; Neurological; Physician's Practice Patterns/trends; Brain/drug effects/physiopathology; Opioid-Related Disorders/etiology/physiopathology/prevention & control; Pain/drug therapy/physiopathology/psychology
Throughout the long history of opioid drug use by humans, it has been known that opioids are powerful analgesics, but they can cause addiction. It has also been observed, and is now substantiated by multiple reports and studies, that during opioid treatment of severe and short-term pain, addiction arises only rarely. However, when opioids are extended to patients with chronic pain, and therapeutic opioid use is not confined to patients with severe and short-lived pain, compulsive opioid seeking and addiction arising directly from opioid treatment of pain become more visible. Although the epidemiological evidence base currently available is rudimentary, it appears that problematic opioid use arises in some fraction of opioid-treated chronic pain patients, and that problematic behaviors and addiction are problems that need to be addressed. Since the potentially devastating effects of addiction can substantially offset the benefits of opioid pain relief, it seems timely to reexamine addiction mechanisms and their relevance to the practice of long-term opioid treatment for pain. This article reviews the neurobiological and genetic basis of addiction, its terminology and diagnosis, the evidence on addiction rates during opioid treatment of chronic pain and the implications of biological mechanisms in formulating rational opioid treatment regimes.
2007
Ballantyne JC; LaForge KS
Pain
2007
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Journal Article
<a href="http://doi.org/10.1016/j.pain.2007.03.028" target="_blank" rel="noreferrer">10.1016/j.pain.2007.03.028</a>
Beta-endorphin mediates behavioral despair and the effect of ethanol on the tail suspension test in mice.
Female; Male; Behavior; Animals; Mice; Stress; Adaptation; Models; Sex Characteristics; Animal; Psychological/physiology; Animal/physiology; beta-Endorphin/physiology; beta-Endorphin/genetics; Central Nervous System Depressants/pharmacology; Depression/physiopathology; Ethanol/pharmacology; Hindlimb Suspension/psychology; Psychological/physiopathology; Psychological/psychology; Transgenic
Background: The opioid peptide beta-endorphin (beta-E) is synthesized and released in response to stressful stimuli as well as acute alcohol administration. The release of beta-E following exposure to an inescapable aversive situation may mediate behaviors that contribute to allostasis of the stress response. The present study examines the effects of beta-E on immobility in assays involving inescapable stress, both under basal conditions and after acute administration of EtOH.; Methods: Female and male transgenic mice with varying capacities to translate beta-E were subjected to either the forced swim (FST, Experiment 1) or the tail suspension test (TST, Experiment 2). In Experiment 3, mice were divided into three groups based on hormonal status (male, female-estrous, and female-nonestrous) and injected with either 1 g/kg EtOH or equivolume saline 14 minutes prior to behavioral assessment on the TST.; Results: Experiments 1 and 2 demonstrated a direct relationship between beta-E levels and immobility. There were also sex differences in behavior in these tests, with males displaying more immobility than females. A main effect of genotype in Experiment 3 replicated findings in Experiments 1 and 2. There was also an effect of EtOH (increasing immobility) and a significant interaction reflecting a particularly robust effect of the drug in mice with low beta-E. In addition, there were interactions between beta-E, EtOH effects, and hormonal status.; Conclusions: These findings support the contention that beta-E moderates behavioral responses to stressful stimuli and suggest a role for this peptide in coping behavior. Furthermore, the effects of EtOH on the response to stress may be mediated by beta-E. Sex differences in this influence may contribute to sex differences in disease susceptibility and expression.;
2010-06
Barfield ET; Barry SM; Hodgin HB; Thompson BM; Allen SS; Grisel JE
Alcoholism, Clinical And Experimental Research
2010
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Journal Article
<a href="http://doi.org/10.1111/j.1530-0277.2010.01182.x" target="_blank" rel="noreferrer">10.1111/j.1530-0277.2010.01182.x</a>
Continuity of care: an approach to measurement
Hospitalization; Humans; Questionnaires; Follow-Up Studies; Prospective Studies; Communication; Psychotherapy; Comprehensive Health Care; Medical Records; Ambulatory Care; Models; referral and consultation; Theoretical; Community Mental Health Services; Evaluation Studies as Topic; Community Psychiatry; Day Care; Mental Disorders/therapy; Transfer Agreement
1972
Bass RD; Windle C
The American Journal Of Psychiatry
1972
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Journal Article
<a href="http://doi.org/10.1176/ajp.129.2.196" target="_blank" rel="noreferrer">10.1176/ajp.129.2.196</a>
Adolescent sibling bereavement as a catalyst for spiritual development: a model for understanding.
Female; Humans; Male; Adolescent Psychology; Spirituality; Religion and Psychology; Sibling Relations; adolescent; Psychological; bereavement; Models; sibling bereavement; Interview; T
While our understanding of adolescent bereavement has greatly expanded in recent years, one area yet to be clarified is the relationship between grief following a significant loss and spirituality. This article strengthens our understanding of this connection in two ways. First, the authors present a conceptual model explaining how developmental changes in cognitive capacity during the adolescent life stage make it possible to challenge one's beliefs and search for new meaning. The crisis of experiencing the death of a sibling during this period has the potential, then, of serving as a catalyst for enhanced spirituality--defined as a quest for new meaning. Secondly, interviews with four adolescents following the death of a sibling add more detailed understanding of that quest for meaning. Quotations drawn from these interviews illustrate these young persons' shifting perspective of self, others, the sibling relationship, a higher power, death, and life.
1999-09
Batten M; Oltjenbruns KA
Death Studies
1999
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Journal Article
Supportive care: palliative care in children, adolescents, and young adults--model of care, interventions, and cost of care: a retrospective review
Child; Female; Male; Adult; Hospitals; Health Care Costs; Pediatric; adolescent; retrospective studies; Intervention; Interventions; Philadelphia; Human; Nursing; Models; Palliative Care/economics/organization & administration
2000
Belasco JB; Danz P; Drill A; Schmid W; Burkey E
Journal Of Palliative Care
2000
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Journal Article
Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services.
Humans; Terminal Care; Advance Directives; Victoria; Qualitative Research; Health Services Research; Nursing Staff; advance care planning; DNAR; Palliative Care; Organizational; Models; Community Health Services; Program Evaluation/mt [Methods]; Community Health Services/og [Organization & Administration]
AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by completion rate of advance directives or plans. This outcome measure provides little information to assist nurse managers to embed advance care planning into usual care and measure their performance and quality over time. An evaluation tool was developed to address this need in Australian community palliative care services., DESIGN: Multisite action research approach., METHODS: Three community palliative care services located in Victoria, Australia, participated. Qualitative and quantitative data collection strategies were used to develop the Advance Care Planning-Service Evaluation Tool., RESULTS: The Advance Care Planning-Service Evaluation Tool identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used by nurses either as a peer-assessment or self-assessment tool that assisted services to track their implementation progress as well as plan further change strategies., CONCLUSION: The Advance Care Planning-Service Evaluation Tool was useful to nurse managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes., RELEVANCE TO CLINICAL PRACTICE: The Advance Care Planning-Service Evaluation Tool enables nurses in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care. As the tool describes generic healthcare processes, there is potential transferability of the tool to other types of services.Copyright © 2012 Blackwell Publishing Ltd.
Blackford J; Street A
Journal Of Clinical Nursing
2012
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2012.04179.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2012.04179.x</a>
Is an advance care planning model feasible in community palliative care? A multi-site action research approach.
Female; Humans; Male; Advance Directives; Adult; Victoria; Aged; Middle Aged; Program Evaluation; Urban Population; 80 and over; DNAR; Organizational; Palliative Care/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; Advance Care Planning/og [Organization & Administration]; Models; Community Health Services/og [Organization & Administration]; Rural Population
AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide commitment and preparedness for health service reform to embed advance care planning into routine practice. Internationally, such programmes have been implemented predominantly in aged and acute care with more recent work in primary care., METHODS: A multi-site action research was conducted over a 16-month period in 2007-2009 with three Victorian community palliative care services. Using mixed method data collection strategies to assess feasibility, we conducted a baseline audit of staff and clients; analysed relevant documents (client records, policies, procedures and quality improvement strategies) pre-implementation and post-implementation and conducted key informant interviews (n = 9)., SETTINGS AND PARTICIPANTS: Three community palliative care services: one regional and two metropolitan services in Victoria, Australia., RESULTS: The services demonstrated that it was feasible to embed the Model into their organizational structures. Advance care planning conversations and involvement of family was an important outcome measure rather than completion rate of advance care planning documents in community settings. Services adapted and applied their own concept of community, which widened the impact of the model. Changes to quality audit processes were essential to consolidate the model into routine palliative care practice., CONCLUSION: An advance care planning model is feasible for community palliative care services. Quality audit processes are an essential component of the Model with documentation of advance care planning discussion established as an important outcome measure.Copyright © 2011 Blackwell Publishing Ltd.
Blackford J; Street A
Journal Of Advanced Nursing
2012
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2648.2011.05892.x" target="_blank" rel="noreferrer">10.1111/j.1365-2648.2011.05892.x</a>
Enabling the transition to hospice through effective palliative care
Humans; Prognosis; Needs Assessment; Organizational Objectives; quality of life; Models; Chronic disease; Life Expectancy; Attitude to Death/ethnology; Case Management/organization & administration; Continuity of Patient Care/organization & Disease Progression; Hospice Care/organization & administration/psychology; Organizational; Palliative Care/organization & Professional Role; Referral and Consultation/organization & United States
The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed by society as "failure" and even "optional." Too often, referral to hospice has come too late to be sufficiently effective. While expertise in palliation of pain and symptoms at the end of life has been developed, palliative care has not been well integrated with management of chronic diseases or incorporated into the continuum of medical management from health and wellness to the end of life. We can, and must, do better.
2005
Bomba PA
The Case Manager
2005
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Journal Article
<a href="http://doi.org/10.1016/j.casemgr.2004.11.005" target="_blank" rel="noreferrer">10.1016/j.casemgr.2004.11.005</a>
Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events?
Humans; Grief; Adult; Emotions; Adaptation; Psychological; Models; Wounds and Injuries/psychology; Laughter; Repression
Many people are exposed to loss or potentially traumatic events at some point in their lives, and yet they continue to have positive emotional experiences and show only minor and transient disruptions in their ability to function. Unfortunately, because much of psychology's knowledge about how adults cope with loss or trauma has come from individuals who sought treatment or exhibited great distress, loss and trauma theorists have often viewed this type of resilience as either rare or pathological. The author challenges these assumptions by reviewing evidence that resilience represents a distinct trajectory from the process of recovery, that resilience in the face of loss or potential trauma is more common than is often believed, and that there are multiple and sometimes unexpected pathways to resilience.
2004
Bonanno GA
The American Psychologist
2004
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Journal Article
<a href="http://doi.org/10.1037/0003-066X.59.1.20" target="_blank" rel="noreferrer">10.1037/0003-066X.59.1.20</a>
On the robustness of LISREL (maximum likelihood estimation) against small sample size and non-normality
Models; statistical
Boomsma A
1983
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Book/Book Section
On the mathematical modelling of pain
Humans; Analgesia; Reproducibility of Results; Animals; Models; Pain/physiopathology; Axons/physiology; Nerve Net/physiology; Neurological; Neuronal Plasticity; Neurons/physiology; Theoretical
In this review a case is presented for the use of mathematical modelling in the study of pain. The philosophy of mathematical modelling is outlined and a recommendation is made for the use of modern nonlinear techniques and computational neuroscience in the modelling of pain. Classic and more recent examples of modelling in neurobiology in general and pain in particular, at three different levels-molecular, cellular and neural networks-are described and evaluated. Directions for further progress are indicated, particularly in plasticity and in modelling brain mechanisms. Major advantages of mathematical modelling are that it can handle extremely complex theories and it is non-invasive, and so is particularly valuable in the investigation of chronic pain.
1996
Britton NF; Skevington SM
Neurochemical Research
1996
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Journal Article
<a href="http://doi.org/10.1007/bf02532424" target="_blank" rel="noreferrer">10.1007/bf02532424</a>
Models of Pediatric Palliative Oncology Outpatient Care-Benefits, Challenges, and Opportunities
models; oncology; outpatient care; Pediatric palliative care
PURPOSE: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the outpatient and home settings. As integrated PPC/pediatric oncology becomes the standard of care, novel pediatric palliative oncology (PPO) outpatient models are emerging. The optimal PPO model is unknown and likely varies on the basis of institutional culture, resources, space, and personnel. METHODS: We review five institutions' unique outpatient PPO clinical models with their respective benefits and challenges. This review offers pragmatic guidance regarding PPO clinic development, implementation, and resource allocation. RESULTS: Specific examples include a floating clinic model, embedded disease-specific PPC experts, embedded consultative or trigger-based supportive care clinics, and telehealth clinics. CONCLUSION: Organizations that have overcome personnel, funding, and logistical challenges can serve as role models for centers developing PPO clinic models. In the absence of a one-size-fits-all model, pediatric oncology and PPC groups can select, tailor, and implement the model that best suits their respective personnel, needs, and capacities. Emerging PPO clinics must balance the challenges and opportunities unique to their organization, with the goal of providing high-quality PPC for children with cancer and their families.
Brock K E; Snaman J M;Kaye E C; Bower K A; Weaver M S; Baker J N; Wolfe J; Ullrich C
Journal of Oncology Practice
2019
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<a href="http://doi.org/10.1200/jop.19.00100" target="_blank" rel="noreferrer noopener">10.1200/jop.19.00100</a>
Advanced illness index: Predictive modeling to stratify elders using self-report data
Female; Humans; Male; Terminally Ill; Aged; Severity of Illness Index; Risk Assessment; Self Disclosure; Forecasting; 80 and over; Models; retrospective studies; Health Surveys; Theoretical
OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study with a 3-year observation period. SETTING: Integrated, not-for-profit managed care organization. Participants: Beneficiaries aged 65-105 responding to an annual survey (n = 4888). MEASUREMENTS: Survey instrument includes physical function, geriatric syndromes, health care utilization, special equipment use, self-care deficits, caregiving responsibilities, and general health problems. RESULTS: An 11-variable model changed the baseline chi2 from 315.71 (df = 1) to 742.511 (df = 11). The percent of subjects correctly classified was 74.3% and the negative predictive value was 92.2%. CONCLUSION: Advanced Illness Index (AII) model is stable. Characteristic variables used are not easily reversed: the 1997 cohort classified as at-risk consistently remained at risk or died in the subsequent years (1998, 92%; and 1999, 96%) and 92% of those not at-risk survived the next 36 months. Persons at high risk should at a minimum be made aware of the types of integrated home and community-based services available to them should it be needed. They also should be targeted for elicitation of treatment preferences, values, designation of health care proxy, planning, and advanced care directives.
2006
Brody KK; Perrin NA; Dellapenna R
Journal Of Palliative Medicine
2006
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Journal Article
<a href="http://doi.org/10.1089/jpm.2006.9.1310" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.1310</a>
Gender differences in parenting a child with cancer
Child; Female; Humans; Male; Adult; Attitude to Health; Parent-Child Relations; Questionnaires; adolescent; Preschool; Adaptation; Psychological; Models; Parents/psychology; Parent caregivers; Gender Identity; Neoplasms/psychology; Parenting/psychology; Socialization
This study of 124 parents of children diagnosed with cancer investigates parents' perceptions of their role in the illness situation. The study found that mothers and fathers differ in their experience of and response to parenting a child with cancer. These differences appear to reflect traditional parenting roles characterized by a gender-based division of labor. Sex-role socialization theory is discussed as an explanatory model of the parenting experience. Practice recommendations are offered to medical social workers and other health care professionals concerned about the long term psychosocial adjustment of parents with chronically ill children.
1996
Brown KA; Barbarin OA
Social Work In Health Care
1996
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Journal Article
<a href="http://doi.org/10.1300/j010v22n04_04" target="_blank" rel="noreferrer">10.1300/j010v22n04_04</a>
Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease
Humans; United States; Adult; Needs Assessment; Professional-Patient Relations; Self Care; Internet; adolescent; Models; Adolescent Transitions; Continuity of Patient Care/organization & administration; Chronic Disease/therapy; Adolescent Health Services/organization & administration; disabled children; Organizational
Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that eventually they will require care that focuses on adult health issues. Providers in the United States and around the world are recognizing the need for coordinated processes to transition adolescents and young adults with chronic conditions to adult health care. These models rely on the participation and input of the adolescent, his or her family, and pediatric and adult health professionals. This paper distinguishes medical transition from medical transfer; discusses potential barriers to transition; examines new initiatives to develop and study transition models; and reviews federal legislation influencing health care transitions.
2001
Callahan ST; Winitzer RF; Keenan P
Current Opinion In Pediatrics
2001
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Journal Article
<a href="http://doi.org/10.1097/00008480-200108000-00004" target="_blank" rel="noreferrer">10.1097/00008480-200108000-00004</a>
Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents
Cantwell-Bartl A
Death Studies
2018
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<a href="http://doi.org/10.1080/07481187.2017.1407380" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1407380</a>
Sibling death and death fear in relation to depressive symptomatology in older adults
Female; Humans; Male; bereavement; Aged; Attitude to Death; Age Factors; Socioeconomic Factors; Adjustment Disorders; Fear; Sibling Relations; Psychometrics; Personality Inventory; Survivors; Family Characteristics; 80 and over; Psychological; Models; sibling bereavement; Object Attachment
Previously overlooked factors in elders' depressive symptomatology were examined, including death fear, sibling death, and sibling closeness. Participants were 150 elders (61 men, 89 women) aged 65-97 years with at least one sibling. Measures were proportion of deceased siblings, sibling closeness, the Death Fear Subscale of the Death Attitude Profile-Revised, and the Center for Epidemiological Studies-Depression scale (20-item adult form). Age and education were exogenous variables in a structural equation model. Death fear, sibling closeness, and proportion of dead siblings were directly related to depression, with path coefficients of .42, -.24, and .13, respectively. Proportion of dead siblings had indirect effects on depression, as did age and education. Depressive symptomatology in old age is influenced by death fear related to sibling death as well as by poor relationships with them; it must be understood within a situational context including death fear and sibling relationships.
2009-01
Cicirelli VG
The Journals Of Gerontology. Series B, Psychological Sciences And Social Sciences
2009
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Journal Article
<a href="http://doi.org/10.1093/geronb/gbn024" target="_blank" rel="noreferrer">10.1093/geronb/gbn024</a>
Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis
Child; Female; Humans; Male; Prospective Studies; Self Concept; Longitudinal Studies; Sick Role; Social Adjustment; Conflict (Psychology); Motivation; Body Image; Stress; adolescent; Adaptation; Psychological; Models; Family/psychology; Statistical; Adolescent Transitions; Parents/psychology; Psychological/complications; Social Behavior; Educational Status; Individuation; Intelligence; Spinal Dysraphism/psychology
OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This prospective longitudinal study includes 68 families of children with spina bifida and 68 comparison families of healthy children. Multimethod, multiinformant data were evaluated via optimal data analysis (ODA) and classification tree analysis (CTA) techniques. RESULTS: Factors best predicting psychosocial adaptation in early adolescence included (a) intrinsic motivation, (b) estimated verbal IQ, (c) behavioral conduct, (d) coping style, and (e) physical appearance. There were no significant group (spina bifida vs. able-bodied) effects. CONCLUSIONS: The final classification model correctly classified 77.8% of the total sample, indicating that this model had significant predictive capabilities. Results suggested that processes leading to psychosocial adaptation may be similar for youth with and without chronic illness.
2006
Coakley RM; Holmbeck GN; Bryant FB
Journal of Pediatric Psychology
2006
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj032" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj032</a>
A home for medically complex children: the role of hospital programs
Child; Humans; home care services; Health Services Needs and Demand; Continuity of Patient Care; Models; Organizational; Disease Management; Hospitalized; Hospital-Based
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.
2008
Cohen E; Friedman J; Nicholas DB; Adams S; Rosenbaum P
Journal For Healthcare Quality
2008
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Journal Article
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">10.1111/j.1945-1474.2008.tb01137.x</a>
Designing a mixed methods study in primary care
Humans; Qualitative Research; Research Design; Primary Health Care; Models; Multi-site Ethics; Theoretical; Health Services Research/methods
BACKGROUND: Mixed methods or multimethod research holds potential for rigorous, methodologically sound investigations in primary care. The objective of this study was to use criteria from the literature to evaluate 5 mixed methods studies in primary care and to advance 3 models useful for designing such investigations. METHODS: We first identified criteria from the social and behavioral sciences to analyze mixed methods studies in primary care research. We then used the criteria to evaluate 5 mixed methods investigations published in primary care research journals. RESULTS: Of the 5 studies analyzed, 3 included a rationale for mixing based on the need to develop a quantitative instrument from qualitative data or to converge information to best understand the research topic. Quantitative data collection involved structured interviews, observational checklists, and chart audits that were analyzed using descriptive and inferential statistical procedures. Qualitative data consisted of semistructured interviews and field observations that were analyzed using coding to develop themes and categories. The studies showed diverse forms of priority: equal priority, qualitative priority, and quantitative priority. Data collection involved quantitative and qualitative data gathered both concurrently and sequentially. The integration of the quantitative and qualitative data in these studies occurred between data analysis from one phase and data collection from a subsequent phase, while analyzing the data, and when reporting the results. DISCUSSION: We recommend instrument-building, triangulation, and data transformation models for mixed methods designs as useful frameworks to add rigor to investigations in primary care. We also discuss the limitations of our study and the need for future research.
2004
Creswell JW; Fetters MD; Ivankova NV
Annals Of Family 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/10.1370/afm.104" target="_blank" rel="noreferrer">10.1370/afm.104</a>
Weaving for the future: using rulers and roses
Humans; Leadership; Nurse's Role; Organizational Objectives; Evidence-Based Medicine; Forecasting; Models; Administration; Nursing; Nursing Process; Biomedical; Nursing Research/organization &; Oncologic Nursing/education/organization &; Technology Assessment
2001
Davies B
Canadian Oncology Nursing Journal
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/10.5737/1181912x113118122" target="_blank" rel="noreferrer">10.5737/1181912x113118122</a>
The final step in programmed cell death: phagocytes carry apoptotic cells to the grave.
Animals; Models; Receptors; Signal Transduction; Molecular; Inflammation/metabolism; Apoptosis; Phagocytosis; Biological; Caenorhabditis elegans/genetics; Cell Surface/me [Metabolism]; Drosophila melanogaster/genetics; Evolution; Mice/genetics; Phagocytes/physiology
As cells undergo apoptosis, they are recognized and removed from the body by phagocytes. This oft-overlooked yet critical final step in the cell-death programme protects tissues from exposure to the toxic contents of dying cells and also serves to prevent further tissue damage by stimulating production of anti-inflammatory cytokines and chemokines. The clearance of apoptotic-cell corpses occurs throughout the lifespan of multicellular organisms and is important for normal development during embryogenesis, the maintenance of normal tissue integrity and function, and the resolution of inflammation. Many of the signal-transduction molecules implicated in the phagocytosis of apoptotic cells appear to have a high degree of evolutionary conservation, and therefore the engulfment of apoptotic cells is likely to represent one of the most primitive forms of phagocytosis. With the realization that the signals that govern apoptotic-cell removal also serve to attenuate inflammation and the immune response, as well as initiate signals for tissue repair and remodelling in response to cell death, the study of apoptotic cell clearance is a field experiencing a dynamic increase in interest and momentum.
2003
deCathelineau AM; Henson PM
Essays In Biochemistry
2003
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Journal Article
<a href="http://doi.org/10.1042/bse0390105" target="_blank" rel="noreferrer">10.1042/bse0390105</a>
Transition to adult services for children and young people with palliative care needs: a systematic review
Humans; Young Adult; adolescent; Palliative Care/organization & administration; Models; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Delivery of Health Care/organization & administration; Organizational; Evidence-Based Medicine/methods; Health Services Research/methods/standards
OBJECTIVE: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. DESIGN: Systematic review. SETTING: Child and adult services and interface between healthcare providers. PATIENTS: Young people aged 13-24 years with palliative care conditions in the process of transition. MAIN OUTCOME MEASURES: Young people and their families' experiences of transition, the process of transition between services and its impact on continuity of care and models of good practice. RESULTS: 92 studies included. Papers on transition services were of variable quality when applied to palliative care contexts. Most focussed on common life-threatening and life-limiting conditions. No standardised transition program identified and most guidelines used to develop transition services were not evidence-based. Most studies on transition programs were predominantly condition-specific (eg, cystic fibrosis (CF), cancer) services. CF services offered high-quality transition with the most robust empirical evaluation. There were differing condition-dependent viewpoints on when transition should occur but agreement on major principles guiding transition planning and probable barriers. There was evidence of poor continuity between child and adult providers with most originating from within child settings. CONCLUSIONS: Palliative care was not, in itself, a useful concept for locating transition-related evidence. It is not possible to evaluate the merits of the various transition models for palliative care contexts, or their effects on continuity of care, as there are no long-term outcome data to measure their effectiveness. Use of validated outcome measures would facilitate research and service development.
Doug M; Adi Y; Williams J; Paul M; Kelly D; Petchey R; Carter YH
Archives Of Disease In Childhood
2011
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Journal Article
<a href="http://doi.org/10.1136/adc.2009.163931" target="_blank" rel="noreferrer">10.1136/adc.2009.163931</a>
Mutations in capillary morphogenesis gene-2 result in the allelic disorders juvenile hyaline fibromatosis and infantile systemic hyalinosis
Child; Female; Humans; Male; Mutation; P.H.S.; Research Support; U.S. Gov't; Syndrome; infant; Models; Pedigree; Membrane Proteins/genetics; Base Sequence; Amino Acid Sequence; Exons; Genes; Recessive; Missense; Molecular; Chromosome Mapping; Fibroma/genetics; Genetic Markers; Focal/genetics; Glomerulosclerosis; Protein Conformation; Protein Structure; Secondary
Juvenile hyaline fibromatosis (JHF) and infantile systemic hyalinosis (ISH) are autosomal recessive syndromes of unknown etiology characterized by multiple, recurring subcutaneous tumors, gingival hypertrophy, joint contractures, osteolysis, and osteoporosis. Both are believed to be allelic disorders; ISH is distinguished from JHF by its more severe phenotype, which includes hyaline deposits in multiple organs, recurrent infections, and death within the first 2 years of life. Using the previously reported chromosome 4q21 JHF disease locus as a guide for candidate-gene identification, we identified and characterized JHF and ISH disease-causing mutations in the capillary morphogenesis factor-2 gene (CMG2). Although CMG2 encodes a protein upregulated in endothelial cells during capillary formation and was recently shown to function as an anthrax-toxin receptor, its physiologic role is unclear. Two ISH family-specific truncating mutations, E220X and the 1-bp insertion P357insC that results in translation of an out-of-frame stop codon, were generated by site-directed mutagenesis and were shown to delete the CMG-2 transmembrane and/or cytosolic domains, respectively. An ISH compound mutation, I189T, is predicted to create a novel and destabilizing internal cavity within the protein. The JHF family-specific homoallelic missense mutation G105D destabilizes a von Willebrand factor A extracellular domain alpha-helix, whereas the other mutation, L329R, occurs within the transmembrane domain of the protein. Finally, and possibly providing insight into the pathophysiology of these diseases, analysis of fibroblasts derived from patients with JHF or ISH suggests that CMG2 mutations abrogate normal cell interactions with the extracellular matrix.
2003
Dowling O; Difeo A; Ramirez MC; Tukel T; Narla G; Bonafe L; Kayserili H; Yuksel-Apak M; Paller AS; Norton K; Teebi AS; Grum-Tokars V; Martin GS; Davis GE; Glucksman MJ; Martignetti JA
American Journal Of Human Genetics
2003
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Journal Article
<a href="http://doi.org/10.1086/378781" target="_blank" rel="noreferrer">10.1086/378781</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>
The consultant and the patient-physician relationship. A trilateral deliberative model
Humans; United States; Physician-Patient Relations; Family; Communication; Physicians; Physician's Role; Interprofessional Relations; Continuity of Patient Care; Primary Health Care; Professional Patient Relationship; Psychological; Analytical Approach; Models; referral and consultation
1994
Emanuel LL; Richter J
Archives Of Internal Medicine
1994
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Journal Article
<a href="http://doi.org/10.1001/archinte.1994.00420160016003" target="_blank" rel="noreferrer">10.1001/archinte.1994.00420160016003</a>
Adjustment to chronic pain: the role of pain acceptance, coping strategies, and pain-related cognitions
Female; Humans; Male; Pain; Adult; Chronic disease; Aged; Middle Aged; Culture; Sick Role; Sex Factors; Activities of Daily Living; Depression; Internal-External Control; Psychometrics; Personality Inventory; Anxiety; Behavior Therapy; Adaptation; Psychological; Models; Statistical; Helplessness; Learned; Software; Mathematical Computing
BACKGROUND: Previous research has found that acceptance of pain is more successful than coping variables in predicting adjustment to pain. PURPOSE: To compare the influence of acceptance, pain-related cognitions and coping in adjustment to chronic pain. METHODS: One hundred seventeen chronic pain patients attending the Clinical Pain Unit were administered a battery of questionnaires assessing pain acceptance, active and passive coping, pain-related cognitions, and adjustment. RESULTS: The influence of acceptance, coping, and cognition on all the adjustment variables was considered simultaneously via Structural Equation Modeling using LISREL 8.30 software. A multigroup analysis showed that the male and female samples did not significantly differ regarding path coefficients. The final model showed that acceptance of pain determined functional status and functional impairment. However, coping measures had a significant influence on measures of emotional distress. Catastrophizing self-statements significantly influenced reported pain intensity and anxiety; resourcefulness beliefs had a negative and significant influence on depression. CONCLUSIONS: These findings suggest that acceptance may play a critical role in the maintenance of functioning and, with this aim, acceptance-based treatments are promising to avoid the development of disability. They also lend support to the role of control beliefs and of active coping to maintain a positive mood. Acceptance and coping are presented as complementary approaches.
2007-04
Esteve R; Ramírez-Maestre C; López-Marínez AE
Annals Of Behavioral Medicine: A Publication Of The Society Of Behavioral Medicine
2007
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Journal Article
<a href="http://doi.org/10.1080/08836610701309724" target="_blank" rel="noreferrer">10.1080/08836610701309724</a>
Structural equation modeling with longitudinal data: strategies for examining group differences and reciprocal relationships
Female; Humans; Male; Cohort Studies; Follow-Up Studies; Peer Group; Longitudinal Studies; adolescent; Models; Statistical; Anger; Gender Identity; Personality Inventory/statistics & numerical data; Alcohol Drinking/epidemiology/psychology; Alcoholism/epidemiology/psychology
This article describes the use of structural equation modeling with latent variables to examine group differences and test competing models about cause-effect relationships in passive longitudinal designs. This approach is compared with several other statistical methods including analysis of cross-lagged panel correlations, regression analysis, and path analysis. The mechanics and advantages of structural equation modeling are illustrated using an example based on a 3-wave longitudinal study of adolescents' alcohol use. Within this example, the generalizability of the measurement model and structural model are assessed across gender and time, and competing models about the causes and consequences of adolescents' alcohol use are tested. The article concludes with a discussion of some of the strengths and limitations of using structural equation modeling with longitudinal data.
1994
Farrell AD
Journal Of Consulting And Clinical Psychology
1994
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Journal Article
<a href="http://doi.org/10.1037//0022-006x.62.3.477" target="_blank" rel="noreferrer">10.1037//0022-006x.62.3.477</a>
Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study
Child; Female; Humans; infant; Male; Young Adult; Cohort Studies; Patient Discharge; Pediatrics; Hospital Mortality; Logistic Models; Prognosis; adolescent; Preschool; infant; Models; Newborn; retrospective studies; Theoretical; mortality; Pennsylvania/epidemiology
BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To develop a prognostication models using administratively available data to predict the probability of in-hospital and 1-year postdischarge death. METHODS: Retrospective cohort study of 0-21 year old patients admitted to Pennsylvania hospitals from 1994-2001 and followed for 1-year postdischarge mortality, assessing logistic regression models ability to predict in-hospital and 1-year postdischarge deaths. RESULTS: Among 678,365 subjects there were 2,202 deaths that occurred during the hospitalization (0.32% of cohort) and 860 deaths that occurred 365 days or less after hospital discharge (0.13% of cohort). The model predicting hospitalization deaths exhibited a C statistic of 0.91, with sensitivity of 65.9% and specificity of 92.9% at the 99th percentile cutpoint; while the model predicting 1-year postdischarge deaths exhibited a C statistic of 0.92, with sensitivity of 56.1% and specificity of 98.4% at the 99th percentile cutpoint. CONCLUSIONS: Population-level mortality prognostication of hospitalized children using administratively available data is feasible, assisting the comparison of health care services delivered to children with the highest probability of dying during and after a hospital admission.
2009
Feudtner C; Hexem KR; Shabbout M; Feinstein JA; Sochalski J; Silber JH
Journal Of Palliative Medicine
2009
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Journal Article
<a href="http://doi.org/10.1089/jpm.2008.0206" target="_blank" rel="noreferrer">10.1089/jpm.2008.0206</a>
Positive psychological states and coping with severe stress
Humans; Male; Death; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; bereavement; Caregivers/psychology; Models; Psychological; Stress; Acquired Immunodeficiency Syndrome/psychology/therapy
Providing care to a spouse or partner who is dying and then losing that person are among the most stressful of human experiences. A longitudinal study of the caregiving partners of men with AIDS showed that in addition to intense negative psychological states, these men also experienced positive psychological state states throughout caregiving and bereavement. The co-occurrence of positive and negative psychological states in the midst of enduring and profoundly stressful circumstances has important implications for our understanding of the coping process. Coping theory had traditionally focused on the management of distress. This article describes coping processes that are associated with positive psychological states in the context of intense distress and discusses the theoretical implications of positive psychological states in the coping process.
1997
Folkman S
Social Science & Medicine
1997
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Journal Article
<a href="http://doi.org/10.1016/s0277-9536(97)00040-3" target="_blank" rel="noreferrer">10.1016/s0277-9536(97)00040-3</a>
Developing a process to support perinatal nurses after a critical event
Humans; Terminal Care; Attitude to Death; Neonatal Nursing; social support; Clinical Competence; Perinatal Care; Program Development; Needs Assessment; Nursing Methodology Research; Self Care; Risk Management; Family Nursing; Staff Development; Stress; Adaptation; Psychological; Models; Grief; Emergencies; Crisis Intervention
The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization identified processes to help themselves recover and to support each other. The result of this work is a written plan to facilitate the support of perinatal nurses after critical events. This article describes the development and implementation of this plan.
2014-03
Foreman S
Nursing For Women's Health
2014
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Journal Article
<a href="http://doi.org/10.1111/1751-486X.12094" target="_blank" rel="noreferrer">10.1111/1751-486X.12094</a>
Attachment to God as a Mediator of the Relationship Between Religious Affiliation and Adjustment to Child Loss
Adaptation; Attachment Behavior – Evaluation – In Middle Age; Child Mortality – Psychosocial Factors; Female; Grief – Evaluation; Human; Male; Middle Age; Models; Parental Attitudes; Psychological; Psychological – Evaluation – In Middle Age; Psychotherapy; Questionnaires; Religion and Psychology – Evaluation – In Middle Age
Objectives: The loss of a child is a traumatic life event. While bereavement research has examined the roles of both interpersonal attachment and religiosity in coping with loss, only a handful of studies have addressed the concept of attachment to God (ATG). The current study examined ATG's role as a mediator in the relationship between religious affiliation (RA) and adjustment to child loss. Method: Seventy-seven bereaved parents (68% women; average age, 55 years) were administrated questionnaires referring to RA, ATG, and adjustment to loss (Two-Track Bereavement Questionnaire-TTBQ\_{7}{0}{)}. Results: The hypothesized mediation model was confirmed. Conclusions: The findings highlight the need to examine internal religion-related variables, such as ATG, while addressing religion and loss. From a clinical perspective, the findings may help therapists implement culturally sensitive practice as a part of spiritually informed psychotherapy. Enhancing therapists' familiarity with the client's internal constructs will enable a better evaluation and accommodation of therapy when working with bereaved parents. Clinical Impact Statement: Internal religion-related variables, such as Attachment to God, are important while addressing religion in the context of loss. Attachment to God orientations mediate the effects of religious affiliation on the grief process. Therapists should implement culturally sensitive practice as a part of spiritually informed psychotherapy.
Frei-Landau R; Tuval-Mashiach R; Silberg T; Hasson-Ohayon I
Psychological Trauma: Theory, Research, Practice & Policy
2020
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<a href="http://doi.org/10.1037/tra0000499" target="_blank" rel="noreferrer noopener">10.1037/tra0000499</a>
An alternative in terminal care: results of the National Hospice Study
Female; Hospitalization; Male; United States; Adult; Aged; Health Services Research; Cancer Care Facilities; Outcome and Process Assessment (Health Care); quality of life; Non-U.S. Gov't; U.S. Gov't; Comparative Study; Models; Costs and Cost Analysis; Health; Insurance; Medicare/economics; Human; Theoretical; Support; Middle Age; home care services; Non-P.H.S.; Neoplasms/physiopathology/psychology/therapy; Hospices/classification/economics/organization & administration; Terminal Care/economics/organization & administration; Pain/epidemiology; Reimbursement/economics
Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.
1986
Greer DS; Mor V; Morris JN; Sherwood S; Kidder D; Birnbaum H
Journal Of Chronic Diseases
1986
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Journal Article
National hospice study analysis plan
United States; Family; Research Design; Non-U.S. Gov't; P.H.S.; U.S. Gov't; Models; Costs and Cost Analysis; Human; Theoretical; Support; Hospices/economics; Evaluation Studies/methods; Health Services Research/methods
Since the founding of the first hospice in the United States in 1974, the number of health care organizations providing hospice services has grown rapidly. In 1978, the U.S. General Accounting Office identified 59 operational hospices [1]. A survey undertaken by the National Hospice Organization (NHO) in 1980 found 235 operational programs and many more actively planning to deliver services. By the summer of 1981, the Joint Commission on the Accreditation of Hospitals (JCAH), in studying the feasibility of a voluntary hospice accreditation program, had 650 responses to a national survey [2]. Finally, the 1981 NHO directory identifies 464 operational "provider programs" as well as 33 functioning state-level hospice organizations with an additional 353 programs in various stages of establishing hospice programs of care [3]. The growth of the movement and the public recognition it has received have catalyzed advocacy of Federal support for hospice services. In 1979, the Congress responded by mandating a study to delineate the implications of inclusion of hospice services in the Medicare program. The Health Care Financing Administration (HCFA) then selected 26 hospices (from an applicant pool of 233) to participate in a two-year experimental program. These demonstration sites receive reimbursement for services provided Medicare beneficiaries not otherwise available under current regulations. The special reimbursement provisions went into effect on October 1, 1980. (See Appendix A: Description of the Hospice Reimbursement Program.) In the spring of 1980, the Robert Wood Johnson Foundation and the John A. Hartford Foundation joined with the Health Care Financing Administration (HCFA) to solicit proposals for a national evaluation of hospice care as a basis for future Federal fiscal policy and legislation. Brown University was selected as the evaluation center by competitive process and the grant was awarded on September 30, 1980. The evaluation employs a quasi-experimental design in which the impact of hospice care (with and without reimbursement) on quality of life and costs are compared to non-hospice (conventional) terminal care. Eight hundred patients and families in 24 comparison sites located in three regional areas (Southern New England, Northern Midwest and Southern California) are expected to participate. Primary data collection began on August 1, 1981. Analyses of differential outcome are performed using standard linear multiple regression and logistic multiple regression with separate models for each comparison group. Effects are tested by separately estimating the specific response variable for the prototype (average) hospice patient for each model.
1983
Greer DS; Mor V; Sherwood S; Morris JN; Birnbaum H
Journal Of Chronic Diseases
1983
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Journal Article
Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders
Humans; Interdisciplinary Communication; Models; Adolescent Transitions; United States/epidemiology; Genetic; Genetic Diseases; Comprehensive Health Care/methods; Inborn/diagnosis/epidemiology/therapy
Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven availability and utilization of multidisciplinary specialty clinics for different genetic diseases. For 2 disorders (ie, hemophilia and cystic fibrosis), effective national networks of specialty clinics exist and reach large proportions of the target populations. For other disorders, notably, sickle cell disease, fewer such centers are available, centers are less likely to be networked, and centers are used less widely. Models of comanagement are essential for promoting ongoing communication and coordination between primary care and subspecialty services, particularly during the transition from pediatric care to adult care. Evaluation of the effectiveness of different models in improving outcomes for individuals with genetic diseases is essential.
2009
Grosse SD; Schechter MS; Kulkarni R; Lloyd-Puryear MA; Strickland B; Trevathan E
Pediatrics
2009
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Journal Article
<a href="http://doi.org/10.1542/peds.2007-2875" target="_blank" rel="noreferrer">10.1542/peds.2007-2875</a>
Posttraumatic growth in treatment-seeking female assault victims
Female; Humans; Adult; Health Status; Outcome Assessment (Health Care); Life Change Events; Reproducibility of Results; Personality Inventory; Diagnostic and Statistical Manual of Mental Disorders; Adaptation; Psychological; Models; Parent caregivers; Depressive Disorder/diagnosis/psychology; Psychiatric Status Rating Scales; Stress Disorders; Post-Traumatic/diagnosis/psychology; Educational Status; Patient Acceptance of Health Care/psychology; Rape/psychology; Violence/psychology
The importance of measuring growth outcomes following a traumatic event has been highlighted in recent literature (e.g., Linley, Joseph: Journal of Traumatic Stress 17:11-21, 2004). Although reports of growth are abundant, the relationship between growth outcomes and post-trauma distress remains unclear, with studies yielding conflicting results regarding this relationship. The purpose of the present study was to explore the interrelationships among growth outcomes and measures of depression and posttraumatic stress disorder (PTSD) among 100 female treatment-seeking physical and sexual assault victims. Although the majority of women reported some degree of growth in this study, and growth scores were comparable to those from other samples, measures of depression and PTSD were not significantly related to growth scores. The implication of these findings and future direction for research are discussed.
2007
Grubaugh AL; Resick PA
The Psychiatric Quarterly
2007
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Journal Article
<a href="http://doi.org/10.1007/s11126-006-9034-7" target="_blank" rel="noreferrer">10.1007/s11126-006-9034-7</a>
Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs
Child; Humans; United States; Adult; Data Collection; Education; Program Evaluation; Fellowships and Scholarships; Medical; Models; Adolescent Transitions; Educational; Pediatrics/education; Heart Defects; Congenital; Cardiology/education; Graduate/economics/standards
OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational patterns and numbers of specialists remain unknown. METHODS: We surveyed U.S. directors of 170 adult cardiology and 45 pediatric cardiology (PC) fellowship programs. Adult program surveys contained 1 single-response and 10 multiple-choice questions; pediatric program surveys contained 1 single-response and 13 multiple-choice questions. RESULTS: Ninety-four adult cardiology fellowship directors (55%) and 34 PC directors (76%) responded. Of adult programs, 70% were in university hospitals and 40% were associated with PC groups. Those with PC-affiliation had more adult CHD clinics (p < 0.02) and more adult CHD inpatient (p < 0.02) and outpatient (p < 0.002) visits than those without PC affiliation. Most PC programs were in children's hospitals (38%) or children's hospitals within adult hospitals (50%). Eighty-two percent had associated adult cardiology programs. Pediatric programs followed adult CHD patients in various care settings. Over one-third of adult and pediatric programs had < or = 3 lectures annually regarding adult CHD. Nine adult and 2 pediatric programs offered adult CHD fellowships, and only 31 adult and 11 pediatric fellows pursued advanced CHD training in the last 10 years. CONCLUSIONS: Adult CHD didactic and clinical experiences for cardiology fellows vary widely. Few programs offer advanced CHD training, and the number of specially trained physicians is unlikely to meet projected workforce requirements. Adult cardiology programs with PC affiliation have increased CHD experience and might provide good educational models.
2005
Gurvitz MZ; Chang RK; Ramos FJ; Allada V; Child JS; Klitzner TS
Journal Of The American College Of Cardiology
2005
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Journal Article
<a href="http://doi.org/10.1016/j.jacc.2005.05.062" target="_blank" rel="noreferrer">10.1016/j.jacc.2005.05.062</a>
Sense of coherence: a relevant resource in the coping process of mothers of deaf and hard-of-hearing children?
Female; Humans; Questionnaires; Analysis of Variance; Stress; Adaptation; Psychological; Models; Mothers/psychology; Psychological/psychology; Theoretical; Deafness/psychology
This study examined the importance of reported sense of coherence (Antonovsky, 1987) in mothers of children with hearing impairment. Sense of coherence was explored as a factor in relation to the experience of stress and subjective life satisfaction and in the context of other relevant variables in coping (e.g., social support, additional handicaps of the child, child's hearing status, means of communication). Two hundred thirty-five mothers completed a questionnaire, and path analysis corroborated a theoretical model in which sense of coherence was delineated as a factor contributing directly to stress perception. Both sense of coherence and the experience of social support were identified as resources that reduced reported stress and improved quality of life, with sense of coherence especially important in reducing stress. Child variables, including additional handicaps and extent of hearing impairment, intensified reported stress for the mothers, but mode of communication with the deaf child did not affect stress experience. The findings are discussed within the context of socialization theory. Recommendations for further research (e.g., longitudinal data, control designs, socio-economic status, applicability to fathers) are made.
2004
Hintermair M
Journal Of Deaf Studies And Deaf Education
2004
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Journal Article
<a href="http://doi.org/10.1093/deafed/enh005" target="_blank" rel="noreferrer">10.1093/deafed/enh005</a>