Published Sep 20, 2008
Princzal
2 Posts
I have been a hospice nurse just since January but feel like it is my calling.I was just assigned a 12yr old and I need some resources to help me. A lot of my co-workers have suggested I refuse the case. I have no peds experience and was not aware we even did peds and I have a 14 yr old. But I want to help the parents the child is unresponsive and appears to be comfortable which I think makes it a little easier right now. I have searched the internet and havent found much information. Any advice or sites you can direct me to would be great
Feeling overwhelmed!:heartbeat
marachne
349 Posts
You're right, there's not a lot out there. Can you tell us more about the situation? What is the terminal dx? What are you concerns.
OK, apologies in advance, I don't have a lot of time today, but I did a quick search myself.
Fast Fact #117 is about pediatric pain scales. That's all I could find there.
I did a OVID search, and interestingly found almost nothing under either Medline or CINAHL, however PsychInfo gave me 21 records for a combo of "pediatric" and "hospice." I exported a text file and am pasting it below. I have not scanned it closely, but if there are articles there that may be useful and you can't find them, let me know and I'll see if I have access (the uni library has pretty good range ofsubscriptions) If I can access it I'll make a post and attach them for you.
Result
Chapter Title
Supportive Care for HIV-Infected Children and Their Families. [References].
Year of Publication 2006
Author Scott, Gwendolyn B; Fulton, Carol M; Letro, Kathy.
Source
Beal, Jeffrey (Ed); Orrick, Joanne J (Ed); Alfonso, Kimberly (Ed). (2006). HIV/AIDS: Primary care guide. (pp. 477-484). xxii, Norwalk, CT, US: Crown House Publishing Limited.
Abstract
Nutrition plays a very important role in maintaining the wellbeing of the HIV-infected infant. Inadequate weight gain and growth is one of the common problems and can manifest before other symptoms of HIV. Unlike infected adults, infants need to increase their weight; therefore, they are more susceptible at an early stage to develop nutritional deficiencies. This will impact their growth, immunological integrity, and brain development. Nutritional assessment should be performed at every visit, and early recognition of problems and intervention is imperative. Practitioners must identify the multiple factors which contribute to poor growth, including the environment in which the child is being raised. This chapter focuses on nutrition, but also mentions foster care and hospice care as examples of supportive care for HIV-infected children and their families. (PsycINFO Database Record © 2008 APA, all rights reserved)
Key Concepts
HIV-infected children, supportive care, hospice care, foster care, families, nutrition
Subject Headings
*Family
*HIV
*Nutrition
*Pediatrics
Foster Care
Hospice
Classification Code
Health & Mental Health Treatment & Prevention [3300]; Immunological Disorders [3291]
Title
Supporting the child and the family in paediatric palliative care. [References].
Year of Publication 2007
Author Brown, Erica; Warr, Brian [Col].
Source (2007). Supporting the child and the family in paediatric palliative care. 304 pp. London, England: Jessica Kingsley Publishers.
Supporting the Child and the Family in Paediatric Palliative Care provides a comprehensive overview of good practice in caring for terminally-ill children, young people and their families. The book provides guidance on key issues including symptom management and pain relief; cultural, religious and spiritual aspects of care; and the role of education for life-limited children. It also addresses the importance of individual needs, including emotional, social and cognitive support at different stages of the illness, how parents and professionals can respond to children's own questions about death, making choices during distressing periods, and the impact of life-limiting illness on the whole family--including grandparents and siblings. This handbook will be a practical and invaluable tool for nurses, paediatricians, hospice care staff, bereavement counsellors and all those caring for life-limited children. (PsycINFO Database Record © 2008 APA, all rights reserved)
palliative care, pediatrics, family, symptom management, pain relief, culture, education, religion, spirituality, needs, support
*Coping Behavior
*Palliative Care
*Terminally Ill Patients
Culture (Anthropological)
Disease Management
Education
Pain Management
Religion
Social Support
Spirituality
Home Care & Hospice [3375]
Accession Number
Peer Reviewed Journal: 2007-13374-002.
Title End-of-life nursing education consortium for pediatric palliative care (ELNEC-PPC). [References].
Author Malloy, Pam; Sumner, Elizabeth; Virani, Rose; Ferrell, Betty.
E-Mail Address
Malloy, Pam: [email protected]
MCN: The American Journal of Maternal/Child Nursing. Vol 32(5) Sep-Oct 2007, 298-304.
Pediatric nurses must often care for children with life-threatening illness. Although the child may be a neonate with multiple organ failure, a young adolescent diagnosed with HIV, or a 7-year-old child involved in a serious bicycle accident, pediatric nurses are an essential part of the interdisciplinary team that plans, organizes, implements, and manages the care of these children and their families. To date, more than 600 pediatric nurses have attended a national End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) training program. Many of these nurses have returned to their institutions dedicated to making a difference in the palliative care provided to children and their families. Because pediatric palliative care education is so important, many trainers have incorporated ELNEC-PPC into their nursing orientation, annual competencies, and undergraduate and graduate nursing education. They are developing standards of care and serve on key hospital/hospice committees, such as policy, education, clinical care, and ethics committees. This article showcases various activities of ELNEC-PPC trainers and demonstrates their commitment to improve pediatric palliative care not only in their institutions but also on local, state, national, and international levels. (PsycINFO Database Record © 2008 APA, all rights reserved) (journal abstract)
end of life nursing education, pediatric palliative care, pediatric nurses, training program
*Nurses
*Nursing Education
Professional Education & Training [3410]
The metaphor that sang its own sad song: Therapeutic storytelling in pediatric hospice care.
Author Klein, Roxanna Erickson.
Burns, George W (Ed). (2007). Healing with stories: Your casebook collection for using therapeutic metaphors. (pp. 199-209). xxiv, 277 pp. Hoboken, NJ, US: John Wiley & Sons Inc.
(from the chapter) This heartfelt story by Roxanna shows us the applicability of several types of metaphor in the context of home care nursing with a courageous young girl facing the prospect of death. Roxanna begins her work by asking the client's family to tell their stories, thus eliciting client-generated metaphors that enable them to explain their own understandings and perceptions of their current difficult circumstances. A second style of metaphor is the use of children's storybooks to present therapist-generated metaphors that parallel the child's problem and demonstrate potential means for coping. Third, using an experiential metaphor, Roxanna presents us with the challenge of what happens when the therapeutic intent of an intervention goes awry, with potentially untherapeutic consequences. What do you do when you give a dying child a pet bird to cheer it up only to find that the bird is dying, too? Among the many things this case clearly highlights is the value of listening carefully to clients, no matter how young, for the potential solutions they hold within themselves. (PsycINFO Database Record © 2008 APA, all rights reserved)
metaphor, therapeutic storytelling, pediatric hospice care, death and dying, coping skills
*Death and Dying
*Metaphor
*Psychotherapeutic Techniques
*Storytelling
Coping Behavior
Pediatrics
Psychotherapy & Psychotherapeutic Counseling [3310]
Peer Reviewed Journal: 2007-05326-003.
Title Parents' and children's perspectives of a children's hospice bereavement program. [References].
Author Davies, Betty; Collins, John; Steele, Rose; Cook, Karen; Distler, Vivian; Brenner, Amy.
Source Journal of Palliative Care. Vol 23(1) Spr 2007, 14-23.
The provision of some form of bereavement services is an integral part of any pediatric hospice program. The Canuck Place hospice program has offered bereavement services since it began in 1995. A mixed-method evaluation of the impact of the Canuck Place program on the families it served during its first two-and-a-half years of operation was conducted. The bereavement services reviewed included follow-up care for families, and bereavement support groups for children and their parents. Eight children were interviewed in the initial phase, and nine completed a survey questionnaire; 28 parents rated their level of satisfaction with various aspects of their experience with the parent support group. Findings indicated that the follow-up component of the program was well-received by family members. When assessing their group experiences, children and parents most appreciated the support and understanding they received, the freedom to express themselves, a diminished sense of isolation, and the normalization of their emotions. Practical considerations when offering bereavement support groups are discussed in this paper. (PsycINFO Database Record © 2007 APA, all rights reserved) (journal abstract)
parents' perspective, children's perspectives, children's hospice bereavement program, families
*Child Attitudes
*Grief
*Mental Health Programs
*Parental Attitudes
Support Groups
Source Beal, Jeffrey (Ed); Orrick, Joanne J (Ed); Alfonso, Kimberly (Ed). (2006). HIV/AIDS: Primary care guide. (pp. 477-484). xxii, Norwalk, CT, US: Crown House Publishing Limited.
(create) Nutrition plays a very important role in maintaining the well being of the HIV-infected infant. Inadequate weight gain and growth is one of the common problems and can manifest before other symptoms of HIV. Unlike infected adults, infants need to increase their weight; therefore, they are more susceptible at an early stage to develop nutritional deficiencies. This will impact their growth, immunological integrity, and brain development. Nutritional assessment should be performed at every visit, and early recognition of problems and intervention is imperative. Practitioners must identify the multiple factors which contribute to poor growth, including the environment in which the child is being raised. This chapter focuses on nutrition, but also mentions foster care and hospice care as examples of supportive care for HIV-infected children and their families. (PsycINFO Database Record © 2007 APA, all rights reserved)
Title Editorial: Supporting Pediatric Palliative Care: Helping Ourselves. [References].
Author Liao, Solomon; Arnold, Robert M.
Liao, Solomon: [email protected]
Arnold, Robert M.: [email protected]
Journal of Palliative Medicine. Vol 9(1) Jan 2006, 161-162.
Most Fellows and practicing hospice and palliative medicine physicians come from an adult medicine background. Their training in palliative medicine is also mostly with adults. Given this, palliative care practitioners need to have a basic understanding of pediatric palliative care for those times when they care for children. Moreover, by studying pediatric palliative care, they can learn how to better care for adults. Understanding pediatric palliative medicine is important for three reasons. First, one needs to understand the precepts for those times that palliative care practitioners care for pediatric patients. Second, appreciating what pediatric palliative care does will make them more aware of their needs when they develop palliative care policy. Too often these policies focus solely on adults, neglecting or undermining the important work of pediatric palliative care. The National Consensus Project for Quality Palliative Care is a good example of standards that are applicable to both adults and children. Finally, learning about pediatric palliative care may help gain a better understanding of the challenges within adult medicine. Watching pediatric colleagues operationalize holistic care, for example, points out how far palliative care practitioners still have to go in adult medicine. (PsycINFO Database Record © 2007 APA, all rights reserved)
palliative care practitioners, pediatrics, palliative care policy, palliative medicine physicians, medicine background, clinical training
*Clinical Psychology Graduate Training
*Hospice
*Professional Competence
Clinical Methods Training
Physicians
Health Care Policy
Peer Reviewed Journal: 2005-11942-003.
Issues in Pediatric Palliative Care: Understanding Families. [References].
Year of Publication 2005
Author Bartell, Abraham S; Kissane, David W.
Source Journal of Palliative Care. Vol 21(3) Fal 2005, 165-172.
While family-centred care has always been part of the rhetoric of hospice and palliative care, few models have been developed that successfully integrate care of the caregivers into the overall schema. Systematic analyses of interventions have failed to produce any demonstrable benefit to families arising from the modern practice of palliative care. This alarming finding constitutes the greatest challenge for the 21st century. Pediatric palliative care may have much to teach in its approach to family care. Family-focused grief therapy is one model, used with both adolescent and adult families, that has promise for the field. The time has surely arrived for palliative medicine to focus on family-based research. (PsycINFO Database Record © 2007 APA, all rights reserved) (journal abstract)
pediatrics, palliative care, hospice, caregivers, families
*Caregivers
Health & Mental Health Services [3370]
Peer Reviewed Journal: 2005-08495-003.
Title The needs of children with life-limiting conditions: A healthcare-provider-based model. [References].
Author Donnelly, James P; Huff, Susan M; Lindsey, Michael L; McMahon, Kathy A; Schumacher, J. Donald.
Source American Journal of Hospice & Palliative Medicine. Vol 22(4) Jul-Aug 2005, 259-267.
Other Serial Titles
American Journal of Hospice & Palliative Care
Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however, is a model of the needs of children. The purpose of the present study was to develop an empirically based conceptual model of the needs of children with life-limiting conditions. Recognizing the value of both qualitative and quantitative data, concept mapping methodology was selected as an effective way to obtain data that reflected both the "big picture" and subtleties of pediatric end-of-life needs. The seven-cluster concept map appeared best in terms of both interpretability and parsimony. This model includes the following clusters of needs: 1) pain, 2) decision making, 3) medical system access and quality, 4) dignity and respect, 5) family- oriented care, 6) spirituality, and 7) psychosocial issues. We believe that the development of a comprehensive model of the needs of such children is a step toward concrete, measurable, and effective support for children and their families. (PsycINFO Database Record © 2007 APA, all rights reserved) (journal abstract)
health care needs, pediatric palliative care, pediatric hospice
*Health Care Services
*Health Service Needs
Peer Reviewed Journal: 2005-00258-002.
Exploring the Value of Opportunities for Choice and Control in Music Therapy within a Paediatric Hospice Setting. [References].
Year of Publication
2004
Author
Sheridan, Janine; McFerran, Katrina.
Australian Journal of Music Therapy. Vol 15 2004, 18-32.
This article explores the value of providing opportunities for choice and control in music therapy sessions within a children's hospice. The field of paediatric palliative care is briefly described and contextualised within better known fields of music therapy practice. Relevant literature is reviewed describing the role of choice and control in adult palliative care, paediatric medical settings, and special education. The unique dimensions of music therapy practice in a paediatric hospice setting are then outlined using a model of the therapeutic interaction, illustrated by three clinical vignettes. The authors conclude by reflecting on issues arising from offering multiple opportunities for choice and control within sessions, including rejection, chaos, and the question of value. (PsycINFO Database Record © 2007 APA, all rights reserved) (journal abstract)
music therapy, pediatric hospice, pediatric palliative care
*Music Therapy
Art & Music & Movement Therapy [3357]
Peer Reviewed Journal: 2006-08429-017.
The Footprints-super(SM) Model of Pediatric Palliative Care. [References].
2003
Toce, Suzanne; Ann Collins, Mary.
Ann Collins, Mary: [email protected]
Journal of Palliative Medicine. Vol 6(6) Dec 2003, 989-1000.
Little is known about the optimal context in which to provide care for the more than 53,000 children who die each year in the United States. Poor training in pediatric palliative care contributes to care that is often fragmented and may neglect the physical, psychosocial, and spiritual needs of the child and family. Pediatric hospice care is frequently not available or not chosen by the family or health care providers. In response to a critical need to move beyond the disease oriented, hospital-based model with a lack of continuity between hospital and community-based medical services, we developed FOOTPRINTS-super(SM), an innovative program of advanced care planning and care coordination. A continuity physician directs the treatment plan regardless of site of care. Staff members coordinate follow up and communication among hospital and community-based care providers. Spiritual support continues through bereavement. Education in the hospital and community supports provision of excellent palliative care by current providers. Satisfaction with this model of care has been high. More than 90% of health care providers and families perceived that the child and family needs as well as the health care provider needs were met by the advanced care planning process and written care plan. All continuity providers would refer another patient. The FOOTPRINTS-super(SM) program promotes quality of care and family and health care provider satisfaction with care. It has been developed to serve as a "best practice" model for care at life's end. (PsycINFO Database Record © 2007 APA, all rights reserved) (journal abstract)
pediatric palliative care, hospice, health care providers, Footprints model
*Models
*Quality of Care
Health Personnel
Peer Reviewed Journal: 2003-99048-002.
High dose opioids in pediatric palliative care. [References].
Siden, Harold; Nalewajek, Gina.
Journal of Pain and Symptom Management. Vol 25(5) May 2003, 397-399.
Reviewed the charts of all patients who died as inpatients at a pediatric hospice during the period January 1995 to June 2001. 80 patients on the Canuck Place Children's Hospice program died. Forty-four of these patients died in hospice (21 male, 23 female patients aged 0-19 yrs); others died elsewhere. The median duration of end-of-life stay was 8 days, with a range of 0 days to 147 days. Thirty-two patients had cancer and twelve had other conditions. Based upon pain scores, comfort assessment tools and provider notes, almost all patients achieved adequate pain/symptom control at their maximum opioid dose. Three of 44 patients did not obtain complete pain relief before death. In summary, opioids titrated significantly upwards beyond usual starting doses may be required in pediatric palliative care. Adverse events at these high doses occur, but are often minor or can be readily managed. Moreover, adverse events may also be end-of-life symptoms, and cannot be necessarily attributed to the drug; they should not be barriers to providing adequate pain control. (PsycINFO Database Record © 2007 APA, all rights reserved)
pediatric palliative care, pediatric hospice patients, end of life care, opioid pain control, side effects, end of life symptoms
*Opiates
*Pain Management
Drug Therapy
Pain
Side Effects (Drug)
Symptoms
Medical Treatment of Physical Illness [3363]
Peer Reviewed Journal: 2003-03556-004.
The Impact on Families of a Children's Hospice Program. [References].
Davies, Betty; Collins, John B; Steele, Rose; Pipke, Ingrid; Cook, Karen.
Journal of Palliative Care. Vol 19(1) Spr 2003, 15-26.
Pediatric hospice is a relatively new development in the field of hospice care. This article reports on an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first two and a half years of operation. Using the principles of participatory action research, data were collected from individual interviews, focus groups, and mail-out surveys of families who used the program. Sixteen categories of hospice program effect were found to summarize how families regarded, used, and assessed their experiences. Families overwhelmingly endorsed the Canuck Place program. They also provided helpful suggestions for improvement and growth, particularly during the program's formative years. Recommendations are made with a view to promoting and solidifying the ongoing success of the Canuck Place program, as well as of children's hospice programs in general. (PsycINFO Database Record © 2007 APA, all rights reserved) (journal abstract)
participatory action research, evaluation project, pediatric hospice, hospice care, children hospice program, families, hospice programs
*Program Evaluation
*Quality of Services
Peer Reviewed Journal: 2002-02847-005.
Addressing spirituality in pediatric hospice and palliative care. [References].
2002
Davies, Betty; Brenner, Paul; Orloff, Stacy; Sumner, Liz; Worden, William.
Journal of Palliative Care. Vol 18(1) Spr 2002, 59-67.
Hospice and palliative care principles mandate clinicians to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care. (PsycINFO Database Record © 2007 APA, all rights reserved)
spirituality, pediatric hospice, palliative care
*Spirituality
Book: 2003-04268-018.
Incorporating children in an adult hospice program.
2001
Orloff, Stacy F.
Armstrong-Dailey, Ann (Ed); Zarbock, Sarah (Ed). (2001). Hospice care for children (2nd ed.). (pp. 353-377). xviii, 416 pp. New York, NY, US: Oxford University Press.
(from the chapter) This chapter provides a programmatic overview for adult hospice programs that are considering admitting children into their adult programs or expanding a small pediatric program into a larger one. It highlights many of the benefits of providing care for a dying child, including making an important difference in the lives of dying children and their families, staff satisfaction and personal growth, community outreach, fund-raising opportunities, and a chance to educate the community. Increasing collaborative relationships with other pediatric health care providers is addressed. The chapter provides detailed information about what a pediatric program may "look" like, using examples from current pediatric hospice programs. Available national resources are outlined so that the reader will know how to access programs for additional help. (PsycINFO Database Record © 2007 APA, all rights reserved)
hospice programs, incorporating children, pediatric hospice
Terminally Ill Patients
Book: 2003-04268-011.
Unpaid staff: The volunteer component. [References].
Brenner, Paul R.
Armstrong-Dailey, Ann (Ed); Zarbock, Sarah (Ed). (2001). Hospice care for children (2nd ed.). (pp. 213-231). xviii, 416 pp. New York, NY, US: Oxford University Press.
(from the chapter) Notes that there may be 3 different kinds of readers of this chapter: (1) persons from hospice programs already serving adult patients who are considering extending their services to include pediatric patients and who are interested in how their existing volunteer component needs to be expanded to accommodate this special populations; (2) persons from organizations who are interested in establishing pediatric hospice programs, having no or very limited programs of direct volunteer services already in place, and are looking for "how to do it" information; and (3) persons from existing hospice programs that serve children and have operating volunteer services and are interested in reviewing their program of volunteer services. To address such a wide diversity of interest and experience, this chapter presents basic, as well as comprehensive, information about the service and management issues involved in establishing and maintaining an effective program of volunteer services to serve pediatric hospice patients. (PsycINFO Database Record © 2007 APA, all rights reserved)
pediatric hospice, hospice programs, volunteer staff
*Volunteers
Book: 2003-04268-010.
Staff support in pediatric hospice care. [References].
Sumner, Lizabeth H.
Armstrong-Dailey, Ann (Ed); Zarbock, Sarah (Ed). (2001). Hospice care for children (2nd ed.). (pp. 190-212). xviii, 416 pp. New York, NY, US: Oxford University Press.
(create) This chapter explores the essential role of staff support in pediatric hospice care. Topics discussed include identifying the occupational stressors of hospice care, fostering optimal team functioning, successful orientation and precepting programs, ongoing training and resources for the experienced hospice professional, training and learning opportunities for staff support, other resources for staff support, overinvolvement and role perception, pediatric oncology and intensive care nurses' experience, and mechanisms to measure the effectiveness of staff support. (PsycINFO Database Record © 2007 APA, all rights reserved)
staff support, pediatric hospice care
*Health Personnel
Professional Psychological & Health Personnel Issues [3400]; Home Care & Hospice [3375]
Book: 2003-04268-004.
Caring for children with life-limiting illness and their families: Focus on pediatric hospice nursing.
Feeg, Veronica D; Miller-Thiel, Janice; Will, Janet.
Armstrong-Dailey, Ann (Ed); Zarbock, Sarah (Ed). (2001). Hospice care for children (2nd ed.). (pp. 68-99). xviii, 416 pp. New York, NY, US: Oxford University Press.
(create) This chapter explores the role of pediatric hospice nursing in caring for children with life-limiting illness and their families. The chapter presents the pediatric palliative care nursing model, a graphical chronology of critical time points associated with common decisions or changes in the child's condition: (1) at time of diagnosis if given an estimated prognosis; (2) through the ups and downs of daily living with uncertainty; (3) at points of declining physical stamina near death; (4) at death; and (5) after death. (PsycINFO Database Record © 2007 APA, all rights reserved)
pediatric hospice nursing, pediatric palliative care nursing model, children with life-limiting illness, family
*Nursing
Death and Dying
Models
Dissertation Abstract: 2000-95014-258.
Children's terminal illness and the value of a pediatric hospice/palliative care program.
2000
Addesa, Margaret Mary.
Dissertation Abstracts International: Section B: The Sciences and Engineering. Vol 61(1-B), Jul 2000, pp. 520.
Very little research has been done to examine the needs of children with terminal illnesses and their families. A consensus from the few well-controlled studies on this topic have suggested several observations. The diagnosed child is not the only victim of the disease. Destructive effects extend to the entire family of the afflicted child, making each member feel like a victim. When moving from curative treatment to palliative care, attempts to enrich a dying child's quality of life involves the total care of providing support services to help all family members cope with the crisis. Involvement of the parents, siblings, and the sick child with the health care professionals is required to deal with the major areas of the needs of terminal illness. This involvement was said to have a positive impact on the sick child's ability to cope and necessary for favorable family adjustment. The major areas of needs include pain control and symptom management, psychological adaptation, family support, and home care assistance. The present study examined the value of Essential Care, which is a pediatric hospice/palliative care program that attempts to meet the needs of the victims of a child's terminal illness and offers support services to meet those needs. Fourteen families whose children are currently enrolled in the Essential Care Program (ECP) and 13 core staff members of this program were interviewed to evaluate to what extent this program provides support services to all members of a terminally ill child's family, and the relationship between support services provided and the effect of the ECP on a terminally ill child's quality of life. Analysis of the data found that in general, staff members, mothers, and fathers of children currently enrolled in the ECP, all gave high ratings regarding the extent of support services provided. The extent of family member involvement with the support services was found to range from close to complete involvement for the group of mothers to relatively little involvement for the siblings. A positive relationship was also found between the extent of support services provided and the effect of the ECP on the ill child's quality of life. (PsycINFO Database Record © 2007 APA, all rights reserved)
support services provided to child & child's families & terminally ill child's quality of life, families of pediatric hospice/palliative care program enrollees & core staff members
*Quality of Life
Health & Mental Health Treatment & Prevention [3300]
Electronic Collection: 2006-06445-047.
Dying Children.
1987
Brunnquell, Donald.
PsycCRITIQUES. Vol 32 (2), Feb, 1987
Originally published in Contemporary Psychology: APA Review of Books, 1987, Vol 32(2), 166-167. Reviews the book, Hospice Approaches to Pediatric Care edited by Charles A. Corr and Donna M. Corr (1985). The breadth of topics clearly reflects their belief in hospice as a philosophy of care rather than a facility. The strongest sections of the book are those on specific programs and bereavement. The book is not as strong in its section on general principles and methods of working with dying children. Many chapters in this book call for an educational program for staff members, yet no description of such a program is included. This book serves the valuable end of bringing together the thoughts of many of the pioneers in pediatric hospice care and will especially benefit those beginning a hospice program. (PsycINFO Database Record © 2007 APA, all rights reserved)
hospice approaches, pediatric care, bereavement, dying children, hospice program
Educational Programs
Grief
Peer Reviewed Journal: 1983-24088-001.
The viability of pediatric hospices: A case study.
1982
Wilson, Dottie C.
Death Education. Vol 6(3) Fal 1982, 205-212.
Death Studies
Identifies the special characteristics of hospices caring for terminally ill children, based on a 1979 feasibility study conducted by St. Mary's Hospital for Children in Bayside, New York. From the analysis of data and interviews with health professionals and community residents, it appears that the needs of terminally ill children are not currently being met and that a hospice is as appropriate for them as it is for adults. There are, however, differences in emphasis that should be considered in the establishment of a children's hospice. These include greater family support services, more extensive home care services, and greater public and professional education about the care of terminally ill children and ways of coping with grief. Suggestions for further research are made with regard to eligibility of the pediatric patient for hospice referral and evaluation of the child's age, cognition level, and communication ability. (4 ref) (PsycINFO Database Record © 2007 APA, all rights reserved)
special characteristics of pediatric hospices, terminally ill children
leslie :-D
11,191 Posts
Children's Project on Palliative/Hospice Services (ChiPPS)
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3409
Pediatric Palliative Care
http://www.capc.org/palliative-care-across-the-continuum/pediatric-palliative-care/
Pediatric Outreach
http://www.caringinfo.org/Community/PediatricOutreach.htm
leslie
llg, PhD, RN
13,469 Posts
Also ... Given your brief desciption of your patient, I would assume she has been under the care of hospital health care team that probably has both knowledge of this particular case and also pediatric palliative care in general. The children's hospital that I work for has its own Pediatric Palliative Care Specialist.
Have you consulted with the team that has been taking care of her up to this point? They may have a lot to offer.
Thank you for the informaton. He has a medulla blastoma with mets to the spine. He has had surgery, chemo and radiation. His extremities are flaccid and has no facial expression. He isnt able to even close his eyes but moves his eyes back and forth horizantally constantly. The father carries him from room to room and even continues to take him in the pool. I think about this case constantly and dont know what interventions I can do to make this a little more bearable. I am anticipating that he will start having seizures ( he is on Keppra) or go into respiratory distress.
Praying for the knowledge and the wisdom to be the best that I can be!