La atención sanitaria tras una muerte intrauterina o

Transcripción

La atención sanitaria tras una muerte intrauterina o perinatal:
Bibliografía de artículos académicos y guías de atención1
Compilado por Paul Cassidy2
Versión 1.0
30 de Noviembre 2016
1 La
bibliografía sólo se basa en artículos que el compilador ha leído. Aunque la bibliografía contiene artículos
de los años 70 y 80, se enfoca principalmente en artículos desde los noventa hasta el momento de publicación.
Si le gustaría recomendar un artículo para su inclusión, contactar con Paul Cassidy a través de la dirección de
correo electrónico que encontrará más abajo.
2 Investigador en Umamanita y Doctorando en Sociología y Antropología, UCM. Correo electrónico:
[email protected] o [email protected]
1
Índice
Sección 1. Atención sanitaria - general ............................................................................. 3 Sección 1.1. Revisiones sistemáticas ............................................................................................................................ 3 Sección 1.2. Atención sanitaria (general) ................................................................................................................... 3 Sección 1.3. Atención sanitaria en casos de anomalía fetal .................................................................................. 4 Sección 1.4. Diagnóstico, comunicación de la muerte y el periodo pos-diagnóstico/pre-parto .............. 4 Sección 1.5. Efectividad de la atención sanitaria ..................................................................................................... 5 Sección 1.6. Perspectiva de las madres y padres sobre la atención sanitaria ................................................... 5 Sección 1.7. Atención sanitaria durante un próximo embarazo ......................................................................... 6 Sección 1.8. Mortalidad, prevención y cuidados: la serie de artículos de The Lancet ................................ 6 Sección 2. Atención sanitaria enfocada en el apoyo al duelo ............................................... 6 Sección 2.1. Contacto postmortem (ver y sostener) ............................................................................................... 6 Sección 2.2. Disposición del cuerpo ............................................................................................................................. 7 Sección 2.3. La fotografía postmortem en casos de muerte perinatal .............................................................. 7 Sección 2.4. El uso de terminología en la comunicación con las madres y padres ....................................... 7 Sección 3. Aspectos clínicos de la atención ........................................................................ 8 Sección 3.1. El parto y su planificación* ..................................................................................................................... 8 Sección 3.2. Administración de sedantes ................................................................................................................... 8 Sección 3.3. Estudios de patología y autopsia .......................................................................................................... 8 Sección 3.4. Atención en el puerperio ......................................................................................................................... 9 Sección 3.5. El Seguimiento después del alta ........................................................................................................... 9 Sección 4. Guías de atención .......................................................................................... 10 Sección 5. La experiencia vivida por los profesionales sanitarios ...................................... 10 2
Sección 1. Atención sanitaria - general
Sección 1.1. Revisiones sistemáticas
Año
Autor(es)
Titulo
2016
Ellis et al
Systematic review to understand and improve care after stillbirth: a BMC Pregnancy and Childbirth
review of parents’ and healthcare professionals’ experiences
2016
Peters, Lisy et Providing meaningful care for families experiencing stillbirth: a
al
meta-synthesis of qualitative evidence
Journal of Perinatology
2014
Peters et al
Stillbirth Foundation Australia/
Joanna Briggs Institute
2008
Williams et al Supporting bereaved parents: practical steps in providing
compassionate perinatal and neonatal end-of-life care – A North
American perspective
Seminars in Fetal and Neonatal
Medicine
2016
Hayley-Coffey Parents' experience of the care they received following a stillbirth: a
literature review
Evidence Based Midwifery
Providing care for families who have experienced stillbirth: a
comprehensive systematic review
Revista Científica/ Editorial
Sección 1.2. Atención sanitaria (general)
Año
Autor(es)
Titulo
2015
DiMiceliZsigmond et
al
Expecting the Unexpected: Perspectives on Stillbirth and Late
Termination of Pregnancy for Fetal Anomalies
Anesthesia & Analgesia
2015
Peters, Lisy et Caring for families experiencing stillbirth: evidence-based guidance
al
for midwives and maternity care providers
2015
Siassakos,
Jackson et al.
InSight study report. Understanding and improving care for parents SANDS (Stillbirth and Neonatal
after a baby has died
Death Society)
2015
Steen & Ilse
Mediocre or excellent-where does your facility stand? Becoming a
perinatal loss gold standard hospital
BMC Pregnancy and Childbirth
2015
Cassidy
Body and ontology: Perinatal bereavement and death in the
technoscientific landscape of hospital care
Teknokultura
2013
Gravensteen et Women’s experiences in relation to stillbirth and risk factors for long- BMJ Open
al
term post-traumatic stress symptoms: a retrospective study
2010
Cacciatore
Stillbirth: Patient-centered Psychosocial Care
Clinical obstetrics and gynecology
2010
Limbo &
Kobler
The Tie That Binds- Relationships In Perinatal Bereavement
MCN: The American Journal of
Maternal/Child Nursing
2009
Davidson
A technology of care: Caregiver response to perinatal loss
Women's Studies International
Forum
2009
Hunt et al
My brain couldn’t move from planning a birth to planning a
International journal of nursing
funeral’: A qualitative study of parents’ experiences of decisions after studies
ending a pregnancy for fetal abnormality
2008
Henley &
Schott
The death of a baby before, during or shortly after birth: Good
practice from the parents’ perspective
Medicine
2008
Leon
Helping Families Cope with Perinatal Loss
Glob Lib Womens Med
2007
Gold, Dalton
& Schwenk
Hospital Care for Parents After Perinatal Death
Obstetrics & Gynecology
Women Birth
3
2006
Elklit &
Gudmundsdottir
Assessment of guidelines for good psychosocial practice for parents
who have lost an infant through perinatal or postnatal death
Nordic Psychology
2005
Kavanaugh,
Supporting Parents After Stillbirth or Newborn Death: There is
Faan & Moro much that nurses can do
AJN The American Journal of
Nursing
2002
Hughes,
Turton,
Hopper &
Evans
Assessment of guidelines for good practice in psychosocial care of
mothers after stillbirth
The Lancet
2002
ReillySmorawski,
Armstrong &
Catlin
Bereavement support following death of a baby: Program
development and 14-year exit analysis
Death Studies
2001
Corbet-Owen The Health System and Emotional Care: Validating the Many Families, Systems, & Health
& Kruger
Meanings of Spontaneous Pregnancy Loss
2001
Kavanaugh & Communicating with Parents Who Experience a Perinatal Loss
Paton
Illness, Crisis & Loss
2000
Gensch &
Midland
When a baby dies: A standard of care
2000
Ujda &
Bendiksen
Health care provider support and grief after perinatal loss
1996
Rädestad et al Stillbirth Is No longer Managed as a Nonevent: A Nationwide
Study in Sweden
Birth
1992
Leon
Perinatal Loss A Critique of Current Hospital Practices
Clinical Pediatrics
1986
Swanson
Parents Experiencing Perinatal Loss, The Physicians Role
Canadian Family Physician
1980
Kowalski
Managing Perinatal Loss
Clinical obstetrics and gynecology
1976
Lewis
The management of stillbirth: coping with an unreality
The Lancet
Sección 1.3. Atención sanitaria en casos de anomalía fetal
Año
Autor(es)
Titulo
2016
Fleming et al
Dying at life's beginning: Experiences of parents and health
professionals in Switzerland when an ‘in utero ’ diagnosis
incompatible with life is made
Midwifery
2012
Lee
'She was a person, she was here": The experience of late pregnancy loss Journal of Reproductive and
in Australia
Infant Psychology
2008
Sloan, Kirsh
& Mowbray
Viewing the fetus following termination of pregnancy for fetal
anomaly
Journal of Obstetric,
Gynecologic, & Neonatal
Nursing
2007
ACOG
Practice Bulletin No. 77: screening for fetal chromosomal
abnormalities
The American Congress of
Obstetricians and Gynecologists
Sección 1.4. Diagnóstico, comunicación de la muerte y el periodo pos-diagnóstico/pre-parto
Año
Autor(es)
Titulo
2013
Rädestad,
Being alone in silence - Mothers' experiences upon confirmation of
Midwifery
4
Malm et al
their baby's death in utero
2012
Pullen,
Golden &
Cacciatore
“I'll Never Forget Those Cold Words as Long as I Live”: Parent
Perceptions of Death Notification for Stillbirth
2011
Malm,
Waiting in no-man's-land - mothers' experiences before the
Rädestad et al induction of labour after their baby has died in utero
2011
Erlandsson et
al
Journal of social work in end-oflife & palliative care
Sexual & Reproductive
Healthcare
Mothers’ experiences of the time after the diagnosis of an intrauterine Journal of Obstetrics and
death until the induction of the delivery: A qualitative InternetGynaecology Research
based study
Sección 1.5. Efectividad de la atención sanitaria
Año
Autor(es)
Titulo
1987
Lake
Evaluation of a Perinatal Grief Support Team
American journal of obstetrics
and gynecology
1982
Forrest,
Standish &
Baum
Support after perinatal death, a study of support and counselling
after perinatal bereavement
BMJ (Clinical Research Edition)
Sección 1.6. Perspectiva de las madres y padres sobre la atención sanitaria
Año
Autor(es)
Titulo
2014
Redshaw,
Rowe &
Henderson
Listening to Parents after stillbirth or the death of their baby after
birth
Oxford: National Perinatal
Epidemiology Unit
2013
Downe et al
Bereaved parents’ experience of stillbirth in UK hospitals: a
qualitative interview study
BMJ Open
2011
Rädestad et al Evaluation of care after stillbirth in Sweden based on mothers’
gratitude
2010
Geller
Satisfaction with pregnancy loss aftercare- are women getting what Archives of women's mental
they want?
health
2008
Widger Picot
Parents perceptions of the quality of pediatric and perinatal end-oflife care
Pediatric Nursing
2007
Gold
Navigating care after a baby dies: a systematic review of parent
experiences with health providers
Journal of Perinatology
British Journal of Midwifery
En Español: Cuidados tras la muerte de un bebé: una revisión
sistemática de la experiencia de los padres con los profesionales
sanitarios
2002
Lundqvist,
Nilstun &
Dykes
Both Empowered and Powerless: Mothers’ Experiences of
Professional Care When Their Newborn Dies
1999
Paton et al
Grief in miscarriage patients and satisfaction with care in a London Journal of reproductive and infant
hospital
psychology
1998
Rädestad et al A comparison of womens memories of care durin pregnancy, labour
and delivery after stillbirth or live birth
Midwifery
1994
Harper &
Wisian
The Journal of reproductive
medicine
Care of bereaved parents: a study of patient satisfaction
Birth
5
1994
Lasker &
Toedter
Satisfaction with Hospital Care and Interventions after Pregnancy
Loss
Death Studies
Sección 1.7. Atención sanitaria durante un próximo embarazo
Año
Autor(es)
Titulo
2016
Mills,
Ricklesford,
Heazell et al
Marvelous to mediocre: findings of national survey of UK practice
BMC Pregnancy & Childbirth
and provision of care in pregnancies after stillbirth or neonatal death
2014
CoteEvidence-based Intervention with Women Pregnant after Perinatal MCN: The American Journal of
Arsenault et al Loss
2014
Mills,
Parents' experiences and expectations of care in pregnancy after
Ricklesford & stillbirth or neonatal death: a metasynthesis
Cooke
Journal of Obstetrics &
Gynaecology
Sección 1.8. Mortalidad, prevención y cuidados: la serie de artículos de The Lancet
Año
Autor(es)
Titulo
2016
Flenady et al
Ending preventable stillbirths 4 Stillbirths- recall to action in high- The Lancet
income countries
2016
Froen et al
Ending preventable stillbirths 1 Stillbirths- progress and unfinished The Lancet
business
2016
Heazell et al
Ending preventable stillbirths 3 Stillbirths- economic and
psychosocial consequences
The Lancet
2016
Lawn et al
Ending preventable stillbirths 2 Stillbirths- rates, risk factors, and
acceleration towards 2030
The Lancet
Sección 2. Atención sanitaria enfocada en el apoyo al duelo
Sección 2.1. Contacto postmortem (ver y sostener)
Año
Autor(es)
Titulo
2015
Hennegan,
Redshaw &
Henderson
Contact with the baby following stillbirth and parental mental
health and well-being: a systematic review
BMJ Open
2015
Kingdon,
Donnell,
Givens,
Turner
The Role of Healthcare Professionals in Encouraging Parents to See
and Hold Their Stillborn Baby: A Meta-Synthesis of Qualitative
Studies
Plos one
2015
Wilson, Boyle Holding a stillborn baby: the view from a specialist perinatal
& Ware
bereavement service
Journal of Paediatrics and Child
Health
2014
Ryninks et al
Mothers’ experience of their contact with their stillborn infant: An
interpretative phenomenological analysis
BMC Pregnancy and Childbirth
2013
O'Leary &
Untold Stories of Infant Loss The Importance of Contact With the
Journal of family nursing
6
Warland
Baby for Bereaved Parents
2012
Erlandsson,
Warland et al
Seeing and holding a stillborn baby: Mothers’ feelings in relation to
how their babies were presented to them after birth
Midwifery
2011
Warland &
Davis et al
ISA PAC Position Statement Caring for Families Experiencing
Stillbirth, A unified position statement on contact with the baby
2009
Rädestad et al Long-term outcomes for mothers who have or have not held their
stillborn baby
Midwifery
2008
Cacciatore,
Rädestad &
Froen
Effects of Contact with Stillborn Babies on Maternal Anxiety and
Depression
Birth
2008
Cameron,
Taylor &
Greene
Representations of rituals and care in perinatal death in British
midwifery textbooks 1937–2004
Midwifery
2008
Rädestad &
Helping a woman meet her stillborn baby while it is soft and warm
Christofferson
2008
Surkan,
Events after Stillbirth in Relation to Maternal Depressive
Rädestad et al Symptoms: A Brief Report
Birth
2005
Rädestad et al Holding a stillborn baby- mothers feelings of tenderness and grief
1989
RansohoffAdler &
Berger
Journal of perinatology
When newborns die: do we practice what we preach?
Sección 2.2. Disposición del cuerpo
Año
Autor(es)
Titulo
2009
Davies
Respectful Disposal Of Fetal Tissue and Remains - Blue 378
Bath Hospital
2007
Royal College Sensitive disposal of fetal remains - Guidelines for nurses and
of Nursing
midwives
Royal College of Nursing
Sección 2.3. La fotografía postmortem en casos de muerte perinatal
Año
Autor(es)
Titulo
2014
Blood &
Cacciatore
Best practice in bereavement photography after perinatal death:
qualitative analysis with 104 parents
BMC psychology
2011
Hochberg
Moments held: Photographing perinatal loss
The Lancet
2001
Alexander
The One Thing You Can Never Take Away”: Perinatal
Bereavement Photographs
MCN: The American Journal of
Sección 2.4. El uso de terminología en la comunicación con las madres y padres
Año
Autor(es)
Titulo
2014
Wilkinson,
Crespigny &
Xafis
Ethical language and decision-making for prenatally diagnosed
lethal malformations
Medicine
2005
JonasSimpson &
The language of loss when a baby ides prior to birth: Cocreating
Nursing Science Quarterly
7
1998
McMahon
human experience
Hutchon
Understanding miscarriage or insensitive abortion: Time for more
defined terminology?
American journal of obstetrics
and gynecology
Sección 3. Aspectos clínicos de la atención
Sección 3.1. El parto y su planificación*
Año
Autor(es)
Titulo
2015
Chakhtoura & Management of stillbirth delivery
Reddy
Medicine
2015
Di Stefano et
al
Mode of Delivery in Stillbirth, 1995-2004
Reproductive Sciences
2013
Gawron &
Kiley
Labor induction outcomes in third-trimester stillbirths
International Journal of
Gynecology & Obstetrics
2010
Silver &
Heuser
Stillbirth workup and delivery management
Clinical Obstetrics and
Gynecology
2011
Dudley
Medical management including delivery
Chapter. Spong (Ed). Stillbirth:
Prediction, Prevention and
Management
2007
Nanda et al
Expectant care versus surgical treatment for miscarriage (Review)
Cochrane Database
2007
Villar et al.
Maternal and neonatal individual risks and benefits associated with BMJ
caesarean delivery: multicentre prospective study
2007
Silver
Fetal Death
Obstetrics & Gynecology
*Véase también las guías de atención de ACOG y RCOG (paginas 9-10)
Sección 3.2. Administración de sedantes
Año
Autor(es)
Titulo
2014
Lacasse &
Cacciatore
Prescribing of Psychiatric Medication to Bereaved Parents
Following Perinatal/Neonatal Death: An Observational Study
Death Studies
2008
Gold,
Schwenk &
Johnson
Brief Report- Sedatives for Mothers of Stillborn Infants
Journal of Women's Health
Sección 3.3. Estudios de patología y autopsia
Año
Autor(es)
Titulo
2016
Wojcieszek et Characteristics of a global classification system for perinatal deaths: a BMC Pregnancy and Childbirth
al.
Delphi consensus study
2016
Miller et al.
Stillbirth evaluation: a stepwise assessment of placental pathology
and autopsy
American Journal of Obstetrics
and Gynecology
2015
Heazell &
Fenton
The Perinatal Postmortem from a Clinician’s Viewpoint
Chapter. Khong & Malcomson
(Eds). Keeling's Fetal and
8
neonatal pathology
2014
Horey,
Flenady et al
Decision influences and aftermath: parents, stillbirth and autopsy
Health Expectations
2014
Meaney,
Parental decision making around perinatal autopsy: a qualitative
Gallagher,Lut investigation
omski,
O'Donoghue
Health Expectations
2012
Breeze et al
Perinatal Postmortems: What Is Important to Parents and How Do Birth
They Decide?
2012
Downe et al
Post-mortem examination after stillbirth: views of UK-based
practitioners
European Journal of Obstetrics &
Gynecology and Reproductive
Biology
2012
Heazell
A difficult conversation: The views and experiences of parents and
professionals on the consent process for perinatal postmortem after
stillbirth
BJOG: An International Journal
of Obstetrics & Gynaecology
2011
Breeze et al
Attitudes to perinatal postmortem: parental views about research
participation
Journal of medical ethics
2011
Flenady et al
Stillbirth: the way forward in high-income countries
The Lancet
2011
Holste et al
Mothers’ attitudes towards perinatal autopsy after stillbirth
Acta obstetricia et gynecologica
Scandinavica
2011
Sullivan &
Monagle
Bereaved parents’ perceptions of the autopsy examination of their
child
Pediatrics
2002
Gordjin,
Erwich &
Khong
Value of the perinatal autopsy - Critique
Pediatric and Developmental
pathology
2002
Rankin,
Wright &
Lind
Cross sectional survey of parents’ experience and views of the
postmortem examination
BMJ
Sección 3.4. Atención en el puerperio
Año
Autor(es)
Titulo
2003
Busta Moore
& Catlín
Lactation Suppression: Forgotten Aspect of Care for the Mother of a Pediatric Nurisng
Dying Child
Sección 3.5. El Seguimiento después del alta
Año
Autor(es)
Titulo
2000
Friedrichs,
Daly &
Kavanaugh
Follow-Up of Parents Who Experience a Perinatal Loss:
Facilitating Grief and Assessing for Grief Complicated by
Depression
1988
Isle & Furrh
Development of a comprehensive follow-up care plan after perinatal The Journal of perinatal &
and neonatal loss
neonatal nursing
9
Sección 4. Guías de atención
Año
Autor(es)
Titulo
2016
SANDS UK
Pregnancy loss and death of a baby: Guidelines for professionals (4th SANDS (Stillbirth and Neonatal
Edition)
Death Society)
2014
Joanna Briggs Caring for families experiencing stillbirth - Part 1of 3: Diagnosis to Joanna Briggs Foundation
Institute
birth
2014
Joanna Briggs Caring for families experiencing stillbirth Part 2 of 3- The birth
Institute
Joanna Briggs Foundation
2014
NHS
National Health Service (NHSUK)
2013
Pastor
Buenas prácticas en atención a la pérdida perinatal
Montero, et al
Paraninfo Digital - Monográficos
de Invesigación en Salud
2011
SANDS
The Sands Audit Tool for maternity services Caring for parents
whose baby has died
SANDS (Stillbirth and Neonatal
Death Society)
2011
Umamanita/
EPEN
Guia atencion muerte perinatal
Umamanita
2010
NICE
Guideline CG45 antenatal and postnatal mental health 2007,
Amended 2010 (recommendation 1.3.1.4).
NICE National Institute for
Health and Care Excellence
2010
RCOG
Green-top guideline 55 – late intrauterine fetal death and stillbirth Royal College of Obstetricians
and Gynaecologists
2009
ACOG
Management of stillbirth. ACOG practice bulletin no 102
2006
RCOG
The management of early pregnancy loss: clinical green top guideline Royal College of Obstetricians
No. 25. London
and Gynaecologists
1989
Ilse et al
Guidelines for Medical Professionals: Providing Care to the Family
Experiencing Perinatal Loss, Neonatal Death, SIDS, or Other
Infant Death
A review of support available for loss in early and late pregnancy
American College of
Obstetricians and Gynecologists
National SIDS & Infant Death
Program Support Center
(NSIDPSC)
Sección 5. La experiencia vivida por los profesionales sanitarios
Año
Autor(es)
Titulo
2014
Nuzum,
Meaney &
O'Donoghue
The impact of stillbirth on consultant obstetrician gynaecologists: a
qualitative study
BJOG: An International Journal
of Obstetrics & Gynaecology
2013
JonasSimpson et al
Nurses’ Experiences of Grieving When There Is a Perinatal Death
SAGE Open
2012
Kelley &
Trinidad
Silent loss and the clinical encounter- Parents’ and physicians’
experiences of stillbirth–a qualitative analysis
BMC Pregnancy Childbirth
2011
Pastor
La vivencia de la pérdida perinatal desde la perspectiva de los
Montero, et al profesionales de la salud
Rev. Latino-Am. Enfermagem
2009
Chan &
Arthur
Nurses’ attitudes towards perinatal bereavement care
Journal of Advanced Nursing
2007
Fenwick &
Jennings
Providing perinatal loss care, Satisfying and dissatisfying aspects for Women and Birth
midwives
2003
McCreight
Perinatal grief and emotional labour: A study of nurses’ experiences
International journal of nursing
10
1998
Lundqvist &
Nilstun
in gynae wards
studies
Neonatal death and parents' grief. Experience, behaviour and
attitudes of Swedish nurses
Scandinavian journal of caring
sciences
11

La atención sanitaria tras una muerte intrauterina o

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