Psychosocial Health Outcomes for Family Caregivers Following the First Year of Bereavement
Bereavement; Adolescent; Adult; Aged; Caregivers/ Psychology; Depression/epidemiology/etiology; Health Status; Humans; Middle Aged; Psychiatric Status Rating Scales; Psychological Tests; Psychology; Social Adjustment; Spouses/psychology; Stress Psychological/epidemiology; Stress Psychological/etiology; Time Factors; Young Adult
The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of bereavement, for social functioning, depression, and distress. For all family caregivers, only depression scores declined significantly between T1 and T2 (p < 0.05). Caregiver relationship and gender did not make a difference in recovery. Results demonstrate that poor psychosocial health outcomes exist beyond the first year of bereavement. Early identification of these caregivers is necessary to provide mental health professionals the opportunity to intervene proactively.
Masterson MP; Hurley KE; Zaider T; Corner G; Schuler T; Kissane DW
Death Studies
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/07481187.2014.985406">10.1080/07481187.2014.985406</a>
Children with life-shortening conditions are denied the support they need, says charity
Healthcare Financing; Palliative Care; Respite Care; Adolescent; Charities; Child; Child Preschool; England; Hospice And Palliative Care Nursing; Humans; Infant; Infant Newborn; State Medicine; Young Adult
Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
[No authors listed]
Nursing Children And Young People
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<span><span></span><span><a href="https://doi.org/10.7748/ncyp.28.7.7.s6">10.7748/ncyp.28.7.7.s6</a></span></span><span><span><br /></span></span>
How holistic nursing can enhance the quality of life of children with cystic fibrosis
Adolescent; Child Health; Cystic Fibrosis; Cystic Fibrosis/ Nursing/psychology; Family/psychology; Female; Holistic Nursing/ Methods; Humans; Life-limiting Illness; Paediatrics; Quality Of Life; Respiratory System; Siblings/psychology; Well-being
Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses the effects of CF on the patient and her family, and how it affects their quality of life (QoL) and well-being.
Tointon K; Hunt J
Nursing Children And Young People
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://dx.doi.org/10.7748/ncyp.2016.e753" target="_blank" rel="noreferrer"><span>http://dx.doi.org/</span><span>10.7748</span><span>/</span><span>ncyp</span><span>.</span><span>2016</span><span>.</span><span>e753</span></a>
The AAP Resilience in the Face of Grief and Loss Curriculum
Adaptation Psychological;
Adult;
Attitude of Health Personnel;
Attitude to Death;
Burnout Professional/prevention & control;
Clinical Competence;
Curriculum;
Education Medical, Graduate/methods;
Female;
Grief;
Humans;
Internship and Residency/methods;
Male;
Pediatrics/education;
Societies Medical;
United States
A career in pediatrics can bring great joy and satisfaction. It can also be challenging and lead some providers to manifest burnout and depression. A curriculum designed to help pediatric health providers acquire resilience and adaptive skills may be a key element in transforming times of anxiety and grief into rewarding professional experiences. The need for this curriculum was identified by the American Academy of Pediatrics Section on Medical Students, Residents and Fellowship Trainees. A working group of educators developed this curriculum to address the professional attitudes, knowledge, and skills essential to thrive despite the many stressors inevitable in clinical care. Fourteen modules incorporating adult learning theory were developed. The first 2 sections of the curriculum address the knowledge and skills to approach disclosure of life-altering diagnoses, and the second 2 sections focus on the provider’s responses to difficult patient care experiences and their needs to develop strategies to maintain their own well-being. This curriculum addresses the intellectual and emotional characteristics patient care medical professionals need to provide high-quality, compassionate care while also addressing active and intentional ways to maintain personal wellness and resilience.
Serwint JR; Bostwick S; Burke AE; Church A; Gogo A; Hofkosh D; King M; Linebarger J; McCabe ME; Moon M; Osta A; Rana DT; Sahler OJ; Smith K; Rivera F; Baldwin CD
Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2016-0791">10.1542/peds.2016-0791</a>
Palliative Care in Obstetrics and Gynecology
Pain Management; Perinatal Care; Advance Care Planning; Communication; Female; Genital Neoplasms Female/complications/psychology/ Therapy; Humans; Infant Newborn; Life Expectancy; Mood Disorders/etiology/therapy; Nausea/therapy; Pain/etiology; Palliative
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depending on the complexity of the need. Health care providers caring for patients with life-limiting illness, including obstetrician–gynecologists, must possess a basic primary palliative care skill set, including symptom management for common symptoms such as pain and nausea and communication skills such as breaking bad news. This skill set must be taught and evaluated during training and used consistently in practice to ensure that our patients receive truly comprehensive care.
Lefkowits C; Solomon C
Journal Of Obstetrics And Gynecology
2016
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<a href="https://doi.org/10.1097/AOG.0000000000001739" target="_blank" rel="noreferrer">10.1097/AOG.0000000000001739</a>
Seeking the best training model for difficult conversations in neonatology
Communication; Neonatology/education; Professional-patient Relations; Computer Simulation; Curriculum; Fellowships And Scholarships; Female; Humans; Infant Newborn; Male; Models Educational; Parents; Pregnancy; Terminal Care
OBJECTIVES: We hypothesize that a formal simulation curriculum prepares neonatology fellows for difficult conversations better than traditional didactics. METHODS: Single-center neonatology fellowship graduates from 1999 to 2013 were sent a retrospective web-based survey. Some had been exposed to a Difficult Conversations curriculum (simulation group), others had not (no simulation group). The simulation group participated in one workshop annually, consisting of lecture, simulation, and debriefing. Scenarios were customized to year of training. Epoch comparisons were made between the simulation and no simulation groups. RESULTS: Self-rated baseline effectiveness at discussing difficult topics was not different. The simulation group reported more supervised family meetings and feedback after fellow-led meetings. Simulations were rated very positively. The simulation group reported increased comfort levels. Strategic pause and body positioning were specific communication skills more frequently acquired in the simulation group. In both groups, the highest ranked contributors to learning were mentor observation and clinical practice. In the simulation group, simulation and debriefing outranked didactics or other experiences. CONCLUSIONS: Simulation-based workshops improve communication skills in high stakes conversations. However, they do not substitute for mentor observation and experience. Establishing a structured simulation-based difficult conversations curriculum refines vital communication skills necessary for the high stakes conversations neonatologists direct in clinical practice.
Lechner BE; Shields R; Tucker R; Bender GJ
Journal Of Perinatal Medicine
2016
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<a href="https://doi.org/10.1515/jpm-2015-0110">10.1515/jpm-2015-0110</a>
Consistency in end of life care
Adolescent; Child; Child Preschool; Communication; Decision Making; Hospice And Palliative Care Nursing/ Standards; Humans; Infant; Nurse-patient Relations; Patient Participation; Pediatric Nursing/ Standards; Practice Guidelines As Topic
Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and young people age 1-19 years died in England and Wales in 2012.
Allen D
Nursing Children And Young People
2016
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<a href="http://journals.rcni.com/doi/full/10.7748/ncyp.28.8.8.s8" target="_blank" rel="noreferrer">10.7748/ncyp.28.8.8.s8</a>
We need to attract more students to palliative care
Choice; Health Services Accessibility; Hospice And Palliative Care Nursing; Humans Personnel Selection; Students Nursing; Terminal Care/manpower
A good palliative care service is responsive, available to families where they want it, provided round the clock, and co-ordinated by a lead healthcare professional or team. This is the view of one hospice director of care in response to a draft good practice guideline on end of life care from the National Institute for Health and Care Excellence.
Walker C
Nursing Children And Young People
2016
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<a href="http://dx.doi.org/10.7748/ncyp.28.8.5.s1" target="_blank" rel="noreferrer">10.7748/ncyp.28.8.5.s1</a>
Essential Support After Critical Illness: Pediatrics Extracorporeal Life Support (ECLS) Follow-Up Program
Dryden-Palmer K; Fazari L
Canadian Journal Of Critical Care Nursing (can J Crit Care Nurs), 32-33
2017
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Many people still fear child illness
One in four people show a 'worrying' lack of understanding about children's hospices and palliative care, a survey shows.
[No authors listed]
Nursing Children And Young People
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.7748/ncyp.29.5.7.s4">10.7748/ncyp.29.5.7.s4</a>
Improving Health Care Provider Communication in End-of-Life Decision-Making
Communication; Critically Ill; End-of-life; Family Meeting; Intensive Care
Critical care providers are responsible for many aspects of patient care, primarily focusing on preserving life. However, nearly 40% of patients who are admitted to an adult critical care unit will not survive. Initiating a conversation about end-of-life decision-making is a daunting task. Often, health care providers are not trained, experienced, or comfortable facilitating these conversations. This article describes a quality improvement project that identified current views on end-of-life communication in the intensive care unit and potential barriers that obstruct open discussion, and offering strategies for improvement.
©2017 American Association of Critical-Care Nurses.
Wilson T; Haut C; Akintade B
Aacn Advanced Critical Care
2017
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<a href="https://doi.org/10.4037/aacnacc2017302" target="_blank" rel="noreferrer">10.4037/aacnacc2017302</a>
Pediatric Palliative Care: A Five-Year Retrospective Chart Review Study
Child; Life Limiting; Life Threatening; Palliative Care; Patient Survival; Pediatric
BACKGROUND: More children are living with serious illness. However, survival and complexity of illnesses have not been described. OBJECTIVE: To describe types of illnesses, timing of referral, and time to death following referral to palliative care; to examine the associations between demographics and clinical characteristics and patient survival; and to examine whether average daily pain decreases after referral. DESIGN: Retrospective chart review of all children ages 2-16 years referred to palliative care at one large children's hospital during the five-year study period from January 1, 2009, through December 31, 2013. MEASUREMENTS: The primary outcome was patient survival and the main independent predictor was type of illness. Kaplan-Meier estimation was used to estimate patient survival time following referral, Cox proportional hazards regression was used to build predictive models based on gender, age, race, religion, and types of illnesses, and paired t-test compared the assessment of pain before and after referral. RESULTS: The cohort consisted of 256 children. Survival experience did not differ significantly based on gender, age, race, or religion (p ≥ 0.05); however, survival did vary based on referring diagnosis (χ2 = 40.3, df = 4, p < 0.001), particularly cancer. Forty-eight children with three days of pain assessments pre- and postreferral had significantly decreased pain postreferral (t(47) = 1.816, p < 0.05 one tailed), supporting our hypothesis. DISCUSSION: Results provide important information on the complexity of disease processes for children referred to palliative care, types of illnesses referred, survival, and pain levels. Results reflect earlier referral to palliative care for most children and highlight the medical complexity especially for children with congenital and genetic diagnoses.
Thrane SE; Maurer SH; Cohen SM; May C; Sereika SM
Journal Of Palliative Medicine
2017
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<a href="https://doi.org/10.1089/jpm.2017.0038" target="_blank" rel="noreferrer">10.1089/jpm.2017.0038</a>
Initiatives for Responding to Medical Trainees' Moral Distress about End-of-Life Cases
Moral distress frequently arises for medical trainees exposed to end-of-life cases. We review the small literature on best practices for reducing moral distress in such cases and propose two areas to target for moral distress reduction: medical education and organizational ethics programs. Students require training in end-of-life dialogues and truthful prognostication, which are not generally available without skilled mentors. But physician-mentors and teachers can suffer from lingering moral residue themselves, which can affect the teaching culture and student expectations. Finally, reducing unit moral distress that affects learners requires formal educational opportunities to debrief about difficult end-of-life cases and formal institutional mechanisms for effective clinical ethics consultation.
© 2017 American Medical Association. All Rights Reserved.
Rosenthal MS; Clay M
Ama Journal Of Ethics
2017
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<a href="https://doi.org/10.1001/journalofethics.2017.19.6.stas1-1706" target="_blank" rel="noreferrer">10.1001/journalofethics.2017.19.6.stas1-1706</a>
Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study
Palliative Care; Pediatrics; Research; Children; Databases Factual; Delphi Study; Delphi Technique; Health Services Needs And Demand; Hospice Care; Humans; Ireland; Life-limiting Conditions; Parents; Quality Of Life; Research Priorities; Siblings; Terminal Care
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies. As a new specialty, there is a need to develop an evidence-based approach to providing children's palliative care. In order to do this in a systematic way, identification of the research priorities in children's palliative care within Ireland is required.
Quinn C; McCarthy S; Devins M; O'Reilly M; Twomey M; Ling J
International Journal Of Palliative Nursing
2017
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<a href="https://doi.org/10.12968/ijpn.2017.23.2.88" target="_blank" rel="noreferrer">10.12968/ijpn.2017.23.2.88</a>
Palliative care from diagnosis for all ages including children and young people
S Mitchell; J Dale
Bmj (Clinical Research Edition)
2017
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A survey of the experiences of families with bereavement support services following a perinatal loss
Bereavement Services; Experiences; Loss; Mothers; Perinatal Death; Survey
Background: Although there are many studies that explore complicated grief, no studies have examined the impact of bereavement support services on the progression to complicated grief. The aims of our study were to describe the types of bereavement services utilised by families who have experienced a perinatal loss, and explore the impact of these services on the families’ bereavement journey.
Methods: Women who experienced a perinatal loss were sent a survey consisting of the modified Perinatal Post Traumatic Stress Disorder (PTSD) questionnaire, items addressing use of bereavement services, and the Inventory of Complicated Grief. Respondents also provided free-text comments.
Results: Forty-seven women were included in the study (34% response rate); 75% had a perinatal PTSD score which indicated the need for support from mental health services and 75% accessed services. Forty-three percent met the criteria for complicated grief. Women whose PTSD scores were in the highest quartile were most likely to access services; 45% of surveyed women used SIDS and Kids of the Australian Capital Territory (SKACT) accessing counselling (90%), support groups (50%), playgroups (15%) and the helpline (10%). Fifty-seven percent of women surveyed accessed non-SKACT services and predominantly used psychologists (66%) and general practitioners (30%). Requests were made for grief training of hospital staff, and for referral to bereavement services to be offered after hospital discharge.
Conclusions: Following a perinatal loss, a high proportion of women had high PTSD scores and complicated grief despite utilising local bereavement services. Our findings support the continuation of current support services with modifications that may potentially improve recovery following a perinatal loss.
Inati V; Matic M; Phillips C; Maconachie N; Vanderhook F; Kent AL
The Australian & New Zealand Journal Of Obstetrics & Gynaecology
2017
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<a href="http://onlinelibrary.wiley.com/doi/10.1111/ajo.12661/abstract" target="_blank" rel="noreferrer">10.1111/ajo.12661</a>
Strategic thinking: end of life care
Major announcements were made in all four parts of the UK at the end of last year. All have the potential to improve the way seriously ill children are looked after.
Evans N
Nursing Children And Young People
2017
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<a href="https://doi.org/10.7748/ncyp.29.1.8.s8" target="_blank" rel="noreferrer">10.7748/ncyp.29.1.8.s8</a>
A Proposed Model for Perinatal Palliative Care
Multidisciplinary Care Team; Palliative Care; Perinatal Loss; Trisomy 13
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal diagnosis is confirmed. The purpose of this article is to highlight the multidisciplinary care model used within a perinatal palliative care program. A case study provides a unique perspective on support needed for parents who anticipate that their newborn may die before or shortly after birth.
Copyright © 2017 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.
Cole JCM; Moldenhauer JS; Jones TR; Shaughnessy E; Zarrin H; Coursey AL; Munson DA
Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
2017
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<a href="https://doi.org/10.1016/j.jogn.2017.01.014" target="_blank" rel="noreferrer">10.1016/j.jogn.2017.01.014</a>
The 'surprise' question in paediatric palliative care: A prospective cohort study
Paediatric; Palliative Care; Prognosis; Survival
Background: The question ‘would you be surprised if this patient died in the next 12-months’ is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children.
Aim: To assess the prognostic accuracy of the surprise question when used by a multidisciplinary team to predict survival outcomes of children with life-limiting conditions over a 3 and 12 month period.
Design: A prospective cohort study.
Setting/participants: Six multidisciplinary team members working in a children’s hospice answered a 3 and 12 month surprise question about 327 children who were either newly referred or receiving care at the hospice between 2011 and 2013.
Results: The prognostic accuracy of the multidisciplinary team for the 3 (and 12)month surprise question were: sensitivity 83.3% (83.3%), specificity 93.2% (70.7%), positive predictive value 41.7% (23.6%), negative predictive value 99% (97.5%) and accuracy 92.6% (71.9%). Patients with a ‘no’ response had an increased risk of death at 3 (hazard ratio, 22.94, p ⩽ 0.001) and 12 months (hazard ratio, 6.53, p ⩽ 0.001).
Conclusion: The surprise question is a highly sensitive prognostic tool for identifying children receiving palliative care who are in the last 3 and 12 months of life. The tool is accurate at recognising children during stable periods demonstrated through a high negative predictive value. In practice, this tool could help identify children who would benefit from specialist end of life care, act as a marker to facilitate communications on advance care planning and assist in resource allocation.
Burke K; Coombes LH; Menezes A; Anderson AK
Palliative Medicine
2017
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<a href="https://doi.org/10.1177/0269216317716061" target="_blank" rel="noreferrer">https://doi.org/10.1177/0269216317716061</a>
A Mind-Body Approach to Pediatric Pain Management
Acupuncture; Hypnosis; Meditation; Mind-body Medicine; Pain Management; Pediatrics; Yoga
Pain is a significant public health problem that affects all populations and has significant financial, physical and psychological impact. Opioid medications, once the mainstay of pain therapy across the spectrum, can be associated with significant morbidity and mortality. Centers for Disease and Control (CDC) guidelines recommend that non-opioid pain medications are preferred for chronic pain outside of certain indications (cancer, palliative and end of life care). Mindfulness, hypnosis, acupuncture and yoga are four examples of mind-body techniques that are often used in the adult population for pain and symptom management. In addition to providing significant pain relief, several studies have reported reduced use of opioid medications when mind-body therapies are implemented. Mind-body medicine is another approach that can be used in children with both acute and chronic pain to improve pain management and quality of life.
Brown ML; Rojas E; Gouda S
Children (basel)
2017
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<a href="https://doi.org/10.3390/children4060050" target="_blank" rel="noreferrer">10.3390/children4060050</a>
"Let's bring her home first." Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care
Act Categories; Diagnosis; Home Care; Nervous System; Place Of Death; Specialized Pediatric Palliative Care
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients. OBJECTIVES: We asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death. METHODS: Retrospective single center chart analysis of 212 consecutive patients on SPPHC (2009-2015). RESULTS: Main International Statistical Classification of Diseases and Related Health Problems, 10th Revision groups were nervous system, congenital abnormalities, neoplasia, and metabolic disease, reflecting the mortality statistics for patients one to 20 years. Thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2. ACT-1 patients mostly needed high-intensity care for short durations, ACT-4 patients showed long survival times with mostly intermittent care. Seventy-five percent of patients showed nervous system involvement. Eighty-four percent died at home, 12% in hospital, and 4% in a hospice, with 96% dying at their preferred place. CONCLUSION: Our data on SPPHC show 1) significant differences between Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health groups in terms of care needs and survival; 2) a high prevalence of children with neurological problems; and 3) a large majority of children dying at home. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Bender HU; Riester MB; Borasio GD; Fuhrer M
Journal Of Pain And Symptom Management
2017
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<a href="https://doi.org/10.1016/j.jpainsymman.2017.04.006" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.04.006</a>
Exploring perinatal death with midwifery students' using a collaborative art project
Grief; Perinatal Death; Affective Learning; Artist; Collaborative Artwork; Education Nursing; Female; Humans; Infant Newborn; Ireland; Midwifery/ Education; Midwifery Students; Mothers/psychology; Parents; Perinatal Death; Pregnancy; Students Nursing
OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews following institutional ethical approval. SETTING: A regional Maternity Hospital in Ireland which hosted the National Artwork and Exhibition exploring the hidden world of infant death. PARTICIPANTS: A purposive sample of six consenting post registration midwifery students who had attended the Amulet artwork and exhibition. FINDINGS: Four core themes emerged and these were i) entering the mother's world and hearing her pain; ii) the journey of grief and connecting with the bereaved parent's unique experience; iii) facing the challenge of providing effective perinatal bereavement care; and iv) maintaining a journey of compassionate practice. CONCLUSION AND IMPLICATIONS FOR PRACTICE: Exposure to, and reflection on the Amulet artwork and exhibition increased students' awareness and insight into the non-linear nature of the grieving process, and to the importance of maintaining a journey of compassionate care for parents experiencing perinatal death. The findings suggest that the use of creative women-centered strategies promote affective learning in relation to perinatal death and so may be of use to educators and maternity care providers. Copyright © 2016 Elsevier Ltd. All rights reserved.
Barry M; Quinn C; Bradshaw C; Noonan M; Brett M; Atkinson S; New C
Nurse Education Today
2017
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<a href="https://doi.org/10.1016/j.nedt.2016.09.004" target="_blank" rel="noreferrer">10.1016/j.nedt.2016.09.004</a>
Meaning and coping orientation of bereaved parents: Individual and dyadic processes
Adaptation Psychological; Bereavement; Child; Female; Humans; Male; Parents/ Psychology
The present study aimed to examine whether bereaved parents “meaning-made”–defined as results of attempts to reduce discrepancies between the meaning assigned to the death of the child and self and world-views—was influenced by their own and their partner’s coping orientations. Coping orientations were conceptualized within the Dual Process Model, which entails loss coping orientation (LO; focus on the loss itself), restoration coping orientations (RO; focus on stressors that come about as an indirect consequence of the bereavement), and a flexible oscillation between both coping orientations. The sample consisted of 227 couples identified through obituary notices in local and national newspapers, who provided data at 6, 13, and 20 months after the death of their child. At all three points of measurement, both partners independently completed the Dual Coping Inventory (DCI) and a scale developed by the authors about meaning-made from the loss. Data were analyzed using a multi-level Actor-Partner Interdependence Model. Results show that the combination of parents’ own LO and RO (operationalized through the interaction effect between LO and RO) have a positive effect in parents’ meaning-made. Partners’ LO have a negative effect in parents’ meaning-made. These results highlight the importance of, in the context of parental bereavement, being flexible by using both coping orientations, and of acknowledging the interdependence between partners, namely, the interpersonal process by which partner’s coping affect one’s meaning-made.
Albuquerque S; Buyukcan-Tetik A; Stroebe MS; Schut HAW; Narciso I; Pereira M; Finkenauer C
Plos One
2017
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<a href="https://doi.org/10.1371/journal.pone.0178861" target="_blank" rel="noreferrer">10.1371/journal.pone.0178861</a>
Assessing the quality of bereavement care after perinatal death: development and piloting of a questionnaire to assess parents' experiences
Stillbirth; Bereavement Support; Grief; Perinatal Death; Pilot Study; Questionnaire
Understanding parents' experience of care is essential to develop high-quality perinatal bereavement services. This study aimed at developing a questionnaire to identify parents' needs and record their experience of care. The patient experience questionnaire was developed by professionals and parents, and piloted in a tertiary maternity unit. Responses were received from 58 parents. Sensitivity and kindness of staff and time spent with their baby were ranked as 'very important' by 95% of parents. Care in these areas largely met their needs (90%), although 5% of respondents stated that partners could have been more involved. Between 8% and 15% of respondents did not feel that language used at the diagnosis of fetal death was sensitive, clear and unambiguous. Parents did not always receive written information about their care (5%) or post-mortem (13%). Analysis of bereaved parents' responses identified areas for improvement including greater involvement of partners and a need for timely information. Impact statement What is already known on this subject?: Good quality bereavement care after perinatal death reduces the negative emotional, psychological and social effects for parents. Description of parents' experiences is a potential means to improve the quality of perinatal bereavement care. What do the results of this study add?: Parents' needs and experiences of care after perinatal death were recorded using a patient-experience questionnaire designed by a multi-professional team and parents. Staff behaviour, particularly sensitivity and kindness was highly valued by parents. Giving both verbal and written information could be improved. Training is needed for professionals, particularly those who come into contact with bereaved parents less frequently. What are the implications of these findings for clinical practice and/or further research?: Description of parents' priorities and views can be used to identify areas for improvement in perinatal bereavement care. Parents' views should be regularly sought and used to develop local services in an iterative process.
Aiyelaagbe E; Scott RE; Holmes V; Lane E; Heazell AEP
Journal Of Obstetrics And Gynecology
2017
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DOI: 10.1080/01443615.2017.1316710