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Article

Bereaved mothers' and fathers' prolonged grief and psychological health 1-5 years after loss - a nationwide study

POHLKAMP, Lilian ; KREICBERGS, Ulrika ; SVEEN, Josefin
Psycho-oncology, 20/05/2019, Pagination inconnue

Thème : Deuil et travail du deuil.

PERSONNE ENDEUILLEE ; PARENT ; DEUIL COMPLIQUE ; ETAT PSYCHOLOGIQUE ; DEPRESSION ; STRESS ; TRAUMATISME ; INSOMNIE

OBJECTIVE: To assess differences in prolonged grief, depression, posttraumatic stress and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender, and to assess potential interactive effects of time since loss and gender on bereavement outcomes.
METHODS: This study examined symptom levels of Prolonged Grief Disorder, depression, posttraumatic stress and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1-5 years previously, subdivided to five subsamples, one for each year since loss. ANOVA was used to assess differences in symptom levels, related to years since loss and gender.
RESULTS: Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms and insomnia, were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels.
CONCLUSIONS: Cancer-bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to five years after the death of their child. Findings highlight that bereaved parents may need long-term support and the results deserve further attention in research and clinical care.

Origine : PubMed

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Parents' acceptance and regret about end of life care for children who died due to malignancy

DAS, Kunal ; KHANNA, Tanvi ; ARORA, Anshika ; AGRAWAL, Nitika
Supportive care in cancer, 01/05/2019, p. 1-6

Thème : Soins.

PEDIATRIE ; FIN VIE ; CANCEROLOGIE ; RECHERCHE QUALITATIVE ; PREFERENCE ; PARENT

PURPOSE: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers.
METHOD: This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed.
RESULT: Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons).
CONCLUSION: Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.

Origine : PubMed

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Article

Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit - a qualitative interview study

MITCHELL, Sarah ; SPRY, Jenna L. ; HILL, Emma ; COAD, Jane ; DALE, Jeremy ; PLUNKETT, Adrian
BMJ Open, 09/05/2019, vol.9, n°5, p. 1-10

Thème : Soins. Cote : eD02.03.03

PEDIATRIE ; SOIN INTENSIF ; RESSENTI ; PRISE DECISION ; PARENT ; RECHERCHE QUALITATIVE ; FIN VIE ; ROYAUME UNI

OBJECTIVES: To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).
DESIGN: An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.
SETTING: A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK.
PARTICIPANTS: 17 parents of 11 children who had died in the PICU.
RESULTS: Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a 'place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU.
CONCLUSIONS AND IMPLICATIONS: The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.

Origine : PubMed

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Article

Parents' experiences of requests for organ and tissue donation - the value of asking

DARLINGTON, Anne-Sophie ; LONG-SUTEHALL, Tracy ; RANDALL, Duncan ; WAKEFIELD, Claire ; ROBINSON, Victoria ; BRIERLEY, Joe
Archives of disease in childhood, 11/05/2019, Pagination inconnue

Thème : Soins.

PARENT ; DON ORGANE ; FIN VIE ; ETUDE RETROSPECTIVE ; RECHERCHE QUALITATIVE ; PEDIATRIE ; NEONATALOGIE ; UNITE SOINS PALLIATIFS

OBJECTIVE: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences.
DESIGN: A retrospective qualitative study.
SETTING: Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice.
PATIENTS: Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs.
INTERVENTIONS: None.
MAIN OUTCOMES AND MEASURES: Parents' and HCPs' views and experiences of discussions about OTD.
RESULTS: 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents' assumptions about health of organs (when donation is not discussed).
CONCLUSIONS: The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.

Origine : PubMed

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Article

The experience of parents living with a child with cancer at the end of life

WANG, Sui-Ching ; WU, Li-Min ; YANG, Yung-Mei ; SHEEN, Jiunn-Ming
European journal of cancer care, 24/04/2019, Pagination inconnue

Thème : Soins.

PARENT ; RESSENTI ; CANCER ; FIN VIE ; ENFANT ; PHENOMENOLOGIE ; TAIWAN

The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical centre in Taiwan. Data were collected from in-depth interviews and were analysed according to the method of Giorgi. Two major themes emerged: (a) immersion in the struggling and suffering, which included conflicts and arguments, witnessing their child suffering, denying their child being at EOL and waiting for a miracle; and (b) acceptance of death, which included an end to suffering, living in the moment, discussion of death and letting go. Parents had difficulty adapting to a palliative care perspective due to their misconception that this meant giving up on their child. In addition, religion and belief played varied and important roles in the lived experience of these parents with a child with incurable cancer. Healthcare providers must address the core value of palliative care and help parents accept the reality of their child's situation at an earlier stage in order to provide a better quality of life for the child.

Origine : PubMed

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Article

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care - a qualitative study

VERBERNE, Lisa M. ; KARS, Marijke C. ; SCHOUTEN-VAN MEETEREN, Antoinette Y. N. ; VAN DEN BERGH, Esther M. M. ; BOSMAN, Diederik K. ; COLENBRANDER, Derk A. ; GROOTENHUIS, Martha A. ; VAN DELDEN, Johannes J. M.
European journal of pediatrics, 19/05/2019, p. 1-11

Thème : Soins. Cote : eD02.03.03

PARENT ; COPING ; RECHERCHE QUALITATIVE ; PEDIATRIE ; DEMARCHE PALLIATIVE ; ACCOMPAGNEMENT ; STRATEGIE

Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals’ support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).
Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.

Origine : PubMed

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Article

Birth planning in uncertain or life-limiting fetal diagnoses - perspectives of physicians and parents

CORTEZZO, DonnaMaria E. ; BOWERS, Katherine ; CAMERON MEYER, Marcella
JOURNAL OF PALLIATIVE MEDICINE, 07/05/2019, Pagination inconnue

Thème : Soins.

MALADIE LETALE ; PROJET SOIN ; GROSSESSE ; PARENT ; RELATION PERSONNEL SOIGNANT FAMILLE ; COMMUNICATION

Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition.
Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans.
Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data.
Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty.
Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.

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Article

Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the dual-process model

CANTWELL-BARTL, Annie
DEATH STUDIES, 10/2018, vol.42, n°9, p. 569-578

Thème : Psychologie, psychanalyse. Cote : 00.07DEA

CHAGRIN ; COPING ; MALADIE LETALE ; HANDICAP ; MALADIE CARDIOVASCULAIRE ; MODELE ; PARENT

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents.

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Article

Reflections on the development of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness

HANLON, Peter ; GUERIN, Suzanne ; KIERNAN, Gemma
DEATH STUDIES, 10/2018, vol.42, n°9, p. 593-603

Thème : Deuil et travail du deuil. Cote : 00.07DEA

SOUTIEN DEUIL ; MORT ; ENFANT ; MALADIE GRAVE ; PARENT ; FAMILLE ; PERSONNE ENDEUILLEE

While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection, and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance, and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned.

Origine : PubMed

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Article

Understanding grief in children who have lost a parent with cancer - how do they give meaning to this experience? Results of an interpretative phenomenological analysis

FLAHAULT, Cécile ; DOLBEAULT, S. ; SANKEY, C. ; FASSE, L.
DEATH STUDIES, 09/2018, vol.42, n°8, p. 483-490

Thème : Deuil et travail du deuil. Cote : 00.07DEA

DEUIL ; PERSONNE ENDEUILLEE ; ENFANT ; MORT ; PARENT ; PHENOMENOLOGIE ; CANCER ; RECHERCHE QUALITATIVE ; SENS ; SOUTIEN DEUIL

Though the adjustment of bereaved children is increasingly investigated through quantitative studies, their intimate representations regarding the loss of their parent remain unknown. This qualitative study aims at exploring how they give meaning to this experience. Nondirective interviews with bereaved children were conducted and submitted to an interpretative phenomenological analysis. Fourteen children (8 boys, 6 girls, mean age = 8.5 years) were recruited. Seven major themes depicting their grief experience were identified. The importance of the surviving parent is critically highlighted. Findings suggest that the remaining parent could become a fundamental actor in providing grief support for the bereaved children.

Origine : PubMed

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Article

Assessing the impact of factors on parental grief among older Chinese parents

ZHENG, Yongqiang ; WUEST, Leslie G.
DEATH STUDIES, 24/05/2019, p. 1-9

Thème : Deuil et travail du deuil.

FACTEUR ; DEUIL ; PARENT ; PERSONNE ENDEUILLEE ; PERSONNE AGEE ; CHINE ; COPING ; ATTACHEMENT ; SOUTIEN DEUIL

A sample of 206 older Chinese bereaved parents was recruited and the effects of attachment style, coping strategy, social support, and spirituality on parental grief were investigated utilizing structural equation modeling. The results revealed problem-focused and dysfunctional coping strategy, insecure attachment style, less social support from family and friends would likely lead to higher levels of parental grief. The study explored how the unique context of Chinese culture and policies may shape the severity and duration of parental grief. It provides a baseline to understand the complexity of parental grief in China and to design and improve future interventions.

Origine : Taylor and Francis+NEJM

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Article

"Real experiences which increase empathy" - a preliminary exploration of the utility of an audio archive describing parents’ and clinicians’ experiences of stillbirth

BECK, Emma ; GIBSON, Nicola ; HEAZELL, Alexander
BEREAVEMENT CARE, 02/01/2019, vol.38, n°1, p. 33-41

Thème : Deuil et travail du deuil.

MORT PERINATALE ; SOUTIEN DEUIL ; PARENT ; OUTIL ; PERSONNEL SANTE ; EMPATHIE

Perinatal death has an enduring effect on parents which is altered by their experience of care. However, professionals frequently report feeling underprepared to care for bereaved parents. This study evaluated parents’ and professionals’ experiences of using an audio archive of experiences of perinatal deaths (www.stillbirthstories.org) using a self-reported questionnaire. Eighty-three percent of parents and the public (n = 33) found listening to the archive helpful, with no negative responses. Fifty-four percent stated that it changed how they felt about having a perinatal death, increasing the proportion of respondents who felt supported (12 to 27%) and decreasing the proportion who felt alone and anxious (27 to 15%). All professionals accessing the archive found it helpful, stating it increased empathy and understanding of parents’ emotions which improved confidence that parents’ needs could be met. Archives of real experiences may help parents and professionals after perinatal death. Further research is needed whether such an archive has a wider reach and accessibility than traditional support networks.

Origine : Taylor and Francis+NEJM

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Article

Reasons why we read blogs and memorial pages of people who lost a child - life motives of emotional rubberneckers

CHUDZICKA-CZUPALA, Agata ; BASEK, Agata
DEATH STUDIES, 17/05/2019, p. 1-12

Thème : Deuil et travail du deuil.

RESEAU SOCIAL ; SOUVENIR ; PARENT ; PERSONNE ENDEUILLEE ; MOTIVATION ; BESOIN ; ACCOMPAGNEMENT ; PHASE TERMINALE

Researchers have been interested in the subject of accompanying individuals who experienced a child’s terminal illness and death, sharing their grief online. Using The Reiss Motivation Profile and qualitative methods, the authors identified the life motives of emotional rubberneckers–grief blog and memorial page readers. Key reasons for the regular behavior of this kind are found: interest in the protagonist’s health, compassion, will to help, and sense of bonding. Such activity provides support to the respondents. Readers’ important life motives include the substantial need to care for their loved ones, to be needed, emotional stability, and a low need for power.

Origine : Taylor and Francis+NEJM

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Article

Participation in online research examining end-of-life experiences - is it beneficial, burdensome, or both for parents bereaved by childhood cancer?

TAGER, Julia ; BATTLES, Haven ; BEDOYA, Sima Zadeh ; GERHARDT, Cynthia A. ; YOUNG-SALEME, Tammi ; WIENER, Lori
Journal of pediatric oncology nursing, 06/2019, vol.36, n°3, p. 170-177

Thème : Deuil et travail du deuil.

FIN VIE ; PERSONNE ENDEUILLEE ; PARENT ; CANCER ; MORT ; ENFANT ; PERCEPTION ; DEUIL ; RECHERCHE ; PARTICIPATION ; INTERNET

It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.

Origine : PubMed

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Article

Termination of pregnancy for foetal anomalies - parents' preferences for psychosocial care

DEKKERS, Frederike H. W. ; GO, Attie T. J. I. ; STAPERSMA, Luuk ; EGGINK, Alex J. ; UTENS, Elisabeth M. W. J.
Prenatal diagnosis, 17/04/2019, Pagination inconnue

Thème : Deuil et travail du deuil.

INTERRUPTION MEDICALE GROSSESSE ; PARENT ; ACCOMPAGNEMENT PSYCHOSOCIAL ; ETUDE RETROSPECTIVE ; ETUDE COHORTE

OBJECTIVE: To investigate, from the perspective of women and partners, at what stage of a termination of pregnancy (TOP) for foetal anomalies psychosocial care (PSC) is most meaningful, what topics should be discussed, and who should provide PSC.
METHOD: A cross-sectional retrospective cohort study was conducted with a consecutive series of 76 women and 36 partners, who completed a semi-structured online questionnaire.
RESULTS: Overall, women expressed a greater need for PSC than their partners. Parents expressed a preference for receiving support from a maternal-foetal medicine specialist to help them understand the severity and consequences of the anomalies found and to counsel them in their decision regarding termination. Parents showed a preference for support from mental healthcare providers to help with their emotional responses. Forty-one percent of the women visited a psychosocial professional outside of the hospital after the TOP, indicating a clear need for well-organised aftercare.
CONCLUSION: Different disciplines should work together in a complementary way during the diagnosis, decision-making, TOP, and aftercare stages. Parents' need for PSC should be discussed at the beginning of the process. During aftercare, attention should be paid to grief counselling, acknowledgement of the lost baby's existence, and possible future pregnancies.

Origine : PubMed

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Article

Parental strengths in caring for their dying child - long-term follow-up in Kenya

HALEY, Janice Marie
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 04/2019, vol.21, n°2, p. 144-151

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : 00.07JHP

KENYA ; ETUDE LONGITUDINALE ; PARENT ; ENFANT ; MOURANT ; PHASE TERMINALE ; PHASE PALLIATIVE ; FAMILLE

Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. Results of past studies demonstrated this Strengths Guide (SG) interview to be an intervention bringing a heightened realization of the importance and utilization of one's inner strengths. The purpose of this study was to assess the long-term impact of this SG with a population of parents who participated in a previous study using the SG. This descriptive study was conducted using a quantitative tool, the Personal Strength Rating Scale, comparing the post-SG interview results with those results obtained 3 years later. Participants in this study were parents caring for a child receiving palliative/hospice care at home in Kenya. Results revealed the long-term retention of strengths following the SG interview 3 years previously was, for most sources of strength, equal to or greater than those obtained immediately following the SG.

Origine : journals.lww.com

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Scoping review of memory making in bereavement care for parents after the death of a newborn

THORNTON, Rebecca ; NICHOLSON, Patricia ; HARMS, Louise
Journal of obstetric, gynecologic and neonatal nursing, 01/04/2019, Pagination inconnue

Thème : Deuil et travail du deuil.

DEUIL ; CHAGRIN ; PARENT ; NOURRISSON ; SOUVENIR ; PHOTOGRAPHIE ; REVUE LITTERATURE

Objective : To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research.
Data Sources : We conducted a systematic search of four health-related databases (MEDLINE Complete, CINAHL Complete, Embase, and PsychINFO) for original research in January 2019. We then conducted a manual search of the reference lists of all included articles and a citation search via Scopus.
Study Selection : Selection criteria initially included all original research articles available in English that related to parents’ perceptions of perinatal or neonatal palliative care or bereavement care for parents after the death of a newborn. These criteria were refined as we developed familiarity with the available literature. Our initial screening of article titles and abstracts yielded 287 articles for full-text review. After full-text analysis, we included all 25 qualitative or mixed method research articles that met selection criteria.
Data Extraction : We used a spreadsheet modeled on the Joanna Briggs Institute Review Guidelines (2015) for data extraction.
Data Synthesis : Available research was focused primarily on parents’ perceptions of care during and after the death of their newborns. Memory making interventions emerged as significant elements of the experiences of bereaved parent. Several researchers examined parents’ perceptions of specific memory making interventions, such as bereavement photography. Contact with the newborn, opportunities for caregiving, bereavement photography, and the collection or creation of mementos emerged as important elements of memory making. Parents also identified a need for guidance about each of these key strategies for memory making.
Conclusion : We identified few studies focused entirely on memory making as an intervention in the context of bereavement care for parents. However, memory making emerged as a recurring theme throughout qualitative and mixed method studies on parents’ perceptions of perinatal or neonatal end-of-life care. Further research is required to provide evidence to guide memory making interventions for bereaved parents who experience the death of a newborn.

Origine : ScienceDirect

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Telling adolescents that a parent has died

SHEEHAN, Denice Kopchak ; HANSEN, Dana ; STEPHENSON, Pam ; MAYO, Murray ; ALBATAINEH, Raya ; ANABA, Ezinne
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 04/2019, vol.21, n°2, p. 152-159

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : 00.07JHP

ADOLESCENT ; PAROLE ; MOURANT ; PARENT ; RECHERCHE QUALITATIVE ; ETATS-UNIS ; UNITE SOINS PALLIATIFS

The aim of this study was to explicate ways in which parents tell their adolescents about a parent's death. This study used a descriptive, qualitative design. From a large hospice in northeastern Ohio, nine adolescent children and six surviving spouses of recently deceased hospice patients were recruited. Participants completed a demographic questionnaire and a semistructured individual interview. Thematic content analysis techniques were used to analyze the data. Surviving parents tell adolescents about the parent's death in ways that are intended to inform and ease the adolescents' distress. They engage in the process of disclosure in one of three ways: measured telling, matter-of-fact telling, and inconsistent telling. Findings from the current study are consistent with the ways parents told their children about an ill parent's life-threatening illness and imminent death. The findings support a framework that describes the processes of disclosure of a parent's illness, imminent death, and death to their adolescent children. Predeath findings about telling foreshadowed the postdeath findings. These results can be used to inform the development of interventions in which nurses and other health care professionals assist families with disclosure before and after death by tailoring strategies according to the family's communication style.

Origine : journals.lww.com

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Availability of less invasive prenatal, perinatal and paediatric autopsy will improve uptake rates - a mixed-methods study with bereaved parents

LEWIS, C. ; RIDDINGTON, M. ; HILL, M. ; ARTHURS, O. J. ; HUTCHINSON, J. C. ; CHITTY, L. S. ; BEVAN, C. ; FISHER, J.A. ; WARD, J. ; SEBIRE, N. J.
BJOG: an international journal of obstetrics and gynaecology, 05/2019, vol.126, n°6, p. 745-753

Thème : Deuil et travail du deuil. Cote : eD10.01.00

PRISE DECISION ; PARENT ; ANGLETERRE ; DEUIL ; MORT PERINATALE ; MORT NE ; AUTOPSIE ; CONSENTEMENT ; RECHERCHE QUALITATIVE ; ETUDE TRANSVERSALE ; GROSSESSE ; IMAGERIE RESONANCE MAGNETIQUE ; MORT FOETALE IN UTERO

OBJECTIVE: To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake.
DESIGN: Mixed methods study.
SETTING: Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations.
SAMPLE: Eight hundred and fifty-nine surveys and 20 interviews with bereaved parents.
METHODS: Cross-sectional survey and qualitative semi-structured telephone interviews.
MAIN OUTCOME MEASURES: Likely uptake, preferences, factors impacting decision-making, views on different autopsy methods.
RESULTS: Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy (MIA), non-invasive autopsy (NIA) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA. Regarding parental preferences, 45.5% preferred MIA, 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35-0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy.
CONCLUSION: Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care.

Origine : PubMed

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Parental strengths in caring for their dying child - long-term follow-up in Kenya

HALEY, Janice Marie
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 04/2019, vol.21, n°2, p. 144-151

Thème : Soins. Cote : 00.07JHP

ETAPE MOURIR ; ENFANT ; KENYA ; GUIDE ; ACCOMPAGNEMENT ; PARENT ; EVALUATION ; ECHELLE MESURE ; UNITE SOINS PALLIATIFS ; DEMARCHE PALLIATIVE

Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. Results of past studies demonstrated this Strengths Guide (SG) interview to be an intervention bringing a heightened realization of the importance and utilization of one's inner strengths. The purpose of this study was to assess the long-term impact of this SG with a population of parents who participated in a previous study using the SG. This descriptive study was conducted using a quantitative tool, the Personal Strength Rating Scale, comparing the post-SG interview results with those results obtained 3 years later. Participants in this study were parents caring for a child receiving palliative/hospice care at home in Kenya. Results revealed the long-term retention of strengths following the SG interview 3 years previously was, for most sources of strength, equal to or greater than those obtained immediately following the SG.

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ACCOMPAGNEMENT ADOLESCENT CANCER DEUIL DEUIL PERINATAL ENFANT FAMILLE FIN VIE MORT PARENT PEDIATRIE PERSONNE ENDEUILLEE SOUTIEN DEUIL TEMOIGNAGE TRAVAIL DEUIL

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