Background: Telemedicine has been proposed as a means to improve access to palliative care. There is limited information about how health care workers feel about providing this kind of care and how families feel about receiving it.
Objective: this study assesses provider and caregiver perceptions of the safety and efficacy of the Distance Support Program (DSP) of a home-based palliative care provider in Beirut, Lebanon.
Design: interviews were conducted with 8 physicians and nurses who provided that care through the DSP as well as 49 caregivers of patients who received care between January 2015 and December 2017. Interviews were analyzed thematically.
Results: Although they would have preferred having access to home visits, caregivers reported that they valued the information, guidance, and emotional support they received through the DSP and they appreciated having telephone access to providers. Health providers reported the DSP was more efficient than home visits. They felt it was safest when delivered by an experienced provider, they had access to a reliable caregiver, and the patient was assessed at least once. They felt it was important to communicate clear expectations to patients and caregivers when delivering care by telephone.
Conclusions: Telemedicine can be a useful tool to provide palliative care services in settings where they would otherwise not be available.
After covid-19 crisis in Italy, serious restrictions have been introduced for relatives, with limitations or prohibitions on hospital visits. To partially overcome these issues "WhatsApp" has been adopted to get family members to participate in clinical rounds. Family members of patients admitted to the acute palliative care unit and hospice were screened for a period of 2 weeks. Four formal questions were posed: 1) Are you happy to virtually attend the clinical round? 2) Are you happy with the information gained in this occasion? 3) Do you think that your loved one was happy to see you during the clinical rounds? 4) This technology may substitute your presence during the clinical rounds? The scores were 0=no, 1=a little bit, 2=much, 3=very much. Relatives were free to comment about these points. Sixteen of 25 screened family members were interviewed. Most family members had a good impression, providing scores of 2 or 3 for the first three items. However, the real presence bedside (forth question) was considered irreplaceable. They perceived that their loved one, when admitted to hospice, had to say good-bye before dying.
BACKGROUND: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making.
AIM: To examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries.
DESIGN: Cross-sectional telephone survey, in March 2020.
SETTING: Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15-25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive.
RESULTS: Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response.
CONCLUSION: The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.
Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group.
Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not.
Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief.
Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not.
Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death).
Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview.
Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.
Objectif : Dans le cadre d’un projet de compagnonnage à destination des soignants du domicile, notre Equipe Mobile de Soins Palliatifs a souhaité évaluer leur niveau de qualification en soins palliatifs.
Matériel et méthode : Un QCM de 20 questions a été créé afin d’explorer le niveau de formation, d’expérience et de connaissances en soins palliatifs. Il a été soumis à toutes les infirmières libérales installées sur la communauté de commune du Grand Pontarlier, soit 20 infirmières. Ce travail original a fait l’objet d’un mémoire de DIU soins palliatifs.
Résultats : Le taux de réponse est de 85 %. Le niveau de formation et d’expérience est très faible. Aucune infirmière n’a de diplôme universitaire ou d’expérience en équipe mobile ou unité de soins palliatifs. La prise en charge des symptômes et les lois de soins palliatifs sont peu connues.
Conclusion : La méthode est simple. Elle peut être utilisée par d’autres équipes pour évaluer d’autres professionnels de santé. Ce travail a suscité un vif intérêt de la part des infirmières libérales, sans doute parce que si elles suivent peu de patients en soins palliatifs chaque année, leurs difficultés sont réelles. Ces difficultés, révélées dans d’autres travaux, peuvent être mises en lien avec le faible niveau de formation et d’expérience mis en évidence. Notre travail de formation devra permettre une meilleure qualité de prise en charge du patient.
Introduction : Constitué en 2010, le Réseau national de documentation en soins palliatifs et fin de vie, Respal’dOc, a souhaité établir un état des lieux national de l’existant des fonds et des pratiques documentaires en soins palliatifs et fin de vie, afin de poursuivre sur des bases concrètes les missions qu’il s’est données.
Méthode : À cette fin, un questionnaire d’enquête anonyme a été envoyé à l’ensemble des 541 équipes spécialisées renseignées dans le répertoire de la SFAP, Société française d’accompagnement et de soins palliatifs, en janvier 2018.
Résultats et discussion : Cent cinquante-cinq formulaires, tous exploitables (soit un taux de réponse de 29 %) ont été retournés. Il ressort principalement de l’analyse qu’il existe un réel intérêt pour l’activité documentaire mais un manque de moyens à y consacrer, notamment en termes de temps. Par ailleurs, si des fonds documentaires existent, la plupart des équipes se heurtent à d’importantes difficultés dans leur valorisation, leur diffusion ou leur accès. On constate également une méconnaissance plus ou moins partagée des pratiques documentaires. Cet état des lieux permet d’identifier les principaux manques, et corrélativement les axes prioritaires pour le développement de nos actions.
Conclusion : La documentation n’est que peu voire pas visible au sein des équipes interdisciplinaires de soins palliatifs. L’analyse des facteurs et des conséquences de ce manque de visibilité engage à faire valoir la place des activités documentaires du côté de la diffusion de la culture palliative, d’une part, et, d’autre part, à les identifier comme un des leviers de la formation des professionnels.
BACKGROUND: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages.
METHODS: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go".
RESULTS: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance").
CONCLUSIONS: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying.
CONTEXT: Palliative care will play an important role to alleviate disease suffering and improve quality of life for cancer patients and their family caregivers.
OBJECTIVE: We examined the knowledge penetration of palliative care in a nationally representative sample of U.S. adults.
METHODS: We used the 2018 National Cancer Institute's Health Information National Trends Survey to determine the proportion of respondents who had knowledge of palliative care as well as the depth and sources of their knowledge. We used the Pearson chi-square test and a multivariable logistic regression model to assess the association of respondents' basic demographic characteristics as well as health status and having knowledge of palliative care.
RESULTS: We identified 3194 respondents (weighted sample size: 229,591,005) who met the inclusion criteria. About 71% (2097) of all respondents had no knowledge of palliative care and 84.5% of Hispanic respondents had no knowledge of palliative care. Multivariable analyses indicated the middle-aged (50-64 years old, odds ratio, 1.58; 95% CI, 1.15-2.19, P = 0.006) and elder population (65 years or older, odds ratio, 1.70, 95% CI, 1.30-2.22, P < 0.001) have a significantly better knowledge of palliative care than those under age 50. Common misconceptions existed in respondents, even those who had self-reported adequate knowledge of palliative care.
CONCLUSION: The proportion of adults who have knowledge of palliative care is low in the U.S. Greater efforts are needed to promote palliative care and reduce the misconceptions of palliative care in the general population.
OBJECTIVES: To examine the effect of mode of survey administration on response rates and response tendencies for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey and develop appropriate adjustments.
DESIGN: Survey response data were obtained after sampling and fielding of the CAHPS Hospice Survey in 2015. Sampled caregivers and decedents were randomized to one of three modes: mail only, telephone only, and mixed mode (mail with telephone follow-up). Linear regression analysis was used to examine the effect of mode on individual responses to questions (6 composite measures and 2 global measures that examine hospice quality).
SETTING: U.S. hospice programs (N = 57).
PARTICIPANTS: Primary caregivers of individuals who died in hospice (N = 7,349).
MEASUREMENTS: Outcomes were 8 hospice quality measures (6 composite measures, 2 global measures). Analyses were adjusted for differences in case-mix (e.g., decedent age, payer for hospice care, primary diagnosis, length of final episode of hospice care, respondent age, respondent education, relationship of decedent to caregiver, survey language, and language spoken at home) between hospices.
RESULTS: Response rates were 42.6% for those randomized to mail only, 37.9%, for those randomized to telephone only, and 52.6% for those randomized to mixed mode (P < .001 for difference). There were significant mode effects (P < .05) for 10 of the 24 questions that compose the quality measures, with mail-only respondents being significantly more likely to report better experiences than telephone-only respondents.
CONCLUSION: Unlike results observed in previous mode experiments for hospital CAHPS, hospice primary caregivers tend to respond more negatively by telephone than by mail. Valid comparisons of hospice performance require that reported hospice scores be adjusted for survey mode.
Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored.
Objective: To explore how PC researchers/academics perceive the term is the objective of this study.
Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis.
Participants: Academics and researchers in PC were the participants in this study.
Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve.
Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name.
Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Objective: Neurosurgeons care for critically ill patients near the end of life, yet little is known about how well their training prepares them for this role. We surveyed a random sample of neurosurgery residents to describe the quantity and quality of teaching activities related to serious illness communication and palliative care, and resident attitudes and perceived preparedness to care for seriously ill patients.
Methods: A previously validated survey instrument was adapted to reflect required communication and palliative care competencies in the 2015 the Accreditation Council for Graduate Medical Education (ACGME) Milestones for Neurological Surgery. The survey was reviewed for content validity by independent faculty neurosurgeons, piloted with graduating neurosurgical residents, and distributed online in August 2016 to neurosurgery residents in the United States using the American Association of Neurological Surgeons (AANS)/Congress of Neurological Surgeons (CNS) Joint Section on Neurotrauma and Critical Care email listserv. Multiple choice and Likert scale responses were analyzed using descriptive statistics.
Results: Sixty-two responses were recorded between August 2016 and October 2016. Most respondents reported no explicit teaching on: explaining risks and benefits of intubation and ventilation (69%), formulating prognoses in neurocritical care (60%), or leading family meetings (69%). Compared to performing craniotomies, respondents had less frequent practice leading discussions about withdrawing life-sustaining treatment (61% vs. 90%, p < 0.01, "weekly or more frequently"), and were less often observed (18% vs. 87%, p < 0.01) and given feedback on their performance (11% vs. 58%, p < 0.01). Nearly all respondents (95%) felt "prepared to discuss withdrawing life-sustaining treatments," however half (48%) reported they "would benefit from more communication training during residency." Most (87%) reported moral distress, agreeing that they "participated in operations and worried whether surgery aligned with patient goals."
Conclusions: Residents in our sample reported limited formal training, and relatively less observation and feedback, on required ACGME competencies in palliative care and communication. Most reported preparedness in this domain, but many were receptive to more training. Better quality and more consistent palliative care education in neurosurgery residency could improve competency and help ensure that neurosurgical care aligns with patient goals.
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.
Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).
Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.
Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
Background: In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design.
Methods: Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically.
Results: Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions.
Conclusions: Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
PURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single open-ended question from a larger survey are presented.
METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data.
RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings.
CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.
BACKGROUND: Every year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce.
AIM: This study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth.
METHODS: An online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries.
FINDINGS: Based on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan's stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered.
CONCLUSION: Bereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women.