Dataset Information

Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic.

ABSTRACT:

Background

The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure.

Aim

To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic.

Design

Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data.

Setting/participants

711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations.

Results

High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% (n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation.

Conclusions

People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation.

SUBMITTER: Harrop E

PROVIDER: S-EPMC8637353 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundSingle-center studies have reported residents experience barriers to accessing supervising physicians overnight, but no national dataset has described barriers perceived by residents or the association between supervision models and perceived barriers.ObjectiveTo explore residents' perception of barriers to accessing overnight supervision.DesignQuestions about overnight supervision and barriers to accessing it were included on the American College of Physicians Internal Medicine In-Training Examination® (IM-ITE®) Resident Survey in Fall 2017.ParticipantsAll US-based internal medicine residents who completed the 2017 IM-ITE®. Responses from 20,744 residents (84%) were analyzed.Main measuresFor our main outcome, we calculated percentages of responses for eight barriers and tested for association with the presence or absence of nocturnists. For our secondary outcome, we categorized free-text responses enumerating barriers from all residents into the five Systems Engineering Initiative for Patient Safety (SEIPS) categories to elucidate future areas for study or intervention.Key resultsInternal medicine residents working in hospitals without nocturnists more commonly reported having at least one barrier to accessing a supervising physician "always" or "most of the time" (5075/9842, 51.6%) compared to residents in hospitals with nocturnists (3074/10,902, 28.2%, p < 0.001). Among residents in hospitals without nocturnists, the most frequently reported barrier to accessing attending supervision was attendings not being present in the hospital (30.4% "always" or "most of the time"); residents in hospitals with nocturnists most frequently reported desire to make their own decisions as a barrier to contacting attendings (15.7% "always" or "most of the time"). Free-text responses from residents with and without nocturnists most commonly revealed organization (47%) barriers to accessing supervision; 28% cited person barriers, and 23% cited tools/technology barriers.ConclusionsPresence of nocturnists is associated with fewer reported barriers to contacting supervising physicians overnight. Organizational culture, work schedules, desire for independence, interpersonal interactions, and technology may present important barriers.

Project description:BackgroundOnline resources constitute a new and effective way to obtain support or information during bereavement processes. However, little is known about the needs, use and expectations of people bereaved by suicide regarding online resources.MethodThe objective of our national cross-sectional online survey was to collect the use, needs and expectations of people bereaved by suicide regarding online resources. The data were collected from July to October 2021 through a 26-item online questionnaire hosted on the website LimeSurvey.ResultsA total of 401 respondents fully completed the questionnaire. Their mean age was 45.7. The majority of participants were women bereaved by the suicide of their child or partner. Half of the participants were bereaved for less than 3 years and benefited from counselling during their bereavement process. Three-quarters of the participants used the Internet for their bereavement process, mainly to obtain information on suicide bereavement and suicide prevention and to access testimonies of other people bereaved by suicide. Three-quarters of the participants found that available online resources for people bereaved by suicide are insufficient and expected a dedicated web platform to be developed. Finding information on suicide bereavement and on suicide prevention, discussing with a mental health professional and accessing testimonies of other people bereaved by suicide were expected by a majority of the participants regarding the future platform. Receiving counselling and being bereaved by the death of a child were the most important factors in explaining patterns of use and expectations regarding online resources.DiscussionOur results offer precise insights into the needs, use and expectations of people bereaved by suicide regarding online resources. The development of web platforms offering access to reliable information on suicide bereavement and on suicide prevention to peers bereaved by suicide and help to seek counselling are urgently needed.

Project description:BackgroundUnderstanding consumers' health information needs across all stages of the pregnancy trajectory is crucial to the development of mechanisms that allow them to retrieve high-quality, customized, and layperson-friendly health information.ObjectiveThe objective of this study was to identify research gaps in pregnancy-related consumer information needs and available information from different sources.MethodsWe conducted a systematic review of CINAHL, Cochrane, PubMed, and Web of Science for relevant articles that were published from 2009 to 2019. The quality of the included articles was assessed using the Critical Appraisal Skills Program. A descriptive data analysis was performed on these articles. Based on the review result, we developed the Pregnancy Information Needs Ontology (PINO) and made it publicly available in GitHub and BioPortal.ResultsA total of 33 articles from 9 countries met the inclusion criteria for this review, of which the majority were published no earlier than 2016. Most studies were either descriptive (9/33, 27%), interviews (7/33, 21%), or surveys/questionnaires (7/33, 21%); 20 articles mentioned consumers' pregnancy-related information needs. Half (9/18, 50%) of the human-subject studies were conducted in the United States. More than a third (13/33, 39%) of all studies focused on during-pregnancy stage; only one study (1/33, 3%) was about all stages of pregnancy. The most frequent consumer information needs were related to labor delivery (9/20, 45%), medication in pregnancy (6/20, 30%), newborn care (5/20, 25%), and lab tests (6/20, 30%). The most frequently available source of information was the internet (15/24, 63%). PINO consists of 267 classes, 555 axioms, and 271 subclass relationships.ConclusionsOnly a few articles assessed the barriers to access to pregnancy-related information and the quality of each source of information; further work is needed. Future work is also needed to address the gaps between the information needed and the information available.