“The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention

Aims

The aims of the study were to:

Findings from the evaluation (aim 3) will be published in a forthcoming paper.

Study design

Our approach to intervention-development was underpinned by co-production and theoretically informed by Family Sense of Coherence (Antonovsky & Sourani, 1988) and the family-level extension to the Dual Process Model (Stroebe & Schut, 2015) which were used to develop the family-focused intervention. The co-production approach (Grindell et al., 2022) developed partnerships between the research team, people with real world experience of bereavement, and community and national stakeholders. Involving people with lived experience of this specific context, leveraging their knowledge, experience and insights, to enable a deep understanding of the challenges they face; and encouraging the uptake of outputs was used to help ensure “contextual fit” (Goodyear-Smith et al., 2015) and findings that have relevance to end users of the web-resource. Co-production offered an opportunity to enhance individual’s agency and COVID-19 as an unprecedented event made the inclusion of experts by experience imperative, as a result co-production has been used as a methodological approach in COVID-19, grief and death related studies (Booth et al., 2021; Entilli et al., 2024).

The study received endorsement and support from the National Bereavement Alliance (the largest UK umbrella bereavement organization with over 80 member organizations). In consultation with people with lived experience of bereavement (personal and/or professional) and in line with UK palliative and end of life care policy (National Palliative and End of Life Care Partnership, 2021), we defined family as relatives, friends, neighbors or anyone important to the bereaved.

This was a mixed methods study. Firstly, we explored in-depth the theoretical framework (Family Sense of Coherence and the family level extension to the Dual Process Model). Secondly, we carried out scoping work of the COVID-19 family-focused bereavement literature published between January 2020 and March 2021. This was specifically to identify and understand key elements of family bereavement support. Thirdly, findings from the scoping work and our theoretical framework were used to inform an online survey to gather data on personal and/or professional experiences of bereavement during the pandemic. Fourthly, the survey findings were taken to an online co-production workshop attended by members of the public with experience of bereavement and bereavement professionals working in hospice bereavement services, frontline and umbrella charities, to co-produce key content for the web-based intervention. Data gathered from the workshop discussion was used by the research team, in collaboration with an expert web designer, to produce and launch the intervention. Fifthly, users of the intervention were invited to provide feedback via a short survey embedded within a web-page of the intervention. Lastly, this feedback informed refinements to the intervention.

The process of intervention development (illustrated in Figure 1) is described below using the GUIDance for rEporting intervention Development studies in health research (GUIDED) (Duncan et al., 2020). Whilst GUIDED recommends use of the Template for Intervention Description and Replication (TiDieR) checklist (Hoffmann et al., 2014) the open accessibility and flexibility of an online intervention precluded specifying the who, how, when, how much, and where of use, therefore this checklist was not used.

Figure 1. Study process and timeline.

Intervention development phases

Theoretical framework

Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.

Family support is key to managing bereavement and in our previous work we drew on Family Sense of Coherence as a theoretical lens to facilitate family-focused support (Duke et al., 2020). Sense of coherence refers to the extent to which individuals perceive their world as meaningful, comprehensible and manageable (Antonovsky & Sourani, 1988). Antonovsky and Sourani advanced sense of coherence by applying the concept to families, demonstrating that successful coping with family stressors is associated with adaptation within the family and wider community networks.

For the purpose of the intervention development, we applied the three Family Sense of Coherence constructs to bereavement: defining meaning as wanting to respond and create meaning as a family, comprehensibility as the ability to understand and make sense, and manageability as the ability to utilize available resources to respond to the bereavement (Figure 2).

Figure 2. Family Sense of Coherence (applied to bereavement).

Stroebe and Schut (2015) expansion of their seminal theory of bereavement to include the collective family response (family level extension to the Dual Process Model) explains family level tasks both loss and restoration focused that relate to adjustment of the family as a whole as well as its individual members. For families to attend to these tasks, adaptation to these at both an individual and family level is required.

Together the theoretical framework comprehensively describes the processes required as a family, in both attending to the bereavement and the consequences of the death, in order to make sense, create meaning and utilize available resources to adapt to the loss (Figure 3).

Figure 3. The theoretical framework.

Scoping work

To identify and understand key elements of family bereavement support during COVID-19 we scoped the emerging evidence. This was underpinned by the question: what is known about family experiences of bereavement during the COVID-19 pandemic?

Searches were carried out in MEDLINE (EBSCO) CINAHL, Web of Science and PsycINFO using search terms related to “family bereavement” “grief” “loss” and “social support, “coping” and “resilience”. Searches were carried out in March-April 2021 (of literature published between January 2020 to March 2021) and it provided an initial indication of family experience prior to the proliferation of publications regarding bereavement during COVID-19.

From the limited evidence on bereavement during COVID-19 available at the time, the papers explored the nature of family experiences and support needs. Twenty-five full papers were screened and data extracted from seven.

Experiences: Papers reported guilt and anger experienced by individuals at not being able to bear witness and the disruption to usual death rituals as a result of social restrictions applied during the pandemic (Fernández & González-González, 2022; Hanna et al., 2021; Moore et al., 2020; Pearce et al., 2021), and a universal experience of uncertainty was expressed (Hanna et al., 2021). Some individuals described a detached experience, a sense of disbelief, and felt unable to grasp the reality of the death (Borghi & Menichetti, 2021; Fernández & González-González, 2022). Isolation during the lockdowns led to some feeling that the pandemic had “killed two times over” (Fernández & González-González, 2022; Pearce et al., 2021). First, enforced separations of people from their families before the death, and then secondly by the isolation resulting from the death itself. However, one paper reported benefits for some of the isolation as a result of social restrictions which allowed increased time to grieve independently from others and process the loss (Borghi & Menichetti, 2021). The challenge for families of having to break bad news to other relatives was reported but this could also facilitate breaking the silence and start the process of developing meaning following the death (Borghi & Menichetti, 2021). Furthermore, the need to support other family members in a practical sense required individuals to draw on internal resources and offered a distraction and a sense of purpose (Borghi & Menichetti, 2021). Two papers described how services responded to the pandemic restrictions by adapting their practice and enhanced use of technologies to provide support for families and communicate with them in novel ways (Fox et al., 2021; Pearce et al., 2021).

Support needs: Papers described the empathetic response of services including widening of access, willingness to adapt (Borghi & Menichetti, 2021; Fernández & González-González, 2022; Fox et al., 2021; Moore et al., 2020), and developing creative use of technology to provide support (Borghi & Menichetti, 2021; Fernández & González-González, 2022; Fox et al., 2021; Moore et al., 2020; Pearce et al., 2021). Communication from professionals to families was considered essential (Hanna et al., 2021; Moore et al., 2020). In particular, communication that was empathetic and provided clear and consistent information was valued (Hanna et al., 2021). Misinformation or mixed messages regarding public health or safety information contributed to family distress (Moore et al., 2020).

Online survey

The online survey was informed by the scoping work and focused on experiences of people who had been bereaved and the theoretical framework we applied. Survey items addressed family experiences of bereavement during COVID-19; views on supporting family bereavement via a web-based intervention and collected demographic data from respondents (see Table 1 for key questions, responses were unlimited free text).

The online survey was piloted via distribution to seven patient and public contributors (PPI) and two bereavement organizations in February 2021. Three PPI contributors and one representative of a bereavement organization responded (n=4). Changes to language and terminology to improve clarity were made following these pilot responses.

The survey was distributed via the National Bereavement Alliance; Hospice UK; a large national patient and public involvement network; and social media. It ran for three months between April and July 2021 using Microsoft Forms.

Thirty-two responses were received with an average completion time of 32 minutes. Thirteen completed the survey from a professional perspective, 12 from a professional and personal perspective, and the remaining seven from a personal perspective. Respondents who were bereavement professionals (those with professional experience), or those with both professional and personal experience reported working in health care, including hospices (n=19); third sector (n=4) and other (n=4) which included private and digital technology sectors. One respondent did not provide details. They worked in a range of roles, with varying levels of seniority and length of experience. Demographic information for bereaved respondents (those with personal experience, or those with both personal and professional experience) is provided in Table 2.

Data analysis

Survey results were analyzed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below. NC, SL, and MM conducted the analysis and agreement was reached on coding and theme generation via team analysis workshops. Findings were shared to check interpretation and gain consensus with the co-production group.

Family tasks in bereavement

Findings demonstrated that family tasks in bereavement included managing practicalities around the death including organizing the funeral and sorting the estate, living with the loss and learning to adapt, and acknowledging that family members experience and move through grief in different ways utilizing a variety of coping strategies.

Impact of COVID-19

COVID-19 impacted bereavement in a number of ways. For example, feelings of guilt, an inability to bear witness, putting grief on hold as a result of the imposed lockdowns, and the impact of media reporting of daily death tolls led to feelings of their loss being seen ‘as just a number’. Isolation resulting from social restrictions resulted in lack of control and choice over mourning including an inability to share collective memories and undertake cultural rituals and rites of passage usually enacted by a death.

Survey analysis confirmed findings from the scoping review that the pandemic presented opportunities to express grief and support the bereaved in different ways. Technology was utilized in novel and diverse ways both by professionals and the bereaved to enable social connections and facilitate support, this included online streaming of funerals and increased use of digital platforms. For some the social restrictions were viewed positively, such as smaller scale funerals and protected time to grieve.

Making sense and managing bereavement

Respondents identified factors that helped make sense of and manage bereavement. Having information and guidance about the practical tasks that needed to be taken following a death was felt to be essential. Information on the emotional impact of grief, how it can affect families and the diversity and commonality of experience was equally necessary. Being able to relocate the person who had died within the family context and ensure an ongoing bond was considered important in helping to adapt to the loss. The ability to draw on support networks, share stories to help make sense of the death, and having time to reflect as well as legacy projects to remember and honor the dead were also valued.

Accessibility, usability and utility of a web-based intervention

The idea of a web-based intervention was positively viewed and acknowledged as a means to widening access. However, it was recognized that this was reliant on possessing some level of IT literacy. To ensure accessibility respondents desired ease of navigation, and succinct information utilizing varied media (images and music). Regarding content, information on the experience and range of manifestations of grief, signposting to other organizations and support, and information on how to support one another were deemed important. Respondents thought, for the intervention to facilitate a family response to grief, it should include questions and prompts for conversations and activities for capturing and sharing memories and feelings. Respondents offered suggestions for encouraging use of the intervention, these included images, use of colors, and avoidance of clichés. Essentially the intervention should be simple, straightforward and honest, relatable, and clear in what it adds and how it differs from existing resources.

Co-production workshop

Participants were sought through respondents to the survey (who were asked to indicate their interest in the workshop), social media e.g., Twitter, patient and public involvement networks, professional bereavement organizations, and carers’ organizations. Twelve individuals expressed an interest to participate, eight were able to attend on the date set, with five attending on the day (one was unwell, one had technical issues and one had unanticipated work pressures on the day).

The two-hour online workshop (via Microsoft Teams) was held in September 2021. Of the five participants, one was a person with lived experience, one was representative of a carers’ organization, two were from hospice bereavement services (one professional and one volunteer) and was one from a bereavement organization. The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content by developing materials for a dedicated webpage entitled ‘a space to pause’ which includes art and music to facilitate taking time away from grief.

The aim of the workshop was to co-produce the content of the intervention. To do so the research team provided an overview of the study, presented findings from the survey, and discussed potential content including family ‘activities’ to stimulate family interactions and communication describing how these linked to the study’s theoretical underpinnings. It was explained that the survey had endorsed the following content: a landing page – what the web-resource is about (the unique selling point of the resource); about grief – outlining the range of experience; dealing with practicalities; what to say (or not); and links to other sources of information and advice (for specific types of bereavement). However, the focus of the co-production discussion was on the theoretical underpinning of the intervention (and why this helps to support family bereavement), views on a reflective zone consisting of music and art, and family ‘activities’ to aid support.

An outline of the theoretical framework was presented and participants endorsed its value and their understanding in relation to family bereavement. They wanted the theoretical underpinning to be available on the intervention site to show users the robust foundations of the intervention, as well as the links between the family ‘activities’ and theory. Workshop participants supported the value of art (and music) in aiding ‘time out’ from considering bereavement, rather than necessarily aiding reflection. For some the images and music encouraged a sense of calm and mindfulness. Nonetheless, it was recognized that art preferences are individual and therefore there was support for maximizing options such as the ability to look at different visual images, with or without music.

The mainstay of the discussion revolved around potential family ‘activities’ of which three (mapping family networks, creating a family repository of memories, and questions to support families to talk together) were presented to the participants. For each activity the participants were asked to consider whether it made sense to them, if they could see it working with families and others to facilitate communication, and finally what changes they would suggest.

Participants supported asking intervention users to consider who is in their family network, then using this to identify the strengths and coping strategies of those identified, including the benefits of each relationship, and what effect the bereavement has had on each member of the network. Participants suggested completed exemplars of family maps would be useful and that one exemplar should be for an individual with limited family (i.e. representing the diversity of family and social networks such as neighbors/friends not just kin).

The workshop participants felt that encouraging families to create collections of memories and stories was important. With the increasing use of and familiarization with technology during the pandemic, there was recognition that this did not need to be a physical collection. Instead, digital memorialization such as legacy walls were viewed as a sharing innovation developed through COVID-19 which could be shared with distant family members in other countries.

The questions in Table 3 were taken to the workshop as suggestions linked to the theoretical constructs of Family Sense of Coherence to aid family coping via creating meaning, sense making, and the management of resources. The person with lived experience, and representative of a carers’ organization liked the questions but suggested some shortening of wording and refinements to more everyday language.

Bereavement service participants also liked the questions as prompts to start and encourage families to talk together.

It was suggested that using prompts to explore secondary losses as a result of the bereavement would be of value too:

Following the workshop, the research team further developed the content of the respective webpages and their format/appearance (addressing all the suggestions highlighted above) based on feedback from the workshop. The expert web designer then implemented these, followed by a cycle of amendments. The web-based intervention was then launched to coincide with National Grief Awareness Week (2-8 December 2021) following an invitation from the National Bereavement Alliance to publicize and demonstrate the intervention at their monthly webinar the previous week.

Feedback phase

Feedback on the intervention was invited through a dedicated page on the pilot website. Respondents were asked to complete a questionnaire via Microsoft Forms between December 2021 and January 2022. A total of 13 anonymous responses were returned. Bereavements were reported as resulting from COVID-19 (n=1); COVID-19 alongside other illness (n=2), other illnesses (n=8) and two did not provide details of the cause of death. Bereavement related to both family members and friends. A further nine respondents (six professionals, two bereaved and one bereaved professional) contacted the research team via email rather than completing the feedback form.

Additional feedback was provided from 18 participants when the intervention was presented at a national bereavement webinar. Comments were positive and constructive, and those supporting the bereaved highlighted the family activities as being something they would use with clients.

Questions related to accessibility, acceptability, usability and perceived benefits of the resource. A summary of key responses is provided below in Table 4.

Refinement of the web-based intervention

Following analysis of the feedback, the first cycle of iterative changes was undertaken. Webpages were condensed, so that a separate page on ‘how to support each other’ was removed, with the information incorporated into the ‘about grief’ page. The standalone ‘activities to support grief’ page was added to the ‘home’ page, to emphasize the intervention’s unique focus and content. A new page was inserted called ‘bereavement during COVID’ which drew on the survey findings to outline personal experiences of bereavement during the pandemic (including the positive developments that occurred). Text refinements were made to all webpages to break-up sections of text using images and edited for succinctness. In terms of appearance the font size across the site was increased to enhance readability.

Strengths and limitations

An important strength of this study is the combined use of the Family Sense of Coherence (Antonovsky & Sourani, 1988) and the family level extension to the Dual Process Model (Stroebe & Schut, 2015) which have provided a robust framework for data collection, analysis and intervention development. The explicit use of the theoretical framework identified key constructs and mechanisms to guide our focus and informed the content of the intervention. A further strength is the use of co-production to develop the intervention. We approached the study from the position that those who are affected by the research and potential users of its outputs have experiences and knowledge that can offer invaluable insights to inform understanding. By drawing on the views and experiences of those who are bereaved, and bereavement professionals who support them, has ensured the intervention has relevance and utility for those it seeks to support. As with all studies there are limitations. It might be argued that the scoping work undertaken was partial. At the time we reviewed the literature, the evidence base on bereavement experience and support needs during COVID-19 was emerging and the plethora of papers which have been published since were not available to us at the time the intervention was under initial development. We recognize that this may be considered a potential limitation but would argue it does not compromise the robustness of the resource due to it being theoretically informed and grounded in real world experience. In addition, literature that has been published subsequently concurs with our findings (Burrell & Selman, 2022; Mayland et al., 2020; Selman et al., 2021, 2022; Torrens-Burton et al., 2022).

Ethical considerations

The study was approved via the Faculty Research Ethics Committee at the University of Southampton (Ethics/ERGO number: 63208). At the start of both the online survey and feedback form on the pilot website respondents had to indicate that they had read and understood the study information sheet, were 18 or over and agreed to take part. Full written consent was obtained for participation in the co-production workshop.