Experiences of Grief: A Phenomenological Survey, 2020

DOI

Most people are affected profoundly by bereavement at some point in their lives. However, the experience of grief remains poorly understood. Those who are grieving often remark that aspects of their grief are bewildering, hard to articulate, and difficult or impossible for others to comprehend. For instance, it might be that everything appears distant, strange, or even unreal, that what has happened seems somehow impossible, that one’s sense of self has been radically transformed, and that the person who has died is absent and yet in some way still present. The aim of this phenomenological survey was to investigate these and other features of grief, identify differences and commonalities between people’s experiences, and thus facilitate detailed, wide-ranging philosophical analyses of what is involved in experiencing grief (see, for example, Matthew Ratcliffe, Grief Worlds: A Study of Emotional Experience, MIT Press, 2022). The study was conducted as part of the project ‘Grief: A Study of Human Emotional Experience’ at the University of York, funded by the UK Arts and Humanities Research Council. (Details of the project can be found at www.griefyork.com) The researchers drew upon themes that are central to first-person accounts of bereavement and also to phenomenological philosophy, in order to design a set of 21 questions addressing several prominent aspects of grief. Participants were invited to provide free-text responses to these questions, with no word limits. They selected present- or past-tense versions of the questionnaire, depending on whether or not they identified their grief as “current.” Present-tense versions of the questions were as follows: (1) What was the nature of your relationship with the person who died? (2) Please can you tell us about the circumstances of the bereavement, including when it occurred. (3) How has the person’s death affected you during the hours, days, and weeks that followed? (4) How, if at all, have your relationships with other people (particular individuals and other people in general) been affected by the bereavement? (5) Does the surrounding world seem any different to you while grieving? If so, how? (6) Has your experience of time changed in any way? (7) Has your body felt any different during grief? (8) Has grief interfered in any way with your ability and motivation to perform various tasks, including paid work? (9) Is your experience of grief changing over time? If so, how? (10) Have you ever found yourself looking for the person who died or expecting that person to appear? (11) Are there times, places, and occasions that have made you especially aware of the person’s absence? (12) People who are grieving often report experiencing the presence of the person who died. Have you had any experiences that you would describe in those terms? (13) Do you still feel a sense of connection with the person? If so, could you say something about when you feel this and what the experience is like. (14) Since the person died, is there anything that you have been doing in order to feel close to them? (15) Is there anything that you do in order to avoid being reminded of the person or of their death? (16) Has anything in particular helped you to cope with grief? Has anything made you feel better or worse? (17) How understanding have other people been? Have others said or done anything that you’ve found especially helpful or unhelpful? (18) How, if at all, has your experience of bereavement changed you as a person? (19) How, if at all, does grief over the death of a person differ from other forms of loss that you have experienced? (20) Are there any aspects of grief that you find particularly puzzling or difficult to put into words? (21) Are there any important aspects of your experience that we have not addressed? The survey received ethical approval from the Arts and Humanities Ethics Committee at the University of York. It was made available for participants via the online platform Qualtrix from 1 June 2020 until 4 February 2021. Anyone over the age of eighteen who identified as currently experiencing grief over the death of a person, or as having experienced grief in the past, was invited to complete it. Participants were able to access the survey after reading an information sheet and completing a consent form. A total of 265 completed responses were received. Of these, 235 focused on grief over the death of a person, which was the explicit focus of the questionnaire, with a majority (130) focusing on the death of a long-term partner. The remaining 30 responses were concerned principally with grief over involuntary childlessness rather than bereavement. These responses have been placed into a distinct dataset, which can be viewed on the ‘childlessness’ tab. All participants consented to their anonymized testimonies being made publicly available in full. They were asked not to include any identifying information. The researchers scrutinized the entire dataset rigorously and retracted any information that had the potential to identify participants or any other individuals. For example, names of people, specific places, and businesses were removed. In some cases, wording was altered slightly or condensed, in order to avoid potentially identifying contextual information. In anonymizing the data, one question (Question 2) was removed altogether, as accounts of the circumstances of bereavements could not be anonymized in this way. In addition to this Excel document, the corpus of grief experiences is freely available on two user-friendly, searchable Google apps available under related resources.Grief is one of the most distressing, unsettling, and puzzling experiences that we face. During times of profound grief, the world as a whole appears somehow altered - distant, unfamiliar, unwelcoming, unpredictable. Other people may seem to go about their business in another realm, which one surveys from outside. Along with this, the deceased may be experienced as present and absent in a range of interconnected and tension-riddled ways. People often struggle to articulate and to comprehend these and other aspects of grief. Furthermore, lack of comprehension on the part of oneself and / or others can exacerbate painful feelings of being lost and alone. A number of interesting philosophical questions therefore arise, concerning what experiences of grief consist of and how grief, in its various guises, should be conceived of. However, philosophers have paid surprisingly little attention to the topic. Although grief is more often addressed by other disciplines, what remains lacking is a detailed, wide-ranging, cohesive, and concise account of what grief-experiences actually consist of. The overall task of this project is to develop such an account, by employing a philosophical method that combines phenomenological research (research concerning the structure of human experience) with work in philosophy of mind. The project will also draw on insights from other disciplines, including psychology, psychiatry, literary theory, religious studies, and cultural anthropology (supported by an interdisciplinary advisory group). Research will be structured around three main thematic areas: 1. Emotion and Perception: By relating the topic of grief to broader research on perception and emotion, we will (a) offer new insights into the nature of temporally extended emotional processes, (b) clarify how 'everything seems somehow different' and how this aspect of grief relates to the more localized recognition of loss, and (c) explore relationships between perception and emotion by analysing experiences of presence and absence. 2. Interpersonal Experience and Understanding: We will bring a substantial body of social cognition research into dialogue with the 'continuing bonds' literature on grief. The latter emphasizes various ways in which relations with the deceased are retained, rather than abandoned. In contrast, social cognition research (in philosophy, cognitive science, and elsewhere) concerns itself exclusively with how we experience, think about, and relate to the living. By showing how relations with the dead need to be accommodated too, we aim to open up a substantial, new, and important area of inquiry. In so doing, we will also investigate ways in which emotion is interpersonally and socially regulated, and clarify the nature of bereavement hallucinations. 3. The Bounds of Grief: We will ask what distinguishes grief from other forms of emotional experience and how healthy grief-experiences might be distinguished from pathological forms of grief and from depression. This latter issue is of particular importance in psychiatry, where there has been considerable debate. By formulating the most detailed and discerning analysis of grief-experiences to date, we will help to resolve the issue. The principal contributions of the research will be to: * fill a significant gap in the philosophical literature, by addressing an important but neglected topic in unprecedented depth. * cast new light on a wider range of topics, including the nature of emotion, perception, and social cognition. * provide a novel and detailed analysis that will inform future research on grief-experiences in philosophy and other disciplines. * contribute to current debates in psychiatry, with potentially important implications for psychiatric classification, diagnosis, and treatment. * make broader contributions to practice and public understanding, by clarifying aspects of grief that people find unsettling, confusing, and hard to describe.

This survey was based on an earlier study design, co-developed by one of the researchers in order to study experiences of depression (see Matthew Ratcliffe, Experiences of Depression: A Study in Phenomenology, Oxford University Press, 2015). To formulate the study questions, the researchers identified themes that are prominent in published first-person accounts of grief and, in particular, those aspects of grief that were frequently identified as bewildering and difficult to understand. Consistent themes included changes in the experience of self, body, world, time, change, reality, and interpersonal connection. The researchers were also guided by work in the phenomenological tradition of philosophy, where such themes are similarly prominent. Questions were designed to investigate experiences of grief in a non-leading way. Participants were invited to provide free-text responses to these questions and to write as much or as little as they liked. The data collected was then employed to inform ongoing philosophical studies of grief undertaken by the researchers. It is also anticipated that the results will be of use to other researchers, in a variety of disciplines, who are working on grief. The survey was made openly available on the online platform Qualtrix, and the link to it was disseminated widely via social media channels such as Twitter and Facebook. Anyone over the age of eighteen who identified as currently or previously experiencing grief over the death of a person was invited to complete it. The link was shared by charities such as Cruse Bereavement Care and support groups such as Way Up. Although UK-based respondents were not specifically targeted, the survey was conducted by UK-based researchers and shared predominantly by individuals, charities and support groups within the UK. Thus, most participants were UK nationals. Other nationalities listed were United States/American (13), Dutch (4), German (4), Irish (2), Australian (2), Swedish (1), New Zealand (1), Polish (1), and Ghanaian (1). There was a bias towards female respondents. In total, 240 respondents identified as female and only 25 as male. All participants identified as either female or male; none chose to self-describe. A total of 173 participants reported an ongoing experience of grief, while 92 reported a past experience. Data has been compiled into an Excel document. Responses to the present-tense version of the questionnaire can be seen under the blue-headed questions, while responses to the past-tense version can be seen under the orange-headed questions

Identifier
DOI https://doi.org/10.5255/UKDA-SN-856067
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=b3933eab46fb279ae71bcaa8757aa8cb2035c70df9cb4a8ff9c1433e21ca08df
Provenance
Creator Millar, B, University of York; Ratcliffe, M, University of York; Richardson, L, University of York; Hughes, E, University of York
Publisher UK Data Service
Publication Year 2022
Funding Reference AHRC
Rights Matthew Ratcliffe, University of York. Louise Richardson, University of York. Becky Millar, University of York. Emily Hughes, University of York; The Data Collection is available to any user without the requirement for registration for download/access.
OpenAccess true
Representation
Language English
Resource Type Text
Discipline Psychology; Social and Behavioural Sciences
Spatial Coverage United Kingdom