These pages contain a rich and searchable corpus of grief experiences, collected through a questionnaire study. The explicit focus of the survey was bereavement, but we also collected some testimonies focused on involuntary childlessness. If you find this resource useful, please let us know.
 Explore bereavement responses
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 Explore childlessness responses
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This data can also be accessed as an Excel document on the ReShare repository here and can be cited using the DOI: 10.5255/UKDA-SN-856067
Abstract
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.
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:
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. You can view these sets of responses on our two searchable apps, linked above. 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.
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.
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:
- What was the nature of your relationship with the person who died?
- Please can you tell us about the circumstances of the bereavement, including when it occurred.
- How has the person’s death affected you during the hours, days, and weeks that followed?
- How, if at all, have your relationships with other people (particular individuals and other people in general) been affected by the bereavement?
- Does the surrounding world seem any different to you while grieving? If so, how?
- Has your experience of time changed in any way?
- Has your body felt any different during grief?
- Has grief interfered in any way with your ability and motivation to perform various tasks, including paid work?
- Is your experience of grief changing over time? If so, how?
- Have you ever found yourself looking for the person who died or expecting that person to appear?
- Are there times, places, and occasions that have made you especially aware of the person’s absence?
- 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?
- 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.
- Since the person died, is there anything that you have been doing in order to feel close to them?
- Is there anything that you do in order to avoid being reminded of the person or of their death?
- Has anything in particular helped you to cope with grief? Has anything made you feel better or worse?
- How understanding have other people been? Have others said or done anything that you’ve found especially helpful or unhelpful?
- How, if at all, has your experience of bereavement changed you as a person?
- How, if at all, does grief over the death of a person differ from other forms of loss that you have experienced?
- Are there any aspects of grief that you find particularly puzzling or difficult to put into words?
- 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. You can view these sets of responses on our two searchable apps, linked above. 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.
Methodology
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.
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.