Gaining access to unspoken narratives of people living with dementia on a hospital ward—A new methodology

This is a methodological paper that aims to advance the conceptualisation of participatory research by focusing on the value of capturing and understanding movement as a vital means of communication for older people with dementia in a general hospital ward. Qualitative research involving people with dementia tends to be word‐based and reliant upon verbal fluency. This article considers a method for capturing and understanding movement as a vital means of communication.

[1]  L. Block,et al.  Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer’s and Dementia Research , 2020, Journal of empirical research on human research ethics : JERHRE.

[2]  M. Andrews Quality indicators in narrative research , 2020, Qualitative Research in Psychology.

[3]  V. Shepherd An under-represented and underserved population in trials: methodological, structural, and systemic barriers to the inclusion of adults lacking capacity to consent , 2020, Trials.

[4]  Diane Nelson Bryen,et al.  Every voice counts: exploring communication accessible research methods , 2020, Disability & Society.

[5]  J. Bridges,et al.  Older people's experiences in acute care settings: Systematic review and synthesis of qualitative studies. , 2019, International journal of nursing studies.

[6]  D. Challis,et al.  Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia , 2019, BMC Geriatrics.

[7]  Katie Featherstone,et al.  Routines of resistance: An ethnography of the care of people living with dementia in acute hospital wards and its consequences. , 2019, International journal of nursing studies.

[8]  R. Harwood,et al.  A staff training intervention to improve communication between people living with dementia and health-care professionals in hospital: the VOICE mixed-methods development and evaluation study , 2018, Health Services and Delivery Research.

[9]  J. Love The wounded storyteller , 2018 .

[10]  H. Chaudhury,et al.  “Little things matter!” Exploring the perspectives of patients with dementia about the hospital environment , 2017, International journal of older people nursing.

[11]  R. Chadwick Embodied methodologies: challenges, reflections and strategies , 2017 .

[12]  K. Sage,et al.  Everyday conversation in dementia: a review of the literature to inform research and practice , 2016, International journal of language & communication disorders.

[13]  V. Shepherd Research involving adults lacking capacity to consent: the impact of research regulation on ‘evidence biased’ medicine , 2016, BMC Medical Ethics.

[14]  R. Parry,et al.  Acceptability and design of video-based research on healthcare communication: Evidence and recommendations. , 2016, Patient education and counseling.

[15]  G. Boyle Recognising the agency of people with dementia , 2014 .

[16]  F. Wood,et al.  Consent, including advanced consent, of older adults to research in care homes: a qualitative study of stakeholders’ views in South Wales , 2013, Trials.

[17]  Pia Kontos,et al.  Embodiment and dementia: Exploring critical narratives of selfhood, surveillance, and dementia care , 2013, Dementia.

[18]  L. Hydén Storytelling in dementia: Embodiment as a resource , 2013, Dementia.

[19]  N. Denzin,et al.  Collecting and Interpreting Qualitative Materials , 2012 .

[20]  A. Capstick Travels with a Flipcam: bringing the community to people with dementia in a day care setting through visual technology , 2011 .

[21]  M. Bamberg Who am I? Narration and its contribution to self and identity , 2011 .

[22]  S. Allen Broadening the dementia debate: Towards social citizenship , 2010 .

[23]  L. Hydén,et al.  Narrative and identity in Alzheimer's disease: A case study , 2009 .

[24]  Dona Schwartz,et al.  If a Picture is Worth a Thousand Words, Why Are You Reading this Essay? , 2007 .

[25]  J. Dewing Participatory research , 2007 .

[26]  C. Baldwin The Narrative Dispossession of People Living with Dementia: Thinking About the Theory and Method of Narrative , 2006 .

[27]  P. Kontos,et al.  Embodied selfhood in Alzheimer's disease , 2005 .

[28]  Michael Bamberg,et al.  Talk, Small Stories, and Adolescent Identities , 2004, Human Development.

[29]  L. Siminoff,et al.  Recruiting vulnerable populations for research: revisiting the ethical issues. , 2003, Journal of professional nursing : official journal of the American Association of Colleges of Nursing.

[30]  Jan Dewing,et al.  From Ritual to Relationship , 2002 .

[31]  A. Hollander As others see us , 1948, Synthese.

[32]  Pippa Collins Stories of (Im)Mobility: People Affected by Dementia on an Acute Medical Unit , 2020 .

[33]  Kayla Turner Somebody that I Used to Know , 2015 .

[34]  Linda Beuscher,et al.  Challenges in conducting qualitative research with individuals with dementia. , 2009, Research in gerontological nursing.

[35]  C. Freytag The Wounded Storyteller: Body Illness, and Ethics , 1996, Nature Medicine.

[36]  Ellen Goldman As Others See Us: Body Movement and the Art of Successful Communication , 1994 .

[37]  C E Wells,et al.  Dementia reconsidered. , 1972, Archives of general psychiatry.