Abrahamson, JA, Fisher, KE, Turner, AG, Durrance, JC and Turner, TC (2008) Lay information mediary behavior uncovered: exploring how nonprofessionals seek health information for themselves and others online. Journal of the Medical Library Association: JMLA 96, 310–323.
Allen, F, Cain, R and Meyer, C (2018) Seeking relational information sources in the digital age: a study into information source preferences amongst family and friends of those with dementia. Dementia. Available online doi:10.1177/1471301218786568.
Anderson, S, Allen, P, Peckham, S and Goodwin, N (2008) Asking the right questions: scoping studies in the commissioning of research on the organisation and delivery of health services. Health Research Policy and Systems 6, 1–12.
Arksey, H and O'Malley, L (2005) Scoping studies: towards a methodological framework. International Journal of Social Research Methodology 8, 19–32.
Baines, C, Evans, PM and Neysmith, SM (1998) Women's caring: work expanding, state contracting. In Baines, CT, Evans, PM and Neysmith, PM (eds), Women's Caring: Feminist Perspectives on Social Welfare. New York, NY: Oxford University Press, pp. 3–22.
Barnes, M and Henwood, F (2015) Inform with care: ethics and information in care for people with dementia. Ethics and Social Welfare 9, 147–163.
Barnes, M, Henwood, F and Smith, N (2016) Information and care: a relational approach. Dementia 15, 510–525.
Bee, PE, Barnes, P and Luker, KA (2008) A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing 18, 1379–1393.
Binney, EA, Estes, CL and Ingman, SR (1990) Medicalization, public policy and the elderly: social services in jeopardy? Social Science & Medicine 30, 761–771.
Bonner, A and Lloyd, A (2011) What information counts at the moment of practice? Information practices of renal nurses. Journal of Advanced Nursing 67, 1213–1221.
Campbell, M (2003) Dorothy Smith and knowing the world we live in. Journal of Sociology and Social Welfare 30, 3–22.
Campbell, M and Gregor, FM (2004) Mapping Social Relations: A Primer in Doing Institutional Ethnography. Walnut Creek, CA: Altamira Press.
Carter, PA (2001) A not-so-silent cry for help: older female cancer caregivers’ need for information. Journal of Holistic Nursing 19, 271–284.
Collins, CE, Given, BA and Given, CW (1994) Interventions with family caregivers of persons with Alzheimer's disease. The Nursing Clinics of North America 29, 195–207.
Corbin, J and Strauss, A (1985) Managing chronic illness at home: three lines of work. Qualitative Sociology 8, 224–247.
Corbin, JM and Strauss, A (1988) Unending Work and Care: Managing Chronic Illness at Home. San Francisco, CA: Jossey-Bass.
Dale, C, Angus, JE, Sinuff, T and Mykhalovskiy, E (2013) Mouth care for orally intubated patients: a critical ethnographic review of the nursing literature. Intensive and Critical Care Nursing 29, 266–274.
Dalmer, NK (submitted) Disrupting knowledge synthesis: tracing scoping reviews' textually-mediated social organization and governance. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine.
Davis, K, Drey, N and Gould, D (2009) What are scoping studies? A review of the nursing literature. International Journal of Nursing Studies 46, 1386–1400.
Department of Health (2012 a) Caring for Our Future: Reforming Care and Support. London: Department of Health.
Department of Health (2012 b) The Power of Information: Putting Us All in Control of the Health and Care Information We Need. London: Department of Health.
Downs, M, Clibbens, R, Rae, C, Cook, A and Woods, R (2002) What do general practitioners tell people with dementia and their families about the condition? A survey of experiences in Scotland. Dementia 1, 47–58.
Estes, CL and Binney, EA (1989) The biomedicalization of aging: dangers and dilemmas. The Gerontologist 29, 587–596.
Federici, S (1975) Wages Against Housework. Bristol, UK: Falling Wall Press.
Federici, S (2012) Revolution at Point Zero: Housework, Reproduction, and Feminist Struggle. Oakland, CA: PM Press.
Freire, P (1970) Pedagogy of the Oppressed. New York, NY: Continuum.
Gallagher-Thompson, D, Tzuang, YM, Au, A, Brodaty, H, Charlesworth, G, Gupta, R, Lee, SE, Losada, A and Shyu, YI (2012) International perspectives on nonpharmacological best practices for dementia family caregivers: a review. Clinical Gerontologist 35, 316–355.
Gaugler, JE and Teaster, P (2006) The family caregiving career: implications for community-based long-term care practice and policy. Journal of Aging & Social Policy 18, 141–154.
Giebel, CM, Sutcliffe, C and Challis, D (2015) Activities of daily living and quality of life across different stages of dementia: a UK study. Aging & Mental Health 19, 63–71.
Given, B, Sherwood, PR and Given, CW (2008) What knowledge and skills do caregivers need? Journal of Social Work Education 44, 115–123.
Glazer, NY (1993) Women's Paid and Unpaid Labor: The Work Transfer in Health Care and Retailing. Philadelphia, PA: Temple University Press.
Gonyea, JG (1991) Alzheimer's disease support group participation and caregiver well-being. Clinical Gerontologist 10, 17–34.
Grant, MJ and Booth, A (2009) A typology of reviews: an analysis of 14 review types and associated methodologies. Health Information & Libraries Journal 26, 91–108.
Greenwood, N, Mackenzie, A, Cloud, GC and Wilson, N (2009) Informal primary carers of strike survivors living at home – challenges, satisfactions and coping: a systematic review of qualitative studies. Disability and Rehabilitation 31, 337–351.
Haley, WE, Brown, SL and Levine, EG (1987) Experimental evaluation of the effectiveness of group intervention for dementia caregivers. The Gerontologist 27, 376–382.
Harland, JA and Bath, PA (2008) Understanding the information behaviours of carers of people with dementia: a critical review of models from information science. Aging and Mental Health 12, 467–477.
Harris, R (2009) Cyber-burdens: emerging imperatives in women's unpaid care work. In Balka, E, Green, E and Henwood, F (eds), Gender, Health and Information Technology in Context. New York, NY: Palgrave Macmillan, pp. 72–87.
Harris, R, Wathen, N and Wyatt, S (2010) Working to be healthy: empowering consumers or citizens? In Harris, R, Wathen, N and Wyatt, S (eds), Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility. New York, NY: Palgrave Macmillan, pp. 211–224.
Henderson, S and Petersen, AR (eds) (2002) Consuming Health: The Commodification of Health Care. London: Routledge.
Hepburn, KW, Tornatore, J, Center, B and Ostwald, SW (2001) Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes. Journal of the American Geriatrics Society 49, 450–457.
Hirakawa, Y, Kuzuya, M, Enoki, H and Uemura, K (2011) Information needs and sources of family caregivers of home elderly patients. Archives of Gerontology and Geriatrics 52, 202–205.
Hogan, TP and Palmer, CL (2005) ‘Information work’ and chronic illness: interpreting results from a nationwide survey of people living with HIV/AIDS. Proceedings of the American Society for Information Science and Technology 42, 150–169.
Hooyman, NR and Gonyea, J (1995) Feminist Perspectives on Family Care. Thousand Oaks, CA: Sage.
Huvila, I (2009) Ecological framework of information interactions and information infrastructures. Journal of Information Science 35, 695–708.
Johnson, JD and Case, DO (2012) Health Information Seeking. New York, NY: Peter Lang.
Katz, S (1996) Disciplining Old Age: The Formation of Gerontological Knowledge. Charlottesville, VA: University of Virginia Press.
Keefe, J (2011) Supporting Caregivers and Caregiving in an Aging Canada (Report No. 23). Montreal: Institute for Research on Public Policy.
Keene, J, Hope, T, Fairburn, CG and Jacoby, R (2001) Death and dementia. International Journal of Geriatric Psychiatry 16, 969–974.
Kelly, F and Innes, A (2016) Facilitating independence: the benefits of a post-diagnostic support project for people with dementia. Dementia 15, 162–180.
Latour, B (2005) Reassembling the Social: An Introduction to Actor-Network Theory. Oxford: Oxford University Press.
Lee, RG and Garvin, T (2003) Moving from information transfer to information exchange in health and health care. Social Science and Medicine 56, 449–464.
Levac, D, Colquhoun, H and O'Brien, KK (2010) Scoping studies: advancing the methodology. Implement Science 5, 1–9.
Liberati, A, Altman, DG, Tetzlaff, J, Mulrow, C, Gøtzsche, PC, Ioannidis, JPA, Clarke, M, Devereaux, PJ, Kleijnen, J and Moher, D (2009) The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLOS Medicine 6, 7.
Lloyd, A (2011) Trapped between a rock and a hard place: what counts as information literacy in the workplace and how is it conceptualized? Library Trends 60, 277–296.
Malachowski, C, Skorobohacz, C and Stasiulis, E (2017) Institutional ethnography as a method of inquiry: a scoping review. Qualitative Sociology Review 13, 84–121.
Martindale-Adams, J, Nichols, LO, Burns, R and Malone, C (2002) Telephone support groups: a lifeline for isolated Alzheimer's disease caregivers. Alzheimer's Care Today 3, 181–189.
Marton, C (2011) Understanding How Women Seek Health Information on the Web (Doctoral dissertation). Available online at ProQuest Dissertations & Theses Global (No. NR 77863). Toronto, Ontario, Canada: University of Toronto.
Marziali, E and Donahue, P (2006) Caring for others: internet video-conferencing group intervention for family caregivers of older adults with neurodegenerative disease. The Gerontologist 46, 398–403.
Marziali, E and Garcia, LJ (2011) Dementia caregivers’ responses to 2 internet-based intervention programs. American Journal of Alzheimer's Disease & Other Dementias 26, 36–43.
Mastel-Smith, B and Stanley-Hermanns, M (2012) ‘It's like we're grasping at anything’: caregivers’ education needs and preferred learning methods. Qualitative Health Research 22, 1007–1015.
Mays, N, Roberts, E and Popay, J (2001) Synthesising research evidence. In Fulop, N, Allen, P, Clarke, A and Black, N (eds), Studying the Organisation and Delivery of Health Services: Research Methods. London: Routledge, pp. 188–220.
McCoy, L (2006) Keeping the institution in view: working with interview accounts of everyday practice. In Smith, DE (ed.), Institutional Ethnography as Practice. Toronto: Rowman & Littlefield, pp. 109–25.
Mittelman, MS, Ferris, SH, Shulman, E, Steinberg, G, Ambinder, A, Mackell, JA and Cohen, J (1995) A comprehensive support program: effect on depression in spouse-caregivers of AD patients. The Gerontologist 35, 792–802.
Mohide, EA, Pringle, DM, Streiner, DL, Gilbert, JR, Muir, G and Tew, M (1990) A randomized trial of family caregiver support in the home management of dementia. Journal of the American Geriatrics Society 38, 446–454.
Montgomery, R and Kosloski, K (2009) Caregiving as a process of changing identity: implications for caregiver support. Generations 33, 47–52.
National Alliance for Caregiving (NAC) and AARP Public Policy Institute (2015) Caregiving in the U.S. Bethesda, MD and Washington, DC: NAC and AARP.
Pálsdóttir, Á (2017) From noticing to suspecting: the initial stages in the information behaviour of informal caregivers of people with dementia. In Zhou, J and Salvendy, G (eds), Human Aspects of IT for the Aged Population: Applications, Services and Contexts. New York, NY: Springer, pp. 452–466.
Peterson, K, Hahn, H, Lee, AJ, Madison, CA and Atri, A (2016) In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers’ education needs, barriers, and preferences. BMC Geriatrics 16, 1.
Pham, MT, Rajić, A, Greig, JD, Sargeant, JM, Papadopoulos, A and McEwen, SA (2014) A scoping review of scoping reviews: advancing the approach and enhancing the consistency. Research Synthesis Methods 5, 371–385.
Prodinger, B, Shaw, L, Rudman, DL and Townsend, E (2012) Arthritis-related occupational therapy: making invisible ruling relations visible using institutional ethnography. British Journal of Occupational Therapy 75, 463–470.
Robinson, A, Elder, J, Emden, C, Lea, E, Turner, P and Vickers, J (2009) Information pathways into dementia care services: family carers have their say. Dementia 8, 17–37.
Rumrill, PD, Fitzgerald, SM and Merchant, WR (2009) Using scoping literature reviews as a means of understanding and interpreting existing literature. Work 35, 399–404.
Simpson, L, Hall, M and Leggett, S (2009) Gendered identities and caring: health intermediaries and technology in rural and remote Queensland. In Balka, E, Green, E and Henwood, F (eds), Gender, Health and Information Technology in Context. New York, NY: Palgrave Macmillan, pp. 34–52.
Smith, DE (1987) The Everyday World as Problematic: A Feminist Sociology. Toronto: University of Toronto Press.
Smith, DE (1999) Writing the Social: Critique, Theory, and Investigations. Toronto: University of Toronto Press.
Smith, DE (2005) Institutional Ethnography: A Sociology for People. Lanham, MD: Altamira Press.
Smith, DE (2006) Incorporating texts into ethnographic practice. In Smith, DE (ed.), Institutional Ethnography as Practice. New York, NY: Rowman & Littlefield Publishers, pp. 65–88.
Souden, M (2008) Information work in the chronic illness experience. Proceedings of the American Society for Information Science and Technology 45, 1–6.
Stark, A (2005) Warm hands in cold age: on the need of a new world order of care. Feminist Economics 11, 7–36.
Twigg, J and Atkin, K (1994) Carers Perceived: Policy and Practice in Informal Care. Buckingham, UK: Open University Press.
Urquhart, C and Yeoman, A (2010) Information behaviour of women: theoretical perspectives on gender. Journal of Documentation 66, 113–139.
Vaingankar, JA, Subramaniam, M, Picco, L, Eng, GK, Shafie, S, Sambasivam, R, Zhang, YJ and Chong, SA (2013) Perceived unmet needs of informal caregivers of people with dementia in Singapore. International Psychogeriatrics 25, 1605–1619.
Van Hout, HP, Vernooij-Dassen, MJ, Jansen, DA and Stalman, WA (2006) Do general practitioners disclose correct information to their patients suspected of dementia and their caregivers? A prospective observational study. Aging and Mental Health 10, 151–155.
van Vliet, D, de Vugt, ME, Bakker, C, Koopmans, RT, Pijnenburg, YA, Vernooij-Dassen, MJ and Verhey, FR (2011) Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics 23, 1393–1404.
Vasunilashorn, S, Steinman, BA, Liebig, PS and Pynoos, J (2012) Aging in place: evolution of a research topic whose time has come. Journal of Aging Research 2012, 1–6.
Wackerbarth, SB and Johnson, MMS (2002) Essential information and support needs of family caregivers. Patient Education and Counseling 47, 95–100.
Wald, C, Fahy, M, Walker, Z and Livingston, G (2003) What to tell dementia caregivers – the rule of threes. International Journal of Geriatric Psychiatry 18, 313–317.
Ward-Griffin, C and Marshall, VW (2003) Reconceptualizing the relationship between ‘public’ and ‘private’ eldercare. Journal of Aging Studies 17, 189–208.
Washington, KT, Meadows, SE, Elliott, SG and Koopman, RJ (2011) Information needs of informal caregivers of older adults with chronic health conditions. Patient Education and Counseling 83, 37–44.
Wilcox, S (2010) Lay knowledge: the missing middle of the expertise debates. In Harris, R, Wathen, N and Wyatt, S (eds), Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility. New York, NY: Palgrave Macmillan, pp. 45–64.
Wilson, HS (1989) Family caregivers: the experience of Alzheimer's disease. Applied Nursing Research 21, 40–45.
Winter, L and Gitlin, LN (2007) Evaluation of a telephone-based support group intervention for female caregivers of community-dwelling individuals with dementia. American Journal of Alzheimer's Disease & Other Dementias 21, 391–397.