Awareness and handoffs in home care: coordination among informal caregivers

ABSTRACT Informal caregivers, such as family members and friends, are important for maintaining the health and wellness of the elderly and the chronically ill. However, the complexity of informal caregiving has been under-studied in prior research. In this study, we attempt to answer two main questions – what makes the coordination of patient care so difficult among multiple informal caregivers, and what are the challenges that should be considered in designing technologies to facilitate informal care coordination? To answer these questions, we conducted a qualitative interview study with 15 individuals with caregiving experience. The findings of the study identified the main challenges faced by caregivers in maintaining awareness, coordinating handoffs among informal caregivers, and easing tensions among caregivers and patients. These findings revealed considerations unique for informal caregiver coordination, and helped inform the design of technologies to support the care coordination.

[1]  A. Strauss,et al.  The discovery of grounded theory: strategies for qualitative research aldine de gruyter , 1968 .

[2]  Robert Albanese,et al.  Rational Behavior in Groups: The Free-Riding Tendency , 1985 .

[3]  J. Hooley,et al.  Expressed emotion and depression: interactions between patients and high- versus low-expressed-emotion spouses. , 1986, Journal of abnormal psychology.

[4]  S. Sharfstein Social Organization of Medical Work , 1986 .

[5]  L. Teri,et al.  Assessment of depression in patients with Alzheimer's disease: concordance among informants. , 1991, Psychology and aging.

[6]  Christian Heath,et al.  Collaborative Activity and Technological Design: Task Coordination in London Underground Control Rooms , 1991, ECSCW.

[7]  Kjeld Schmidt,et al.  Taking CSCW Seriously: Supporting Articulation Work * , 1992 .

[8]  Sati Mazumdar,et al.  Rating chronic medical illness burden in geropsychiatric practice and research: Application of the Cumulative Illness Rating Scale , 1992, Psychiatry Research.

[9]  Lucy A. Suchman,et al.  Making work visible , 1995, CACM.

[10]  Nancy Folbre,et al.  The Cost of Caring , 1999 .

[11]  J O'Brien,et al.  Caring for caregivers. , 2000, American family physician.

[12]  M. Gallant,et al.  The Costs of Caring: Impact of Dementia on Family Caregivers , 2001, Journal of geriatric psychiatry and neurology.

[13]  Susanne Bødker,et al.  Cooperation in massively distributed information space , 2001, ECSCW.

[14]  Elizabeth D. Mynatt,et al.  Digital family portraits: supporting peace of mind for extended family members , 2001, CHI.

[15]  Madhu C. Reddy,et al.  A finger on the pulse: temporal rhythms and information seeking in medical work , 2002, CSCW '02.

[16]  Lili Cheng,et al.  HutchWorld: clinical study of computer-mediated social support for cancer patients and their caregivers , 2002, CHI.

[17]  S. Czaja,et al.  Telecommunications Technology as an Aid to Family Caregivers of Persons With Dementia , 2002, Psychosomatic medicine.

[18]  I. Higginson,et al.  What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness , 2003, Palliative medicine.

[19]  David A. Fleming,et al.  Caregiving near the end of life: Unmet needs and potential solutions , 2003, Palliative & Supportive Care.

[20]  Bengt Fridlund,et al.  Living with heart failure: depression and quality of life in patients and spouses. , 2003, The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation.

[21]  José Orlando Gomes,et al.  Handoff strategies in settings with high consequences for failure: lessons for health care operations. , 2004, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[22]  Sara A. Bly,et al.  Technology for care networks of elders , 2004, IEEE Pervasive Computing.

[23]  Doug Coyle,et al.  Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers , 2004, Canadian Medical Association Journal.

[24]  Michael Weaver,et al.  Caregiving problems and feelings experienced by family caregivers of stroke survivors the first month after discharge , 2004, International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation.

[25]  Bonnie A. Nardi,et al.  A Web on the Wind: The Structure of Invisible Work , 1999, Computer Supported Cooperative Work (CSCW).

[26]  Wayne Katon,et al.  Depression and Comorbid Illness in Elderly Primary Care Patients: Impact on Multiple Domains of Health Status and Well-being , 2004, The Annals of Family Medicine.

[27]  Kjeld Schmidt,et al.  Taking CSCW seriously , 1992, Computer Supported Cooperative Work (CSCW).

[28]  K. Leichsenring,et al.  Developing integrated health and social care services for older persons in Europe , 2004, International journal of integrated care.

[29]  Emily Patterson,et al.  Themes Surrounding Novice Nurse Near-Miss and Adverse-Event Situations , 2004, The Journal of nursing administration.

[30]  Susan Leigh Star,et al.  Layers of Silence, Arenas of Voice: The Ecology of Visible and Invisible Work , 1999, Computer Supported Cooperative Work (CSCW).

[31]  Claus Bossen,et al.  Mobility Work: The Spatial Dimension of Collaboration at a Hospital , 2005, Computer Supported Cooperative Work (CSCW).

[32]  Michael Massimi,et al.  A Digital Support Device Designed to Help Family Caregivers Coordinate, Communicate and Plan the Care of People with Brain Injury , 2006, AMIA.

[33]  M. Zadoroznyj,et al.  Key Concepts in Medical Sociology , 2006 .

[34]  R. Grol,et al.  Problems Experienced by the Informal Caregivers of Cancer Patients and Their Needs for Support , 2006, Cancer nursing.

[35]  Gregory D. Abowd,et al.  Challenges and Opportunities for Collaboration Technologies for Chronic Care Management , 2006 .

[36]  Constança Paúl,et al.  Informal stroke rehabilitation: what do Thai caregivers perform? , 2006, International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation.

[37]  David W. Bates,et al.  White Paper: Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption , 2006, J. Am. Medical Informatics Assoc..

[38]  Janna C. Kimel,et al.  Continuous Activity Monitoring and Intelligent Contextual Prompting to Improve Medication Adherence , 2007, 2007 29th Annual International Conference of the IEEE Engineering in Medicine and Biology Society.

[39]  Jody Hoffer Gittell,et al.  Coordination between formal providers and informal caregivers. , 2007, Health care management review.

[40]  Jacek Dmochowski,et al.  Factors associated with medication hassles experienced by family caregivers of older adults. , 2007, Patient education and counseling.

[41]  M. Sheelagh T. Carpendale,et al.  An observational study on information flow during nurses' shift change , 2007, CHI.

[42]  N. Greenwood,et al.  Informal carers of stroke survivors–factors influencing carers: A systematic review of quantitative studies , 2008, Disability and rehabilitation.

[43]  T. Bodenheimer Coordinating care--a perilous journey through the health care system. , 2008, The New England journal of medicine.

[44]  P. Keith,et al.  Health Care Hassles of Caregivers to the Chronically Ill , 2009, International journal of aging & human development.

[45]  Carman Neustaedter,et al.  The calendar is crucial: Coordination and awareness through the family calendar , 2009, TCHI.

[46]  Myriam Lewkowicz,et al.  Translating social support practices into online services for family caregivers , 2009, GROUP.

[47]  Myriam Lewkowicz,et al.  Designing Social Support Online Services for Communities of Family Caregivers , 2009, BIS.

[48]  C. Shaw,et al.  Systematic review of respite care in the frail elderly. , 2009, Health technology assessment.

[49]  Wanda Pratt,et al.  Health Weaver Mobile: Designing a Mobile Tool for Managing Personal Health Information during Cancer Care. , 2010, AMIA ... Annual Symposium proceedings. AMIA Symposium.

[50]  Wanda Pratt,et al.  Catalyzing social support for breast cancer patients , 2010, CHI.

[51]  Gay Lee,et al.  The cost of caring. , 2010, Nursing standard (Royal College of Nursing (Great Britain) : 1987).

[52]  Judith A. Effken,et al.  Multi-professional patterns and methods of communication during patient handoffs , 2010, Int. J. Medical Informatics.

[53]  Stephen Downs,et al.  Project HealthDesign: Rethinking the power and potential of personal health records , 2010, J. Biomed. Informatics.

[54]  Wanda Pratt,et al.  Sharing is caring, but not error free: transparency of granular controls for sharing personal health information in social networks. , 2011, AMIA ... Annual Symposium proceedings. AMIA Symposium.

[55]  Steven R. Cali,et al.  Designing a Personal Health Application for Older Adults to Manage Medications: A Comprehensive Case Study , 2011, Journal of Medical Systems.

[56]  Leslie S. Liu,et al.  Improving communication and social support for caregivers of high-risk infants through mobile technologies , 2011, CSCW.

[57]  Wim van Harten,et al.  A web-based communication system for integrated care in cerebral palsy: experienced contribution to parent-professional communication , 2012, International journal of integrated care.

[58]  Matti Hämäläinen,et al.  Active life home: a portal-based home care platform , 2012, PETRA '12.

[59]  Sun Young Park,et al.  Loosely formed patient care teams: communication challenges and technology design , 2012, CSCW.

[60]  Maisa Toljamo,et al.  Impact of caregiving on Finnish family caregivers. , 2012, Scandinavian journal of caring sciences.

[61]  Roy Remmen,et al.  The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review , 2012, International journal of integrated care.

[62]  Michael L Volk,et al.  Multidisciplinary management of patients with cirrhosis: a need for care coordination. , 2013, Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association.

[63]  Tone Bratteteig,et al.  Moving Healthcare to the Home: The Work to Make Homecare Work , 2013, ECSCW.

[64]  Hideaki Kuzuoka,et al.  Understanding the conflicting demands of family caregivers caring for depressed family members , 2013, CHI.

[65]  Sun Young Park,et al.  Caring for caregivers: designing for integrality , 2013, CSCW.

[66]  Claus Bossen,et al.  CareCoor: Augmenting the coordination of cooperative home care work , 2013, Int. J. Medical Informatics.

[67]  Ingemar Kåreholt,et al.  Informal and formal care of older people in Iceland. , 2014, Scandinavian journal of caring sciences.

[68]  Michael Lees,et al.  Quantifying the burden of informal caregiving for patients with cancer in Europe , 2014, Supportive Care in Cancer.

[69]  David W. McDonald,et al.  Designing for Healthy Lifestyles: Design Considerations for Mobile Technologies to Encourage Consumer Health and Wellness , 2014, Found. Trends Hum. Comput. Interact..

[70]  Anind K. Dey,et al.  Real-time feedback for improving medication taking , 2014, CHI.

[71]  Magnus Jegermalm,et al.  Stereotypes about caregiving and lessons from the Swedish panorama of care , 2015 .

[72]  Geraldine Fitzpatrick,et al.  Self-Care Technologies in HCI: Trends, Tensions, and Opportunities , 2015, TCHI.

[73]  Jacek Jassem,et al.  Caring for relatives with lung cancer in Europe: an evaluation of caregivers’ experience , 2015, Quality of Life Research.

[74]  Myriam Lewkowicz,et al.  "Counting on the Group": Reconciling Online and Offline Social Support among Older Informal Caregivers , 2016, CHI.

[75]  Volker Wulf,et al.  Designing for Those who are Overlooked: Insider Perspectives on Care Practices and Cooperative Work of Elderly Informal Caregivers , 2016, CSCW.

[76]  Andrew D. Miller,et al.  Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay , 2016, CSCW.

[77]  Abeer M Alrashed,et al.  Illustration of informal caregiving within Saudi society: demography, scope of care and enabling arrangements , 2017, Scandinavian journal of caring sciences.

[78]  Luisa Saiani,et al.  Factors affecting in‐hospital informal caregiving as decided by families: findings from a longitudinal study conducted in acute medical units , 2017, Scandinavian journal of caring sciences.

[79]  Stephanie A. Hooker,et al.  Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review , 2017, Heart Failure Reviews.