Self-Care Technologies and Collaboration

The self-management of a chronic condition is a collaborative activity, performed by patients and carers. However, to date, self-care technologies have been mostly designed for individual use. This article uses a case study of people living with Parkinson’s disease to (a) illustrate how patients and carers collaborate in self-management, (b) discuss the reasons why self-care technology is designed for individual use, and (c) explore the implications of recognizing collaborations for the design of self-care technologies. This work is based on a qualitative study with interviews and observations with people living with Parkinson’s. The analysis illustrates how people living with Parkinson’s collaborate in self-care to build a good life. In particular, it exemplifies how the complex interplay of actions and of patients and carers enables the different self-care activities to take place. To further integrate self-care technology in everyday life, designers need to consider collaborations when studying the context, conceptualizing a technology, and planning an evaluation.

[1]  Victoria Steiner,et al.  An E-rehabilitation Team Helps Caregivers Deal with Stroke , 2004 .

[2]  Patrick Olivier,et al.  LApp: A Speech Loudness Application for People with Parkinson's on Google Glass , 2015, CHI.

[3]  Debra Lauterbach,et al.  It's not that i don't have problems, i'm just not putting them on facebook: challenges and opportunities in using online social networks for health , 2011, CSCW.

[4]  Andrea Taylor,et al.  Supporting carers in their caring role through design , 2009, CHI Extended Abstracts.

[5]  K. Lorig,et al.  Self-Care and the Doctor-Patient Relationship , 2002, Medical care.

[6]  Paula Alexandra Silva,et al.  mobileWAY -- A System to Reduce the Feeling of Temporary Lonesomeness of Persons with Dementia and to Foster Inter-caregiver Collaboration , 2013, 2013 46th Hawaii International Conference on System Sciences.

[7]  Lizbeth Escobedo,et al.  Promoting Self-Reflection of Social Isolation Through Persuasive Mobile Technologies: The Case of Mother Caregivers of Children With Cancer , 2014, Int. J. Hum. Comput. Interact..

[8]  M. Vadiee,et al.  The UK ''Expert Patient Program'' and self-care in chronic disease management: An analysis , 2012 .

[9]  Lambert Felix,et al.  Care at a Distance: On the Closeness of Technology , 2013 .

[10]  L. Jean Camp,et al.  The portal monitor: a privacy-enhanced event-driven system for elder care , 2009, Persuasive '09.

[11]  Ronald Meyer,et al.  A digital game to support voice treatment for parkinson's disease , 2013, CHI Extended Abstracts.

[12]  Cristiano Storni,et al.  Multiple Forms of Appropriation in Self-Monitoring Technology: Reflections on the Role of Evaluation in Future Self-Care , 2010, Int. J. Hum. Comput. Interact..

[13]  Lena Mamykina,et al.  MAHI: investigation of social scaffolding for reflective thinking in diabetes management , 2008, CHI.

[14]  Stinne Aaløkke Ballegaard,et al.  Negotiating boundaries: managing disease at home , 2010, CHI.

[15]  Geraldine Fitzpatrick,et al.  A monitoring device as assistive lifestyle technology: combining functional needs with pleasure , 2013, AH.

[16]  Ivan Breskovic,et al.  Social Awareness Support for Meeting Informal Carers' Needs: Early Development in TOPIC , 2013 .

[17]  Neil S. Coulson,et al.  Empowering processes in online support groups among people living with HIV/AIDS: A comparative analysis of 'lurkers' and 'posters' , 2010, Comput. Hum. Behav..

[18]  C. Wright,et al.  Self-management approaches for people with chronic conditions: a review. , 2002, Patient education and counseling.

[19]  Yvonne Rogers,et al.  Best intentions: health monitoring technology and children , 2012, CHI.

[20]  Cristiano Storni,et al.  Complexity in an uncertain and cosmopolitan world. Rethinking personal health technology in diabetes with the Tag-it-Yourself , 2011, PsychNology J..

[21]  Ewa Wressle,et al.  Living with Parkinson's disease: Elderly patients’ and relatives’ perspective on daily living , 2007 .

[22]  M. Holanda,et al.  Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease. , 2007, Respiratory medicine.

[23]  J. Pols.  Knowing Patients , 2014 .

[24]  H. Worth,et al.  Self management in COPD: one step beyond? , 1997, Patient education and counseling.

[25]  B. Given,et al.  Family Support in Advanced Cancer , 2001, CA: a cancer journal for clinicians.

[26]  Stinne Aaløkke Ballegaard,et al.  The eDiary: Bridging Home and Hospital through Healthcare Technology , 2009, ECSCW.

[27]  Houeto Jean-Luc.  [Parkinson's disease]. , 2022, La Revue du praticien.

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

[29]  Thomas Ryberg,et al.  Making chocolate-covered broccoli: designing a mobile learning game about food for young people with diabetes , 2010, Conference on Designing Interactive Systems.

[30]  Francesca Bettio,et al.  Comparing Care Regimes in Europe , 2004 .

[31]  Brian T. Austin,et al.  Improving chronic illness care: translating evidence into action. , 2001, Health affairs.

[32]  Wanda Pratt,et al.  The Invisible Work of Being a Patient and Implications for Health Care: "[the doctor is] my business partner in the most important business in my life, staying alive" , 2008, Conference proceedings. Ethnographic Praxis in Industry Conference.

[33]  Melissa Bradley,et al.  Patients ’ and caregivers ’ experiences of the impact of Parkinson ’ s disease on health status , 2011 .

[34]  J M Corbin,et al.  Collaboration: couples working together to manage chronic illness. , 1984, Image--the journal of nursing scholarship.

[35]  E. Brink,et al.  Constructing grounded theory : A practical guide through qualitative analysis , 2006 .

[36]  Rebecca Randell,et al.  Editorial — Evaluating New Interactions in Health Care: Challenges and Approaches , 2010, Int. J. Hum. Comput. Interact..

[37]  William Rakowski,et al.  Self-Management of Chronic Disease by Older Adults , 1991 .

[38]  Daniel Jackson,et al.  Designing for and with People with Parkinson's: A Focus on Exergaming , 2015, CHI.

[39]  Binh Q Tran,et al.  Receptiveness, use and acceptance of telehealth by caregivers of stroke patients in the home. , 2004, Online journal of issues in nursing.

[40]  Annemarie Mol,et al.  Living with diabetes: care beyond choice and control , 2009, The Lancet.

[41]  Marian McLaughlin,et al.  Living and coping with Parkinson’s disease: Perceptions of informal carers , 2011, Palliative medicine.

[42]  Christian Fischer Pedersen,et al.  Feasibility of using a lightweight context-aware system for facilitating reliable home blood pressure self-measurements , 2013, 2013 7th International Conference on Pervasive Computing Technologies for Healthcare and Workshops.

[43]  Michael Fine,et al.  Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’ , 2005, Ageing and Society.

[44]  Finn Kensing,et al.  Designing for collaborative interpretation in telemonitoring: Re-introducing patients as diagnostic agents , 2011, Int. J. Medical Informatics.

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

[46]  J. Massano,et al.  Clinical approach to Parkinson's disease: features, diagnosis, and principles of management. , 2012, Cold Spring Harbor perspectives in medicine.

[47]  Gregory D. Abowd,et al.  Assessing asthma management practices through in-home technology probes , 2010, 2010 4th International Conference on Pervasive Computing Technologies for Healthcare.

[48]  Oliver Amft,et al.  COPDTrainer: a smartphone-based motion rehabilitation training system with real-time acoustic feedback , 2013, UbiComp.

[49]  Marc A Koopmanschap,et al.  Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis. , 2004, Arthritis and rheumatism.

[50]  Jakob E. Bardram,et al.  Designing mobile health technology for bipolar disorder: a field trial of the monarca system , 2013, CHI.

[51]  Ana Correia de Barros,et al.  User-centred design of a mobile self-management solution for Parkinson's disease , 2013, MUM.

[52]  Nervo Verdezoto,et al.  Beyond self-monitoring: understanding non-functional aspects of home-based healthcare technology , 2013, UbiComp.

[53]  L. Prior.  Belief, knowledge and expertise: the emergence of the lay expert in medical sociology. , 2003, Sociology of health & illness.

[54]  Sinziana Mazilu,et al.  GaitAssist: a daily-life support and training system for parkinson's disease patients with freezing of gait , 2014, CHI.

[55]  Rodney A Hayward,et al.  Informal caregiving for diabetes and diabetic complications among elderly americans. , 2002, The journals of gerontology. Series B, Psychological sciences and social sciences.