Patients’ Understanding of Medical Technology in Palliative Home Care: A Qualitative Analysis

Healthcare reforms and reductions in the number of hospital beds are leading to an increasing amount of medical technology moving from hospitals into home care, affecting the daily lives of patients. The aim of this study was therefore to describe the ways patients understand medical technology in palliative home care. With use of a phenomenographic approach, 15 patients with medical technology were interviewed, and data were analyzed in a 7-step process. Three ways of understanding the phenomenon emerged: a masterful patient, an adjustable patient, and a restricted patient. Masterful patients took control over the medical technology and were mostly independent of assistance from personnel. Adjustable patients accepted and adapted their lives to the medical technology and were satisfied with assistance from the personnel. Restricted patients were reminded daily of the medical technology and dependent on assistance from personnel. Depending on the patients’ health conditions, the support from the personnel, and the impact of medical technology, a transfer between the different ways of understanding occurred with a simultaneous movement between independence and dependence. The patient exhibited various ways of understanding, although one way of understanding was more dominant.

[1]  Maintaining hope when close to death: insight from cancer patients in palliative home care. , 2010, International journal of palliative nursing.

[2]  P. Lehoux,et al.  The use of technology at home: what patient manuals say and sell vs. what patients face and fear. , 2004, Sociology of health & illness.

[3]  J. Johansson,et al.  Patient Participation in Decision Making at the End of Life as Seen by a Close Relative , 2000, Nursing ethics.

[4]  Nancy Kober,et al.  Safe, Comfortable, Attractive, and Easy to Use: Improving the Usability of Home Medical Devices , 1996 .

[5]  Berit Lindahl,et al.  Meanings of living at home on a ventilator. , 2003, Nursing inquiry.

[6]  Cheryl Tatano Beck,et al.  Essentials of nursing research , 2013 .

[7]  A. Norberg,et al.  The meaning of the lived experience of hope in patients with cancer in palliative home care , 2001, Palliative medicine.

[8]  A. Milberg,et al.  Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers , 2004, Psycho-oncology.

[9]  Andrea R Fleiszer,et al.  Safety in home care: a broadened perspective of patient safety. , 2007, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[10]  Lynn Stevenson,et al.  Home care safety perspectives from clients, family members, caregivers and paid providers. , 2009, Healthcare quarterly.

[11]  E. Bélanger,et al.  Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis , 2011, Palliative medicine.

[12]  C. Tishelman,et al.  Home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families. , 2005, Clinical nutrition.

[13]  H. Jónsdóttir,et al.  Technological dependency--the experience of using home ventilators and long-term oxygen therapy: patients' and families' perspective. , 2006, Scandinavian journal of caring sciences.

[14]  Andrew Georgiou,et al.  Strengthening organizational performance through accreditation research-a framework for twelve interrelated studies: the ACCREDIT project study protocol , 2011, BMC Research Notes.

[15]  E. Danielson,et al.  Patients' experiences of long-term oxygen therapy. , 1997, Journal of advanced nursing.

[16]  A. Norberg,et al.  Living with Severe Chronic Heart Failure in Palliative Advanced Home Care , 2006, European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology.

[17]  P. Strang,et al.  Existential loneliness in a palliative home care setting. , 2006, Journal of palliative medicine.

[18]  A. Abernethy,et al.  Research in End-of-Life Settings: An Ethical Inquiry , 2010, Journal of pain & palliative care pharmacotherapy.

[19]  Noemi Bitterman,et al.  Design of medical devices--a home perspective. , 2011, European journal of internal medicine.

[20]  P. Strang,et al.  Spiritual thoughts, coping and ‘sense of coherence’ in brain tumour patients and their spouses , 2001, Palliative medicine.

[21]  Ursula Lucas,et al.  Achieving Empathy and Engagement: A practical approach to the design, conduct and reporting of phenomenographic research , 2000 .

[22]  L. Hawryluck People at the end of life are a vulnerable research population. , 2004, Clinical oncology (Royal College of Radiologists (Great Britain)).

[23]  F. Marton Phenomenography — Describing conceptions of the world around us , 1981 .

[24]  Cheryl Tatano Beck,et al.  Essentials of Nursing Research: Appraising Evidence for Nursing Practice , 2001 .

[25]  I. Holmström,et al.  Phenomenographic or phenomenological analysis: does it matter? Examples from a study on anaesthesiologists’ work , 2007 .

[26]  F. Marton,et al.  Learning and Awareness , 1997 .

[27]  F. Marton,et al.  Two faces of variation , 1999 .

[28]  Bengt Fridlund,et al.  District nurses' conceptions of medical technology in palliative homecare. , 2011, Journal of nursing management.

[29]  Rn Berit Munck MNSc,et al.  District nurses' conceptions of medical technology in palliative homecare , 2011 .

[30]  C. Tishelman,et al.  The path from oral nutrition to home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families. , 2004, Clinical nutrition.

[31]  Joseph A Cafazzo,et al.  Patients' experiences with learning a complex medical device for the self-administration of nocturnal home hemodialysis. , 2009, Nephrology nursing journal : journal of the American Nephrology Nurses' Association.

[32]  Olle Söderhamn,et al.  Self-care among persons using advanced medical technology at home. , 2009, Journal of clinical nursing.

[33]  S. Alexander 'As long as it helps somebody': why vulnerable people participate in research. , 2010, International journal of palliative nursing.

[34]  P. Lehoux,et al.  Patients' perspectives on high-tech home care: a qualitative inquiry into the user-friendliness of four technologies , 2004, BMC health services research.

[35]  C. Ritchie,et al.  Do Palliative Consultations Improve Patient Outcomes? , 2008, Journal of the American Geriatrics Society.

[36]  Sarah Johnson Hope in terminal illness: an evolutionary concept analysis. , 2007, International journal of palliative nursing.