Technology dependence in home care: Impact on patients and their family caregivers

Nutrition in Clinical Practice

Volumn 21, Issue 6, 2006, Pages 544-556

  Winkler, Marion F ^a,b   Ross, Vicki M ^c   Piamjariyakul, Ubolrat ^c   Gajewski, Byron ^c,d   Smith, Carol E ^c  

^a RHODE ISLAND HOSPITAL   (United States)

^b UNIVERSITY OF MEDICINE AND DENTISTRY OF NEW JERSEY   (United States)

^c UNIVERSITY OF KANSAS SCHOOL OF NURSING   (United States)

^d UNIVERSITY OF KANSAS   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CAREGIVER; COST EFFECTIVENESS ANALYSIS; HEALTH CARE COST; HOME CARE; HOME PARENTERAL NUTRITION; HUMAN; LIFESTYLE; PARENTERAL NUTRITION; PATIENT CARE; QUALITY OF LIFE; REVIEW; SOCIAL ISOLATION; TECHNOLOGY;

CAREGIVERS; HUMANS; PARENTERAL NUTRITION, HOME; PATIENTS;

EID: 33845247802     PISSN: 08845336     EISSN: None     Source Type: Journal    
DOI: 10.1177/0115426506021006544     Document Type: Review

References (133)

1. American Society for Parenteral and Enteral Nutrition Board of Directors and Standards Committee. Definition of terms, style, and conventions used in A.S.P.E.N. guidelines and standards. Nutr Clin Pract. 2005;20:281-285.
2. Smith CE. Quality of life and caregiving in technological home care. In: Fitzpatrick JJ, Norbeck J, eds. Annual Review of Nursing Research. New York, NY: Springer Publishing Company; 1996:95-118.
3. Lehoux P, Saint-Arnaud J, Richard L. The use of technology at home: what patient manuals say and sell vs. what patients face and fear. Social Health Illn. 2004;26:617-644.
4. Bachenheimer CC. Quality of life: a better argument for home care. Homecare. 2002;July:66-68.
5. Gulledge AD, Srp F, Sharp JW, Matarese L, O'Neill M, Steiger E. Psychosocial issues of home parenteral and enteral nutrition. Nutr Clin Pract. 1987;5:183-194.
6. Lehoux P. Patients' perspectives on high-tech home care: a qualitative inquiry into the user-friendliness of four technologies. BMC Health Serv Res. 2004;4:28-36.
7. Ziegler SW. Living on nutritional support: one patient's perspective. Nutr Clin Pract. 1989;4:57-61.
8. Howard L. Length of life and quality of life on home parenteral nutrition. JPEN J Parenter Enteral Nutr. 2002;26(Suppl 5):S55-S59.
9. Hoffman KC. Psychosocial concerns of home nutrition therapy consumers. Nutr Clin Pract. 1989;4:51-56.
10. Ehrenpreis B, Hilf A. Home parenteral nutrition: the consumer's perspective. Support Line. 1998;20:1-3.
11. Howard L, Ament M, Fleming CR, Shike M, Steiger E. Current use and clinical outcome of home parenteral and enteral nutrition therapies in the United States. Gastroenterology. 1995;109: 355-365.
12. Smith CE, Curtas S, Kleinbeck SV, et al. Clinical trial of interactive and videotaped educational interventions reduce infection, reactive depression, and rehospitalizations for sepsis in patients on home parenteral nutrition. JPEN J Parenter Enteral Nutr. 2003;27:137-145.
13. Barr JT, Schumacher GE. The need for a nutrition-related quality-of-life measure. J Am Diet Assoc. 2003;103:177-180.
14. McHorny CA, Ware JE, Lu JF, Sherbourne CD. The MOS 36 Item Short Form Health Survey (SF 36): tests of data quality, scaling assumptions and reliability across diverse patient groups. Med Care. 1994;32:40-66.
15. Sandelowski M. Toward a theory of technology dependency. Nurs Outlook. 1993;41:36-42.
16. Marden SF. Technology dependence and health-related quality of life: a model. J Adv Nurs. 2005;50:187-195.
17. Baxter JP, Fayers PM, McKinlay AW. A review of the instruments used to assess the quality of life of adult patients with chronic intestinal failure receiving parenteral nutrition at home. Br J Nutr. 2005;94:633-638.
18. Hanchett M. Quality of life of cancer patients receiving home infusion services. J Infus Nurs. 2001;24:244-248.
19. Gill TM, Feinstein AR. A critical appraisal of the quality of quality of life instruments. JAMA. 1994;272:619-626.
20. Breier SJ. Home intravenous therapy down under: consumer perspectives. J Intraven Nurs. 1991;22:187-193.
21. Winkler MF. Quality of life in adult home parenteral nutrition patients. JPEN J Parenter Enteral Nutr. 2005;29:162-170.
22. McMillan SC, Small BJ. Symptom distress and quality of life in patients with cancer newly admitted to hospice home care. Oncol Nurs Forum. 2002;29:1421-1428.
23. Hernfindal ET, Bernstein LR, Kudzia K, Wong A. Survey of home nutritional support patients. JPEN J Parenter Enteral Nutr. 1989;13:255-261.
24. Malone M. Longitudinal assessment of outcome, health status, and changes in lifestyle associated with long-term home parenteral and enteral nutrition. JPEN J Parenter Enteral Nutr. 2002;26:164-168.
25. Pironi L, Paganelli F, Labate AM, et al. Safety and efficacy of home parenteral nutrition for chronic intestinal failure: a 16-year experience at a single centre. Dig Liver Dis. 2003;35: 314-324.
26. Huisman-de Waal G, Naber T, Schoonhoven L, Persoon A, Sauerwein H, van Achterberg T. Problems experienced by patients receiving parenteral nutrition at home: results of an open interview study. JPEN J Parenter Enteral Nutr. 2006;30: 215-221.
27. Carlsson E, Bosaeus I, Nordgren S. Quality of life and concerns in patients with short bowel syndrome. Clin Nutr. 2003;22:445-452.
28. Persoon A, Huisman-de Wall G, Naber TA, et al. Impact of long-term HPN on daily life in adults. Clin Nutr. 2005;24:304-313.
29. Baker D. Hyperalimentation at home. Am J Nurs. 1974;74: 1826-1829.
30. Kindle R. Life with Fred: 12 years of home parenteral nutrition. Nutr Clin Pract. 2003;18:235-237.
31. Silver HJ. The lived experience of home total parenteral nutrition: an online qualitative inquiry with adults, children, and mothers. Nutr Clin Pract. 2004;19:297-304.
32. Orrevall Y, Tishelman C, Permert J. Home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families. Clin Nutr. 2005;24:961-970.
33. Boutin J, Hagan E. Patients' preference regarding portable pumps. J Intraven Nurs. 1992;15:230-232.
34. Nicholson S. Understanding home infusion pumps for patient quality of life. Contin Care. 1990;9:38-42.
35. Brookes D. Loss of the ability to eat and drink: a case study. J Comm Nurs. 2002;16:6-10.
36. Larsson M, Hedelin B, Athlin E. Lived experiences of eating problems for patients with head and neck cancer during radiotherapy. J Clin Nurs. 2003;12:562-570.
37. Olsson U, Bergbom I, Bosaeus I. Patients' experiences of their intake of food and fluid following gastrectomy due to tumor. Gastroenterol Nurs. 2002;25:146-153.
38. Walker A. In the absence of food: a case of rhythmic loss and spoiled identity for patients with percutaneous endoscopic gastrostomy feeding tube. Food Culture Soc. 2005;8:161-180.
39. Terrell JE, Ronis DL, Fowler KE, et al. Clinical predictors of quality of life in patients with head and neck cancer. Arch Otolaryngol Head Neck Surg. 2004;130:401-408.
40. Hagren B, Pettersen IM, Severinsson E, Lutzen K, Clyne N. The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease. J Adv Nurs. 2001;34:196-202.
41. Wellard SJ, Street AF. Family issues in home-based care. Int J Nurs Pract. 1999;5:132-136.
42. Buck N, Roy C, Atcherson E. Life with dialysis: structured interviews provide feedback. J Nephrol Nurs. 1986;3:78-81.
43. Lindahl B, Sandman PO, Rasmussen BH. Meanings of living at home on a ventilator. Nurs Inquiry. 2003;10:19-27.
44. Fitzgerald KA. The Psychological and Social Impact of Home Parenteral Nutrition. Unpublished doctoral paper. Chicago, IL: Graduate College of the University of Illinois at Chicago; 2004.
45. Grindel CG, Whitmer K, Barsevick A. Quality of life and nutritional support in patients with cancer. Cancer Pract. 1996;4:81-87.
46. Winkler MF, Wetle T. A pilot study of a qualitative interview guide for quality of life in home parenteral nutrition patients. Support Line. 2006;28:19-25.
47. Crogan NL, Evans B, Severtsen B, Shultz JA. Improving nursing home food service: uncovering the meaning of food through residents' stories. J Gerontol Nurs. 2004;30:29-36.
48. Liley AJ, Manthorpe J. The impact of home enteral tube feeding in everyday life: a qualitative study. Health Soc Care Community. 2003;11:415-422.
49. Mansilla ME. Benefits from artificial nutritional support: a testimonial. Nutrition. 2003;19:78-80.
50. Smith CE, Curtas S, Werkowitch M, Kleinbeck SVM, Howard L. Home parenteral nutrition: does affiliation with a national support and educational organization improve patient outcomes? JPEN J Parenter Enteral Nutr. 2002;26:159-163.
51. Smith CE. Quality of life in long-term total parenteral nutrition patients and their family caregivers. JPEN J Parenter Enteral Nutr. 2002;17:501-506.
52. Smeenk FWJM, van Haastregt CM, de Witte LP, Crebolder JM. Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: systematic review. BMJ. 1998;316:1939-1944.
53. Howard L, Hassan N. Home parenteral nutrition: 25 years later. In: Fleming CR, ed. Gastroenterology Clinics of North America. Philadelphia, PA: Saunders; 1998:481-512.
54. Howard L. What the primary physician needs to know about home parenteral nutrition. Nutr Clin Care. 2000;3:297-308.
55. Smith CE, Pace K, Kochinda C, Kleinbeck SV, Koehler J, Popkess-Vawter S. Caregiving effectiveness model evolution to a midrange theory of home care: a process for critique and replication. ANS Adv Nurs Sci. 2002;25:50-64.
56. Smith CE, Moushey L, Ross JA, Gieffer C. Responsibilities and reactions of family caregivers of patients dependent on total parenteral nutrition at home. Public Health Nurs. 1993;10:122-128.
57. Fitzgerald K. Quality of Life of HPN and Bowel Transplant. Unpublished dissertation. Chicago, IL: University of Illinois; 2003.
58. Smith CE. Caregiving effectiveness in families managing complex technology at home: replication of a model. Nurs Res. 1999;48:120-128.
59. Smith CE. A model of Caregiving effectiveness for technologically dependent adults. ANS Nurs Sci. 1994;17:27-40.
60. Meyer G. Centers for Disease Control (CDC) streaming video statement by Dr. Greg Meyer, director of the Center for Quality Improvement and Patient Safety, AHRQ. Available at: http:// www.cdc.gov. Accessed January 2, 2006.
61. Silver HJ, Wellman NS, Galindo-Ciocon D, Johnson P, Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving. J Am Diet Assoc. 2004;104:43-50.
62. Beanlands H, Horsburgh ME, Fox S, et al. Caregiving by family and friends of adults receiving dialysis. Nephrol Nurs J. 2005; 32:621-631.
63. Smith CE. Quality of life and caregiving in technological home care. Ann Rev Nurs Res. 1996;14:95-118.
64. Cohen S. Living with HPN: a caregiver's perspective: Caring for the Caregiver Support Implications Panel. A.S.P.E.N. Scientific Symposium; January 18-22, 2003; San Antonio, TX.
65. Steiger E, Ireton-Jones C. The evolution of home parenteral nutrition in the United States. Nutr Clin Pract. 2001;16:236-239.
66. Ireton-Jones C. Nutrition support in home care. In: Matarese LEM, Gottschlich MM, eds. Contemporary Nutrition Support: A Clinical Guide. Philadelphia, PA: WB Saunders; 1998:611-623.
67. McNeal GE. AACN guide to acute care procedures in the home. Philadelphia, PA: Lippincott; 2000.
68. Scott LD. Caregiving and care receiving among a technologically dependent heart failure population. ANS Adv Nurs Sci. 2000;23: 82-97.
69. Gorski L. Patient education in high-tech homecare. Caring. 1995;14:11-28.
70. Schultz R, Lustig A, Handler S, Martire LM. Technology based caregiver intervention research: current status and future directions. Gerontechnology. 2002;2:1-10.
71. Elliott TR, Shewchuk RM. Social problem-solving abilities and distress among family members assuming a caregiving role. Br J Health Psychol. 2003;8(pt 2):149-163.
72. Kochinda C. Psychometric Evaluation of the Style of Helping Scale, the Intensity of Help Scale and the Treat-Support Scale. Kansas City, KS: University of Kansas; 2000.
73. Beach S, Schulz R, Yee J, Jackson S. Negative and positive health effects of caring for a disabled spouse. Psychol Aging. 2000;15:259-271.
74. Christakis NA, Allison PD. Mortality after the hospitalization of a spouse. N Engl J Med. 2006;354:719-730.
75. Given BG, Given CW. Health promotion for family caregivers of chronically ill elders. Ann Rev Nurs Res. 1998;16:197-217.
76. Heaton J, Noyes J, Sloper P, Shah R. Families' experiences of caring for technology-dependent children: a temporal perspective. Health Soc Care Community. 2005;13:441-450.
77. Kirk S. Families' experiences of caring at home for a technology-dependent child: a review of the literature. Child Care Health Dev. 1998;24:101-114.
78. Casper RC, Kocsis J, Dysken M, Stokes P, Croughan J, Maas J. Cortisol measures in primary major depressive disorder with hypersomnia or appetite increase. J Affect Disord. 1988;15:131-140.
79. Jewett ME, Dijk DJ, Kronauer RE, Dinges DF. Dose-response relationship between sleep duration and human psychomotor vigilance and subjective alertness. Sleep. 1999;22:171-179.
80. Takahashi M, Arito H. Maintenance of alertness and performance by a brief nap after lunch under prior sleep deficit. Sleep. 2000;23:813-819.
81. Mednick SC, Nakayama K, Cantero JL, et al. The restorative effect of naps on perceptual deterioration. Nat Neurosci. 2002;5: 677-681.
82. Stickgold R, Whidbee D, Schirmer B, Patel V, Hobson JA. Visual discrimination task improvement: a multi-step process occurring during sleep. J Cogn Neurosci. 2000;12:246-254.
83. Kuster PA, Badr LK, Chang BL, Wuerker AK, Benjamin AE. Factors influencing health promoting activities of mothers caring for ventilator-assisted children. J Pediatr Nurs. 2004;19: 276-287.
84. Koopmanschap MA, van Exel NJ, van den Bos GA, van den Berg B, Brouwer WB. The desire for support and respite care: preferences of Dutch informal caregivers. Health Policy. 2004;68:309-320.
85. Douglas SL, Daly BJ, Kelley CG, O'Toole E, Montenegro H. Impact of a disease management program upon caregivers of chronically critically ill patients. Chest. 2005;128:3925-3936.
86. Smith CE, Holcroft C, Rebeck SL, Thompson NC, Werkowitch M. Journal writing as a complementary therapy for reactive depression: a rehabilitation teaching program. Rehabil Nurs. 2000;25: 170-176.
87. Kuster PA, Merkle CJ. Caregiving stress, immune function, and health: implications for research with parents of medically fragile children. Issues Compr Pediatr Nurs. 2004;27:257-276.
88. Smith CE, Leenerts MH, Gajewski BJ. A systematically tested intervention for managing reactive depression. Nurs Res. 2003; 52:401-409.
89. Leahy H. Treatment Plans and Interventions for Depression and Anxiety Disorders. New York, NY: Guilford; 2000.
90. Kirk S, Glendinning C, Callery P. Parent or nurse? The experience of being the parent of a technology-dependent child. J Adv Nurs. 2005;51:456-464.
91. Ratliffe CE, Harrigan RC, Haley J, Tse A, Olson T. Stress in families with medically fragile children. Issues Compr Pediatr Nurs. 2002;25:167-188.
92. Wang KW, Barnard A. Technology-dependent children and their families: a review. J Adv Nurs. 2004;45:36-46.
93. Levine C. Acceptance, avoidance, and ambiguity: conflicting social values about childhood disability. Kennedy Inst Ethics J. 2005;15:371-383.
94. Montagnino BA, Mauricio RV. The child with a tracheostomy and gastrostomy: parental stress and coping in the home - a pilot study. Pediatr Nurs. 2004;30:373-380, 401.
95. Hunkeler EM, Meresman, JF, Hargreaves WA, et al. Efficacy of nurse telehealth care and peer support in augmenting treatment of depression in primary care. Arch Fam Med. 2000;9:700-708.
96. Mahoney D, Tarlow B, Jones RN, Tennstedt S, Kasten L. Factors affecting the use of a telephone-based intervention for caregivers of people with Alzheimer's disease. J Telemed Telecare. 2001;7: 139-148.
97. Im EM, Meleis A. Situation-specific theories: philosophical roots, properties and approach. Adv Nurs Sci. 1999;22:11-24.
98. Robinson K, Austin JK. Wife caregivers' and supportive others' perceptions of the caregivers' health and social support. Res Nurs Health. 1998;21:51-57.
99. Gottrand F, Staszewski P, Colomb V, et al. Satisfaction in different life domains in children receiving home parenteral nutrition and their families. J Pediatr. 2005;146:793-797.
100. Agazio JG. Family transition through the termination of private duty home care nursing. J Pediatr Nurs. 1997;12:74-84.
101. Thyen U, Kuhlthau K, Perrin JM. Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics. 1999;103(6 pt 1):1235-1242.
102. rd ed. Philadelphia, PA: WB Saunders; 2001:512-528.
103. Schalamon J, Mayr JM, Hollwarth ME. Mortality and economics in short bowel syndrome. Best Pract Res Clin Gastroenterol. 2003;17:931-942.
104. Cade A, Puntis J. Economics of home parenteral nutrition. Pharmacoeconomics. 1997;12:327-338.
105. Smith CE, Stuart M, Weinrich M. Protecting the most vulnerable to Medicaid/HMO managed care shortfalls: ventilator home care testimony. Neurorehabil Neural Repair. 2001;15:159-166.
106. Gaskamp CD. Quality of life and changes in health insurance in long-term home care. Nurs Econ. 2004;22:135-146.
107. Arthur D, Pang S, Wong T. The effect of technology on the caring attributes of an international sample of nurses. Int J Nurs Stud. 2001;38:37-43.
108. Smith CE, Kleinbeck SV, Boyle D, Kochinda C, Parker S. Family Caregivers' Motives for Helping Scale derived from motivation-to-help theory. J Nurs Meas. 2001;9:239-257.
109. Smith CE, Kleinbeck SVM, Fernengel K, Mayer LS. Efficiency of families managing home health care of an adult dependent on a mechanical ventilator. Ann Oper Res. 1997;73:157-175.
110. nd ed. Detroit, MI: Michigan Academic Publishers; 2001.
111. Hollingsworth B, Dawson PJ, Maniadakis N. Efficiency measurement of health care: a review of non-parametric methods and applications. Health Care Manag Sci. 1999;2:161-172.
112. Seiford LM, Thrall RM. Recent developments in DEA: the mathematical programming approach to frontier estimation. J Econometrics. 1990;46:7-38.
113. Athanassopoulos AD, Gornaris C, Sissouras A. A descriptive assessment of the production and cost efficiency of general hospitals. Health Care Manag Sci. 1999;9:97-106.
114. Chattopadhyay S, Ray SC. Technical, scale, and size efficiency in nursing home care: a nonparametric analysis of Connecticut homes. Health Econ. 1996;5:363-373.
115. Fernengel K. Data Envelopment Analysis of Efficiency and Effectiveness of Time and Personal Use by Families Providing Complex Health Care at Home. Unpublished doctoral dissertation. University of Kansas; 1994.
116. Moore J, Smith CE, Spaniol R. The dollars and sense of CPAP Internet treatment. Adv Manag Resp Care. 2004;13:50-54.
117. Kenney G, Rajan S. Understanding dual enrollees' use of Medicare home health services: the effects of differences in Medicaid home care programs. Med Care. 2000;38:90-98.
118. Marchi-Jones S, Murphy JF, Rousseau P. Caring for the caregivers. J Gerontol Nurs. 1996;22:7-13, 54-55.
119. Morey HJ. Key issues in the family research process: strategies for nurse researchers. Adv Nurs Sci. 1990;12:1-14.
120. Spaniol R. Resource Use Among Families Managing Technologically Complex Care at Home. Dissertation. University of Kansas; 2002.
121. Taylor D. Effectiveness of professional-peer group treatment: symptom management for women with PMS. Res Nurs Health. 1999;22:496-511.
122. Taylor T, McLean P. Outcome profiles in the treatment of unipolar depression. Behav Res Ther. 1993;31:325-330.
123. Seiford LM, Ahn T. Sensitivity of DEA in hypothesis testing. In: Ijiri Y, ed. Creative and Innovative Approaches to the Science of Management. New York, NY: Croonwood; 1993.
124. Charnes A, Cooper W, Lewin AY, Seiford LM. Data Envelopment Analysis: Theory, Methodology and Applications. Boston, MA: Kluwer Academic Publishers; 1993.
125. Luoma K, Jarvio ML, Suoniemi I, Hjerppe RT. Financial incentives and productive efficiency in Finnish health centers. Health Econ. 1996;5:435-445.
126. Delegge MH. Demographics of home parenteral nutrition. JPEN J Parenter Enteral Nutr. 2002;26(5 suppl):S60-S62.
127. Aukett L. Coverage denied for ostomy supplies [letter]. Lifeline. 2002;23:13.
128. Curtas S, Hariri R, Steiger E. Case management in home total parenteral nutrition: a cost-identification analysis. JPEN J Parenter Enteral Nutr. 1996;20:113-119.
129. Naylor M, Brooten D, Campbell R, et al. Comprehensive discharge planning and home follow-up of hospitalized elders. JAMA. 1999;281:613-620.
130. LeClerc CM, Wells DL, Craig D, Wilson JL. Falling short of the mark: tales of life after hospital discharge. Clin Nurs Res. 2002;11:242-263.
131. Orrevall Y, Tishelman C, Herrington MK, Permert J. The path from oral nutrition to home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families. Clin Nutr. 2004;23:1280-1287.
132. Drewnowski A, Evans WJ. Nutrition, physical activity, and quality of life in older adults: summary. J Gerontol A Biol Sci Med Sci. 2001;56A:89-94.
133. Smith C. NIH R01 Grant, "Rural Dwelling Older Adults: Technology Dependence Adherence Support." NR#04828, 2000-06.