Main Article Content
Advanced medical technology creates hope for ventilator-dependent patients under home-based care. However, family caregiving for patients with home mechanical ventilation (HMV) is associated with a particularly heavy workload. Greater understanding an experience as a family caregiver providing care for a loved one dependent on HMV is needed for the benefit of healthcare providers. The aim of this paper is to analyze in detail ‘being in the midst of a storm and labyrinth of suffering’, one category of a substantive theory on family caregiving for patients with HMV. This category was developed from a grounded theory study of 22 family caregivers of patients with HMV. Data were collected by using in-depth interviews and participant observations and analyzed by using constant comparison of Strauss and Corbin’s version of grounded theory. The study revealed the caregiving process for patients with HMV is as being in the midst of a storm and labyrinth of suffering, which can be explained in the following three sub-categories: (i) feeling incompetent and fear; (ii) managing competing demands and (iii) being overwhelmed. The results of this study highlight suffering as experienced by family caregivers of patients with HMV in Thailand. Understanding of this caregiving process can guide the development of interventions to enhance family caregivers’ abilities to provide good care for patients with HMV and to alleviate suffering from the
Garner DJ, Berlowitz DJ, Douglas J, et al. Home mechanical ventilation in Australia and New Zealand. ERJ. 2013; 41(1): 39-45.
Povitz M, Rose, L, Shariff SZ, et al. Home mechanical ventilation: A 12-year population-based retrospective cohort study. Respir Care. 2018; 63(4): 380-7.
King AC. Long-term home mechanical ventilation in the United States. Respir Care. 2012; 57(6): 921-30.
Make BJ, N S Hill , Goldberg AI. Mechanical ventilation beyond the intensive care unit: report of a consensus of the American College of Chest Physicians. Chest. 1998; 113: 289-344.
Windisch W. Home mechanical ventilation. In: Tobin MJ, editor. Principle and practice of mechanical ventilation. 3 ed. Chicago: The McGraw-Hill Companies; 2013. p. 683-97.
Tagami M, Kimura F, Nakajima H, et al. Tracheostomy and invasive ventilation in Japanese ALS patients: Decision-making and survival analysis 1990–2010. J Neurol Sci. 2014; 344 (2): 158-64.
MacIntyre E, Asadi L, McKim DA, et al. Clinical outcomes associated with home mechanical ventilation: A systematic review. Can Respir J. 2016; 30(1): 1-10.
Downes JJ, Boroughs DS, Dougherty J, et al. A statewide program for home care of children with chronic respiratory failure. Caring. 2007; 26 (9): 16-18.
Nava S, Vitacca M. Chronic ventilator facilities. In Tobin MJ, editor. Principle and practice of mechanical ventilation. Chicago, IL: The McGraw Hill; 2013.
Ballangrud R, Bogsti WB, Johansson IS. Clients’ experiences of living at home with a mechanical ventilator. J Adv Nurs. 2009; 65: 425-34. doi: 410.1111/j.1365-2648.2008.04907.
Guber A, Morris E, Chen B, Israeli S. First experience with the home-care management system for respiratory patients in Israel. IMAJ. 2002;4(6): 418-20.
Dyrstad DN, Hansen BS, Gundersen EM. Factors that influence user satisfaction: tracheotomised home mechanical ventilation users’ experiences. J Clin Nurs. 2013; 22: 331-8. doi: 310.1111/j.1365-2702.2012.04304.x.
Israelsson-Skogsberg A, Lindahl B. Personal care assistants’ experiences of caring for people on home mechanical ventilation. Scand J Caring Sci. 2017; 31(1): 27-36.
Dreye PS, Steffensen BF, Pedersen BD. Life with home mechanical ventilation for young men with duchenne muscular dystrophy. J Adv Nurs. 2010, 66: 753-62.
Sancho J, Servera E, Dıaz JL, et al. Home tracheotomy mechanical ventilation in patients with amyotrophic lateral sclerosis: Causes, complications and 1-year survival. Thorax. 2011; 66: 948-52.
Laakso K, Markström A, Havstam C, Idvall M, Hartelius L. Communicating with individuals receiving home mechanical ventilation: the experiences of key communication partners. Disabil Rehabil 2014; 36(11): 875-83.
MacIntyre NR. Chronic Critical Illness: The growing challenge to health care. Respir Care. 2012; 57(6): 1021-7.
Bystedt M, Eriksson M, Wilde-Larsson B. Delegation within municipal health care. J Nurs Manag. 2011; 19(4): 534-41.
Dybwik K, Nielsen EW, Brinchmann BS. Home mechanical ventilation and specialised health care in the community: Between a rock and a hard place. BMC Health Serv Res. 2011; 11 (115): 1-9.
Dybwik K, Nielsen EW, Brinchmann BS. Ethical challenges in home mechanical ventilation: A secondary analysis. Nurs Ethics. 2011; 19(2): 233-44.
Dybwik K, Tollali T, Nielsen EW, et al. Why does the provision of home mechanical ventilation vary so widely? Chron Respir Dis. 2010; 7(2): 67-73. doi: 10.1177/1479972309357497.
Wongsawang N, Lagampan S, Lapvongwattana P, et al. Family caregiving for dependent older adults in Thai families. J Nurs Scholarsh. 2013; 45(4): 336-43.
Muangpaisan W, Praditsuwan R, Assanasen J, et al. Caregiver burden and needs of dementia caregivers in Thailand: A cross-sectional study. J Med Assoc Thai. 2010; 93(5): 601-7.
Meecharoen W, Northouse LL, Sirapo-ngam Y, et al. Family Caregivers for Cancer Patients in Thailand: An Integrative Review. Sage Open. 2013; 3(3): 1-14. doi: 10.1177/2158244013500280.
Piyakong D. Challenges faced by Thai families when a loved one has a traumatic brain injury. Arch Psychiatr Nurs. 2014; 28(3): 220-1.
Kertchok R. Building collaboration in caring for people with schizophrenia. Issues Ment Health Nurs. 2014; 35(11): 872-82.
Preutthipan A. Home care and mechanical ventilation for children in Thailand. IVUN. 2000; 14: 1-2.
Chaigual S, Kitphaiboonchai T, & Udchumpisai M. Nursing management in patient with home mechanical ventilation. JONAE. 2015; 8(4):1-10. Thai.
Udchumpisai M. Thriving in family caregiving: A grounded theory study of Thai family caregivers of patients with home mechanical ventilation (HMV) [Thesis]. [Songkhla]: Prince of Songkla University; 2005. 244 p.
Strauss AL. Qualitative analysis for social scientists. Cambridge, UK: Cambridge University; 1987.
Strauss A, Corbin J. Basic of qualitative research: Techniques and procedures for developing grounded theory. California: Sage; 1998.
Corbin J, Strauss A. Basic of qualitative research: Techniques and procedures for developing grounded theory. 3 rd ed. Thousand Oaks, CA: Sage; 2008.
Corbin J, Strauss A. Basics of qualitative research techniques and procedures for developing grounded theory. 4th ed. Thousand Oaks, CA: Sage; 2015.
Lincoln YS, Guba EG. Naturalistic inquiry. California: Sage; 1985.
Lindahl B, Liden E, Lindblad BM. A meta-synthesis describing the relationships between patients, informal caregivers and health professionals in home-care settings. J Clin Nurs. 2011; 20(3-4): 454-63.
Neimeyer RA. Death anxiety handbook. New York, NY: Taylor & Francis Group; 1994.
Moore CC, Williamson JB. The universal fear of death and cultural response. Bryant (Ed.), Handbook of death and dying. Thousand Oaks, CA: Sage; 2003.
Simonds AK. Home mechanical ventilation: An overview. Ann Am Thorac Soc. 2016; 13(11): 2035-44.
Bachner YG, O’Rourke N, Carmel S. Fear of death, mortality communication, and psychological distress among secular and religiously observant family caregivers of terminal cancer patients. Death Stud. 2011; 35(2): 163-87.
Neimeyer RA, Wittkowski J, Moser RP. Psychological research on death attitudes: An overview and evaluation. Death Stud. 2004; 28(4): 309-40.
Peek C, Im-em W, Tangthanaseth R. The state of Thailand’s population 2015: Features of Thai families in the era of low fertility and longevity. Institute of Population and Social Research, Mahidol University; the National Economic and Social Development Board. 2016.
Falkson S, Knecht C, Hellmers C, et al. The perspective of families with a ventilator-dependent child at home: a literature review. J Pediatr Nurs. 2017; 36: 213-24.
González R, Bustinza A, Fernandez SN, et al. Quality of life in home-ventilated children and their families. Eur J Pediatr. 2017; 176(10): 1307-17. doi: 10.1007/s00431-017-2983-z
Marchese S, Coco DL, Coco AL. Outcome and attitudes toward home tracheostomy ventilation of consecutive patients: A 10-year experience. Respir Med. 2008; 102(3): 430-6.
Grant JS, Graven LJ. Problems experienced by informal caregivers of individuals with heart failure: An integrative review. Int J Nurs Stud. 2018; 80: 41-66.
Gordon JR, Pruchno RA, Wilson-Genderson M, Murphy WM, Rose M. Balancing caregiving and work: Role conflict and role strain dynamics. J Fam Issues. 2012; 33(5): 662-89.
Huang T, Peng J. Role adaptation of family caregivers for ventilator-dependent patients: Transition from respiratory care ward to home. J Clin Nurs. 2010; 19: 1686-94. doi: 1610.1111/j.1365-2702.2009.03007.x.
Wang KW, Barnard A. Caregivers’ experiences at home with a ventilator-dependent child. Qual Health Res. 2008; 18(4): 501-8.
Moradian MM, Babikyan D, Banoian D, Hayrapetyan H, Manvelyan H, Avanesian N, et al. Comprehensive analysis of mutations in the MEFV gene reveal that the location and not the substitution type determines symptom severity in FMF. Mol Genet Genomic Med. 2017; 5(6): 742-50.
Evans R, Catapano M, Brooks D, Goldstein R, Avendano M. Family caregiver perspectives on caring for ventilator-assisted individuals at home. Can Respir J. 2012; 19(6): 373-9.
Mah JK, Thannhauser JE, McNeil DA, Dewey D. Being the lifeline:Tthe parent experience of caring for a child with neuromuscular disease on home mechanical ventilation. Neuromuscul Disord. 2008; 18(12): 983-8.
Feeley CA, Turner-Henson A, Christian BJ, et al. Sleep quality, stress, caregiver burden, and quality of life in maternal caregivers of young children with bronchopulmonary dysplasia. J Pediatr Nurs. 2014; 29(1): 29–38.
Gonzalez R, Bustinza A, Fernandez SN, Garcia M, Rodriguez S, Garcia-Teresa MA, et al. Quality of life in home-ventilated children and their families. Eur J Pediatr. 2017; 176(10): 1307-17.
Lindahl B, Lindblad BM. Family members’ experiences of everyday life when a child is dependent on a ventilator: a meta-synthesis study. J Fam Nurs. 2013; 17(2): 241-69.
Taylor SE. Adjustment to threatening events: A theory of cognitive adaptation. Am Psychol. 1983; 38: 1161-71.
Dervin B. Sense-making theory and practice: an overview of user interests in knowledge seeking and use. J Knowl Manag. 1998; 2(2): 36-46.
White M. Deconstruction and therapy. Dulwich Centre Newsletter. 1991; 3: 21-40
Frank AW. The wounded storyteller: Body, illness, and ethics. London: University of Chicago Press;1995.
Russell CS, White MB, White CP. Why me? Why now? Why multiple sclerosis?: Making meaning and perceived quality of life in a Midwestern sample of patients with multiple sclerosis. Fam Syst Health. 2006; 24(1): 65-81.