Information Seeking Experiences of Family Caregivers of Patients with Persistent Vegetative State: A Qualitative Study
Abstract
Background: Providing care for patients in Persistent Vegetative State (PVS) by family caregivers without enough training and knowledge may be problematic both for the patients and for the caregivers. Therefore, the present study tries to explain the experiences of family caregivers of patients with PVS of seeking information needed to provide adequate care.
Materials and Methods: Twenty two participants, including 17 family caregivers and 5 professional caregivers were enrolled by purposive sampling into this qualitative content analysis study, carried out between 2013 and 2015. Unstructured interviews and field notes were used to gather the data. Data collection was stopped when data saturation was achieved. Data analysis was performed by content analysis based on Graneheim and Lundman’s approach.
Results: As a result of the analysis of the collected data a main theme emerged labeled as “Seeking constructive education” with three categories including “Neglected requisite education,” “Greedy search for useful education” and “Dynamic independence in care.”
Conclusions: In this study, information seeking by family caregivers of patients with PVS was constructive. Family caregivers insistently sought needed information from various sources. Ultimately, they found these insistent efforts beneficial and fruitful, because their efforts made them independent in providing care for their patients.
Keywords
Full Text:
PDFReferences
Zylberman R, Carolei A, Sacco S, Mallia PFP. An innovative model of a home‑like environment for people in vegetative and minimally conscious states. Neurohospitalist 2016;6:14‑9.
Goudarzi F, Abedi H, Zarea K, Ahmadi F, Hosseinigolafshani SZ. The Resilient care of patients with vegetative state at home: A grounded theory. J Caring Sci 2018;7:163‑75.
Giovannetti AM, Pagani M, Sattin D, Covelli V, Raggi A, Strazzer S, et al. Children in vegetative state and minimally conscious state: Patients’ condition and caregivers’ burden. ScientificWorldJournal 2012;2012:232149. doi: 10.1100/2012/232149.
Kitzinger K, Kitzinger C. The ‘window of opportunity’ for death after severe brain injury: Family experiences. Sociol Health Illn 2013;35:1095‑112.
Span‑Sluyter CAMFH, Lavrijsen JCM, van Leeuwen E, Koopmans RTCM. Moral dilemmas and conflicts concerning patients in a vegetative state/unresponsive wakefulness syndrome: Shared or non‑shared decision making? A qualitative study of the professional perspective in two moral case deliberations. BMC Med Ethics 2018;19:10. doi: 10.1186/s12910‑018‑0247‑8.
Clarke JL, Bourn S, Skoufalos A, Beck EH, Castillo DJ. An innovative approach to health care delivery for patients with chronic conditions. Popul Health Manag 2017;20:23‑30.
Østbye T, Yarnall KS, Krause KM, Pollak KI, Gradison M, Michener JL. Is there time for management of patients with chronic diseases in primary care? Ann Fam Med 2005;3:209‑14.
Donis J, Kräftner B. The prevalence of patients in a vegetative state and minimally conscious state in nursing homes in Austria. Brain Inj 2011;25:1101‑7.
Golics CJ, Basra MKA, Finlay AY, Salek S. The impact of disease on family members: A critical aspect of medical care. JRSM 2013;106:399‑407.
Wang SY, Zhao Y, Zang XY. Continuing care for older patients during the transitional period. Chin Nurs Res 2014;1:5‑13.
Lin SC, Cheng SJ, Shih SC, Chang WL, Chu CH, Tjung JJ. The past, present, and future of discharge planning in taiwan. Int J Gerontol 2013;7:65‑9.
McMartin K. Discharge planning in chronic conditions: An evidence‑based analysis. Ont Health Technol Assess Ser 2013;13:1‑72.
Khankeh H, Rahgozar M, Ranjbar M. The effects of nursing discharge plan (post‑discharge education and follow‑up) on self‑care ability in patients with chronic schizophrenia hospitalized in Razi psychiatric Center. Iran J Nurs Midwifery Res 2011;16:162‑8.
Adams RJ. Improving health outcomes with better patient understanding and education. Risk Manag Healthc Policy 2010;3:61‑72.
Aghakhani N, Nia HS, Ranjbar H, Rahbar N, Beheshti Z. Nurses’ attitude to patient education barriers in educational hospitals of Urmia University of Medical Sciences. Iran J Nurs Midwifery Res 2012;17:12‑5.
Qadeer A, Khalid U, Amin M, Murtaza S, Muhammad F. Khaliq MF, Shoaib M. Caregiver’s burden of the patients with traumatic brain injury. Cureus J 2017;9:e1590. doi: 10.7759/ cureus. 1590.
Verhaeghe ST, Van Zuuren FJ, Defloor T, Duijnstee MS, Grypdonck MH. How does information influence hope in family members of traumatic coma patients in intensive care unit?. J Clin Nurs 2007;16:1488‑97.
Angelo JK, Egan R, Reid K. Essential knowledge for family caregivers: A qualitative study. Int J Palliat Nurs 2013;19:383‑8.
Hirakawa Y, Kuzuya M, Enoki H, Uemura K. Information needs and sources of family caregivers of home elderly patients. Arch Gerontol Geriatr 2011;52:202‑5.
Gholami M, Fallahi Khoshknab M, Khankeh HR, Ahmadi F, Maddah SS, Mousavi Arfaa N. The motivations of Iranian patients with cardiovascular disease to seek health information: A qualitative study. Iran Red Crescent Med J 2016;18:e26039. doi: 10.5812/ircmj.26039.
Lalazaryan A, ZareFarashbandi F. A review of models and theories of health information seeking behavior. Int J Health Syst. Disaster Manag 2014;2:193‑203.
Kuske S, Schiereck T, Grobosch S, Paduch A, Droste S, Halbach S, et al. Diabetes‑related information seeking behaviour: A systematic review. Syst Rev 2017;6:212. doi: 10.1186/s13643‑017‑0602‑8.
Bangerter LR, Griffin J, Harden K, Rutten LJ. Health information‑seeking behaviors of family caregivers: Analysis of the health information national trends survey. JMIR Aging 2019;2:e11237. doi: 10.2196/11237.
Mohajan H. Qualitative research methodology in social sciences and related subjects. J Econ Dev Environ People 2018;7:23‑48.
Streubert HJ, Carpenter DR. Qualitative Research in Nursing (Advancing the Humanistic Imperative). Philadelphia: Wolters Kluwer (Lippincott Williams & Wilkins); 2011.
Cipolletta S, Pasi M, Avesan R. Vita tua, mors mea: The experience of family caregivers of patients in a vegetative state. J Health Psychol 2016;21:1197‑206.
Noohi E, Peyrovi H, Imani Goghary Z, Kazemi M. Perception of social support among family caregivers of vegetative patients: A qualitative study. Conscious Cogn 2016;41:150‑8.
Kuehlmeyer K, Borasio GD, Jox RJ. How family caregivers’ medical and moral assumptions influence decision making for patients in the vegetative state: A qualitative interview study. J Med Ethics 2012;38:332‑7.
Yousefzadeh‑Chabok SH, Emamhadi M, Alijani B, Cheragh Sepehr M, Khodadadi‑Hassankiadeh N. Psychopathological symptoms in caregivers of patients with vegetative state. Caspian J Neurol Sci 2018;4:57‑63.
Nowell SL, Norris MJ, White ED, Moules JN. Thematic analysis: Striving to meet the trustworthiness criteria. IJQM 2017;16:1‑13. doi: 10.1177/1609406917733847.
Hosseiny RS, Bastani F, Sayahi S, Momen‑Abadi H, Alijanpoor Aghamaleki M. The effect of educational‑ counseling program on general health of women as caregivers of patient, with Alzheimerdisease. J Shahrekord Univ Med Sci 2011;13:83‑92.
Abdoli S, Ashktorab T, Ahmadi F, Parvizy S, Dunning T. Religion, faith and the empowerment process: Stories of Iranian people with diabetes. Int J Nurs Pract 2011;17:289‑98.
Pashaee F, Taleghani F, Tavakol K, Rezae A. Family experiences from caregivering of patient with coronary artery bypass graft surgery: A qualitative study. IJNR 2010;5:61‑71.
Wong P, Liamputtong P, Koch S, Rawson H. Families’ experiences of their interactionswith staff in an Australian intensive careunit (ICU): A qualitative study. Intensive Crit Care Nurs 2015;31:51‑63.
Fedorka PD, Heasley SW, Patton CM. Perceptions of nurses caring for pregnant women in vegetative states. MCN Am J Matern Child Nurs 2014;39:80‑5.
Bond AE, Draeger CR, Mandleco B, Donnelly M. Needs of family members of patients with severe traumatic brain injury, implications for evidence‑based practice. Crit Care Nurse 2003;23:63‑72.
Evans R, Catapano MA, Brooks D, Goldstein RS, Avendano M. Family caregiver perspectives on caring for ventilator‑assisted individuals at home. Can Respir J 2012;19:373‑9.
Shabani F, Mohammadi Shahboulaghi F, Hosseini M, Dehghan Nayeri N, Maleki M, Naderi N. Challenges in heart failure patients discharge plan: A qualitative study. J Res Med Dent Sci 2018;6:1‑8.
Lin CJ, Cheng SJ, Shih SC, Chu CH, Tjung JJ. Discharge Planning. Int J Gerontol 2012;6:237‑40.
Verhaeghe S, Defloor T, Van Zuuren F, Duijnstee M, Grypdonck M. The needs and experiences of family members of adult patients in an intensive care unit: A review of the literature. J Clin Nurs 2005;14:501‑9.
Korkmaz S, Iyigun E, Tastan S. An evaluation of the influence of web‑based patient education on the anxiety and life quality of patients who have undergone mammaplasty: A randomized controlled study. J Cancer Educ 2019. doi: 10.1007/ s13187‑019‑01542‑1.
Ferré‑Grau C, Casado MS, Cid‑Buera D, LLeixà‑Fortuño M, Monteso‑Curto P, Berenguer‑Poblet M. Caring for family caregivers: An analysis of a family‑centered intervention. Rev Esc Enferm USP 2014;48:87‑94.
Rivera PA, Elliott TR, Berry JW, Grant JS. Problem‑solving training for family caregivers of persons with traumatic brain injuries: A randomized controlled trial. Arch Phys Med Rehabil 2008;89:931‑41.
Refbacks
- There are currently no refbacks.