Environmental Barriers Faced by Caregivers Caring for Adults with Terminal Illnesses
DOI:
https://doi.org/10.21834/e-bpj.v1i3.359Keywords:
Environmental Barriers, Terminal Illness, Adult, CaregiverAbstract
Caring for a patient at the end of their life can be highly demanding and becomes a challenge for caregivers. The participants were recruited using a convenience sampling of ten caregivers who provided the most care to an adult with a terminal illness. All interviews were recorded, transcribed verbatim and analyzed using the six steps of Interpretative Phenomenological Analysis (IPA). The findings showed that the environmental barriers caregivers had recognized were transportation, insufficient material resources, and remote home facilities. By acknowledging these barriers, healthcare professionals can design and implement therapeutic environments that are clinically relevant toward those most in need.
References
Australian Bureau of Statistics (1999). Disability, ageing and carers: summary of findings.
Biggerstaff, D. L. & Thompson, A. R. (2008). Interpretative Phenomenological Analysis (Ipa): A Qualitative Methodology Of Choice In Healthcare Research. Qualitative Research in Psychology, 5, 173 - 183 DOI: https://doi.org/10.1080/14780880802314304
Bleich, S. N., Jarlenski, M. P., Bell, C. N., & LaVeist, T. A. (2012). Health inequalities: Trends, progress, and policy. Annual Review of Public Health, 33, 7-40. DOI: https://doi.org/10.1146/annurev-publhealth-031811-124658
Cubbin, C., LeClere, F. B., & Smith, G. S. (2000). Socioeconomic status and the occurrence of fatal and nonfatal injury in the United States. American Journal of Public Health, 90(1), 70-77. DOI: https://doi.org/10.2105/AJPH.90.1.70
Drummond, M., Shemilt, I., Vale, L., & on behalf of the Campbell and Cochrane Economic Methods Group (2013). Should The Cochrane Collaboration Be Producing Reviews of Efficiency? Cochrane Database of Systematic Reviews, 10, ED000071. DOI: https://doi.org/10.1002/14651858.ED000071
Gardiner, C., Brereton, L., Frey, R., Wilkinson-Meyers, L., & Gott, M. (2014). Exploring the Financial Impact Of Caring For Family Members Receiving Palliative And End-Of-Life Care: A Systematic Review Of The Literature. Palliative Medicine, 28(5), 375-390. DOI: https://doi.org/10.1177/0269216313510588
Gonorazky, S. E. (2011). The Unresolved Issue of the “Terminal Disease” Concept. Health Management-Different Approaches and Solutions, 22, 415 - 432.
Iwama, M. K., Thomson, N. A., & Macdonald, R. M. (2009). The Kawa Model: the power of culturally responsive occupational therapy. Disability and Rehabilitation, 31, 1125-1135. DOI: https://doi.org/10.1080/09638280902773711
Janette, S. Dill, M. A., & and Cagle, J. (2010). Caregiving in a Patient's Place of Residence: Turnover of Direct Care Workers in Home Care and Hospice Agencies. Journal of Aging and Health, 22(6), 713-733. DOI: https://doi.org/10.1177/0898264310373390
LaVeist, T., Pollack, K., Thorpe, R., Jr., Fesahazion, R., and Gaskin, D. (2011). Place, not race: Disparities dissipate in southwest Baltimore when blacks and whites live under similar conditions. Health Affairs, 30(10), 1880-1887. DOI: https://doi.org/10.1377/hlthaff.2011.0640
Magnusson, A., Lützén, K., & Severinsson, E. (2002). The influence of clinical supervision on ethical issues in home care of people with mental illness in Sweden. Journal of Nursing Management, 10, 37-45. DOI: https://doi.org/10.1046/j.0966-0429.2001.00292.x
Matthews, B. A., Baker, F. & Spillers, R. L. (2004). Oncology professionals and patient requests for cancer support services. Supportive Care in Cancer, 12(10), 731-738. DOI: https://doi.org/10.1007/s00520-004-0647-9
Malakoti, K., Nouri, R., Nasr, M. & Asna, A., (2004). Effect of continuous care team activity in patients with chronic mental. ResearchQuarterly, 88, 5-13.
Marissa, M., Vento, M. A., Nakagawa, K.,& Linton, K. F. (2014). A Qualitative Study of Transportation Challenges Among Intracerebral Hemorrhage Survivors and Their Caregivers. Hawai‘I Journal of Medicine & Public Health, 73(11).
Michalik, J., & Valenta, M. (2012). Family caring for a family member with the severe disability as a specific group of clients of helping professions. Procedia – Social and Behavioral Sciences, 69, 467-476. DOI: https://doi.org/10.1016/j.sbspro.2012.11.435
Petkova, M., Nikolov, V., Galabova, M., & Petrova, B. (2010). Psychological assessment of cancer patients with chronic pain. Procedia - Social and Behavioral Sciences, 5, 421-425. DOI: https://doi.org/10.1016/j.sbspro.2010.07.116
Pinquart, M., & Sörensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta- analysis. The Gerontologist, 45(1), 90-106. DOI: https://doi.org/10.1093/geront/45.1.90
Ryn, M. V., Sanders, S., Kahn, K., Houtven, C. V….Rowland, J. et al. (2011). Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncology, 20, 44-52. DOI: https://doi.org/10.1002/pon.1703
Serena, N., Chu, M., Wu, A., & Cheung, P. (2005). Effectiveness of Home-based Occupational Therapy for Early Discharged Patients with Stroke. Hong Kong Journal of Occupational Therapy, 15, 27-36. DOI: https://doi.org/10.1016/S1569-1861(09)70031-2
Sherman, D. W. (1998). Reciprocal suffering: the need to improve family caregivers' quality of life through palliative care. Journal of PalliativeMedicine, 1(4), 357-366. DOI: https://doi.org/10.1089/jpm.1998.1.357
Smith, J. A. (2004). Reflecting On The Development Of Interpretative Phenomenological Analysis And Its Contribution To Qualitative Research In Psychology. Qualitative Research in Psychology, 1, 39 - 54.
Smith, J. A., Flowers, P., & Larkin, M. (2009).Interpretative phenomenological analysis: Theory, method and research. London: Sage, (Chapter5 & 6).
Socialstyrelsen (2008). Health: Progress Report 2007. National Board of Health and Welfare, Stockholm. ISBN: 978-91-85999-10-1.
Tehrekhani, M., Sasani, L., & Naji, S. (2015). Shared Experiences of the Families of Female Patients Suffering from the Manic Phase of Bi-Polar Disorder. Procedia- Social and Behavioral Sciences, vol. 185, pp. 333-338. DOI: https://doi.org/10.1016/j.sbspro.2015.03.448
Tse Man Wah, D. (2007). Care for the Family in Palliative Care. Palliative Medicine Doctors' Meeting. Hong Kong Society of PalliativeMedicine Newsletter, 1&2, 26-30.
Stone, R. I. (2001). Research on frontline workers in long-term care. Generations, 25, 49-57.
WHO Centre for Health Development Ageing and Health Technical Report (2004). A Glossary of Terms For Community Health Care And Services For Older Persons World Health Organization .Vol. 5. Japan.
Wilhelmsson, A.B (2011). Relatives' experiences of care and caregivers in a psychiatric caring context. Procedia-Social and Behavioral Sciences, vol. 30, pp. 2296-2304. DOI: https://doi.org/10.1016/j.sbspro.2011.10.448
Woolf, S. H. & Aron, L. (2013). U.S. Health in International Perspective: Shorter Lives, Poorer Health.The International Academic Press:Washington D.C.
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Copyright (c) 2016 Husna Ahmad Ainuddin, Siti Norehan Ab Ghani, Akehsan Dahlan, Mohd Suleiman Murad
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