Caregivers’ Environmental Barriers in Caregiving in Adults with a Terminal Illness

Authors

  • Husna Ahmad Ainuddin Department of Occupational Therapy, Faculty of Health Sciences, UiTM Selangor, Puncak Alam, 42300 Malaysia
  • Siti Norehan Ab Ghani Department of Occupational Therapy, Faculty of Health Sciences, UiTM Selangor, Puncak Alam, 42300 Malaysia
  • Akehsan Dahlan Department of Occupational Therapy, Faculty of Health Sciences, UiTM Selangor, Puncak Alam, 42300 Malaysia
  • Mohd Suleiman Department of Occupational Therapy, Faculty of Health Sciences, UiTM Selangor, Puncak Alam, 42300 Malaysia

DOI:

https://doi.org/10.21834/ajbes.v2i8.51

Keywords:

Environmental barriers, terminal illness, adult, caregiver

Abstract

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.

Keywords: Environmental barriers; terminal illness; adult; caregiver

eISSN 2398-4295 © 2017 The Authors. Published for AMER ABRA by e-International Publishing House, Ltd., UK. This is an open-access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer–review under responsibility of AMER (Association of Malaysian Environment-Behaviour Researchers), ABRA (Association of Behavioural Researchers on Asians) and cE-Bs (Centre for Environment-Behaviour Studies), Faculty of Architecture, Planning & Surveying, Universiti Teknologi MARA, Malaysia.

References

Australian Bureau of Statistics (1999). Disability, ageing and carers: summary of findings.

Brazil, K., Bainbridge, D. and Rodriguez, C. 2010. The Stress Process in Palliative Cancer Care: A Qualitative

Study on Informal Caregiving and its Implication for the Delivery of Care. American Journal of Hospice and

Palliative Medicine 27(2): 111-116.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

Malakoti, K., Nouri, R., Nasr, M. & Asna, A., (2004). Effect of continuous care team activity in patients with chronic mental. Research Quarterly, 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.

Much, T. 2006. Elder Care: A Responsibility That Requires a Collaborative Effort. WorldatWork Journal 60: 60-69.

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.

Pinquart, M., & Sörensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. The Gerontolo¬gist, 45(1), 90-106.

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.

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.

Sherman, D. W. (1998). Reciprocal suffering: the need to improve family caregivers’ quality of life through palliative

care. Journal of Palliative Medicine, 1(4), 357–366.

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, (Chapter 5 & 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.

Tse Man Wah, D. (2007). Care for the Family in Palliative Care. Palliative Medicine Doctors’ Meeting. Hong Kong

Society of Palliative Medicine 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.

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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Published

2017-10-23

How to Cite

Ahmad Ainuddin, H., Ab Ghani, S. N., Dahlan, A., & Suleiman, M. (2017). Caregivers’ Environmental Barriers in Caregiving in Adults with a Terminal Illness. Asian Journal of Behavioural Studies, 2(8), 23–32. https://doi.org/10.21834/ajbes.v2i8.51

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