Development of Palliative Care Holistic Manual Guidelines Based on Islamic Psychospirituality
Article Sidebar
Main Article Content
Abstract
Palliative care is an approach that aims to improve the quality of life for patients and their families facing problems related to life-threatening illnesses. This article aims to study the expert consensus on the necessary elements that should form part of the manual guideline of care for palliative patients from an Islamic perspective. A discussion is outlined on the application of Islamic psychospiritual knowledge in building patient resilience to improve their quality of life. The methodology applied in this research was a combination of qualitative and quantitative approaches, utilising the design and development research (DDR) approach by Richey and Klein. Literature study was used to develop the Islamic Psychospiritual manual for holistic care. The research began with the first phase, known as need analysis, which involved administering a questionnaire to assess the need for this manual among patients and caregivers. The second phase involved manual development through expert discussion, and a set of questionnaires was subsequently administered to experts to test the usability of the manual for the third phase of DDR. The results of the study were analysed using the Fuzzy Delphi Method. The findings demonstrate that all items listed as elements of healthcare needs-namely, physical, psychological, spiritual, emotional, social, and logistical-are accepted and essential for improving patient endurance. The results of this study provide relevant information and guidelines in the manual for health service providers and parties involved in caregiving, aiming to optimise aspects of care for patients. In addition, the results of this study can provide information to non-governmental organisations in the provision of social volunteer services to help patients deal with the difficulties of health challenges. This study highlights the importance of holistic care in enhancing the quality of life for patients. The manual guidelines that have been developed can be used by all categories of caregivers to improve the quality of life. This manual was included with the guidelines highlighted by Islam regarding faith, worship, and akhlaq during times of pain and struggle to achieve well-being in life.
Downloads
Article Details
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
References
Abd Wahab Haris. “Kesejahteraan Sosial dan Pembangunan Komuniti: Pendekatan dan Indikator.” In Seminar Serantau Islam Dan Kesejahteraan Sejagat: 1–16. Brunei: Universiti Islam Sultan Sharif Ali Brunei Darussalam, 2010.
Aldridge, Melissa D., et al. “Education, Implementation, and Policy Barriers to Greater Integration of Palliative Care: A Literature Review.” Palliative Medicine 30(3) (2015): 224–239. https://doi.org/10.1177/0269216315606645.
Anandarajah, Gowri & Ellen Hight. “Spirituality and Medical Practice: Using the HOPE Questions as a Practical Tool for Spiritual Assessment.” American Family Physician 63(1) (2001): 81–88. https://doi.org/10.1016/S1443-8461(01)80044-7.
Arya, Amit, et al. “Pandemic Palliative Care: Beyond Ventilators and Saving Lives.” Cmaj 192(15) (2020): E400–404. https://doi.org/10.1503/cmaj.200465.
Badri, Malik. Contemplation: An Islamic Psychospiritual Study. London: IIIT London Office, 2018.
Bieber, Anja, et al. “Influences on the Access to and Use of Formal Community Care by People with Dementia and Their Informal Caregivers: A Scoping Review.” BMC Health Services Research 19(1) (2019): 1–21. https://doi.org/10.1186/s12913-018-3825-z.
Al-Bukhārī, Abū ʿAlī al-Ḥusayn ibn ʿAbd Allāh ibn al-Ḥasan ibn ʿAlī ibn Sīnā al-Balkhī. Al-Qānūn fī al-Ṭibb (al-Juzʾ al-Awwal). Bayrūt: Dār al-Kutub al-ʿIlmiyyah, 1999.
Al-Bukhārī, Ṣaḥīḥ al-Bukhārī 5199, “Bāb: Li-Zawjika ʿAlayka Ḥaqq,” Kitāb no. 67, Ḥadīth: 133. Sunnah.com, https://sunnah.com/bukhari 67, accessed 21 February 2023.
Che Zarrina Sa’ari & Joni Tamkin Borhan. “Relationship between Sufism and Islamic Psychospirituality.” In Horizons of Spiritual Psychology, eds. Akbar Husin, et al.. New Delhi: Global Vision Publishing House, 2008.
Che Zarrina Sa’ari & Sharifah Basirah Syed Muhsin. “Cadangan Model Psikoterapi Remaja Islam Berasaskan Konsep Tazkiyah al-Nafs.” Jurnal Usuluddin 36 (2012): 49–74.
Che Zarrina Sa’ari, et al. “Analisis Keperluan Pembangunan Manual Psikospiritual Islam dalam Penjagaan Paliatif.” In E-Prosiding Seminar Antarabangsa Islam Dan Sains 2021: 143–154. Nilai: Universiti Sains Islam Malaysia, 2021. http://library1.nida.ac.th/termpaper6/sd/2554/19755.pdf.
Che Zarrina Sa’ari, et al. “The Development of Islamic Psychospiritual Scale for Drug Addicts.” AFKAR: Jurnal Akidah Dan Pemikiran Islam 22(2) (2020): 279–312. https://doi.org/10.22452/afkar.vol22no2.8
Che Zarrina Sa’ari. “Psikospiritual Islam: Konsep Dan Aplikasi.” Journal of Syarie Counseling 1(1) (2019): 43–51.
Che Zarrina Saari, et al. “Spiritual Growth Aspects among Caregivers of Children with Cancer.” AFKAR: Jurnal Akidah Dan Pemikiran Islam 24(1) (2022): 311–342. https://doi.org/10.22452/afkar.vol24no1.9
Chen, Jingyi, et al. “The Effects of Spiritual Care on Quality of Life and Spiritual Well-Being among Patients with Terminal Illness: A Systematic Review.” Palliative Medicine (2018): 1168. https://doi.org/10.1177/0269216318772267.
Chu, Hui Chun & Gwo Jen Hwang. “A Delphi-Based Approach to Developing Expert Systems with the Cooperation of Multiple Experts.” Expert Systems with Applications 34(4) (2008): 2826–2840. https://doi.org/10.1016/j.eswa.2007.05.034.
Devik, S. A., I. Enmarker & O. Hellzen. “Nurses’ Experiences of Compassion When Giving Palliative Care at Home.” Nursing Ethics 27(1) (2020): 194–205. https://doi.org/10.1177/0969733019839218.
Dhar, N., S. K. Chaturvedi & , D. Nandan. “Spiritual Health, the Fourth Dimension: A Public Health Perspective.” WHO South-East Asia Journal of Public Health 2(1) (2013): 3. https://doi.org/10.4103/2224-3151.115826.
ElMokhallalati, Yousuf, et al.. “Identification of Patients with Potential Palliative Care Needs: A Systematic Review of Screening Tools in Primary Care.” Palliative Medicine 34(8) (2020): 989–1005. https://doi.org/10.1177/0269216320929552.
Entry: “Society”, APA Dictionary of Psychology, American Psychological Association, 2024, https://dictionary.apa.org/society.
Fatimah Ibrahim. Solat: Kebaikan dari Perspektif Sains. Kuala Lumpur: Penerbit Universiti Malaya, 2008.
Galek, K., Kevin J. Flannelly, Adam Vane & Rose M. Galek. “Assessing a Patient’s Spiritual Needs: A Comprehensive Instrument.” Holistic Nursing Practice 19(2) (2005): 62–69.
Al-Ghazālī, Abū Ḥāmid Muḥammad ibn Muḥammad al-Ṭūsī. Iḥyāʾ ʿUlūm al-Dīn. Jiddah: Dār al-Minhāj, 2011.
Ghobari, Bagher & Ali Akbar Haddadi Koohsar. “Reliance on God as a Core Construct of Islamic Psychology.” Procedia - Social and Behavioral Sciences 30 (2011): 216–220. https://doi.org/10.1016/j.sbspro.2011.10.043.
Harris, J. Irene, et al. “Spiritual/Religious Distress is Associated with Pain Catastrophizing and Interference in Veterans with Chronic Pain.” Pain Medicine (United States) 19(4) (2018): 757–763. https://doi.org/10.1093/pm/pnx225.
Hasimah Chik, Che Zarrina Sa’ari & Loh Ee Chin. “Peranan Spiritual dalam Rawatan Paliatif.” AFKAR: Jurnal Akidah & Pemikiran Islam 19(2) (2017): 107–142.
Hasimah Chik. “Punca Utama Keresahan Spiritual dalam Penjagaan Paliatif Menurut Perspektif Psikologi Agama.” Unpublished Master of Islamic Studies' Dissertation. Kuala Lumpur: University of Malaya, 2018.
Ḥawwāʾ, Saʿīd. Al-Mustakhlaṣ fī Tazkiyah al-Anfus. Riyāḍ: Dār al-Salām, 1988.
Hui, David, et al. “The Frequency and Correlates of Spiritual Distress among Patients with Advanced Cancer Admitted to an Acute Palliative Care Unit.” The American Journal of Hospice & Palliative Care 28(4) (2011): 264–270. https://doi.org/10.1177/1049909110385917.
Hui, David, et al.. “The Frequency and Correlates of Spiritual Distress among Patients with Advanced Cancer Admitted to an Acute Palliative Care Unit.” American Journal of Hospice and Palliative Medicine 28(4) (2011): 264–270. https://doi.org/10.1177/1049909110385917.
İmamoğlu, Osman. “Benefits of Prayer as a Physical Activity.” International Journal of Science Culture and Sport 4(17) (2016): 306–318. https://doi.org/10.14486/intjscs559.
Jenkins, Muhammad al-Mahdi & Abdul Aziz Azimullah. Positive Islamic Psychology. Selangor: Excellent Ummah Development Association, 2016.
Jim, Heather S. L., et al. “Religion, Spirituality, and Physical Health in Cancer Patients: A Meta-Analysis.” Cancer 121(21) (2015): 3760–3768. https://doi.org/10.1002/cncr.29353.
Khan, Faiz. “An Islamic Appraisal of Minding the Gap: Psycho-Spiritual Dynamics in the Doctor-Patient Relationship.” Journal of Religious Ethics 36(1) (2008): 77–96. https://doi.org/10.1111/j.1467-9795.2008.00337.x.
Kluger, Benzi M., et al. “Defining Palliative Care Needs in Parkinson’s Disease.” Movement Disorders Clinical Practice 6(2) (2019): 125–131. https://doi.org/10.1002/mdc3.12702.
Lepherd, Laurence. “Spirituality: Everyone Has It, but What Is It?” International Journal of Nursing Practice 21(5) (2015): 566–574. https://doi.org/10.1111/ijn.12285.
Lim, Richard B. L. & Diana Katiman. Handbook of Palliative Medicine in Malaysia, ed. Richard B. L. Lim & Diana Katiman. Selangor: Malaysian Hospice Council, 2015.
Lin, Hung-Ru & Susan M. Bauer-Wu. “Psycho-Spiritual Well-Being in Patients with Advanced Cancer: An Integrative Review of the Literature.” Journal of Advanced Nursing 44(1) (2003): 69–80. https://doi.org/10.1046/j.1365-2648.2003.02768.x.
Lowe, Sonya S., Sharon M. Watanabe, Vickie E. Baracos & Kerry S. Courneya. “Physical Activity Interests and Preferences in Palliative Cancer Patients.” Supportive Care in Cancer 18(11) (2010): 1469–1475. https://doi.org/10.1007/s00520-009-0770-8.
M. M. S. Zahari & A. B. Shafie. “Faham al-Sa‘adah (Kebahagian) menurut Islam: Analisis Matan Akidah Terpilih: The Concept of al-Sa‘adah (Happiness) in Islam: An Analysis on Selected Theological Texts.” Jurnal Usuluddin 52(2) (2024): 35–62. https://doi.org/10.22452/usuluddin.vol52no2.2
McCauley, R., R. McQuillan, K. Ryan & G. Foley. “Mutual Support between Patients and Family Caregivers in Palliative Care: A Systematic Review and Narrative Synthesis.” Palliative Medicine 35(5) (2021): 875-885. https://doi.org/10.1177/0269216321999962.
McNamara, B., A. Same, L. Rosenwax & B. Kelly. “Palliative Care for People with Schizophrenia: A Qualitative Study of an under-Serviced Group in Need.” BMC Palliative Care 17(1) (2018): 1-11. https://doi.org/10.1186/s12904-018-0309-1.
Michael, N., et al. “Introducing a Model Incorporating Early Integration of Specialist Palliative Care: A Qualitative Research Study of Staff’s Perspectives.” Palliative Medicine 30(3) (2016): 303–312. https://doi.org/10.1177/0269216315598069.
Mohd Syukri Zainal Abidin, Che Zarrina Sa’ari & Syed Mohammad Hilmi Syed Abdul Rahman. “Pendekatan Psikoterapi Islam Terhadap Kanak-Kanak Muslim Autistik Pendekatan Psikoterapi Islam Terhadap Kanak-Kanak Muslim Autistik.” Akademika 88(1) (2018): 65–73.
Mohd Zarif Muhammad Mustaqim, Abd Hamid Abd Murad & Arif Fahmi Md Yusof. “The Use of Forbidden Materials in Medicinal Products: An Islamic Perspective.” Middle-East Journal of Scientific Research 13 (2013): 5–10. https://doi.org/10.5829/idosi.mejsr.2013.16.s.10022.
Mohd. Suhardi Mat Jusoh, Shaik Abdullah Hassan Mydin & Jasni Sulong. “The Implementation of Tarbiyyah Program Based on the Hostel Student Development Module (MPMA): A Study at the Religious Secondary Schools (SMKA) in Penang.” International Journal of Academic Research in Business and Social Sciences 8, no. 8 (2018): 375–385. https://doi.org/10.6007/ijarbss/v8-i8/4475.
Mueller, Paul S., David J. Plevak & Teresa A. Rummans. “Religious Involvement, Spirituality, and Medicine: Implications for Clinical Practice.” Mayo Clin Proc 76 (2001): 1225–1235. https://doi.org/10.4065/76.12.1225.
Muhamad Zulfadli Abdul Rahman et al. “Development of Spiritual Poverty Measurements of an Urban Population Based on the Concept of Purifying the Self (Tazkiyah al-Nafs).” Social Indicators Research 169(3) (2023): 943–972. https://doi.org/10.1007/s11205-023-03188-5.
Muhammad Rif’aat Razman & Salasiah Hanin Hamjah. “Dakwah dalam Dimensi Kerohanian Penjagaan Paliatif menurut Pendekatan Badi’ al-Zaman Sa’id al-Nursi.” Jurnal Al-Hikmah 7(1) (2015): 33–47.
Muslim, Abu al-Husain Muslim Ibn al-Hajjaj. English Translation of Sahih Muslim. Trans. Nasiruddin al-Khattab & Abu Khaliyl, ed. Hafiz Abu Tahir Zubair `Ali Za’i. Saudi Arabia: Darussalam International Publication, 1997.
Mustafa Kamal Mokhtar Ahmad Razak & Wan Sharazad Wan Sulaiman. “Terapi Spiritual Islami Suatu Model Penanggulangan Gangguan Depresi.” Jurnal Dakwah Tabligh 14(1) (2013): 141–151.
Nor Azah Abdul Aziz & Che Zarrina Saari. “Menangani Permasalahan Laman Web Pornografi: Antara Perisian Penapis, Penguatkuasaan Undang-Undang dan Amalan Spritual.” Journal of Islamic and Arabic Education 3 (1) (2011): 29-46.
Norhafizah Musa & Che Zarrina Sa‘ari. “Pendekatan Psikoterapi Islam Dalam Menguruskan Tekanan Pesakit Kronik.” Journal of Usuluddin 47(1) (2019): 1–34. https://doi.org/10.22452/usuluddin.vol47no1.1.
Othman Ab Rahman. “Pendekatan Rakan Sebaya Sebagai Media Berkesan dalam Pengurusan Warga Emas Muslim: Satu Kajian Kes di Persatuan Warga Emas di Lembah Klang.” Journal of Fatwa Management and Research (Special Issue) (2018): 660–675.
Ramlan Mustapha & Ghazali Darusalam. Aplikasi Kaedah Fuzzy Delphi Dalam Penyelidikan Sains Sosial. Kuala Lumpur: Penerbit Universiti Malaya, 2018.
Rassool, G. Hussein. “The Crescent and Islam: Healing, Nursing and the Spiritual Dimension. Some Considerations towards an Understanding of the Islamic Perspectives on Caring.” Journal of Advanced Nursing 32(6) (2000): 1476–1484. https://doi.org/10.1046/j.1365-2648.2000.01614.x.
Ronaldson, S., L. Hayes, C. Aggar, J. Green & M. Carey. “Spirituality and Spiritual Caring: Nurses’ Perspectives and Practice in Palliative and Acute Care Environments.” Journal of Clinical Nursing 21(15–16) (2012): 2126–2135. https://doi.org/10.1111/j.1365-2702.2012.04180.x.
Rothman, Abdallah & Adrian Coyle. “Toward a Framework for Islamic Psychology and Psychotherapy: An Islamic Model of the Soul.” Journal of Religion and Health 57(5) (2018): 1731–1744. https://doi.org/10.1007/s10943-018-0651-x.
Roze des Ordons, A. L., et al. “Strategies for Effective Goals of Care Discussions and Decision-Making: Perspectives from a Multi-Centre Survey of Canadian Hospital-Based Healthcare Providers.” BMC Palliative Care 14 (2015): 38. https://doi.org/10.1186/s12904-015-0035-x.
Saged, Ali Ali Gobaili, et al. “The Effect of an Islamic-Based Intervention on Depression and Anxiety in Malaysia.” Journal of Religion and Health 61(1) (2022): 79–92. https://doi.org/10.1007/s10943-021-01484-3.
Sarris, J., A. O’Neil, Schweitzer I. Coulson & M. Berk “Lifestyle Medicine for Depression.” BMC Psychiatry 14(107) (2014): 1-13. https://doi.org/10.1186/1471-244X-14-107.
Sawatzky, R., et al. “Conceptual Foundations of a Palliative Approach: A Knowledge Synthesis.” BMC Palliative Care 15(1) (2016): 5. https://doi.org/10.1186/s12904-016-0076-9.
Al-Shahri, Mohammad Zafir & Al-Khenaizan, Abdullah. “Palliative Care for Muslim Patients.” The Journal of Supportive Oncology 3(6) (2005): 432 – 436.
Sharifah Basirah Syed Mohsin, Che Zarrina Sa’ari, Hasimah Chik & Sheriza Izwa Zainuddin. “Muḥāsabah al-Nafs (Self-Reflection) dalam Menangani Keresahan Spiritual (Spiritual Distress).” Jurnal Usuluddin 50(1) (2022): 43–72. https://doi.org/10.22452/usuluddin.vol50no1.3.
Sharifah Basirah Syed Muhsin & Che Zarrina Sa’ari. “Penyakit Gelisah (Anxiety / Al-Halu’) dalam Masyarakat Islam dan Penyelesaiannya Menurut Psiko-Spiritual Islam.” Jurnal Usuluddin 14 (2001): 1–22.
Sharifah Basirah Syed Muhsin & Che Zarrina Sa’ari. Kaedah Psikoterapi Islam Berasaskan Konsep Maqamat Abu Talib al-Makki. Kuala Lumpur: Dewan Bahasa dan Pustaka, 2015.
Silbermann, M., et al. “Palliative Cancer Care in Middle Eastern Countries: Accomplishments and Challenges.” Annals of Oncology 23 (2012): 15–28. https://doi.org/10.1093/annonc/mds084.
Sulmasy, Daniel P. “A Biopsychosocial-Spiritual Model for the Care of Patients at the End of Life.” Gerontologist 42, no. SPEC. ISS. 3 (2002): 24–33. https://doi.org/10.1093/geront/42.suppl_3.24.
ʿUthmān Najātī. Al-Ḥadīth al-Nabawī wa ʿIlm al-Nafs. al-Qāhirah: Dār al-Shurūq, 2005.
Velosa, T., S. Caldeira & M. L. Capelas. “Depression and Spiritual Distress in Adult Palliative Patients: A Cross-Sectional Study.” Religions 8(8) (2017): 1-18. https://doi.org/10.3390/rel8080156.
Villagomeza, Liwliwa R. “Spiritual Distress in Adult Cancer Patients: Toward Conceptual Clarity.” Holistic Nursing Practice (2005): 285–294.
Virdun, C., T. Luckett, K. Lorenz, P. Davidson & J. Phillips. “Preferences of Patients with Palliative Care Needs and Their Families for Engagement with Service Improvement Work within the Hospital Setting: A Qualitative Study.” Palliative Medicine (2022): 1129-1139. https://doi.org/10.1177/02692163221100108.
Waller, A., et al. “Assisting the Bereaved: A Systematic Review of the Evidence for Grief Counselling.” Palliative Medicine 30(2) (2016): 132–148. https://doi.org/10.1177/0269216315588728.
Wan Hilmi Wan Abdullah & Hidayah Zaki. “Gejala Kemurungan: Kaedah Rawatan Melalui Pengubatan al-Tibb al-Nabawiy.” Jurnal Islam dan Masyarakat Kontemporari 21(3) (2020): 215–234. https://doi.org/10.37231/jimk.2020.21.3.509.
Watson, M., R. Campbell, N. Vallath, S. Ward & J. Wells. Oxford Handbook of Palliative Care Third Edition. United Kingdom: Oxford University Press, 2019. https://doi.org/10.1111/j.1365-2354.2006.00696.x.
Yalom, Irvin D. Staring at The Sun: Overcoming the Dread of Death. London: Hachette Digital, 2008. https://books.google.com.my/books?id=kju-nt8dL6kC&pg=PP9&dq=staring+at+the+sun&hl=ms&newbks=1&newbks_redir=0&sa=X&ved=2ahUKEwj7sPvmk6SLAxWdSWwGHXRKDjUQ6AF6BAgLEAM#v=snippet&q=death anxiety&f=false.
Zahida Ilyas, Sarah Shahed & Safdar Hussain. “An Impact of Perceived Social Support on Old Age Well-Being Mediated by Spirituality, Self-Esteem and Ego Integrity.” Journal of Religion and Health 59 (2020): 2715–2732. https://doi.org/10.1007/s10943-019-00969-6.