An Exploration of Family Caregiver Experiences of Burden and Coping While Caring for People with Mental Disorders in Saudi Arabia—A Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Ethical Considerations
2.3. Study Setting and Participant Recruitment
2.4. Data Collection Procedure
2.5. Data Analysis
3. Results
3.1. Participant Characteristics
3.2. Theme 1: Type of Care Provided
3.3. Theme 2: Challenges Encountered
3.3.1. Subtheme i: Dealing with Signs and Symptoms of the Disorder
3.3.2. Subtheme ii: Emotional Burden
3.3.3. Subtheme iii: Role Shifting and Family Dynamics
3.3.4. Subtheme iv: Stigma and Public Views
3.3.5. Subtheme v: Dilemma of Disclosure
3.4. Theme 3: Coping and Support
3.5. Theme 4: Caregiver Perception of Public Awareness of Mental Disorders
3.6. Theme 5: Messages to Others
3.6.1. Subtheme i: Advice to Other Caregivers
3.6.2. Subtheme ii: A Plea to the General Public
4. Discussion
4.1. Implications for Future Research and Practice
4.2. Study Limitations
5. Conclusions
Author Contributions
Funding
Conflicts of Interest
References
- WHO. Mental Disorders. Available online: https://www.who.int/news-room/fact-sheets/detail/mental-disorders (accessed on 20 May 2020).
- American Psychatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th ed.; American Psychatric Association: Arlington, VA, USA, 2013. [Google Scholar]
- Grandón, P.; Jenaro, C.; Lemos, S. Primary caregivers of schizophrenia outpatients: Burden and predictor variables. Psychiatry Res. 2008, 158, 335–343. [Google Scholar] [CrossRef] [PubMed]
- WHO. The World Health Report: 2001: Mental Health: New Understanding, New Hope; World Health Organization: Geneva, Switzerland, 2001. [Google Scholar]
- Tamizi, Z.; Fallahi-Khoshknab, M.; Dalvandi, A.; Mohammadi-Shahboulaghi, F.; Mohammadi, E.; Bakhshi, E. Caregiving burden in family caregivers of patients with schizophrenia: A qualitative study. J. Educ. Health Promot. 2020, 9, 12. [Google Scholar] [PubMed]
- Janardhana, N.; Raghunandan, S.; Naidu, D.M.; Saraswathi, L.; Seshan, V. Care giving of people with severe mental illness: An Indian experience. Indian J. Psychol. Med. 2015, 37, 184–194. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Grover, S.; Pradyumna, S.C. Coping among the caregivers of patients with schizophrenia. Ind. Psychiatry J. 2015, 24, 5–11. [Google Scholar] [CrossRef]
- Hsiao, C.Y.; Tsai, Y.F. Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia. J. Clin. Nurs. 2015, 24, 1546–1556. [Google Scholar] [CrossRef]
- Morrison, P.; Stomski, N. Experiences of family carers for persons using antipsychotic medication. Aust. N. Z. J. Fam. Ther. 2017, 38, 498–513. [Google Scholar] [CrossRef]
- Iseselo, M.K.; Ambikile, J.S. Medication challenges for patients with severe mental illness: Experience and views of patients, caregivers and mental health care workers in Dar es Salaam, Tanzania. Int. J. Ment. Health Syst. 2017, 11, 1–12. [Google Scholar] [CrossRef] [Green Version]
- McCann, T.V.; Bamberg, J.; McCann, F. Family carers’ experience of caring for an older parent with severe and persistent mental illness. Int. J. Ment. Health Nurs. 2015, 24, 203–212. [Google Scholar] [CrossRef] [Green Version]
- Von Kardorff, E.; Soltaninejad, A.; Kamali, M.; Eslami Shahrbabaki, M. Family caregiver burden in mental illnesses: The case of affective disorders and schizophrenia–A qualitative exploratory study. Nord. J. Psychiatry 2016, 70, 248–254. [Google Scholar] [CrossRef]
- Rahmani, F.; Ebrahimi, H.; Seyedfatemi, N.; Namdar Areshtanab, H.; Ranjbar, F.; Whitehead, B. Trapped like a butterfly in a spider’s web: Experiences of female spousal caregivers in the care of husbands with severe mental illness. J. Clin. Nurs. 2018, 27, 1507–1518. [Google Scholar] [CrossRef] [Green Version]
- Sindhu, J.; Erna, J.; Daisy, J. A Qualitative Study on Lived Experience of Caregivers of Alzheimer’s Disease Clients and the Effectiveness of the Booklet on Caregiver’s Burden at Selected Alzheimer’s Care Centers in Kerala. Int. J. Nurs. Educ. 2015, 7, 15–19. [Google Scholar] [CrossRef]
- Vermeulen, B.; Lauwers, H.; Spruytte, N.; Van Audenhove, C. Experiences of family caregivers for persons with severe mental illness: An international exploration. Eur. Neuropsychopharm. 2015, 25, S374. [Google Scholar] [CrossRef]
- Alzahrani, S.H.; Fallata, E.O.; Alabdulwahab, M.A.; Alsafi, W.A.; Bashawri, J. Assessment of the burden on caregivers of patients with mental disorders in Jeddah, Saudi Arabia. BMC Psychiatry 2017, 17, 202. [Google Scholar] [CrossRef] [PubMed]
- Al-Subaie, A.S.; Altwaijri, Y.A.; Al-Habeeb, A.; Bilal, L.; Almeharish, A.; Sampson, N.A.; Liu, H.; Kessler, R.C. Lifetime treatment of DSM-IV mental disorders in the Saudi National Mental Health Survey. Int. J. Methods Psychiatr. Res. 2020. [Google Scholar] [CrossRef] [PubMed]
- McCrae, N.; Sharif, L.; Norman, I. Media portrayals of mental disorder in Saudi Arabia: A review of popular newspapers. Transcult. Psychiatry 2019, 56, 428–442. [Google Scholar] [CrossRef] [Green Version]
- Akbari, M.; Alavi, M.; Irajpour, A.; Maghsoudi, J. Challenges of family caregivers of patients with mental disorders in Iran: A narrative review. Iran. J. Nurs. Midwifery Res. 2018, 23, 329. [Google Scholar]
- Lambert, V.A.; Lambert, C.E. Qualitative descriptive research: An acceptable design. Pacific Rim Int. J. Nurs. Res. 2012, 16, 255–256. [Google Scholar]
- MCIT Most Popularly Used Forms of Social Media Applications Currently in Saudi Arabia. Available online: https://www.mcit.gov.sa/en/media-center/news/ (accessed on 20 June 2020).
- Cohen, D.; Crabtree, B. Qualitative Research Guidelines Project; Robert Wood Johnson Foundation: Princeton, NJ, USA, 2006. [Google Scholar]
- Braun, V.; Clarke, V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006, 3, 77–101. [Google Scholar] [CrossRef] [Green Version]
- Chang, K.H.; Horrocks, S. Lived experiences of family caregivers of mentally ill relatives. J. Adv. Nurs. 2006, 53, 435–443. [Google Scholar] [CrossRef]
- Fusch, P.I.; Ness, L.R. Are we there yet? Data saturation in qualitative research. Qual. Rep. 2015, 20, 1408. [Google Scholar]
- Mulud, Z.A.; McCarthy, G. Caregiver Burden Among Caregivers of Individuals with Severe Mental Illness: Testing the Moderation and Mediation Models of Resilience. Arch. Psychiatr. Nurs. 2017, 31, 24–30. [Google Scholar] [CrossRef] [PubMed]
- Chang, C.-C.; Su, J.-A.; Chang, K.-C.; Lin, C.-Y.; Koschorke, M.; Rüsch, N.; Thornicroft, G. Development of the Family Stigma Stress Scale (FSSS) for detecting stigma stress in caregivers of people with mental illness. Eval. Health Prof. 2019, 42, 148–168. [Google Scholar] [CrossRef]
- Ae-Ngibise, K.A.; Doku, V.C.; Asante, K.P.; Owusu-Agyei, S. The experience of caregivers of people living with serious mental disorders: A study from rural Ghana. Glob. Health Action 2015, 8, 26957. [Google Scholar] [CrossRef] [PubMed]
- Lin, C.-Y.; Chang, C.-C.; Su, J.-A.; Koschorke, M.; Thornicroft, G. Family Stigma Stress Scale in Family Caregivers of People with Mental Illness: Reproducibility and Minimal Detectable Change. Taiwan J. Psychiatry 2018, 32, 136–144. [Google Scholar]
- Chang, C.-C.; Yen, C.-F.; Jang, F.-L.; Su, J.-A.; Lin, C.-Y. Comparing affiliate stigma between family caregivers of people with different severe mental illness in Taiwan. J. Nerv. Ment. Dis. 2017, 205, 542–549. [Google Scholar] [CrossRef] [PubMed]
- Dardas, L.A.; Simmons, L.A. The stigma of mental illness in Arab families: A concept analysis. J. Psychiatr. Ment. Health Nurs. 2015, 22, 668–679. [Google Scholar] [CrossRef] [PubMed]
- Okasha, A. The impact of Arab culture on psychiatric ethics. Arab J. Psychiatry 2008, 19, 81–99. [Google Scholar]
- Iseselo, M.K.; Kajula, L.; Yahya-Malima, K.I. The psychosocial problems of families caring for relatives with mental illnesses and their coping strategies: A qualitative urban based study in Dar es Salaam, Tanzania. BMC Psychiatry 2016, 16, 146. [Google Scholar] [CrossRef] [Green Version]
- Azman, A.; Jamir Singh, P.S.; Sulaiman, J. Caregiver coping with the mentally ill: A qualitative study. J. Ment. Health 2017, 26, 98–103. [Google Scholar] [CrossRef]
- Ayalew, M.; Workicho, A.; Tesfaye, E.; Hailesilasie, H.; Abera, M. Burden among caregivers of people with mental illness at Jimma University Medical Center, Southwest Ethiopia: A cross-sectional study. Ann. Gen. Psychiatry 2019, 18, 10. [Google Scholar] [CrossRef]
- Marimbe, B.D.; Cowan, F.; Kajawu, L.; Muchirahondo, F.; Lund, C. Perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in Zimbabwe. Afr. J. Disabil. 2016, 5, 209. [Google Scholar] [CrossRef] [PubMed]
- Abolfotouh, M.A.; Almutairi, A.F.; Almutairi, Z.; Salam, M.; Alhashem, A.; Adlan, A.A.; Modayfer, O. Attitudes toward mental illness, mentally ill persons, and help-seeking among the Saudi public and sociodemographic correlates. Psychol. Res. Behav. Manag. 2019, 12, 45–54. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Townsend, M.C. Psychiatric Nursing: Assessment, Care Plans, and Medications; FA Davis: Philadelphia, PA, USA, 2014. [Google Scholar]
- Boyd, M.A. Psychiatric Nursing: Contemporary Practice; Lippincott Williams & Wilkins: Philadelphia, PA, USA, 2008. [Google Scholar]
- Stuart, H. Reducing the stigma of mental illness. Glob. Ment. Health 2016, 3, e17. [Google Scholar] [CrossRef] [PubMed]
Caregiver Identifier | Age | Gender | Marital Status | Occupational Status | Educational Level | Relationship to Individual | Family Member’s Mental Disorder | Family History of Mental Disorders | Caregiver Role | Diagnosis Period |
---|---|---|---|---|---|---|---|---|---|---|
C1 | 65 | Female | Married | Housewife | Diploma | Daughter | Bipolar, depression, and obsessive-compulsive disorder | Positive | Not shared | 9 years |
C2 | 42 | Female | Married | Housewife | Bachelor’s | Husband | Depression | Negative | Shared | 1 year |
C3 | 47 | Male | Married | Employed | High school | Mother | Depression | Positive | Shared | 40 years |
C4 | 65 | Female | Married | Housewife | Diploma | Brother | Bipolar | Positive | Not shared | 30 years |
C5 | 34 | Male | Married | Employed | Bachelor’s | Son | Autism | Negative | Shared | Since birth |
C6 | 22 | Female | Single | Student | Bachelor’s | Sister | Psychosis | Positive | Shared | 2 years |
C7 | 22 | Female | Single | Student | Bachelor’s | Brother | Bipolar type 2 | Positive | Shared | 5 years |
C8 | 21 | Female | Single | Student | Bachelor’s | Sister | Bipolar | Unknown | Shared | 10 years |
C9 | 21 | Female | Single | Student | Bachelor’s | Mother | Depression | Positive | Shared | 7 years |
C10 | 24 | Male | Single | Student | Bachelor’s | Father | Alzheimer’s | Positive | Shared | 5–6 years |
C11 | 21 | Female | Single | Student | Bachelor’s | Uncle | Schizophrenia | Negative | Shared | Since birth |
C12 | 39 | Female | Married | Employed | High school | Sister | Intellectual disability | Negative | Shared | Since birth |
C13 | 22 | Female | Single | Student | Bachelor’s | Mother | Depression | Positive | Not shared | 10 years |
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Sharif, L.; Basri, S.; Alsahafi, F.; Altaylouni, M.; Albugumi, S.; Banakhar, M.; Mahsoon, A.; Alasmee, N.; Wright, R.J. An Exploration of Family Caregiver Experiences of Burden and Coping While Caring for People with Mental Disorders in Saudi Arabia—A Qualitative Study. Int. J. Environ. Res. Public Health 2020, 17, 6405. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17176405
Sharif L, Basri S, Alsahafi F, Altaylouni M, Albugumi S, Banakhar M, Mahsoon A, Alasmee N, Wright RJ. An Exploration of Family Caregiver Experiences of Burden and Coping While Caring for People with Mental Disorders in Saudi Arabia—A Qualitative Study. International Journal of Environmental Research and Public Health. 2020; 17(17):6405. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17176405
Chicago/Turabian StyleSharif, Loujain, Shimaa Basri, Fidaa Alsahafi, Mashael Altaylouni, Shihanah Albugumi, Maram Banakhar, Alaa Mahsoon, Nofaa Alasmee, and Rebecca J. Wright. 2020. "An Exploration of Family Caregiver Experiences of Burden and Coping While Caring for People with Mental Disorders in Saudi Arabia—A Qualitative Study" International Journal of Environmental Research and Public Health 17, no. 17: 6405. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17176405