Navigating care: family information needs and responsibilities in the context of schizophrenia caregiving
Downloads
Introduction: : Families of schizophrenia patients need to obtain information from health services about how to care for them. Limited information and understanding of responsibilities in caring are still obstacles to becoming an empowered family in caring for patients with schizophrenia. The study aimed to explore family needs regarding information from health services and family responsibilities when caring for patients with schizophrenia.
Methods: This study used a descriptive qualitative design. The study involved families who cared for patients with schizophrenia in Surabaya, Indonesia. Twenty participants were obtained using purposive sampling techniques and the sample size was determined by data saturation. Data were collected using in-depth interviews, field notes and interview question guides. The data were processed with content analysis.
Results: The results showed eight themes. Families need information about patient conditions, medication, routine control, and counseling for patient conditions as well as for families. The family describes the responsibilities carried out for the patient as providing support for patient treatment, fulfilling daily needs, helping with social skills, and providing activities in spare time.
Conclusions: Adequate information from health services regarding both the patient's condition and family counseling can help to meet the demands of care, which stimulates families to be more empowered to carry out care responsibilities and has an impact on the ability to care better
Keywords: counseling, empowerment, family, mental disorder, responsibility, schizophrenia
Aass, L. et al. (2021) ‘Family support and quality of community mental health care: Perspectives from families living with mental illness’, JournlofClinical Nursing, 31(7).
Anuradha, K. (2003) ‘Counselling families with mentally ill’, The Indian journal of social work, 64(2), pp. 159–166.
APA (2020) Schizophrenia, American Psychological Association.
Barnes, M. et al. (2020) ‘Family-centered health promotion: perspectives for engaging families and achieving better health outcomes’, Inquiry, 57. doi: 10.1177/0046958020923537.
Brunner and Suddarth (2002) Keperawatan Medikal Bedah. 8th edn. Jakarta: EGC.
Cadge, C., Connor, C. and Greenfield, S. (2019) ‘University students’ understanding and perceptions of schizophrenia in the UK: a qualitative study’, BMJ Open, 9. doi: 10.1136/bmjopen-2018-025813.
Chadda, R. (2014) ‘Caring for the family caregivers of persons with mental illness’, Indian J Psychiatry, 56(3), pp. 221–227. doi: 10.4103/0019-5545.140616.
Chang, K. et al. (2018) ‘The chronic sorrow experiences of caregivers of client with schizophrenia in Taiwan: a phenomenological study’, Perspect Psychiatr Care, 54(2), pp. 281–6. doi: 10.1111/ppc.12235.
Chen, L. et al. (2019) ‘The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: a qualitative study’, BMC Psychiatry, 75. doi: https://doi.org/10.1186/s12888-019-2052-4.
Correll, C. and Schooler, N. (2021) ‘Negative symptoms in schizophrenia: A review and clinical guide for recognition, assessment, and treatment’, Neuropsychiatr Dis Treat., 16, pp. 519–534. doi: 10.2147/NDT.S225643.
Dehbozorg, R. et al. (2022) ‘Barriers to family involvement in the care of patients with chronic mental illnesses: A qualitative study’, Frontier Psychiatry, 13. doi: https://doi.org/10.3389/fpsyt.2022.995863.
Dirik, A. et al. (2017) ‘Why involve families in acute mental healthcare? A collaborative conceptual review’, BMJ Open, 7. doi: Dirik A, Sandhu S, Giacco D, et al Why involve families in acute mental healthcare? A collaborative conceptual review BMJ Open 2017;7:e017680. doi: 10.1136/bmjopen-2017-017680.
Fakhrou, A. et al. (2023) ‘Role of family in supporting children with mental disorders in Qatar’, Heliyon, 9(8). doi: 10.1016/j.heliyon.2023.
Fitryasari, R et al. (2018) ‘Family members’ perspective of family resilience ’ s risk factors in taking care of schizophrenia patients’, International Journal of Nursing Sciences, 5(3), pp. 255–261. doi: 10.1016/j.ijnss.2018.06.002.
Fitryasari, Rizki et al. (2018) ‘Predictors of Family Stress in Taking Care of Patients with Schizophrenia’, Journal Ners, 13(1), pp. 72–79.
Fitryasari, R. et al. (2020) ‘Development of family resiliency model to care of patient with schizophrenia’, Scandinavian Journal of Nursing Sciencef Nursing Sciences, 9.
Galderisi, S. et al. (2018) ‘Negative symptoms of schizophrenia: new developments and unanswered research questions’, Lancet Psychiatry, 5, pp. 664–677. doi: 10.1016/S2215-0366(18)30050-6.
Gilmore, J. (2010) ‘Understanding what causes schizophrenia: a developmental perspective’, Am J Psychiatry, 167(1), pp. 8–10. doi: 10.1176/appi.ajp.2009.09111588.
Graves, K. N. and Shelton, T. L. (2007) ‘Family empowerment as a mediator between family-centered systems of care and changes in child functioning: Identifying an important mechanism of change’, Journal of Child and Family Studies, 16(4), pp. 556–566. doi: 10.1007/s10826-006-9106-1.
Haddad, P., Brain, C. and Scott, J. (2014) ‘Nonadherence with antipsychotic medication in schizophrenia: challenges and management strategies’, Patient Relat Outcome Meas, 5, pp. 43–62. doi: 10.2147/PROM.S42735.
Harandi, T., Taghinasab, M. and Nayeri, T. (2017) ‘The correlation of social support with mental health: a meta-analysis’, Electron Physician, 9(9), pp. 5212–5222. doi: 10.19082/5212.
Hardywinoto, S. (2005) Panduan Gerontologi. Jakarta: Gramedia.
Hawari, D. (2009) Holistic Approach in Patient with Schizofrenia. Jakarta: FKUI.
Hendryx, M., Green, C. and Perrin, N. (2009) ‘Social support, activities, and recovery from serious mental illness: STARS study findings’, Journal of Behavioral Health Services and Research, 36(3), pp. 320–329. doi: 10.1007/s11414-008-9151-1.
Hulme, P. A. (1999) ‘Family empowerment: A nursing intervention with suggested outcomes for families of children with a chronic health condition’, Journal of Family Nursing, 5(1), pp. 33–50. doi: 10.1177/107484079900500103.
Hunter, R. and Barry, S. (2012) ‘Negative Symptoms and Psychosocial Functioning in Schizophrenia: Neglected but Important Targets for Treatment’, European Psychiatry, 27(6), pp. 432–436. doi: 10.1016/j.eurpsy.2011.02.015.
Iseselo, M. and Ambikile, J. (2020) ‘Promoting recovery in mental illness: the perspectives of patients, caregivers, and community members in Dar es Salaam, Tanzania’, Psychiatry Journal. doi: 10.1155/2020/3607414.
Iswanti, D. et al. (2023) ‘Development of an integrative empowerment model to care for patients with schizophrenia disorder’, J Public Health Res, 12(3). doi: 10.1177/22799036231197191.
Izibeloko, O. et al. (2016) ‘Family Caregivers’ Knowledge About Their Ill Relatives’ Mental Illness And Treatment: Perspectives From The Niger Delta Region Of Nigeria’, Journal of Behavior Therapy and Mental Health, 1(4), pp. 10–18. doi: 10.14302/issn.2474-9273.jbtm-16-1273.
Jessica, L., Fithriyah, I. and Ardani, I. G. A. I. (2021) ‘The importance of family support in successfull treatment of schizophrenic patient’, Jurnal Psikiatri Surabaya, 10(2), pp. 83–91. doi: 10.20473/jps.v10i2.26453.
Kikkert, M. and Scene, A. (2006) ‘Medication adherence in schizophrenia: exploring patient’s, carer’s and proffesional’s views’, Schizofrenia Bulletin, 32, pp. 768–794.
Krippendorff, K. (2018) Content Analysis: An Introduction to its Methodology. New York: SAGE Publications. New York: SAGE Publications.
Leggatt, M. (2002) ‘Families and mental health workers: the need for partnership’, World Psychiatry., 1(1), pp. 52–54.
Lohrasbi, F. et al. (2023) ‘Promoting psychosocial health of family caregivers of patients with chronic mental disorders: a review of challenges and strategies’, Chonnam Med J, 59(1), pp. 31–47. doi: 10.4068/cmj.2023.59.1.31.
Lucock, M. et al. (2011) ‘Self-care in mental health services: a narrative review’, Health Soc Care Community, 19(6), pp. 602–616. doi: 10.1111/j.1365-2524.2011.01014.x.
Ministry of Health of the Republic of Indonesia (2018) Basic Health Research 2018.
Ngamaba, K. et al. (2023) ‘Participation in leisure activities and quality of life of people with psychosis in England: a multi-site cross-sectional study’, Ann Gen Psychiatry., 22(1), p. 8. doi: 10.1186/s12991-023-00438-1.
Ngui, A., Vasiliadis, H. and Tempier, R. (2015) ‘Factors associated with adherence over time to antipsychotic drug treatment’, Clin. Epidemiol. Glob., 3, pp. 3–9. doi: 10.1016/j.cegh.2013.11.001.
Noorden, M. et al. (2013) ‘Routine outcome monitoring in psychiatric clinical practice: background, overview and implications for person-centered psychiatry’, European Journal for Person Centered Healthcare, 1(1), p. 103. doi: 10.5750/ejpch.v1i1.640.
Ong, H., Fernandez, P. and Lim, H. (2021) ‘Family engagement as part of managing patients with mental illness in primary care’, Singapore Medicine Journal, 62(5), pp. 213–219. doi: 10.11622/smedj.2021057.
Rahmawati, A., Maryanto, M. and Apriliyani, I. (2022) ‘The family knowledge and the recurrence of schizophrenic patients’, Indonesian Journal of Community Health Nursing, 7(2), pp. 57–61. doi: 10.20473/ijchn.v7i2.39505.
Sejong, M. (2021) ‘Determinants of the recurrences of patients with mental disorders in the Psychiatric Polyclinic of Santo Vincentius Hospital, Singkawang’, Indonesian Nursing and Scientific Journal, 11(2).
Siregar, I., Rahmadiah, F. and Siregar, A. (2021) ‘Therapeutic communication strategies in nursing process of angry, anxious, and fearful schizophrenic patients’, British Journal of Nursing Studies, 1(1), pp. 13–19. doi: 10.32996/bjns.
Suryani, Ningsih, E. and Nur’aeni, A. (2019) ‘Knowledge, perception, and burden of family in treating patients with schizophrenia who experience relapse’, Belitung Nursing Journal, 5(4), pp. 162–168. doi: 10.33546/bnj.683.
Sya’diyah, H. et al. (2023) ‘Structural model of family caregiver for elderly with dementia’, Iran J Nurs Midwifery Res, 28(6), pp. 730–734. doi: 10.4103/ijnmr.ijnmr_249_21.
Tehangga, S., Sunarsih, S. and Supodo, T. (2021) ‘The relationship between famili’s knowledge and support with menta disorder treatment in South Konawe District’, Indonesian Journal Of Health Sciences Research and Development, 3(2). doi: 10.36566/ijhsrd/Vol3.Iss2/105 https://ijhsrd.com/index.php/ijhsrd.
Tristiana, R. D. et al. (2018) ‘Perceived barriers on mental health services by the family of patients with mental illness’, International Journal of Nursing Sciences, 5(1). doi: 10.1016/j.ijnss.2017.12.003.
Ulfseth, L., Josephsson, S. and Alsaker, S. (2013) ‘Social relations in everyday activities among patients with persistent mental illness at a psychiatric centre’, Scandinavian Journal of Disability Research, 17(2), pp. 99–114. doi: 10.1080/15017419.2013.781959.
Wardhani, I. (2009) Pengalaman keluarga menghadapi ketidakpatuhan anggota keluarga dengan skizofrenia dalam mengikuti regimen terapeutik: kepatuhan. Fakulta Keperawatan Univeristas Indonesia.
Copyright (c) 2024 Jurnal Ners
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with Jurnal Ners agree to the following terms:
- Authors transfer the Copyright and grant Jurnal Ners the right of first publication with the work simultaneously licensed under a Creative Commons Attribution 4.0 International License that allows others to remix, adapt and build upon the work with an acknowledgment of the work's authorship and of the initial publication in Jurnal Ners.
- Authors are permitted to copy and redistribute the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgment of its initial publication in Jurnal Ners.
Jurnal Ners requires a formal written declaration and transfer of copyright from the author(s) for each article published. We, therefore, ask you to complete and return this form, retaining a copy for your own records. Your cooperation is essential and appreciated. Any delay will result in a delay in publication. The form can be downloaded HERE.