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Marega J, Bah HT. Burdening caregivers of patients with schizophrenia at Edward Francis Small Teaching Hospital, The Gambia. Soc Psychiatry Psychiatr Epidemiol 2024; 59:1751-1760. [PMID: 38498148 DOI: 10.1007/s00127-024-02634-0] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/03/2023] [Accepted: 02/12/2024] [Indexed: 03/20/2024]
Abstract
PURPOSE Deinstitutionalization of persons living with mental illness has led to many patients residing in communities with family members and shifting the burden of care and caregiving from hospitals to homes. The aim of the study was to determine the burden on caregivers of patients with schizophrenia at Edward Francis Small Teaching Hospital (EFSTH). METHODS This was a descriptive cross-sectional study design with a sample consisting of 161 randomly selected caregivers of patients with schizophrenia. The GHQ-12 questionnaire was used to determine the general health status of the caregivers. The caregivers' burden was assessed using the Zarit Burden Scale. The data were collected using the researcher-administered method. The collected data were analyzed with IBM SPSS Version 20 using descriptive statistics, mean differences, and the general linear model (GLM). RESULTS The main findings of this study were that caregivers experienced a significantly high level of burden. Most of them experienced high levels of physical (70%), psychological (93.2%), social (78.3%) and financial (55.3%) burdens. Employment status, specifically unemployment status and belonging to the Wolof ethnic group, was a significant predictor of the level of financial burden on the caregivers. Similarly, the total score for social burden was also significantly greater among unemployed caregivers. Educational level was a significant predictor of the total score on the psychological and physical burden scale. CONCLUSION The caregivers of patients with schizophrenia at EFSTH are experiencing a high level of burden as a result of their caregiving role, which affects their health, and this calls for urgent intervention.
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Affiliation(s)
- Jarra Marega
- Department of Psychiatry, Edward Francis Small Teaching Hospital, C/O Edward Francis Small Teaching Hospital, No. 2 Marina Parade, Banjul, The Gambia
| | - Haddy Tunkara Bah
- Department of Nursing and Reproductive Health, University of The Gambia, C/O School of Medicine and Allied Health Sciences, Banjul, The Gambia.
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2
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Al-Awad F. Perceived Burden and Quality of Life in Caregivers of Patients with Schizophrenia in Saudi Arabia's Eastern Province: A Cross-sectional Study. Clin Pract Epidemiol Ment Health 2024; 20:e17450179314013. [PMID: 39355198 PMCID: PMC11443458 DOI: 10.2174/0117450179314013240417105321] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/02/2024] [Revised: 03/26/2024] [Accepted: 03/28/2024] [Indexed: 10/03/2024]
Abstract
Background and Aims Family Caregivers (FCGs) of patients with schizophrenia (PwS) may face unanticipated sources of stress and responsibility, which can negatively impact their quality of life (QoL). This study aimed to assess FCGs' QoL and the impact of clinical characteristics of patients and sociodemographic factors on their QoL. Patients and Methods A cross-sectional questionnaire-based study surveyed 340 FCGs from outpatient clinics of PwS in two large psychiatric hospitals in Saudi Arabia's eastern province using a convenience sampling approach. We used the Adult Carer Quality of Life (AC-QoL) scale, which has eight subscales and 40 items, to assess QoL. AC-QoL is translated into Arabic in this study. Results The study included 216 FCGs, with 127 (58.8%) being men, 117 (54.2%) being over 45 years old, 91 (42.1%) being a sibling of a PwS, and 82 (38%) being a parent of a PwS. The mean score in our sample was 78.2 ± 21.24 out of 120, indicating mid-range QoL. Lower QoL was associated with more time spent in caregiving per day, a lower educational level of FCG, and recent admission of PwS to an inpatient unit. Conclusion PwS FCGs have a mid-range QoL. FCGs reported a moderate financial burden and low levels of support from healthcare professionals. FCG's QoL and stress can be reduced through healthcare providers, participation in a community support group, and addressing an FCG's in an individual setting.
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Affiliation(s)
- Feras Al-Awad
- Department of Psychiatry, College of Medicine, Imam Abdulrahman Bin Faisal University, Dammam, Saudi Arabia
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3
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Khadanga P, Nadadgalli G, Pawar G. A comparative analysis of burden of care and coping styles between wives of monosubstance- and polysubstance-dependent men. Ind Psychiatry J 2024; 33:S121-S126. [PMID: 39534140 PMCID: PMC11553632 DOI: 10.4103/ipj.ipj_350_23] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/25/2023] [Revised: 01/25/2024] [Accepted: 02/23/2024] [Indexed: 11/16/2024] Open
Abstract
Background Polysubstance dependence has emerged as a clinically distinct entity from monosubstance dependence, yet its impact on patients' wives is understudied. Wives of substance-dependent men face a tremendous burden in their social lives, leading to faulty coping and burden of care. Comparative studies between monosubstances and polysubstances are lacking. Aims This study compared the burden of care and coping styles between wives of monosubstance- and polysubstance-dependent men. Materials and Methods A comparative analysis was performed between wives of 70 monosubstance-dependent and 70 polysubstance-dependent patients. The burden of care was assessed by the Burden Assessment Schedule (BAS), whereas coping styles were assessed using the Brief Coping Orientation to Problems Experienced (Brief COPE) Inventory. Results Both groups faced a moderate burden of care, which was significantly higher in wives of polysubstance abusers as compared to monosubstance abusers (U = 366.50, P < 0.01). The difference was mainly seen in their impact on well-being and relationships with others. Avoidant coping was significantly higher in wives of polysubstance abusers (U = 341.00, P < 0.01), whereas emotion-focused and problem-solving coping styles were equally represented. Avoidant and problem-solving coping styles positively correlated with the burden of care (P < 0.01). Conclusion The burden of care and avoidant coping strategies are higher in wives of polysubstance-dependent men. An increased burden of care is associated with increased use of both avoidant coping and problem-solving coping.
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Affiliation(s)
- Poornima Khadanga
- Clinical Fellow, CAMHS, Northamptonshire Healthcare Foundation NHS Trust, UK
| | | | - Gaurav Pawar
- TeleManas, Regional Mental Hospital, Pune, Maharashtra, India
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Lewins A, Morant N, Akther-Robertson J, Crellin NE, Stansfeld JL, Smith R, Moncrieff J. A qualitative exploration of family members' perspectives on reducing and discontinuing antipsychotic medication. J Ment Health 2024; 33:333-340. [PMID: 35521675 DOI: 10.1080/09638237.2022.2069710] [Citation(s) in RCA: 4] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/16/2021] [Revised: 02/24/2022] [Accepted: 03/08/2022] [Indexed: 10/18/2022]
Abstract
BACKGROUND Antipsychotics are routinely prescribed to people diagnosed with schizophrenia or psychosis on a long-term basis. Considerable literature explores service users' opinions and experiences of antipsychotics, but studies investigating family members' views are lacking. AIMS To explore family members' perspectives on antipsychotics, particularly their views on long-term use, reduction and discontinuation of antipsychotics. METHODS Semi-structured interviews were conducted with 11 family members of people experiencing psychosis. Participants were recruited through community support groups and mental health teams. Interviews were analysed thematically. RESULTS The majority of family members valued antipsychotic medication primarily in supporting what they saw as a fragile stability in the person they cared for. Their views of medication were ambivalent, combining concerns about adverse effects with a belief in the importance of medication due to fears of relapse. They described a need for constant vigilance in relation to medication to ensure it was taken consistently, and often found changes, particularly reduction in medication difficult to contemplate. CONCLUSIONS Findings highlight that family members' attitudes to medication sometimes conflict with those of the people they care for, impacting on their health and the caring relationship. Family members may need more support and could be usefully involved in medication decision-making.
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Affiliation(s)
- Amy Lewins
- Population Policy and Practice, UCL Great Ormond Street Institute of Child Health Population Policy and Practice, London, United Kingdom of Great Britain and Northern Ireland
| | - Nicola Morant
- Division of Psychiatry, University College London, London, United Kingdom of Great Britain and Northern Ireland
| | - Johura Akther-Robertson
- Division of Psychiatry, University College London, London, United Kingdom of Great Britain and Northern Ireland
- NELFT Research & Development Department, North East London NHS Foundation Trust Maggie Lilley Suite, Goodmayes Hospital, London, United Kingdom of Great Britain and Northern Ireland
| | - Nadia E Crellin
- Division of Psychiatry, University College London, London, United Kingdom of Great Britain and Northern Ireland
| | - Jacki L Stansfeld
- Division of Psychiatry, University College London, London, United Kingdom of Great Britain and Northern Ireland
- NELFT Research & Development Department, North East London NHS Foundation Trust Maggie Lilley Suite, Goodmayes Hospital, London, United Kingdom of Great Britain and Northern Ireland
| | - Ruth Smith
- Independent consultant, Brighton, United Kingdom of Great Britain and Northern Ireland
| | - Joanna Moncrieff
- Division of Psychiatry, University College London, London, United Kingdom of Great Britain and Northern Ireland
- Havering Community Recovery Team, Harold Wood, United Kingdom of Great Britain and Northern Ireland
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Reed M, Bedard C, Perlman CM, Browne DT, Ferro MA. Family Functioning and Health-Related Quality of Life in Parents of Children with Mental Illness. JOURNAL OF CHILD AND FAMILY STUDIES 2023:1-12. [PMID: 37362627 PMCID: PMC9958324 DOI: 10.1007/s10826-023-02556-6] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 02/12/2023] [Indexed: 06/28/2023]
Abstract
Previous research suggests that family dysfunction may be related to lower health-related quality of life (HRQoL) in parent caregivers, but it is unknown if this association exists in the context of child mental illness. Therefore, the objectives of this study were to compare HRQoL between parent caregivers and Canadian population norms using the Short Form 36 Health Survey (SF-36); examine associations between family functioning and parental HRQoL; and investigate whether child and parental factors moderate associations between family functioning and parental HRQoL. Cross-sectional data were collected from children receiving mental healthcare at a pediatric hospital and their parents (n = 97). Sample mean SF-36 scores were compared to Canadian population norms using t-tests and effect sizes were calculated. Multiple regression was used to evaluate associations between family functioning and parental physical and mental HRQoL, adjusting for sociodemographic and clinical covariates. Proposed moderators, including child age, sex, and externalizing disorder, and parental psychological distress, were tested as product-term interactions. Parents had significantly lower physical and mental HRQoL versus Canadian norms in most domains of the SF-36, and in the physical and mental component summary scores. Family functioning was not associated with parental physical HRQoL. However, lower family functioning predicted lower parental mental HRQoL. Tested variables did not moderate associations between family functioning and parental HRQoL. These findings support the uptake of approaches that strive for collaboration among healthcare providers, children, and their families (i.e., family-centered care) in child psychiatry settings. Future research should explore possible mediators and moderators of these associations.
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Affiliation(s)
- Madeline Reed
- School of Public Health Sciences, University of Waterloo, 200 University Avenue West, Waterloo, ON Canada
| | - Chloe Bedard
- School of Public Health Sciences, University of Waterloo, 200 University Avenue West, Waterloo, ON Canada
| | - Christopher M. Perlman
- School of Public Health Sciences, University of Waterloo, 200 University Avenue West, Waterloo, ON Canada
| | - Dillon T. Browne
- Department of Psychology, University of Waterloo, 200 University Avenue West, Waterloo, ON Canada
| | - Mark A. Ferro
- School of Public Health Sciences, University of Waterloo, 200 University Avenue West, Waterloo, ON Canada
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Nooraeen S, Bazargan-Hejazi S, Naserbakht M, Vahidi C, Shojaerad F, Mousavi SS, Malakouti SK. Impact of COVID-19 pandemic on relapse of individuals with severe mental illness and their caregiver's burden. Front Public Health 2023; 11:1086905. [PMID: 36817882 PMCID: PMC9929280 DOI: 10.3389/fpubh.2023.1086905] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/01/2022] [Accepted: 01/05/2023] [Indexed: 02/05/2023] Open
Abstract
Background The implementation of quarantine and social distancing measures to control the COVID-19 pandemic led to restrictions at the community level and most of in-person psychiatric services were discontinued. This situation could affect the psychopathology of the patients and the burden of their caregivers. The aim of this study was to investigate the effects of COVID-19 pandemic on people with severe mental illnesses (SMIs) and their caregivers' burden. Method The study sample consisted of 86 patients with severe mental illness and 86 caregivers. The mental status, relapse rate, and rehospitalization rate of the patients and the general health status and burden of caregivers were investigated in three waves, including before and 3 and 6 months after the COVID-19 pandemic. Results The relapse rate of the patients was 14%, 33.7%, and 43% (p = 0.000) and the rehospitalization rate was 4.7%, 7%, and 10.5% in waves 0, 1, and 2, respectively (p = 0.000). Most of the psychopathological scales increased in three waves (p = 0.000). The caregivers' burden and health condition worsened during the nine months of the study as well (p = 0.000). Conclusion The COVID-19 pandemic led to the exacerbation of symptoms and increased the relapse rate in people with SMIs. It also worsened the caregivers' condition. People with severe mental illnesses (SMIs) and their caregivers are one of the most vulnerable groups on which the COVID-19 pandemic had a marked negative effect.
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Affiliation(s)
- Sara Nooraeen
- Mental Health Research Center, School of Behavioral Sciences and Mental Health, Iran University of Medical Sciences, Tehran, Iran
| | - Shahrzad Bazargan-Hejazi
- Department of Psychiatry, Charles R. Drew University of Medicine and Science, Los Angeles, CA, United States
| | - Morteza Naserbakht
- Mental Health Research Center, Psychosocial Health Research Institute, Tehran, Iran
| | - Camelia Vahidi
- Andisheh-Salamat-Ravan Mental Rehabilitation Center, Tehran, Iran
| | | | | | - Seyed Kazem Malakouti
- Mental Health Research Center, School of Behavioral Sciences and Mental Health, Iran University of Medical Sciences, Tehran, Iran
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Yerriah J, Tomita A, Paruk S. Surviving but not thriving: Burden of care and quality of life for caregivers of patients with schizophrenia spectrum disorders and comorbid substance use in South Africa. Early Interv Psychiatry 2022; 16:153-161. [PMID: 33733599 DOI: 10.1111/eip.13141] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/29/2020] [Revised: 11/25/2020] [Accepted: 03/06/2021] [Indexed: 11/30/2022]
Abstract
BACKGROUND Schizophrenia and schizophrenia spectrum disorders can be devastating for the patient and family. Early recognition and interventions for caregivers, who form part of an overburdened 'invisible health care system' in resource-limited settings with an extensive mental health treatment gap, are crucial for improved outcomes for patients and carers. The study investigated the burden of care and quality of life (QOL) among caregivers of patients with schizophrenia spectrum disorders and its determinants in South Africa. METHODS We conducted a study of 101 matched-paired samples of family caregivers and adult patients (N = 202) seeking care from two psychiatric hospitals in South Africa. The assessment consisted of the Zarit Burden Interview for caregiver burden, WHO-Quality of life scale and WHO ASSIST for substance use. RESULTS Most caregivers (n = 81; 80.2%) reported high or severe caregiver burden. None of the four QOL domains surpassed the 60% mark where the observed scores (out of 100) for physical health (56.2, SD = 16.2), psychological health (55.3, SD = 17,6), social relationships (47.1, SD = 19.3) and environment (53.5, SD = 16.3). Lower burden was associated with greater QOL score across all four domains among caregivers (p ≤ .05). Lower educational attainment was associated with poorer QOL, and higher household income with higher QOL in certain domains. Patient comorbid alcohol (p ≤ .05) and high-risk cannabis use (p < .02) were the only significant factors of increased caregiver burden scores. CONCLUSION The high caregiver burden, and its association with alcohol and cannabis use, suggests the need to address comorbid substance use and early pragmatic support for families.
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Affiliation(s)
- Jacqueline Yerriah
- Department of Psychiatry, Nelson R. Mandela School of Medicine, University of KwaZulu-Natal, Durban, South Africa
| | - Andrew Tomita
- Centre for Rural Health, School of Nursing and Public Health, University of KwaZulu-Natal, Durban, South Africa.,KwaZulu-Natal Research Innovation and Sequencing Platform (KRISP), College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
| | - Saeeda Paruk
- Department of Psychiatry, Nelson R. Mandela School of Medicine, University of KwaZulu-Natal, Durban, South Africa
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Estrada-Fernández ME, Gil-Lacruz M, Gil-Lacruz AI, Viñas-López A. The impact of community care: Burden and quality of life of the informal caregivers of patients with severe mental disorder. JOURNAL OF COMMUNITY PSYCHOLOGY 2022; 50:487-501. [PMID: 33999449 DOI: 10.1002/jcop.22594] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/13/2021] [Revised: 04/08/2021] [Accepted: 04/09/2021] [Indexed: 06/12/2023]
Abstract
This study analyzes the dimensions and consequences of the burden of caregivers of patients with SMD (Severe Mental Disorder) and the repercussions that this role has on their quality of life and health in the physical, psychic and social spheres. This is a descriptive cross-sectional study and inferential observational study which explores caregivers of patients with SMD admitted to Psychiatry Day Hospital (Huesca, Spain). The technique of consecutive cases was used as a technique for sampling and sample selection. An individualized interview was arranged, where sociodemographic data were collected and scales and instruments were administered. 52 caregivers met the inclusion criteria. The female sex predominates (67%), being the patient's mother (48%). The average age of caregivers is 60 years old. Almost 60% of the sample presents intense burden and alterations of general mental health, 77% reveal anxiety and depression, and 46% little social support. Burden is associated with hospitalization within the last year, anxiety, or total social support received. It is appreciated how the diagnosis of a chronic disease constitutes an important challenge for the patient and their family, due to the burden of the disease and the impact of the new routines imposed by the continuous treatment.
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Affiliation(s)
| | - Marta Gil-Lacruz
- Department of Psychology and Sociology, University of Zaragoza, Zaragoza, Spain
| | - Ana I Gil-Lacruz
- Department of Management and Organisation, University of Zaragoza, Zaragoza, Spain
| | - Antonio Viñas-López
- Department of Traumatology and Orthopaedics Surgery Unit, San Jorge Hospital, Huesca, Spain
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Caqueo-Urízar A, Urzúa A, Ponce-Correa F, Ferrer R. Psychosocial Effects of the COVID-19 Pandemic on Patients With Schizophrenia and Their Caregivers. Front Psychol 2021; 12:729793. [PMID: 34803806 PMCID: PMC8602112 DOI: 10.3389/fpsyg.2021.729793] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/23/2021] [Accepted: 10/18/2021] [Indexed: 12/24/2022] Open
Abstract
The aim of this study was to analyze the psychosocial effects of the COVID-19 pandemic on 120 patients with schizophrenia, and their caregivers (control group), in the city of Arica, northern Chile. The hypotheses of this study hold that (1) self-reports of the impact of the COVID-19 pandemic among patients and caregivers would be positively correlated, (2) caregivers would self-report a greater impact of the pandemic on their daily lives, and (3) patients infected with COVID-19 would experience lower levels of mental health improvement and higher levels of psychological distress. Hypotheses were tested using correlations, mean differences, and effect sizes (Cohen’s d). The results showed that patients with schizophrenia who had been in quarantine for almost a year showed similar levels of concern as their caregivers in the domains of health and social life. However, caregivers showed significant differences from patients in the areas of income, concern, and employment status. In addition, patients who were infected with COVID-19 showed lower levels of well-being and worse psychological recovery. The implications of the findings highlight the need to incorporate mental health interventions in the pandemic health context for caregivers of people with schizophrenia. Finally, the results suggest that Covid-19 infection has a significant effect on the recovery and psychological well-being of patients with schizophrenia.
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Affiliation(s)
| | - Alfonso Urzúa
- Escuela de Psicología, Universidad Católica del Norte, Antofagasta, Chile
| | | | - Rodrigo Ferrer
- Escuela de Psicología y Filosofía, Universidad de Tarapacá, Arica, Chile
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Jones N, Basaraba C, Piscitelli S, Jewell T, Nossel I, Bello I, Mascayano F, Scodes J, Marino L, Wall M, Dixon LB. Clients' Preferences for Family Involvement and Subsequent Family Contact Patterns Within OnTrackNY Early Psychosis Services. Psychiatr Serv 2021; 72:399-407. [PMID: 33530730 DOI: 10.1176/appi.ps.202000241] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
Abstract
OBJECTIVE Little is known about clients' preferences for family involvement and subsequent family contact in naturalistic, community-based coordinated specialty care (CSC) settings. The study's primary goal was to characterize clients' preferences and longitudinal patterns of family contact with providers across the OnTrackNY network in New York. METHODS Clinical administrative data collected at 3-month intervals and spanning 21 OnTrackNY CSC sites were used to analyze the preferences of 761 clients at baseline (unconditional involvement, conditional involvement, or no involvement) and patterns of family contact with program staff (always, sometimes, never, or early discharge) and their correlates during the initial 12-month service period. Data from clients discharged before 12 months were included for comparison. RESULTS At baseline, most clients requested some form of family involvement (unconditional, 59%; conditional, 35%; and none, 6%). Within each 3-month assessment period, rates of family contact ranged from 73% to 84%. Variables associated with both client preferences and contact patterns included baseline insurance status, housing status, race, frequency of family contact, and employment. Clients' preferences for no or conditional family involvement were associated with higher rates of early discharge (i.e., before 1 year). CONCLUSIONS Structuring family involvement around clients' preferences did not appear to negatively affect family contact, and for some clients, it seemed to bolster such contact. Additional mixed-methods research is needed to deepen the understanding of the contexts and reasoning underlying both client preferences for family involvement and subsequent levels of family contact.
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Affiliation(s)
- Nev Jones
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Cale Basaraba
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Sarah Piscitelli
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Thomas Jewell
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Ilana Nossel
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Iruma Bello
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Franco Mascayano
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Jennifer Scodes
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Leslie Marino
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Melanie Wall
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
| | - Lisa B Dixon
- Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript
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11
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Di Lorenzo R, Girone A, Panzera N, Fiore G, Pinelli M, Venturi G, Magarini F, Ferri P. Empathy and perceived burden in caregivers of patients with schizophrenia spectrum disorders. BMC Health Serv Res 2021; 21:250. [PMID: 33740963 PMCID: PMC7980555 DOI: 10.1186/s12913-021-06258-x] [Citation(s) in RCA: 12] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/13/2020] [Accepted: 03/08/2021] [Indexed: 01/31/2023] Open
Abstract
BACKGROUND Caregivers of patients load different kinds of burdens, including emotional distress. Aims of this study were to evaluate both burden and empathy of caregivers who assist patients with schizophrenia spectrum disorders. METHODS We selected a sample of 60 caregivers (34 women and 26 men), who assisted patients with schizophrenia spectrum disorders treated in our local Community Mental Health Center for a 1-year minimum period. We administered two scales to our sample, Zarit Burden Interview (ZBI) and Balanced Emotional Empathy Scale (BEES), and collected data of caregivers and their assisted patients in a 3-month period. Data were statistically analyzed. RESULTS We reported a mean ZBI score of 49.68 (±15.03 SD) and a mean BEES score of 14.35 (±9.05 SD), indicating the perception of moderate-severe burden and low level of empathy, respectively. The analysis of internal consistency confirmed the good reliability of both ZBI (Cronbach's alpha = 0.90) and BEES (Cronbach's alpha = 0.77). The correlation between the two scales was not statistically significant at Spearman test. At our multiple linear regression, many variables of both caregiver and patient showed a significant correlation with the ZBI score. In particular, not living with the assisted patient and female gender of caregiver potentially decreased the burden, whereas clinical severity of assisted patient and two caregiver conditions, middle school education and spouse relationship with patient, could worsen the burden. We highlighted two positive statistically significant correlations between the total score of BEES and caregiver characteristics: being spouse and not living with assisted patient. CONCLUSIONS Our study highlights that the caregiver burden of patients with severe psychiatric disorders is high and is associated with low emotional empathy experienced by caregivers, probably due to a defensive psychological mechanism. The conditions of spouse and cohabitation can concomitantly increase both empathy and burden in caregivers.
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Affiliation(s)
- Rosaria Di Lorenzo
- Psychiatric Intensive Treatment Facility, Mental Health and Drug Abuse Department of AUSL-Modena, Via Paul Harris, 175, 41122, Modena, Italy.
| | - Anna Girone
- Casa Famiglia Querce di Mamre Centro Socio Riabilitativo Residenziale, Fondazione Casa Famiglia Mattioli Garavini- Onlus, Via Statutaria, 44, 42013, Casalgrande, Reggio Emilia, Italy
| | - Nunzio Panzera
- School of Nursing, University of Modena and Reggio Emilia, via del Pozzo, 71, 41124, Modena, Italy
| | - Gianluca Fiore
- Resident in Psychiatry, University of Modena and Reggio Emilia, via del Pozzo, 71, 41124, Modena, Italy
| | - Margherita Pinelli
- Resident in Psychiatry, University of Modena and Reggio Emilia, via del Pozzo, 71, 41124, Modena, Italy
| | - Giulia Venturi
- Resident in Psychiatry, University of Modena and Reggio Emilia, via del Pozzo, 71, 41124, Modena, Italy
| | - Federica Magarini
- Resident in Psychiatry, University of Modena and Reggio Emilia, via del Pozzo, 71, 41124, Modena, Italy
| | - Paola Ferri
- Department of Biomedical, Metabolic and Neural Sciences, via Campi, 287, 41125, Modena, Italy
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12
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Caqueo-Urízar A, Urzúa A, Mena-Chamorro P, Boucekine M, Richieri R, Auquier P, Fernandes S, Fond G, Boyer L. Cross-Cultural Adaptation and Validation of the Quality of Life Questionnaire for Caregivers of Patients with Schizophrenia (S-CGQoL) in Latin America. Encephale 2021; 47:291-298. [PMID: 33551123 DOI: 10.1016/j.encep.2020.09.007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/16/2020] [Revised: 08/20/2020] [Accepted: 09/19/2020] [Indexed: 11/16/2022]
Abstract
OBJECTIVES The aim of this study was to adapt and validate the Schizophrenia Caregiver's Quality of Life Questionnaire (S-CGQoL) for use in the Hispanic-American population from the caregiver's perspective. METHODS A cross-sectional instrumental model was used, with a sample of 253 caregivers of patients suffering of Schizophrenia in Bolivia, Peru and Chile. The psychometric properties of the S-CGQoL were tested through construct validity, reliability and some aspects of external validity. In addition, in order to assess the nature of the different items across the three countries, a Differential Performance Analysis (DPA) was conducted. RESULTS A confirmatory factor analysis showed that the scale structure was well correlated to the initial structure of the QoL-MDS. The results confirmed the existence of adequate reliability indicators (α>.70 and ω>.80) and the absence of FIDs supporting the invariance of item calibrations among the three Latin American countries. CONCLUSIONS The adaptation and validation of the S-CGQoL questionnaire demonstrate adequate psychometric properties to assess the quality of life of caregivers in samples of middle-income countries in Latin America.
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Affiliation(s)
- A Caqueo-Urízar
- Instituto de Alta Investigación, Universidad de Tarapacá, Arica, Chile.
| | - A Urzúa
- Escuela de Psicología, Universidad Católica del Norte, Antofagasta, Chile
| | - P Mena-Chamorro
- Escuela de Psicología y Filosofía, Universidad de Tarapacá, Arica, Chile
| | - M Boucekine
- Aix-Marseille Univ, EA 3279-Public Health, Chronic Diseases and Quality of Life - Research Unit, 13005 Marseille, France
| | - R Richieri
- Aix-Marseille Université, CNRS, École Centrale Marseille, UMR, 7249, Institut Fresnel, Marseille, France
| | - P Auquier
- Aix-Marseille Univ, EA 3279-Public Health, Chronic Diseases and Quality of Life - Research Unit, 13005 Marseille, France
| | - S Fernandes
- Aix-Marseille Univ, EA 3279-Public Health, Chronic Diseases and Quality of Life - Research Unit, 13005 Marseille, France
| | - G Fond
- Aix-Marseille Univ, EA 3279-Public Health, Chronic Diseases and Quality of Life - Research Unit, 13005 Marseille, France
| | - L Boyer
- Aix-Marseille Univ, EA 3279-Public Health, Chronic Diseases and Quality of Life - Research Unit, 13005 Marseille, France
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13
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Fekih-Romdhane F, Ben Ali S, Ghazouani N, Tira S, Cheour M. Burden in Tunisian Family Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders; Associations with Depression, Anxiety, Stress, and Quality of Life. Clin Gerontol 2020; 43:545-557. [PMID: 32058858 DOI: 10.1080/07317115.2020.1728600] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/30/2022]
Abstract
BACKGROUND There are very little data on the burden among caregivers of older adults with severe mental diseases. We aimed to assess the perceived burden among caregivers of family members with schizophrenia spectrum and bipolar disorders. METHOD A cross-sectional study was carried out with 52 older patients with schizophrenia spectrum and bipolar disorders and their family caregivers. Caregivers were assessed with the medical outcome survey short form (SF-36), the Zarit Burden Interview (ZBI) and the Depression Anxiety and Stress scales (DASS-21). RESULTS Caregivers' mental quality of life was impaired with an average mental score of 59.05. For a threshold value of 17, the level of perceived burden was considered as high for 42.3% of caregivers. After controlling for demographic variables (age and gender) and patients' health-related variables (level of dependency, comorbidities, age onset of illness, number of hospitalizations and duration of clinical remission), caregivers' levels of depression, stress, and SF-36 physical component significantly contributed to their perceived burden. CONCLUSIONS Certain modifiable risk factors play an inescapable role in increasing the level of burden among caregivers of older patients with serious mental illnesses. CLINICAL IMPLICATIONS Improving the quality of life and psychological well-being of family caregivers should be considered an integral part of treatment for serious mental illness in older adult patients.
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Affiliation(s)
- Feten Fekih-Romdhane
- Faculty of Medicine of Tunis, Tunis El Manar University , Tunis, Tunisia.,Department of Psychiatry Ibn Omrane, Razi Hospital , Manouba, Tunisia
| | - Sana Ben Ali
- Faculty of Medicine of Tunis, Tunis El Manar University , Tunis, Tunisia.,Department of Psychiatry Ibn Omrane, Razi Hospital , Manouba, Tunisia
| | - Nada Ghazouani
- Faculty of Medicine of Tunis, Tunis El Manar University , Tunis, Tunisia.,Department of Psychiatry Ibn Omrane, Razi Hospital , Manouba, Tunisia
| | - Salma Tira
- Faculty of Medicine of Tunis, Tunis El Manar University , Tunis, Tunisia.,Department of Psychiatry Ibn Omrane, Razi Hospital , Manouba, Tunisia
| | - Majda Cheour
- Faculty of Medicine of Tunis, Tunis El Manar University , Tunis, Tunisia.,Department of Psychiatry Ibn Omrane, Razi Hospital , Manouba, Tunisia
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Klages D, East L, Usher K, Jackson D. Modes of Informed Caring: Perspectives of Health Professionals Who Are Mothers of Adult Children with Schizophrenia. Issues Ment Health Nurs 2020; 41:792-798. [PMID: 32421377 DOI: 10.1080/01612840.2020.1731890] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/24/2022]
Abstract
Schizophrenia is a global concern, and, this paper, describes the caring roles of health professionals who are mothers of adult children with schizophrenia. A thematic analysis of data from a doctoral study identified a blending of expertise into an informed care model. Caring roles included: constant carer; coordinator carer; watchful bystander carer; and life coach carer. Previous research has not explored these dual roles. This paper elucidates their responsive approaches and contributions to mothering and caregiving roles. Informed by a fusion of professional and mothering knowledges, their insights into mental health care have been forged by their experiences and is an untapped resource.
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Affiliation(s)
- Debra Klages
- School of Health, University of New England, Armidale, NSW, Australia
| | - Leah East
- School of Health, University of New England, Armidale, NSW, Australia
| | - Kim Usher
- School of Health, University of New England, Armidale, NSW, Australia
| | - Debra Jackson
- Faculty of Health, University of Technology Sydney (UTS), Sydney, NSW, Australia
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15
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Fitryasari R, Nursalam N, Yusuf A, Hargono R, Lin ECL, Tristiana RD. Development of a family resiliency model to care of patients with schizophrenia. Scand J Caring Sci 2020; 35:642-649. [PMID: 32628789 DOI: 10.1111/scs.12886] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/18/2020] [Revised: 04/28/2020] [Accepted: 06/08/2020] [Indexed: 11/30/2022]
Abstract
Families who care for schizophrenia suffer stress and lose the ability to treat. Family stress can be mediated by resilience. Objective: This study aimed to develop a family resilience model based on family-centred nursing for persons with schizophrenia. This study used a mixed-method cross-sectional approach. The population was a family of caregivers for persons with schizophrenia at Mental Hospital in Surabaya, Indonesia. The respondents were 137 families recruited by simple random sampling. Variables include family factors, risk factors, protective factors, patient factors, family stress, family resilience and family ability to care for persons with schizophrenia. The data were collected using questionnaires and then analysed with partial least squares. The statistical results afforded material for focus group discussions with six families and 10 health workers (psychiatrists, psychologists and nurses) in order to improve the model. The result showed family stress was influenced by family factors (path coefficient = -0.145; t = 2.26), risk factors (path coefficient = 0.753; t = 16.7) and patient factors (path coefficient = 0.159; t = 3.23). Family resilience is influenced by risk factors (path coefficient = 0.316; t = 2.60), protective factors (path coefficient = 0.176; t = 2.22) and family stress (path coefficient = 0.298; t = 2.54). Family resilience affects the family ability to treat persons with schizophrenia (path coefficient = 0.366; t = 5.36). The family resilience model increases family capability by 13.4%. The model helps families through stress management by controlling the burden and stigma so that families are able to survive, rise, growing stronger and be better at caring for persons with schizophrenia.
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Affiliation(s)
| | | | - Ah Yusuf
- Nursing Faculty, Airlangga University, Surabaya, Indonesia
| | - Rachmat Hargono
- Public Health Faculty, Airlangga University, Surabaya, Indonesia
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16
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Hazell CM, Hayward M, Lobban F, Pandey A, Pinfold V, Smith HE, Jones CJ. Demographic predictors of wellbeing in Carers of people with psychosis: secondary analysis of trial data. BMC Psychiatry 2020; 20:269. [PMID: 32487127 PMCID: PMC7265638 DOI: 10.1186/s12888-020-02691-0] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/15/2018] [Accepted: 05/21/2020] [Indexed: 12/02/2022] Open
Abstract
BACKGROUND Carers of people with psychosis are at a greater risk of physical and mental health problems compared to the general population. Yet, not all carers will experience a decline in health. This predicament has provided the rationale for research studies exploring what factors predict poor wellbeing in carers of people with psychosis. Our study builds on previous research by testing the predictive value of demographic variables on carer wellbeing within a single regression model. METHODS To achieve this aim, we conducted secondary analysis on two trial data sets that were merged and recoded for the purposes of this study. RESULTS Contrary to our hypotheses, only carer gender and age predicted carer wellbeing; with lower levels of carer wellbeing being associated with being female or younger (aged under 50). However, the final regression model explained only 11% of the total variance. CONCLUSIONS Suggestions for future research are discussed in light of the limitations inherent in secondary analysis studies. Further research is needed where sample sizes are sufficient to explore the interactive and additive impact of other predictor variables.
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Affiliation(s)
- Cassie M. Hazell
- grid.12896.340000 0000 9046 8598School of Social Sciences, University of Westminster, London, W1W 6UW UK ,grid.414601.60000 0000 8853 076XResearch and Development Department, Sussex Education Centre, Brighton and Sussex Medical School, Nevill Avenue, Hove, BN3 7HZ UK ,grid.12082.390000 0004 1936 7590University of Sussex, Brighton, UK
| | - Mark Hayward
- grid.12082.390000 0004 1936 7590University of Sussex, Brighton, UK ,grid.451317.50000 0004 0489 3918Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, Hove, BN3 7HZ UK
| | - Fiona Lobban
- grid.9835.70000 0000 8190 6402Health & Medicine, Lancaster University, Furness Building, Lancaster, LA1 4YX UK
| | - Aparajita Pandey
- grid.451317.50000 0004 0489 3918Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, Hove, BN3 7HZ UK
| | - Vanessa Pinfold
- grid.490917.2The McPin Foundation, 32-36 Loman Street, London, SE1 0EH UK
| | - Helen E. Smith
- grid.414601.60000 0000 8853 076XResearch and Development Department, Sussex Education Centre, Brighton and Sussex Medical School, Nevill Avenue, Hove, BN3 7HZ UK ,grid.59025.3b0000 0001 2224 0361Family Medicine and Primary Care, Lee Kong Chian School of Medicine, Nanyang Technological University Singapore, Singapore, 308232 Singapore
| | - Christina J. Jones
- grid.414601.60000 0000 8853 076XResearch and Development Department, Sussex Education Centre, Brighton and Sussex Medical School, Nevill Avenue, Hove, BN3 7HZ UK ,grid.5475.30000 0004 0407 4824School of Psychology, University of Surrey, Guildford, Surrey, GU2 7XH UK
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17
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Rousseau MC, Baumstarck K, Valkov M, Felce A, Brisse C, Khaldi-Cherif S, Loundou A, Auquier P, Billette de Villemeur T. Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study. BMJ Open 2020; 10:e032257. [PMID: 32014871 PMCID: PMC7045096 DOI: 10.1136/bmjopen-2019-032257] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/02/2022] Open
Abstract
OBJECTIVES Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. DESIGN Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). SETTINGS PLH children were recruited from a specialised paediatric/neurological department. PARTICIPANTS The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. OUTCOMES MEASURES From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psycho-behavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). RESULTS Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20 to 81±12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. CONCLUSIONS Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions. TRIAL REGISTRATION NUMBER NCT02400528.
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Affiliation(s)
- Marie-Christine Rousseau
- Hôpital San Salvadour, Assistance Publique - Hôpitaux de Paris, Paris, Île-de-France, France
- EA 3279, Self-perceived Health Assessment Research Unit, Aix-Marseille Universite, Marseille, France
| | - Karine Baumstarck
- EA 3279, Self-perceived Health Assessment Research Unit, Aix-Marseille Universite, Marseille, France
| | - Maria Valkov
- Hôpital San Salvadour, Assistance Publique - Hôpitaux de Paris, Paris, Île-de-France, France
| | - Agnés Felce
- Hôpital Marin d'Hendaye, Assistance Publique Hopitaux de Paris, Paris, Île-de-France, France
| | - Catherine Brisse
- Comité d'Études, d'Éducation et de Soins Auprès des Personnes Polyhandicapées, Paris, France
| | | | - Anderson Loundou
- EA 3279, Self-perceived Health Assessment Research Unit, Aix-Marseille Universite, Marseille, France
| | - Pascal Auquier
- EA 3279, Self-perceived Health Assessment Research Unit, Aix-Marseille Universite, Marseille, France
| | - Thierry Billette de Villemeur
- Hôpital de La Roche Guyon, Assistance Publique - Hopitaux de Paris, Paris, Île-de-France, France
- Pathologie du développement, Sorbonne Université, UPMC, GRC ConCer-LD, Paris, France
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18
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Plessis L, Wilquin H, Pavani JB, Bouteyre E. Explaining Differences Between Sibling Relationships in Schizophrenia and Nonclinical Sibling Relationships. Front Psychiatry 2020; 11:321. [PMID: 32362849 PMCID: PMC7180867 DOI: 10.3389/fpsyt.2020.00321] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/20/2019] [Accepted: 03/31/2020] [Indexed: 01/10/2023] Open
Abstract
BACKGROUND Good sibling relationships in adulthood are known to be a protective factor for mental health. The quality of these relationships is influence by the sibship's inherent characteristics (e.g., birth order, number of brothers and sisters, sex composition, age gaps). The present study explored whether these same determinants can help to explain how individuals experience their relationship with a sibling who has been diagnosed with schizophrenia. METHOD A total of 374 adults completed the Adult Sibling Relationship Questionnaire, a scale that probes the quality of these relationships on three dimensions: warmth, conflict, and rivalry. We also collected sociodemographic data and information about family structure from each of the participants. Participants were divided into two matched groups: nonclinical sibling group (n = 187) or schizophrenia sibling group (n = 187). Regression analyses were conducted to extract possible predictors of sibling relationship quality for each group. Further regression analyses then focused exclusively on relationships with an ill sibling, in order to study the role of disease-related variables in explaining each of the three dimensions. RESULTS Results showed that sociodemographic and family structure data explained a significant proportion of variance in the sibling relationship, but solely for nonclinical siblings. When participants had a sibling with schizophrenia, we found that disease-related variables (symptom severity, frequency of treatment) also had to be included to predict the conflict dimension. CONCLUSIONS Our results suggest that feelings of conflict experienced by the schizophrenia sibling group were fueled by the symptoms the ill person displayed. Healthy brothers and sisters probably have only a poor understanding of these symptoms. This could be improved by supporting them and helping them learn more about the disease. Future research will have to prove that providing such support for siblings does indeed improve the quality of their sibling relationships and, by so doing, enhance the wellbeing of both members of a sibling dyad.
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Affiliation(s)
- Léa Plessis
- Clinical Psychology, Pysychopathology and Psychoanalysis Laboratory (LPCPP), Aix Marseille Univ, Aix-en-Provence, France
| | - Hélène Wilquin
- Clinical Psychology, Pysychopathology and Psychoanalysis Laboratory (LPCPP), Aix Marseille Univ, Aix-en-Provence, France
| | - Jean-Baptiste Pavani
- Centre for Research on the Psychology of Cognition, Language and Emotion (PsyCLE), Aix Marseille Univ, Aix-en-Provence, France
| | - Evelyne Bouteyre
- Clinical Psychology, Pysychopathology and Psychoanalysis Laboratory (LPCPP), Aix Marseille Univ, Aix-en-Provence, France
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Abstract
OBJECTIVE The impact of severe mental illnesses (SMIs) is not limited to the person with the illness but extends to their family members and the community where the patient comes from. In this review, we systematically analyse the available evidence of impacts of SMI on family members, including parents, grandparents, siblings, spouses and children. DATA SOURCES PubMed, PsycINFO, Embase and Global Index Medicus were searched from the inception of each database up to 9 November 2019. We also did manual searches of grey literature. ELIGIBILITY CRITERIA We included studies that assessed the impacts of SMI on any family member. We excluded studies in admitted clinics and acute wards to rule out the acute effect of hospitalisation. DATA EXTRACTION Two reviewers extracted data independently using the Cochrane handbook guideline for systematic reviews and agreed on the final inclusion of identified studies. RISK OF BIAS The quality of the included studies was assessed using effective public health practice project quality assessment tool for quantitative studies.The review protocol was registered in the PROSPERO database. RESULTS We screened a total of 12 107 duplicate free articles and included 39 articles in the review. The multidimensional impact of SMI included physical health problems (sleeplessness, headache and extreme tiredness.), psychological difficulties (depression and other psychological problems) and socioeconomic drift (less likely to marry and higher divorce rate and greater food insecurity). Impacts on children included higher mortality, poor school performance and nutritional problems. However, the quality of one in five studies was considered weak. CONCLUSIONS Our review indicated a high level of multidimensional impact across multiple generations. The serious nature of the impact calls for interventions to address the multidimensional and multigenerational impact of SMI, particularly in low/middle-income countries. Given the relatively high number of studies rated methodologically weak, more robust studies are indicated. PROSPERO REGISTRATION NUMBER CRD42018064123.
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Affiliation(s)
- Wubalem Fekadu
- Department of Psychiatry, Addis Ababa University, Addis Ababa, Ethiopia
- Department of Psychiatry, Bahir Dar University, Bahir Dar, Ethiopia
| | - Awoke Mihiretu
- Department of Psychiatry, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia
| | - Tom K J Craig
- Department of Health Services and Population Research, King's College London, London, London, UK
| | - Abebaw Fekadu
- Department of Psychiatry, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia
- Center for Innovative Drug Development Therapeutic Studies for Africa (CDT-Africa), College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia
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20
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McKeon G, Steel Z, Wells R, Newby JM, Hadzi-Pavlovic D, Vancampfort D, Rosenbaum S. Mental health informed physical activity for first responders and their support partner: a protocol for a stepped-wedge evaluation of an online, codesigned intervention. BMJ Open 2019; 9:e030668. [PMID: 31511290 PMCID: PMC6747645 DOI: 10.1136/bmjopen-2019-030668] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/21/2023] Open
Abstract
BACKGROUND First responders (police, fire and ambulance officers) are at a significantly increased risk of experiencing poor mental health, including depression and post-traumatic stress disorder. These conditions are associated with high rates of cardiovascular disease, in part due to low levels of physical activity (PA) and high levels of sedentary behaviour. Using a person's social support system may be an effective solution to help increase PA levels to improve mental and physical health outcomes. We will examine the efficacy of a group-based online intervention in increasing PA in first responders and their support partners, iteratively codesigned with advisors with lived experience of mental illness among first responders. METHODS This study will recruit a convenience sample of self-identified sedentary first responders and their self-selected support partners to a 10-week PA programme delivered through a private Facebook group. We will deliver education on predetermined topics related to PA and diet and provide participants with an activity tracker (Fitbit). A stepped-wedged design will be applied to compare multiple baselines to intervention and follow-up phases within subjects. Five cohorts of n=20 will be recruited, with each cohort randomised to a different baseline length. Our primary outcome will be psychological distress (Kessler-6). Secondary outcomes include feasibility, self-report and objective PA data (Simple Physical Activity Questionnaire and Fitbit accelerometry), depression and anxiety (Depression Anxiety and Stress Scale-21 items), post-traumatic stress disorder symptoms (PTSD Checklist for DSM-5), quality of life Assessment of Quality of Life-6 dimensions, sleep quality (The Pittsburgh Sleep Quality Index), suicidal ideation (Suicidal Ideation Attributes Scale) and social support for exercise. The mobile data collection platform MetricWire will be used. ETHICS AND DISSEMINATION Ethical approval was obtained from the University of New South Wales, Deupty Vice-Chancellor Research, Human Research Ethics Committee on 3 June 2019, HC180561. Findings will be published in peer-reviewed journals and disseminated at national conferences. TRIAL REGISTRATION NUMBER ACTRN12619000877189.
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Affiliation(s)
- Grace McKeon
- School of Psychiatry, UNSW, Sydney, New South Wales, Australia
| | - Zachary Steel
- School of Psychiatry, UNSW, Sydney, New South Wales, Australia
- St John of God Health Care North Richmond Hospital North, North Richmond, New South Wales, Australia
- Black Dog Institute, Prince of Wales Hospital, Sydney, New South Wales, Australia
| | - Ruth Wells
- School of Psychiatry, UNSW, Sydney, New South Wales, Australia
| | - Jill M Newby
- School of Psychology, University of New South Wales, Sydney, New South Wales, Australia
| | | | - Davy Vancampfort
- University Psychiatric Centre KU Leuven, Leuven, Belgium
- Department of Rehabilitation Sciences, KU Leuven, Leuven, Vlaanderen, Belgium
| | - Simon Rosenbaum
- School of Psychiatry, UNSW, Sydney, New South Wales, Australia
- Black Dog Institute, Prince of Wales Hospital, Sydney, New South Wales, Australia
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21
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Hajebi A, Naserbakht M, Minoletti A. Burden experienced by caregivers of schizophrenia patients and its related factors. Med J Islam Repub Iran 2019; 33:54. [PMID: 31456978 PMCID: PMC6708099 DOI: 10.34171/mjiri.33.54] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/25/2018] [Indexed: 11/05/2022] Open
Abstract
Background: Deinstitutionalization of patients with schizophrenia shifted the primary locus of care from psychiatric hospitals to family and informal caregivers. Family members often play a vital role as caregivers in the lives of individuals with schizophrenia and other serious mental illnesses. This study aimed to assess the burden experienced by the caregivers of patients with schizophrenia and to evaluate its correlation with some demographic characteristics of patients, their caregivers, and the level of expressed emotion in the family.
Methods: This descriptive-analytic study was conducted on 172 schizophrenic patients and their primary caregivers, selected from the outpatient department of a psychiatric hospital in Tehran, Iran, using convenience sampling. Caregivers were evaluated with Zarit Burden Interview and Family Questionnaire to assess the burden experienced by the caregivers and the level of expressed emotion in the family, respectively. Data were analyzed using Spearman correlation coefficient and linear regression method. Data were analyzed using SPSS software (Version 21) and significance level was set at p< 0.05.
Results: The level of burden experienced by most of primary caregivers was higher than moderate. The scores obtained in the subscales of emotional over involvement and critical comments were higher than the cutoff point in 51.7% and 64.5% of caregivers, respectively, and the scores had a significant direct correlation with the burden experienced by the caregivers. The findings of multiple linear regression showed that lower family income (β= -0.33, p< 0.001), higher duration of disorder (β= 0.19, p= 0.006), and younger age at onset of the disorder (β= -0.26, p= 0.001) were predictive of higher burden of disease on caregivers.
Conclusion: Based on the results, some demographic factors of the primary caregivers, patients, and their family significantly affected the burden experienced by the primary caregivers. Most of the caregivers had high expressed emotions and a significant direct association existed between the expressed emotions and the burden experienced.
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Affiliation(s)
- Ahmad Hajebi
- Research Center for Addiction & Risky Behaviors (ReCARB), Department of Psychiatry, Iran University of Medical Sciences, Tehran, Iran
| | - Morteza Naserbakht
- Mental Health Research Center, Tehran Institute of Psychiatry, School of Behavioral Sciences and Mental Health, Iran University of Medical Sciences, Tehran, Iran
| | - Alberto Minoletti
- Mental Health Unit, School of Public Health, Faculty of Medicine, University of Chile, Chile
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Abstract
OBJECTIVES To explore Australian mental health carers' prioritisation of key elements of caregiving and establish the extent to which particular issues contribute to carer burden. DESIGN Cross-sectional survey. SETTING All Australian States and Territories. PARTICIPANTS Responses were received from 231 Australian mental health caregivers. MAIN OUTCOME MEASURES The Involvement Evaluation Questionnaire was used to assess caregiver burden. RESULTS Smallest space analysis identified three distinct regions, which we conceptualise as: 1) promoting the safety and health of mental health consumers; 2) impact of caring on caregivers' personal lives and 3) enabling daily living functional recovery of mental health consumers. The analysis demonstrates that carers are most concerned with enabling daily living functional recovery, for which the mean value was considerably higher than the personal impact and promoting safety and health regions. In terms of the individual questionnaire items, the issues of most importance are assisting with self-care, worrying about consumers' future, finances and general health, encouraging consumer involvement in activities and concerns over the treatment consumers are receiving. CONCLUSION Caregiving often came at significant personal cost. The burden that results from caring for mental health consumers could perhaps be alleviated through the expansion of psychiatric disability services, increasing government financial support and providing tailored psychosocial interventions that meet the needs of families.
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Affiliation(s)
- Paul Morrison
- College of Science, Health, Engineering and Education, Murdoch University, Murdoch, Western Australia, Australia
| | - Norman Jay Stomski
- College of Science, Health, Engineering and Education, Murdoch University, Murdoch, Western Australia, Australia
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Smith LM, Onwumere J, Craig T, Kuipers E. Role of poor sleep in determining distress in caregivers of individuals with early psychosis. Early Interv Psychiatry 2019; 13:613-618. [PMID: 29417730 DOI: 10.1111/eip.12538] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/02/2017] [Revised: 10/18/2017] [Accepted: 12/17/2017] [Indexed: 01/04/2023]
Abstract
AIM Looking after someone in the early stages of psychosis can have a negative impact on caregivers, but there is little clarity about which interventions, if any, caregivers should be offered. This study investigated sleep disturbances in early psychosis caregivers and the relationship between their sleep quality and distress. METHOD In all, 79 caregivers of patients with a recent first episode of psychosis completed self-report measures including the Pittsburgh Sleep Quality Index (PSQI), the RAND 36-item Health Survey 1.0 (SF-36) and the Experiences of Caregiving Inventory (ECI). RESULTS All caregivers were living with their relatives with psychosis and had been providing support since the onset of illness (mean duration = 92.5 weeks, SD = 84.0); 60% (47/79) obtained a global PSQI score that exceeded the established cut-off score for clinically significant sleep problems (>5). Low "sleep duration" and "sleep disturbances" contributed the most to elevated PSQI scores, with 17.7% of participants reporting regular wakening at night due to "stress" or "worries." When predicting psychological distress (SF-36) from negative appraisals of caregiving (ECI) and poor sleep (PSQI), a significant unadjusted regression model was obtained, F(2,73) = 29.440, P = .000, R2 of .447. An estimation of the indirect effect of negative thoughts about caregiving on mental distress through poor sleep was also significant (ab = -.05, 95% CI [-.09, -.02], PM = .39). CONCLUSION Caregivers of people with psychosis may have significant problems with sleep, which relates to distress and negative appraisals about caregiving. Health services need to ask caregivers directly about such issues and consider offering brief interventions to improve sleep quality.
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Affiliation(s)
- Lindsay M Smith
- King's College London, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK.,South London and Maudsley NHS Foundation Trust, Bethlem Royal Hospital, Monks Orchard Road, Beckenham, Kent, BR3 3BX, UK
| | - Juliana Onwumere
- King's College London, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK.,South London and Maudsley NHS Foundation Trust, Bethlem Royal Hospital, Monks Orchard Road, Beckenham, Kent, BR3 3BX, UK
| | - Thomas Craig
- King's College London, Department of Health Services and Population Research, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK
| | - Elizabeth Kuipers
- King's College London, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK
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24
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Hielscher E, Diminic S, Harris M, Castle D, Lee YY, Kealton J, Whiteford H. Impact of the carer on length of hospital stay for mental health: Results from two Australian surveys. Int J Ment Health Nurs 2019; 28:436-447. [PMID: 30246493 DOI: 10.1111/inm.12543] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 08/22/2018] [Indexed: 11/30/2022]
Abstract
Informal carers play a vital role in supporting Australians living with a mental illness, including during the acute phases of illness; however, little is known about their impact on length of hospital stay. We aimed to investigate the impact of having a carer and of carer burden on length of hospital stay for mental health. Two Australian datasets were used. Data from the 2010 National Survey of High Impact Psychosis (n = 1825) were used to investigate the impact of having versus not having a carer on length of hospital stay for mental health. Data from the UQ Carer Survey 2016 (n = 105), a convenience sample of mental health carers, were used to investigate the impact of weekly hours of care (a measure of objective carer burden) on length of stay. Multiple logistic regression and correlation analyses were performed to investigate the association between carer status/burden and length of stay. Having a carer was associated with a significantly longer length of hospital stay; however, this relationship was no longer significant after adjusting for diagnosis, global functioning, depressive symptoms, deliberate self-harm, mental health outpatient contacts and type of admission. Weekly hours of care did not significantly impact on length of stay. Patients with carers had poorer functioning which may be related to longer stays. Our analysis was not able to look at subgroups of carers with different needs. Future work is required to determine other components of the admission and discharge process where having a carer is influential.
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Affiliation(s)
- Emily Hielscher
- Policy and Epidemiology Group, Queensland Centre for Mental Health Research (QCMHR), The Park Centre for Mental Health, Brisbane, Queensland, Australia.,School of Public Health, Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia.,Centre for Clinical Research, Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia
| | - Sandra Diminic
- Policy and Epidemiology Group, Queensland Centre for Mental Health Research (QCMHR), The Park Centre for Mental Health, Brisbane, Queensland, Australia.,School of Public Health, Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia
| | - Meredith Harris
- Policy and Epidemiology Group, Queensland Centre for Mental Health Research (QCMHR), The Park Centre for Mental Health, Brisbane, Queensland, Australia.,School of Public Health, Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia
| | - David Castle
- University of Melbourne and St Vincent's Hospital, Melbourne, Victoria, Australia
| | - Yong Yi Lee
- Policy and Epidemiology Group, Queensland Centre for Mental Health Research (QCMHR), The Park Centre for Mental Health, Brisbane, Queensland, Australia.,School of Public Health, Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia
| | - Jan Kealton
- Carer Consultant, Gold Coast, Queensland, Australia
| | - Harvey Whiteford
- Policy and Epidemiology Group, Queensland Centre for Mental Health Research (QCMHR), The Park Centre for Mental Health, Brisbane, Queensland, Australia.,School of Public Health, Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia.,Institute of Health Metrics and Evaluation, University of Washington, Seattle, Washington, USA
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25
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Hekmatpou D, Mohammad Baghban E, Mardanian Dehkordi L. The effect of patient care education on burden of care and the quality of life of caregivers of stroke patients. J Multidiscip Healthc 2019; 12:211-217. [PMID: 30936715 PMCID: PMC6430991 DOI: 10.2147/jmdh.s196903] [Citation(s) in RCA: 34] [Impact Index Per Article: 5.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/23/2022] Open
Abstract
Background Care for stroke patients at home is a very complicated and tough activity. Objective The study was conducted to examine the effect of patient care education on burden of care and quality of life of caregivers of stroke patients. Materials and methods The study was an educational trial conducted on 100 caregivers of the stroke patients in Al-Zahra educational hospital, Isfahan, Iran. The intervention group received some training to empower caregivers in family-oriented care in form of an educational counseling program. Data were collected and analyzed using the questionnaires, including demographic, quality of life Short Form-36, and Zarit burden of care questionnaires. Results The mean ages of caregivers were 48.52 years in the intervention and 45.14 years in the control groups. The results indicated significant differences in mean of quality of life and burden of care in the caregivers of the intervention group after intervention (P<0.01), which was insignificant in the control group. The average burden on the caregivers of both groups was significantly associated with health status, economic status, marital status, the number of children, care hours, care days, and familial relationship of the caregivers with the patients (P<0.01) before intervention. In addition, quality of life of both groups was significantly related to their health status (P<0.01) before intervention. Conclusion Patient care education reduced the burden of care and improved quality of life of the caregivers of stroke patients. Thus, to reduce the complications of caring for stroke patients, family education should be the priority of nursing and discharging procedures.
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Affiliation(s)
- D Hekmatpou
- Nursing Department, Arak University of Medical Sciences, Arak, Iran,
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26
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Stomski NJ, Morrison P. Predictors of burden in Australian mental health caregivers: a cross-sectional survey. J Ment Health 2019; 30:411-416. [PMID: 30862222 DOI: 10.1080/09638237.2019.1581340] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/27/2022]
Abstract
BACKGROUND The shift towards providing mental healthcare in the community has resulted in caregivers becoming more involved in the delivery of these services. Supporting mental health consumers can be burdensome which, in conjunction with the anguish that may result from observing their relative develop a mental illness, can lead to carers experiencing significant levels of distress. AIMS This study aimed to quantify the extent to which specific aspects of caregiving contribute to mental health burden in Australia. METHODS Participants were included if they were Australian mental health caregivers. An online questionnaire was distributed via email. Multivariate logistic regression was used to identify predictors of burden in mental health caregivers. RESULTS Completed questionnaires were collected from 231 respondents. The logistic regression analysis yielded five factors that contributed significantly to mental health caregiver burden. Of these factors, a strained atmosphere and regularly carrying out tasks for consumers were the two strongest predictors of burden. CONCLUSION Community health professionals could focus on interpersonal relationships between family members, access to disability and financial support services, and carers' views about the quality of healthcare provided to consumers. Addressing these issues may decrease carer burden and improve the quality of life for all family members.
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Affiliation(s)
- N J Stomski
- College of Science, Health, Engineering, and Education, Murdoch University, Perth, Australia
| | - P Morrison
- College of Science, Health, Engineering, and Education, Murdoch University, Perth, Australia
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27
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Does improvement in symptoms and quality of life in chronic schizophrenia reduce family caregiver burden? Psychiatry Res 2019; 271:402-404. [PMID: 30530058 PMCID: PMC6382537 DOI: 10.1016/j.psychres.2018.12.005] [Citation(s) in RCA: 20] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/09/2018] [Revised: 12/02/2018] [Accepted: 12/02/2018] [Indexed: 11/23/2022]
Abstract
The longitudinal association of changes in clinical status among adults with schizophrenia and changes in family caregiver burden has not been demonstrated. Using data from the NIMH-funded CATIE schizophrenia trial (n = 446 family caregivers), we examined the association of changes in patient symptoms and quality of life with changes in measures of family caregiver burden. Clinical changes in patient symptoms and quality of life were not significantly associated with changes in family caregiver burden. The weak association likely reflects that small clinical changes in chronically ill adults are insufficient to affect long established experiences of burden.
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Smith LM, Onwumere J, Craig T, Kuipers E. Caregiver correlates of patient-initiated violence in early psychosis. Psychiatry Res 2018; 270:412-417. [PMID: 30308465 DOI: 10.1016/j.psychres.2018.09.011] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/07/2017] [Revised: 08/29/2018] [Accepted: 09/07/2018] [Indexed: 11/16/2022]
Abstract
Patient-initiated violence may pose a significant risk to the strength and longevity of informal caregiving relationships in psychosis. We aimed to assess caregiver reports of patient-initiated violence in early psychosis and to examine the relationship between violent incidents and appraisals of caregiving, perceived mental wellbeing in caregivers and Expressed Emotion (EE) in the caregiving relationship. Eighty psychosis caregivers were recruited via Early Intervention (EI) psychosis services in London, United Kingdom. Caregivers were questioned about their experiences of patient-initiated violence during the semi-structured Camberwell Family Interview, and completed the Experience of Caregiving Inventory and the RAND SF-36 health survey in a cross-sectional experimental design. One third of the sample reported at least one incident of patient-initiated violence. Reports of violence were associated with poorer mental wellbeing scores amongst caregivers and more negative appraisals of caregiving. Patient-initiated violence also correlated with greater criticism and hostility expressed towards patients, and a rating of high EE in caregiver reports. The results underscore the need to ask explicitly and routinely about the physical safety of caregivers looking after someone with psychosis. Families should be directed towards appropriate interventions to help manage any risk of violence and the likely negative impact on the caregiving relationship.
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Affiliation(s)
- Lindsay M Smith
- King's College London, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK; South London and Maudsley NHS Foundation Trust, Bethlem Royal Hospital, Monks Orchard Road, Beckenham, Kent, BR3 3BX, UK
| | - Juliana Onwumere
- King's College London, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK; South London and Maudsley NHS Foundation Trust, Bethlem Royal Hospital, Monks Orchard Road, Beckenham, Kent, BR3 3BX, UK.
| | - Thomas Craig
- King's College London, Department of Health Services and Population Research, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK
| | - Elizabeth Kuipers
- King's College London, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF, UK
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29
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Stomski NJ, Morrison P, Sealey M, Skeffington P, O'Brien G. The association between gratitude and burden in Australian mental health carers: a cross-sectional study. Scand J Caring Sci 2018; 33:215-221. [PMID: 30311247 DOI: 10.1111/scs.12623] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/16/2017] [Accepted: 09/17/2018] [Indexed: 01/29/2023]
Abstract
The level of carer burden has increased as carers take on more responsibility for mental health consumers as a result of the contemporary shift in the delivery of services from institutional to community settings. Interventions are required to mitigate mental health carer burden. Therefore, we examined the association between dispositional gratitude and burden in a cross-sectional survey of 231 Australian mental health carers. Dispositional gratitude was assessed by the S-GRAT, and carer burden was measured using the Involvement Evaluation Questionnaire. The results of a general linear model demonstrated that higher levels of a lack of sense of deprivation were significantly associated with lower levels of tension, worrying and urging. In contrast, higher levels of simple appreciation were significantly associated with higher levels of supervision, worrying and urging. Our findings highlight that gratitude interventions should focus on promoting a lack of sense of deprivation and appreciation of others in order to reduce mental health carer burden.
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Affiliation(s)
| | - Paul Morrison
- School of Health Professions, Murdoch University, Perth, WA, Australia
| | - Margaret Sealey
- School of Health Professions, Murdoch University, Perth, WA, Australia
| | - Petra Skeffington
- School of Health Professions, Murdoch University, Perth, WA, Australia
| | - Geraldine O'Brien
- School of Psychology and Exercise Science, Murdoch University, Perth, WA, Australia
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30
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Fitryasari R, Yusuf A, Nursalam, Tristiana RD, Nihayati HE. Family members' perspective of family Resilience's risk factors in taking care of schizophrenia patients. Int J Nurs Sci 2018; 5:255-261. [PMID: 31406834 PMCID: PMC6626218 DOI: 10.1016/j.ijnss.2018.06.002] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/05/2017] [Revised: 04/09/2018] [Accepted: 06/12/2018] [Indexed: 11/24/2022] Open
Abstract
OBJECTIVES The study was conducted to illustrate the risk factors of family resilience when taking care of patients with schizophrenia. METHODS The research used qualitative design with an interpretive phenomenology approach, with in-depth interviews. The subjects were 15 family members who cared for patients with schizophrenia at the Menur Mental Hospital, Surabaya, Indonesia. The samples were obtained by purposive sampling technique. The data was collected by interview and using field notes, then analyzed by Collaizi technique. RESULTS This research produced two themes, they were care burden and stigma. Care burdens felt by families were confusion about the illness, emotional, physical, time, financial and social burdens, which leads to decrease in family quality of life. Families also experienced stigma called labeling, stereotyping, separation and discrimination. Stigmas meant that families faced psychological, social and intrapersonal consequences. This decreased the family quality of life and functionality of the family, and there were opportunities for negative results to family resilience. Health workers, especially psychiatric nurses, should review care burdens and stigma to develop nursing interventions so families are able to achieve resilience. CONCLUSIONS This research explained how care burden and stigma are risk factors that must be managed by families to survive, rise up, and become better in caring for patients with schizophrenia. Nurses have a central role in assessing the level of care burdens and stigma in order to help families achieve resilience. Further research may focus on family-based nursing interventions to lower care burden, and community-based interventions to reduce stigma.
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Affiliation(s)
- Rizki Fitryasari
- Nursing Faculty, Airlangga University, Surabaya, Indonesia
- Doctoral Student’s of Health Science of Public Health Faculty, Airlangga University, Surabaya, Indonesia
| | - Ah Yusuf
- Nursing Faculty, Airlangga University, Surabaya, Indonesia
| | - Nursalam
- Nursing Faculty, Airlangga University, Surabaya, Indonesia
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31
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Sruamsiri R, Mori Y, Mahlich J. Productivity loss of caregivers of schizophrenia patients: a cross-sectional survey in Japan. J Ment Health 2018; 27:583-587. [DOI: 10.1080/09638237.2018.1466048] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/20/2022]
Affiliation(s)
| | - Yasuhiro Mori
- Department of Psychiatry, Aichi Medical University, Nagakute, Japan, and
| | - Jörg Mahlich
- Health Economics, Janssen Pharmaceutical K.K, Tokyo, Japan,
- Düsseldorf Institute for Competition Economics (DICE), University of Düsseldorf, Düsseldorf, Germany
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32
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Fitryasari R, Nursalam N, Yusuf A, Hargono R, Chan CM. Predictors of Family Stress in Taking Care of Patients with Schizophrenia. JURNAL NERS 2018. [DOI: 10.20473/jn.v13i1.7762] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/22/2022] Open
Abstract
Introduction: Taking care of schizophrenia patients is challenging and causes stress for the family involved. The study was conducted to identify the predictors of family stress present when taking care of a patient with schizophrenia. The ABCX Stress Theory of Hill was used as the theoretical framework.Methods: This study used a correlational design. The sample was 137 families who were caring for patients with schizophrenia at the Menur Mental Hospital, Surabaya, Indonesia. The sample was obtained by way of purposive sampling. The data was collected by a questionnaire and analysed by multiple regression to determine the relationship of the family’s structure, family knowledge, the burden of care, stigma, social support, the patient's illness duration, the patient’s frequency of relapse and the patient's severity level with family stress.Results: The results showed that the family’s stress was predicted by the family’s structure (p=0.029), stigma (p=0.000), the burden of care (p=0.000), and the patient’s frequency of relapse (p=0.005). The burden of care was the strongest predictor of family stress (Beta= 0.619).Conclusion: The patient's frequency of relapse and stigma were other kinds of family stressor. The stressors stimulated a negative perception, called the care burden. Limited adequacy of the family structure-function will inhibit the family in using other resources, creating family stress. Nurses may develop an assessment format that consists of the family stress predictors in order to create a nursing care plan specific to reframing the techniques of family stress management.
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33
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Aylaz R, Yıldız E. The care burden and coping levels of chronic psychiatric patients' caregivers. Perspect Psychiatr Care 2018. [PMID: 28635006 DOI: 10.1111/ppc.12228] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/01/2022] Open
Abstract
PURPOSE This descriptive study was conducted in order to determine care burden of caregivers of chronic psychiatric patients and their levels of coping with stress. METHODS The study was conducted with 134 caregivers of chronic psychiatric patients. The following data collection tools were used: the personal information form, the ZBI and SCI. The study participants were selected from the population by using an improbable random sampling method. RESULTS The average age of the caregivers was 49.95±13.68 and the majority were married and primary school graduates. CONCLUSION This study determined that caregivers experienced a high level of burden. However, while the deal with their difficulties of providing effective care was found to have more coping methods they use.
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Affiliation(s)
- Rukuye Aylaz
- Associate Professor, PhD, Department of Public Health Nursing, the Faculty of Health Sciences, Inonu University, Malatya, Turkey
| | - Erman Yıldız
- PhD Student, Research Assistant, Department of Psychiatric Nursing, Faculty of Health Sciences, Inonu University, Malatya, Turkey
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34
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Ribé JM, Salamero M, Pérez-Testor C, Mercadal J, Aguilera C, Cleris M. Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support. Int J Psychiatry Clin Pract 2018; 22:25-33. [PMID: 28799427 DOI: 10.1080/13651501.2017.1360500] [Citation(s) in RCA: 100] [Impact Index Per Article: 14.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/01/2023]
Abstract
OBJECTIVE Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. METHODS 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. RESULTS Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. CONCLUSIONS There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.
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Affiliation(s)
- José M Ribé
- a Institut Universitari Salut Mental Vidal i Barraquer, Universitat Ramon Llull , Barcelona , Spain.,b Centre de Salut Mental d'Adults Sant Andreu , Barcelona , Spain
| | - Manel Salamero
- a Institut Universitari Salut Mental Vidal i Barraquer, Universitat Ramon Llull , Barcelona , Spain
| | - Carles Pérez-Testor
- a Institut Universitari Salut Mental Vidal i Barraquer, Universitat Ramon Llull , Barcelona , Spain
| | - Josep Mercadal
- a Institut Universitari Salut Mental Vidal i Barraquer, Universitat Ramon Llull , Barcelona , Spain
| | | | - Margarida Cleris
- b Centre de Salut Mental d'Adults Sant Andreu , Barcelona , Spain
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Dikeç G, Ergün G, Gumus F. Relation Among Anxiety and Family Burden in Primary First-Degree Caregivers of Outpatients with Mental Disorders in Turkey. Issues Ment Health Nurs 2018; 39:142-150. [PMID: 29193998 DOI: 10.1080/01612840.2017.1373174] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/18/2022]
Abstract
The aim of this study was to determine the relation among anxiety and family burden in primary first-degree relative caregivers of outpatients with mental disorders in Turkey. Data were collected with patients' primary first-degree relative caregivers via the Information Form, Beck Anxiety Inventory (BAI), and Perceived Family Burden Scale (PFBS). In all, 481 caregivers (325 women and 156 men) participated in this study. Based on this study's results, primary caregivers of patients with mental disorders had a moderate level anxiety, and as anxiety increased, family burden also increased. Those results suggest that mental health nurses should plan interventions not only for patients, but also for their family member or their caregivers to decrease anxiety level.
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Affiliation(s)
- Gül Dikeç
- a Department of Nursing , Faculty of Heath Sciences, Istinye University , Istanbul , Turkey
| | - Gül Ergün
- b Department of Emergency Aid and Disaster Management , Faculty of Heath Sciences, Mehmet Akif Ersoy University , Burdur , Turkey
| | - Funda Gumus
- c Department of Nursing , School of Health, Dicle University , Diyarbakır , Turkey
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Mora-Castañeda B, Márquez-González M, Fernández-Liria A, de la Espriella R, Torres N, Arenas Borrero Á. Variables demográficas y clínicas relacionadas con la carga y el afrontamiento de los cuidadores de personas diagnosticadas de esquizofrenia. ACTA ACUST UNITED AC 2018; 47:13-20. [DOI: 10.1016/j.rcp.2016.10.005] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/27/2016] [Revised: 10/04/2016] [Accepted: 10/31/2016] [Indexed: 01/31/2023]
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Salazar-Torres LJ, Castro-Alzate ES, Dávila-Vásquez PX. Caregiver Burden in Families of People With Mental Illness Linked to the Day Hospital Program of a Tertiary Institution in the City of Cali (Colombia). ACTA ACUST UNITED AC 2017; 48:88-95. [PMID: 30981332 DOI: 10.1016/j.rcp.2017.08.002] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/28/2016] [Revised: 05/07/2017] [Accepted: 08/04/2017] [Indexed: 10/18/2022]
Abstract
OBJECTIVE To establish the occurrence of caregiver syndrome in caregivers of people with mental illness participating in the Day Hospital Program of a tertiary institution in the city of Cali. MATERIAL AND METHODS A descriptive, cross-sectional observational study was carried out to evaluate the occurrence of overload syndrome in 70 caregivers of people with mental illness, through interviews and the formal application of the Zarit scale and the WHO-DAS 2.0 questionnaire. RESULTS It was established that 68.6% of the participating population presented some level of overload. The caregiver profile corresponds to women, over the age of 55, who belonged to the subsidized health system; earning a low income, and with an average of 8 years in caregiver role for at least 12 hours per day. The long time dedicated to the role's activities and the level of demand resulting from the degree of disability of the person receiving care, appear as associated factors for the presence of higher levels of overload for the caregiver, for which they are a factor to consider when implementing interventions and research processes in which the caregiver is involved as a key agent for improving the quality of life of people with mental illness.
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Affiliation(s)
- Lenis Judith Salazar-Torres
- Programa académico de Terapia Ocupacional, Escuela de Rehabilitación Humana, Universidad del Valle, Cali, Colombia.
| | - Elvis Siprian Castro-Alzate
- Programa académico de Terapia Ocupacional, Escuela de Rehabilitación Humana, Universidad del Valle, Cali, Colombia
| | - Paola Ximena Dávila-Vásquez
- Programa académico de Terapia Ocupacional, Escuela de Rehabilitación Humana, Universidad del Valle, Cali, Colombia
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Lloyd J, Lloyd H, Fitzpatrick R, Peters M. Treatment outcomes in schizophrenia: qualitative study of the views of family carers. BMC Psychiatry 2017; 17:266. [PMID: 28732482 PMCID: PMC5521073 DOI: 10.1186/s12888-017-1418-8] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/16/2016] [Accepted: 07/04/2017] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Schizophrenia is a complex, heterogeneous disorder, with highly variable treatment outcomes, and relatively little is known about what is important to patients. The aim of the study was to understand treatment outcomes informal carers perceive to be important to people with schizophrenia. METHOD Qualitative interview study with 34 individuals and 8 couples who care for a person with schizophrenia/schizoaffective disorder. Interviews were transcribed verbatim and analysed by a thematic framework based approach. RESULTS Carers described well-recognised outcomes of importance, alongside more novel outcomes relating to: Safety (of the patient/others); insight (e.g. into non-reality of psychotic phenomena); respite from fear, distress or pain; socially acceptable behaviour; getting out of the house; attainment of life milestones; changes in personality and/or temperament; reduction of vulnerability to stress; and several aspects of physical health. CONCLUSIONS These findings have the potential to inform the development of patient- or carer- focused outcome measures that take into account the full range of domains that carers feel are important for patients.
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Affiliation(s)
- Joanne Lloyd
- School of Psychology, Sport and Exercise, Staffordshire University, Stoke on Trent, UK
| | - Helen Lloyd
- Peninsula Medical School, Plymouth University, Plymouth, Devon UK
| | - Ray Fitzpatrick
- Nuffield Department of Population Health, University of Oxford, Old Road Campus, Oxford, OX3 7LF UK
| | - Michele Peters
- Nuffield Department of Population Health, University of Oxford, Old Road Campus, Oxford, OX3 7LF UK
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Development and Validation of a Questionnaire to Measure Quality of Life in Caregivers of Patients with Schizophrenia and Affective Disorders (SAC-QoL). IRANIAN JOURNAL OF PSYCHIATRY AND BEHAVIORAL SCIENCES 2017. [DOI: 10.5812/ijpbs.9195] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
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Stanley S, Balakrishnan S, Ilangovan S. Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia. J Ment Health 2017; 26:134-141. [PMID: 28385096 DOI: 10.1080/09638237.2016.1276537] [Citation(s) in RCA: 73] [Impact Index Per Article: 9.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Abstract
BACKGROUND Caregiving in schizophrenia is a demanding and exhausting activity that challenges the physical and emotional resources of family caregivers. In traditional societies such as India, this is further compounded by illiteracy, ignorance and religious and cultural explanations attributed to mental illness. AIMS This study aimed to assess primary caregivers of persons with schizophrenia in terms of their perceived burden, manifestation of psychological distress and quality of life (QOL). METHODS The study used a quantitative cross-sectional design and survey methodology to collect data from caregivers in a hospital setting in Thanjavur, India. Standardized instruments were used to collect data from patients and their caregivers. RESULTS High perceived burden and lower QOL were seen in the majority of caregivers. They also manifested high levels of anxiety and depression. Patient characteristics such as age, gender, symptoms and duration of illness did not influence the perceived burden of caregivers, while positive and negative symptoms and the duration of illness were correlated with their QOL. CONCLUSIONS Findings indicate the need for intervention for family caregivers to enable them cope more effectively with the demands of caregiving. Psychoeducation and participation in peer support groups are advocated as low resource and effective outcome strategies for caregivers in India.
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Affiliation(s)
- Selwyn Stanley
- a Faculty of Education , Health and Wellbeing, University of Wolverhampton , Wolverhampton , UK
| | | | - S Ilangovan
- c Department of Psychiatry , Thanjavur Medical College , Thanjavur , India
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Gkintoni E, Pallis EG, Bitsios P, Giakoumaki SG. Neurocognitive performance, psychopathology and social functioning in individuals at high risk for schizophrenia or psychotic bipolar disorder. J Affect Disord 2017; 208:512-520. [PMID: 27810272 DOI: 10.1016/j.jad.2016.10.032] [Citation(s) in RCA: 26] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/21/2016] [Revised: 09/05/2016] [Accepted: 10/22/2016] [Indexed: 11/26/2022]
Abstract
INTRODUCTION Although cognitive deficits are consistent endophenotypes of schizophrenia and bipolar disorder, findings in psychotic bipolar disorder (BDP) are inconsistent. In this study we compared adult unaffected first-degree relatives of schizophrenia and BDP patients on cognition, psychopathology, social functioning and quality of life. METHODS Sixty-six unaffected first-degree relatives of schizophrenia patients (SUnR), 36 unaffected first-degree relatives of BDP patients (BDPUnR) and 102 controls participated in the study. Between-group differences were examined and Discriminant Function Analysis (DFA) predicted group membership. RESULTS Visual memory, control inhibition, working memory, cognitive flexibility and abstract reasoning were linearly impaired in the relatives' groups. Poorer verbal fluency and processing speed were evident only in the SUnR group. The SUnR group had higher depressive and somatization symptoms while the BDPUnR group had higher anxiety and lower social functioning compared with the controls. Individuals with superior cognition were more likely to be classified as controls; those with higher social functioning, prolonged processing speed and lower anxiety were more likely to be classified as SUnR. LIMITATIONS The relatives' sample is quite heterogeneous; the effects of genetic or environmental risk-factors were not examined. CONCLUSIONS Cognitive functions mediated by a fronto-parietal network, show linear impairments in unaffected relatives of BDP and schizophrenia patients; processing speed and verbal fluency impairments were evident only in schizophrenia relatives. Self-perceived symptomatology and social functioning also differ between schizophrenia and BDP relatives. The continuum seen in patients in several indices was also seen in the cognitive impairments in unaffected relatives of schizophrenia and BDP patients.
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Affiliation(s)
- Evgenia Gkintoni
- Department of Psychology, Gallos University campus, University of Crete, Rethymno, Crete, Greece
| | - Eleftherios G Pallis
- Department of Medicine, School of Health Sciences, National and Kapodistrian University of Athens, Greece
| | - Panos Bitsios
- Department of Psychiatry & Behavioral Sciences, Faculty of Medicine, University of Crete, Heraklion, Crete, Greece
| | - Stella G Giakoumaki
- Department of Psychology, Gallos University campus, University of Crete, Rethymno, Crete, Greece.
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Caqueo-Urízar A, Rus-Calafell M, Craig TKJ, Irarrazaval M, Urzúa A, Boyer L, Williams DR. Schizophrenia: Impact on Family Dynamics. Curr Psychiatry Rep 2017; 19:2. [PMID: 28097634 DOI: 10.1007/s11920-017-0756-z] [Citation(s) in RCA: 34] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/17/2023]
Abstract
In many societies, family members are now the primary caregivers of mental health patients, taking on responsibilities traditionally under the purview of hospitals and medical professionals. The impact of this shift on the family is high, having both an emotional and economic toll. The aim of this paper is to review the main changes that occur in family dynamics for patients with schizophrenia. The article addresses three central themes: (i) changes in the family at the onset of the disorder, (ii) consequences for family members because of their caregiver role, and (iii) family interventions aimed at improving the complex dynamics within the family. After analyzing and discussing these themes, it is observed that despite advances in the field, the viability of taking care of a patient with schizophrenia by the family remains a challenge. Improving care will require commitments from the family, the mental health service system, and local and national governments for greater investments to improve the quality of life of society in general and individuals with schizophrenia in particular.
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Affiliation(s)
- Alejandra Caqueo-Urízar
- Escuela de Psicología y Filosofía, Universidad de Tarapacá, Avenida 18 de Septiembre 2222, Arica, Chile.
- Department of Social and Behavioral Sciences, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA, 02115-6018, USA.
| | - Mar Rus-Calafell
- Department of Health Service and Population Research, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Thomas K J Craig
- Department of Health Service and Population Research, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Matias Irarrazaval
- Departamento de Psiquiatría, Facultad de Medicina, Hospital Clínico Universidad de Chile, Santiago, Chile
- Instituto Milenio para la Investigación en Depresión y Personalidad, Santiago, Chile
| | - Alfonso Urzúa
- Universidad Católica del Norte, Avda. Angamos 0610, Antofagasta, Chile
| | - Laurent Boyer
- Aix-Marseille University, EA 3279 - Public Health, Chronic Diseases and Quality of Life - Research Unit, 13005, Marseille, France
| | - David R Williams
- Department of Social and Behavioral Sciences, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA, 02115-6018, USA
- Department of African and African American Studies, Harvard University, Cambridge, MA, USA
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Burden and Distress in Caregivers of Patients With Panic Disorder and Agoraphobia. J Nerv Ment Dis 2017; 205:23-30. [PMID: 27861457 DOI: 10.1097/nmd.0000000000000614] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
We estimated the prevalence, severity, and correlates of burden and distress in caregivers of patients with panic disorder and agoraphobia. The instruments used in this cross-sectional study with 40 caregivers and 40 outpatients were Carer Burden Interview (CBI), Family Burden Interview Schedule (FBIS-BR), Self-Reporting Questionnaire (SRQ), Panic and Agoraphobia Scale (PAS), and Mini-international Neuropsychiatric Interview. Bivariate analyses were followed by regression analyses. The patients' mean PAS score was 29.6, and the mean scores in the caregivers' burden scales were 27 (CBI) and 1.64 (FBIS-BR). Distress (or common mental disorder [CMD]) occurred in 37.5% and was associated with higher burden. In the multivariate analysis, the SRQ score was predicted by female sex and worse self-evaluation of health, the CBI score by CMD and public service, the FBIS-BR score by CMD and not living with the patient, the FBIS-objective score by CMD and being employed, the FBIS-subjective score by CMD, and the level of worry by the severity of patients' avoidance and panic attacks.
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Comparison of Caregiver Burden in First Episode Versus Chronic Psychosis. Arch Psychiatr Nurs 2016; 30:768-773. [PMID: 27888973 DOI: 10.1016/j.apnu.2016.07.011] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/01/2016] [Revised: 07/13/2016] [Accepted: 07/27/2016] [Indexed: 11/23/2022]
Abstract
The aim of this study was to compare burden on caregivers of patients with first episode psychosis and caregivers of those with chronic psychosis. The study sample consisted of 39 caregivers of patients with first episode psychosis and 40 caregivers of patients with chronic psychosis. The Caregiver Burden Inventory (CBI) was used for data collection. The average caregiver burden in caregivers of patients with chronic psychosis was significantly higher than that in caregivers of patients with first episode psychosis. With regard to the subscales of CBI, there was a significantly higher level of burden in terms of time dependence, development, physical burden, and social burden in caregivers of patients with chronic psychosis than in caregivers of patients with first episode psychosis, while no such difference could be detected for the emotional burden. The absence of a difference in emotional burden suggests that caregivers of first episode psychosis may be going through an intense emotional experience, placing them in a high-risk status, despite an average caregiving experience duration of 11 months. Family interventions targeting the caregivers of patients with chronic psychosis or patients with first episode psychosis should be planned in accordance with the specific needs of these caregiver groups. It is also recommended to conduct programs involving the concurrent participation of the caregivers of patients with first episode psychosis and caregivers of patients with chronic psychosis and interventional programs such as "early psychosis support" for the caregivers of patients with first episode psychosis.
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Bulut M, Arslantaş H, Ferhan Dereboy İ. Effects of Psychoeducation Given to Caregivers of People With a Diagnosis of Schizophrenia. Issues Ment Health Nurs 2016; 37:800-810. [PMID: 27696929 DOI: 10.1080/01612840.2016.1222039] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/20/2022]
Abstract
The aim of this study was to evaluate the effectiveness of psychoeducation given to caregivers of patients diagnosed with schizophrenia on their perceptions of burden and on clinical course of patients. This was a quasi-experimental study with pre-post tests and a control group and designed as a nonrandomized controlled intervention trial. While the patients in both the intervention and the control group received treatment as usual (TAU), only the caregivers in the study group were offered two sessions of psychoeducation a week for one month, with a total of eight sessions. Effectiveness of the psychoeducation given was evaluated by comparing scores of Perceived Family Burden Scale (PFBS) and Positive and Negative Syndrome Scale (PANSS) obtained before and three months after delivery between the intervention and the control groups. Mean PFBS burden scores of the control group at baseline and follow-up were 45.7 and 44.5, respectively. Mean PFBS burden scores of the intervention group were 45.2 at baseline and 38.6 at follow-up. Analysis of variance revealed significant and medium to large size interaction effects of time and group factors on total burden scores of family members (F1.58 = 5.59; p < 0.05; ηp2 = 0.09) and on total PANSS scores of patients (F1.58 = 104.78; p < 0.001; ηp2 = 0.64). Our findings suggest that psychoeducation offered to the caregivers along with TAU offered to patients might result in diminished perceptions of burden among caregivers and enhanced improvement in the clinical course of patients as a result of psychoeducation offered to caregivers.
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Affiliation(s)
- Müge Bulut
- a Adnan Menderes University, Research and Teaching Hospital Psychiatry Clinic , Aydin , Turkey
| | - Hülya Arslantaş
- b Adnan Menderes University , Aydin Health Sciences Institute Department of Mental Health Nursing , Aydin , Turkey
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Noghani F, Seyedfatemi N, Karimirad MR, Akbarzadeh A, Hasanpour-Dehkordi A. Health Related Quality of Life in Family Caregivers of Patients Suffering from Mental Disorders. J Clin Diagn Res 2016; 10:VC05-VC09. [PMID: 28050483 DOI: 10.7860/jcdr/2016/19671.8792] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/21/2016] [Accepted: 04/26/2016] [Indexed: 11/24/2022]
Abstract
INTRODUCTION In the light of the advances in treatment measures and early discharge of patients with mental disorders from psychiatric hospitals, families play important role in caring for such patients. AIM The aim of this study is to determine the Quality of Life (QoL) of the family caregivers of patients with mental disorders. MATERIALS AND METHODS This cross-sectional study was conducted in teaching health care centers affiliated with medical universities in Tehran, Iran. Sampling was conducted by convenience random technique. Participants were 238 family caregivers of mental disorder patients and the Short-Form Health Survey Questionnaire was used to gather data. The data were analyzed by Spearman's correlation, t-test and ANOVA in SPSS 18.0. RESULTS The women's mean QoL was lower than the men's. Regarding family relationship with the patients, the lowest QoL was observed among the mothers. There was a significant relationship between the caregivers QoL and economic status, the caregivers gender, family relationship with the patients and the patients' gender (p<0.05). CONCLUSION The caregivers of mental disorder patients have lower QoL compared with general population. Appropriately developed plans should be implemented to improve QoL among the family caregivers of these patients.
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Affiliation(s)
- Fatemeh Noghani
- Assistant Professor, Department of Nursing and Midwifery, Tehran University of Medical Sciences , Tehran, Iran
| | - Naiemeh Seyedfatemi
- Associate Professor, Center for Nursing Care Research, Iran University of Medical Sciences , Tehran, Iran
| | | | - Arash Akbarzadeh
- Lecturer, Department of Nursing and Midwifery, Tehran University of Medical Sciences , Tehran, Iran
| | - Ali Hasanpour-Dehkordi
- Assistant Professor, Nursing and Midwifery Palliative Care Research Center and Department of Medical-Surgical Nursing, Shahrekord University of Medical Sciences , Shahrekord, Iran
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Gater A, Rofail D, Marshall C, Tolley C, Abetz-Webb L, Zarit SH, Berardo CG. Assessing the Impact of Caring for a Person with Schizophrenia: Development of the Schizophrenia Caregiver Questionnaire. PATIENT-PATIENT CENTERED OUTCOMES RESEARCH 2016; 8:507-20. [PMID: 25680337 PMCID: PMC4662958 DOI: 10.1007/s40271-015-0114-3] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Indexed: 01/27/2023]
Abstract
Background The responsibilities of caring for a person with schizophrenia may significantly impact informal caregivers’ lives. The Zarit Burden
Interview (ZBI) was originally developed to assess burden among caregivers of people with Alzheimer’s disease. Objective This research was conducted to inform the development of a revised version of the ZBI, relevant to caregivers of people with schizophrenia. Methods Based on published qualitative research, the questionnaire was reviewed and modified in accordance with industry-standard guidelines. The resulting questionnaire [the Schizophrenia Caregiver Questionnaire (SCQ)] was then completed by 19 caregivers during cognitive debriefing interviews to assess understanding, relevance and comprehensiveness. Results Review of the ZBI resulted in a number of operational changes to improve face validity and potential sensitivity. Further questions were added based on key concepts identified in existing literature and minor phrasing alterations were made to improve content validity. Findings from caregiver interviews supported the content validity of the SCQ. Conclusion The SCQ provides a comprehensive view of caregivers’ subjective experiences of caregiving and demonstrated strong face and content validity. The questionnaire will be important in both clinical assessment and evaluating the efficacy of interventions designed to reduce or alleviate caregiver burden. Future research will seek to establish the psychometric validity of the questionnaire.
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Affiliation(s)
- Adam Gater
- Adelphi Values Ltd, Adelphi Mill, Bollington, Cheshire, SK10 5JB, UK.
| | - Diana Rofail
- Roche Products Ltd, Hexagon Place, 6 Falcon Way, Welwyn Garden City, Hertfordshire, UK
| | - Chris Marshall
- Adelphi Values Ltd, Adelphi Mill, Bollington, Cheshire, SK10 5JB, UK
| | - Chloe Tolley
- Adelphi Values Ltd, Adelphi Mill, Bollington, Cheshire, SK10 5JB, UK
| | - Linda Abetz-Webb
- Adelphi Values Ltd, Adelphi Mill, Bollington, Cheshire, SK10 5JB, UK
| | - Steven H Zarit
- Department of Human Development and Family Studies, College of Health and Human Development, The Pennsylvania State University, University Park, PA, USA
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Kuriakose RK, Khan Z, Almeida DRP, Braich PS. Depression and burden among the caregivers of visually impaired patients: a systematic review. Int Ophthalmol 2016; 37:767-777. [PMID: 27473225 DOI: 10.1007/s10792-016-0296-2] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/25/2016] [Accepted: 07/14/2016] [Indexed: 11/29/2022]
Abstract
Caregiving has evolved as an important issue not only for those receiving care, but for those providing it as well. While caregiving allows those with disabilities to better adapt, it has been shown to take a toll on the caregiver on various levels, such as invoking depression and burden. The purpose of this study was to perform a systematic review of the literature pertaining to depression and burden among caregivers of patients with visual impairment. A comprehensive literature search using multiple databases was conducted to include all articles on burden of care or depression among the caregivers of the visually impaired. Nine studies were included in this review. There was demonstrable association of depression and burden with the caregivers of the visually impaired. Communication theory, emotional contagion, and care burden were cited as factors associated with depression in these studies. A number of other elements were also identified to play a role in depression and burden, such as providing greater hours of supervision to the patient, multiple chronic conditions in the patient or caregiver, patient not completing vision rehabilitation, and female gender of the caregiver. By identifying those at risk for decreased quality of life outcomes, health care providers may be able to alter the management of the visually impaired, such as advocating the use of vision rehabilitation clinics in order to minimize the caregiver burden and depression.
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Affiliation(s)
- Robin K Kuriakose
- Department of Ophthalmology, Nelson Clinic, Virginia Commonwealth University School of Medicine, 401 N 11th St, Suite 439, 4th Floor, Richmond, VA, 23298, USA
| | - Zainab Khan
- Department of Ophthalmology, Hotel Dieu Hospital, Queen's University, Kingston, ON, Canada
| | | | - Puneet S Braich
- Department of Ophthalmology, Nelson Clinic, Virginia Commonwealth University School of Medicine, 401 N 11th St, Suite 439, 4th Floor, Richmond, VA, 23298, USA.
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Koutra K, Simos P, Triliva S, Lionis C, Vgontzas AN. Linking family cohesion and flexibility with expressed emotion, family burden and psychological distress in caregivers of patients with psychosis: A path analytic model. Psychiatry Res 2016; 240:66-75. [PMID: 27085666 DOI: 10.1016/j.psychres.2016.04.017] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/15/2015] [Revised: 02/12/2016] [Accepted: 04/08/2016] [Indexed: 11/26/2022]
Abstract
The present study aimed to evaluate a path analytic model accounting for caregivers' psychological distress that takes into account perceived family cohesion and flexibility, expressed emotion and caregiver's burden associated with the presence of mental illness in the family. 50 first-episode and 50 chronic patients diagnosed with schizophrenia or bipolar disorder (most recent episode manic severe with psychotic features) recruited from the Inpatient Psychiatric Unit of the University Hospital of Heraklion, Crete, Greece, and their family caregivers participated in the study. Family functioning was assessed in terms of cohesion and flexibility (FACES-IV), expressed emotion (FQ), family burden (FBS) and caregivers' psychological distress (GHQ-28). Structural equation modelling was used to evaluate the direct and indirect effects of family dynamics on caregivers' psychological distress. The results showed that neither family cohesion nor family flexibility exerted significant direct effects on caregivers' psychological distress. Instead, the effect of flexibility was mediated by caregivers' criticism and family burden indicating an indirect effect on caregivers' psychological distress. These results apply equally to caregivers of first episode and chronic patients. Family interventions aiming to improve dysfunctional family interactions by promoting awareness of family dynamics could reduce the burden and improve the emotional well-being of family caregivers.
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Affiliation(s)
- Katerina Koutra
- Department of Psychiatry and Behavioral Sciences, Faculty of Medicine, University of Crete, Heraklion, Greece; Department of Social Medicine, Faculty of Medicine, University of Crete, Heraklion, Greece.
| | - Panagiotis Simos
- Department of Psychiatry and Behavioral Sciences, Faculty of Medicine, University of Crete, Heraklion, Greece
| | - Sofia Triliva
- Department of Psychology, University of Crete, Rethymnon, Greece
| | - Christos Lionis
- Department of Social Medicine, Faculty of Medicine, University of Crete, Heraklion, Greece
| | - Alexandros N Vgontzas
- Department of Psychiatry and Behavioral Sciences, Faculty of Medicine, University of Crete, Heraklion, Greece
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50
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Yazici E, Karabulut Ü, Yildiz M, Baskan Tekeş S, Inan E, Çakir U, Boşgelmez Ş, Turgut C. Burden on Caregivers of Patients with Schizophrenia and Related Factors. Noro Psikiyatr Ars 2016; 53:96-101. [PMID: 28360779 DOI: 10.5152/npa.2015.9963] [Citation(s) in RCA: 36] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/11/2014] [Accepted: 04/15/2015] [Indexed: 02/03/2023] Open
Abstract
INTRODUCTION Caregivers of patients with schizophrenia are under the burden of continuous and difficult processes. Determination of the factors related to caregiver burden in schizophrenia may help find strategies to decrease the burden. This study aimed at investigating the factors associated with caregiver burden among relatives of patients with schizophrenia. METHODS Eighty-eight caregivers of patients under treatment for schizophrenia for at least 1 year were included in the study. The Zarit Caregiver Burden Interview was used for the assessment of caregiver burden. Sociodemographical data, the level of knowledge about schizophrenia, clinical impression scale, and global assessment of functioning were used to evaluate the related factors. RESULTS Caregiver burden was negatively correlated with income level and functionality of the patient and was positively correlated with the age of the caregiver, the daily time spent with the patient, and the number of hospitalizations of the patient (p<0.05). There was no significant correlation between the caregivers' knowledge about schizophrenia and caregiver burden (p<0.05). Living in the same house with the patient was a positive predictor, whereas functionality and income level of the patient and education level of the caregiver were negative predictors (p<0.05). CONCLUSION This study highlighted the importance of setting targets for improving the functionality of patients in the design and implementation of rehabilitation and support programs for patients with schizophrenia. Additionally, providing higher income for patients, creating conditions for an independent life, and increasing incentives for younger caregivers with a higher educational level may help decrease caregiver burden.
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Affiliation(s)
- Esra Yazici
- Department of Psychiatry, Sakarya University Faculty of Medicine, Sakarya, Turkey
| | - Ümit Karabulut
- Clinic of Psychiatry, Kocaeli Derince Training and Research Hospital, Kocaeli, Turkey
| | - Mustafa Yildiz
- Department of Psychiatry, Kocaeli University Faculty of Medicine, Kocaeli, Turkey
| | - Sinem Baskan Tekeş
- Clinic of Psychiatry, Kocaeli Derince Training and Research Hospital, Kocaeli, Turkey
| | - Eda Inan
- Clinic of Psychiatry, Kocaeli Derince Training and Research Hospital, Kocaeli, Turkey
| | - Uğur Çakir
- Department of Psychiatry, Abant İzzet Baysal University Faculty of Medicine, Bolu, Turkey
| | - Şükriye Boşgelmez
- Clinic of Psychiatry, Kocaeli Derince Training and Research Hospital, Kocaeli, Turkey
| | - Celaleddin Turgut
- Department of Psychiatry, Kocaeli University Faculty of Medicine, Kocaeli, Turkey
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