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Martinelli A, D'Addazio M, Zamparini M, Thornicroft G, Torino G, Zarbo C, Rocchetti M, Starace F, Casiraghi L, Ruggeri M, de Girolamo G. Needs for care of residents with schizophrenia spectrum disorders and association with daily activities and mood monitored with experience sampling method: the DIAPASON study. Epidemiol Psychiatr Sci 2023; 32:e18. [PMID: 37039434 PMCID: PMC10130736 DOI: 10.1017/s2045796023000124] [Citation(s) in RCA: 6] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/24/2022] [Revised: 01/24/2023] [Accepted: 03/12/2023] [Indexed: 04/12/2023] Open
Abstract
AIMS Care needs represent an essential paradigm in planning residential facility (RF) interventions. However, possible disagreements between users and staff are critical issues in service delivery. The Experience Sampling Method (ESM) tracks experiences in the real world and real time. This study aimed to evaluate the care needs of patients with schizophrenia spectrum disorder (SSD) in RFs and its association with daily activities and mood monitored using the ESM. METHODS As part of the DIAPASON project, 313 residents with SSD were recruited from 99 Italian RFs. Sociodemographic and clinical characteristics were recorded. Care needs, the severity of symptomatology and negative symptoms were assessed. Fifty-six residents were also assessed for 7 consecutive days using the mobile ESM. Descriptive, agreement, predictor and moderator analyses were conducted. RESULTS The staff rated a higher number of total and met needs than service users (p < 0.001). Only a slight agreement between users and staff on unmet needs was found in self-care (k = 0.106) and information (k = 0.100) needs, while a moderate agreement was found in accommodation (k = 0.484), food (k = 0.406), childcare (k = 0.530), physical health (k = 0.470), telephone (k = 0.458) and transport (k = 0.425) needs. Older age (-0.15; p < 0.01), longer SSD diagnosis (-0.16; p < 0.01), higher collaboration (-0.16; p < 0.01) and lower symptomatology (-0.16; p < 0.01) decreased the number of unmet needs, while being a female (0.27; p < 0.05) and a shorter length of stay in an RF (0.54; p < 0.001) increased the number of unmet needs. A higher number of unmet needs was associated with a lower amount of time spent in leisure activities or reporting a positive mood: on the contrary, more unmet needs were associated with a greater amount of time spent in religious or non-productive activities. The associations between unmet needs rated by staff and users and momentary mood as assessed using the ESM were not moderated by the severity of symptomatology. CONCLUSIONS Although care needs are fundamental in planning residential activities aimed at recovery-oriented rehabilitation, RF interventions did not fully meet users' needs, and some disagreements on unmet needs between users and staff were reported. Further efforts are necessary to overcome Italian RF limits in delivering rehabilitative interventions defined by real users' needs to facilitate users' productivity and progress towards personal recovery.
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Affiliation(s)
- Alessandra Martinelli
- Unit of Clinical Psychiatry, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
| | - Miriam D'Addazio
- Unit of Epidemiological and Evaluation Psychiatry, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
| | - Manuel Zamparini
- Unit of Epidemiological and Evaluation Psychiatry, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
| | - Graham Thornicroft
- Centre for Global Mental Health and Centre for Implementation Science, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Gabriele Torino
- Department of Psychology, Clinical Psychology, Catholic University of the Sacred Heart, Milan, Italy
| | - Cristina Zarbo
- Unit of Epidemiological and Evaluation Psychiatry, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
| | - Matteo Rocchetti
- Department of Mental Health and Dependence, ASST of Pavia, Pavia, Italy
| | - Fabrizio Starace
- Department of Mental Health and Dependence, AUSL of Modena, Modena, Italy
| | - Letizia Casiraghi
- Department of Mental Health and Dependence, ASST of Pavia, Pavia, Italy
| | - Mirella Ruggeri
- Section of Psychiatry, Verona Hospital Trust, AOUI, Verona, Italy
| | - Giovanni de Girolamo
- Unit of Epidemiological and Evaluation Psychiatry, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
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Norman CC, McDonald K, Schneider AE, Malinovsky I, Goldmann E, Blauschild MK, Driver C. The New York City Mental Health Needs Assessment Study (MHNAS): Objectives, design, and methods. Int J Methods Psychiatr Res 2018; 27:e1606. [PMID: 29392814 PMCID: PMC6877271 DOI: 10.1002/mpr.1606] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/29/2017] [Revised: 12/05/2017] [Accepted: 12/13/2017] [Indexed: 11/10/2022] Open
Abstract
OBJECTIVES This paper describes the objectives, design, and methods of the Mental Health Needs Assessment Study (MHNAS). The objective of the MHNAS was to assess the needs of individuals transitioning to the community following psychiatric hospitalization and again 3-5 months later to inform community service planning. Needs were defined broadly to include domains like housing, employment, treatment, and social support. METHODS The MHNAS used a 2-stage clustered sampling approach where the primary sampling units were hospitals and secondary sampling units were patients. The study included an in-person patient interview, an assessment of need from a key hospital worker, and a follow-up telephone interview 3-5 months after discharge. RESULTS One thousand one hundred twenty-nine patients from 8 randomly selected hospitals participated. The overall response rate was 54.3% with a cooperation rate of 71.8%. The sample was similar to the overall population of psychiatric patients with respect to several key demographics. CONCLUSION The MHNAS demonstrates the feasibility of conducting a needs assessment with a random sample of psychiatric inpatients in a large urban setting. Results from this study may improve community service planning to better meet individuals' needs, with the ultimate goal of reducing rehospitalization and promoting recovery.
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Affiliation(s)
| | - Kate McDonald
- NYC Department of Health and Mental Hygiene, New York, NY, USA
| | | | - Igor Malinovsky
- NYC Department of Health and Mental Hygiene, New York, NY, USA
| | - Emily Goldmann
- New York University College of Global Public Health, Queens, NY, USA
| | | | - Cynthia Driver
- NYC Department of Health and Mental Hygiene, New York, NY, USA
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Poon AWC, Joubert L, Harvey C. Perceived needs of carers of people with psychosis: An Australian longitudinal population-based study of caregivers of people with psychotic disorders. HEALTH & SOCIAL CARE IN THE COMMUNITY 2018; 26:412-422. [PMID: 29243364 DOI: 10.1111/hsc.12530] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 11/17/2017] [Indexed: 06/07/2023]
Abstract
Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers' needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi-structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy-eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well-being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers' and Users' Expectations of Services-Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers' perceived needs. There was minimal improvement in carers' perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well-being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers' perceived needs more holistically in current mental health services. To support carers' recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well-being.
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Affiliation(s)
- Abner Weng Cheong Poon
- School of Social Sciences, University of New South Wales, UNSW Australia, Sydney, NSW, Australia
| | - Lynette Joubert
- Department of Social Work, Melbourne School of Health Sciences, University of Melbourne, Parkville, VIC, Australia
| | - Carol Harvey
- Psychosocial Research Centre, Department of Psychiatry, University of Melbourne & NorthWestern Mental Health, Coburg, VIC, Australia
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Neogi R, Chakrabarti S, Grover S. Health-care needs of remitted patients with bipolar disorder: A comparison with schizophrenia. World J Psychiatry 2016; 6:431-441. [PMID: 28078207 PMCID: PMC5183995 DOI: 10.5498/wjp.v6.i4.431] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/17/2016] [Revised: 09/18/2016] [Accepted: 10/18/2016] [Indexed: 02/05/2023] Open
Abstract
AIM To investigate health-care needs and their correlates among patients with remitted bipolar disorder (BD) compared to patients with remitted schizophrenia.
METHODS Outpatients with BD (n = 150) and schizophrenia (n = 75) meeting clearly defined remission criteria were included in the study along with their relatives. Diagnostic ascertainment was carried out using the Mini International Neuropsychiatric Interview. Demographic and clinical details were recorded using structured formats. Residual symptoms were assessed using standardized scales. Health-care needs were assessed on two separate scales. The principal instrument employed to assess health-care needs was the Camberwell Assessment of Need-Research version (CAN-R). To further evaluate health-care needs we felt that an additional instrument, which was more relevant for Indian patients and treatment-settings and designed to cover those areas of needs not specifically covered by the CAN-R was required. This instrument with a structure and scoring pattern similar to the CAN-R was used for additional evaluation of needs. Patients’ level of functioning was assessed using the Global Assessment of Functioning Scale and their quality of life (QOL) using the World Health Organization Quality Of Life-BREF version in Hindi.
RESULTS An average of 6-7 needs was reported by patients with BD as well as their relatives. Commonly reported needs were in the areas of economic and welfare needs, informational needs, social needs and the need for treatment. According to the CAN-R, both patients and relatives reported that more than 60% of the total needs were being met. However, over 90% of the needs covered by the additional evaluation were unmet according to patients and relatives. Needs in the areas of economic and welfare-benefits, information, company, daytime activities and physical health-care were largely unmet according to patients and relatives. Total, met and unmet needs were significantly higher for schizophrenia, but the most common types of needs were quite similar to BD. Relatives reported more needs than patients with certain differences in the types of needs reported. Level of patients’ functioning was the principal correlate of greater total and unmet needs in both groups. Significant associations were also obtained with residual symptoms and QOL.
CONCLUSION The presence of unmet needs in remitted patients with BD was an additional marker of the enduring psychosocial impairment characteristic of the remitted phase of BD.
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Grover S, Chakrabarti S, Ghormode D, Dutt A. A comparative study of caregivers' perceptions of health-care needs and burden of patients with bipolar affective disorder and schizophrenia. Nord J Psychiatry 2015; 69:629-636. [PMID: 25928091 DOI: 10.3109/08039488.2015.1033010] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/05/2023]
Abstract
BACKGROUND Although many studies in schizophrenia have evaluated health-care needs, there is a lack of data on the needs of patients with bipolar affective disorder (BPAD), with only occasional studies evaluating them, and no study has evaluated the relationship of health-care needs of patients with caregiver's burden. AIM To study the relationship of caregiver's burden and needs of patients as perceived by caregivers of patients with BPAD and schizophrenia. METHOD Caregivers of patients with BPAD and schizophrenia were assessed using the Camberwell Assessment of Needs - Research version (CAN-R) and Supplementary Needs Assessment Scale (SNAS), the Family Burden Interview schedule (FBI) and the Involvement Evaluation Questionnaire (IEQ). RESULTS Mean total needs of patients on CAN-R were 7.54 (SD 3.59) and 7.58 (SD 4.24) for BPAD and schizophrenia respectively. Mean total needs for SNAS were 7.24 (SD 3.67) and 7.68 (SD 5.02) for BPAD and schizophrenia groups, respectively. Total objective and subjective burden as assessed on FBI was significantly more for the schizophrenia group. Caregivers of patients with BPAD perceived significantly less disruption of routine family activities and lower impact on the mental health of others. On IEQ, the mean score on the domain of supervision was significantly higher for the BPAD group. In the schizophrenia group, positive correlations were seen between the total number of unmet and total (met and unmet) needs and certain aspects of burden, but no such correlations emerged in the BPAD group. CONCLUSION There is no correlation between number of needs and burden in the BPAD group; however, in the schizophrenia group the number of needs correlated with the perceived burden. Accordingly, orienting services to address needs of patients with schizophrenia can lead to reduction in burden among caregivers.
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Affiliation(s)
- Sandeep Grover
- a Sandeep Grover, Department of Psychiatry , Post Graduate Institute of Medical Education and Research , Chandigarh , India
| | - Subho Chakrabarti
- b Subho Chakrabarti, Department of Psychiatry , Post Graduate Institute of Medical Education and Research , Chandigarh , India
| | - Deepak Ghormode
- c Deepak Ghormode, Department of Psychiatry , Post Graduate Institute of Medical Education and Research , Chandigarh , India
| | - Alakananda Dutt
- d Alakananda Dutt, Department of Psychiatry , Post Graduate Institute of Medical Education and Research , Chandigarh , India
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Grover S, Avasthi A, Shah S, Lakdawala B, Chakraborty K, Nebhinani N, Kallivayalil RA, Dalal PK, Sinha V, Khairkar P, Mukerjee DG, Thara R, Behere P, Chauhan N, Thirunavukarasu M, Malhotra S. Indian Psychiatric Society multicentric study on assessment of health-care needs of patients with severe mental illnesses. Indian J Psychiatry 2015; 57:43-50. [PMID: 25657456 PMCID: PMC4314916 DOI: 10.4103/0019-5545.148520] [Citation(s) in RCA: 17] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/21/2022] Open
Abstract
AIM To assess the health-care needs of the patients with severe mental disorders. MATERIALS AND METHODS Patients with the diagnosis of a severe mental disorder (schizophrenia and related psychotic disorders, bipolar disorder, recurrent depressive disorder, major depressive disorder and obsessive compulsive disorder) were assessed using Camberwell Assessment of Need-Research version (CAN-R) Scale and indigenously designed Supplementary Needs Assessment Scale (SNAS). RESULTS The study included 1494 patients recruited from 15 centers. The most common diagnostic group was that of affective disorders (55.3%), followed by psychotic disorders (37.6%). The mean number of total needs as perceived by the patients was 7.6 on the CAN-R. About two-third of the needs as assessed on CAN-R were met, and one-third were unmet. On CAN-R, main domains of needs as reported by patients were those of money, welfare benefits, transport, information about the illness and treatment, relief of psychological distress, company, household skills and intimate relationships. On SNAS, the mean number of total needs as perceived by the patients was 7.6 of which 4.1 were met needs. The most common domains of needs as assessed on SNAS were those of financial help, medical reimbursement, psychoeducation, free treatment, certification of mental illness, flexible work/job timings, addressing the caregiver stress and legal aid. CONCLUSION About two-third of the needs, of the patients with severe mental disorders are met as assessed using CAN-R. However, higher percentages of unmet needs are identified on SNAS. In view of the commonly reported needs, a change in the orientation of services offered to people with mental disorders is very much called for. At the government level, desired policies must be formulated to support the patients with mental disorders.
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Affiliation(s)
- Sandeep Grover
- Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India
| | - Ajit Avasthi
- Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India
| | - Sandip Shah
- Department of Psychiatry, SBKS MI and RC, Sumandeep Vidyapeeth, Pipaira, Vadodara, Gujarat, India
| | - Bhavesh Lakdawala
- Department of Psychiatry, B.J. Medical College and Civil Hospital, Ahmedabad, Gujarat, India
| | - Kaustav Chakraborty
- Department of Psychiatry, College of Medicine and J.N.M. Hospital, Kalyani, India
| | | | | | - Pranob K Dalal
- Department of Psychiatry, KGMU, Lucknow, Uttar Pradesh, India
| | - Vishal Sinha
- Department of Psychiatry, S. N. Medical College, Agra, Uttar Pradesh, India
| | - Praveen Khairkar
- Department of Psychiatry, Mahatma Gandhi Institute of Medical Sciences, Sevagram, India
| | - Divya G Mukerjee
- Department of Psychiatry, R. G. Kar Medical College, Kolkata, West Bengal, India
| | - R Thara
- Schizophrenia Research Foundation (SCARF), Chennai, India
| | - Prakash Behere
- Department of Psychiatry, Datta Meghe Institute of Medical Sciences, Wardha, Maharashtra, India
| | | | - M Thirunavukarasu
- Department of Psychiatry, SRM Medical College Hospital and Research Centre, Chennai, Tamil Nadu, India
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Timlin U, Hakko H, Heino R, Kyngäs H. A systematic narrative review of the literature: adherence to pharmacological and nonpharmacological treatments among adolescents with mental disorders. J Clin Nurs 2014; 23:3321-34. [PMID: 24646418 DOI: 10.1111/jocn.12589] [Citation(s) in RCA: 10] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/10/2014] [Indexed: 11/29/2022]
Abstract
AIMS AND OBJECTIVES To review current research into the adherence to mental health treatment by adolescents. BACKGROUND Nonadherence to medication among adolescents has been studied much more extensively than nonadherence to other forms of treatment. Monitoring adherence to all recommended services is essential when assessing the long-term effectiveness of different treatment programmes. Healthcare professionals who treat patients with mental illness must be able to accurately determine which of their patients are adhering to all prescribed treatments. DESIGN This is a systematic narrative literature review of the current literature. METHODS Using a narrative synthesis, the data from 15 relevant articles concerning adolescents in inpatient or outpatient mental health care were extracted and synthesised. RESULTS The reviewed papers are discussed in terms of the methods used to study treatment adherence, the working definition of adherence used in each case and the results obtained concerning adherence in adolescents. Thirty-four to sixty-seven per cent of adolescents treated are fully adherent to their medication and exhibit reasonably good follow-through for the recommended treatments. However, rates of noncompliance with medication are quite high, and significant numbers of adolescents choose to discontinue their medication. CONCLUSIONS This review synthesises current published data on adherence to mental health treatment among adolescents in order to provide practitioners and researchers with a better understanding of this important area. It is recommended that future investigations should focus on adherence in inpatient care, adherence to nonpharmacological treatments and the identification of factors that influence adherence. RELEVANCE TO CLINICAL PRACTICE The monitoring and understanding of adherence to recommended services is important. Therefore, these findings can be used by healthcare professionals who treat patients with mental illness to help them assess which of their patients are adhering to the prescribed treatments.
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Affiliation(s)
- Ulla Timlin
- Institute of Health Sciences, University of Oulu and Oulu University Hospital, Oulu, Finland
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Cialkowska-Kuzminska M, Misiak B, Kiejna A. Patients' and carers' perception of needs in a Polish sample. Int J Soc Psychiatry 2014; 60:178-84. [PMID: 23520358 DOI: 10.1177/0020764013479268] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/27/2022]
Abstract
BACKGROUND The assessment of patients' needs is an essential element of psychiatric health care planning and evaluation. Not much interest has been paid to the study of psychiatric patients' needs in Poland so far. AIMS To assess the relation between inpatients' and their key carers' perception of needs in a Polish sample. METHODS Out of 324 inpatients invited to take part in the study, 60 sets were finally included. Patients and their carers were examined by means of CANSAS to rate patients' and carers' perception of needs. RESULTS The mean number of general needs indicated by patients themselves was 7.11 (± 2.98), and those indicated by carers equalled 9.53 (± 3.92). The more unmet needs identified by the patient, the more met and general needs of the patient identified by their carer (r = .27, p = .03; r = .38, p = .02, respectively). The more general needs perceived by the patient themself, the higher the indicator of unmet and general needs scored by their carer (r = .32, p = .01; r = .39, p = .001, respectively). CONCLUSIONS There is a significant association between the inpatients' and their carers' perception of needs. Patients' perspective should serve as a high priority in developing treatment plans.
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Zahid MA, Ohaeri JU. Clinical and psychosocial factors associated with needs for care: an Arab experience with a sample of treated community-dwelling persons with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2013; 48:313-23. [PMID: 22547168 DOI: 10.1007/s00127-012-0514-9] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/24/2011] [Accepted: 04/17/2012] [Indexed: 12/11/2022]
Abstract
OBJECTIVES To (1) highlight the profile of the needs for care among a sample of persons with schizophrenia, using the Camberwell Assessment of Needs (CAN-EU), in comparison with the international data; (2) assess the association of patients' needs with socio-demographics, clinical characteristics and objective quality of life (QOL); and (3) compare the perceptions of patients with those of the staff. METHOD Consecutive outpatients in stable condition were interviewed with the CAN-EU and measures of QOL and psychopathology. RESULTS There were 130 patients (68.5% men, mean age 36.8). The highest frequency of unmet needs was for money (29.2%). About a fifth of the subjects expressed unmet needs for six other items, including accommodation. The mean total needs was 8.67(7.1), the total met needs was 5.29 and total unmet needs was 3.38. The dimension with the highest frequency (40%) of unmet needs (functioning) is constituted by items that are related to family care at home. Staff identified significantly more needs than patients. Higher levels of needs were significantly associated with severity of psychopathology and negative affect, and not participating in outdoor activities. The mean number of needs was similar to reports from developing countries and higher than those from European countries. The met/unmet need ratio was similar to European data. CONCLUSION Despite free health services and family support, a number of our treated community-dwelling persons with schizophrenia had problems meeting basic and health-care needs. The findings call for a consideration of techniques for enhancing the capability of families to cope with the care of patients.
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Affiliation(s)
- Muhammad A Zahid
- Department of Psychiatry, Faculty of Medicine, Health Sciences Centre, Kuwait University, P. O. Box 24923, 13110 Safat, Kuwait.
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Coomber K, King RM. Perceptions of carer burden: differences between individuals with an eating disorder and their carer. Eat Disord 2013; 21:26-36. [PMID: 23241088 DOI: 10.1080/10640266.2013.741966] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/27/2022]
Abstract
Carer burden in eating disorders is considerable, but to date no research has examined carer burden from the perspective of the person with an eating disorder. The current brief report assessed carer burden with a short questionnaire, as perceived by 20 matched pairs of sufferers and their carers. Those with an eating disorder significantly underestimated the overall burden experienced by their carer, particularly in relation to nutritional difficulties and conflict within the family. Domains where carers and sufferers had high agreement may be useful in facilitating collaborative involvement between sufferers and carers in treatment, such as multi-family therapy.
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Affiliation(s)
- Kerri Coomber
- School of Psychology, Deakin University, Geelong, Victoria, Australia
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Validity and reliability of the Spanish version of the Involvement Evaluation Questionnaire among caregivers of patients with eating disorders. Psychiatry Res 2012; 200:896-903. [PMID: 22884308 DOI: 10.1016/j.psychres.2012.07.033] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/02/2012] [Revised: 07/13/2012] [Accepted: 07/23/2012] [Indexed: 12/22/2022]
Abstract
The Involvement Evaluation Questionnaire (IEQ) was developed to evaluate burden among caregivers of patients with schizophrenia. We aimed to examine its psychometric properties among caregivers of patients with eating disorders (ED). A prospective study was carried out, recruiting caregivers of patients with an ED attending two outpatient clinics in Bizkaia, Spain. Caregivers provided sociodemographic information and completed the Involvement Evaluation Questionnaire (IEQ), the Hospital Anxiety and Depression Scale (HADS), the Short-Form 12 (SF-12) and the Anorectic Behaviour Observation Scale (ABOS). The same information was requested one year later. The confirmatory factor analysis (CFA) provided satisfactory fit indexes. Almost all of the factor loadings were above 0.40. Cronbach's alpha coefficients were mostly superior to 0.70. The correlation coefficients between the IEQ domains and the other questionnaires were lower than the Cronbach's alpha coefficients. Known-groups validity was supported by significant differences in the IEQ mean scores according to certain variables, as contact hours, living with the patient, type of caregiver and gender. The indexes employed for the evaluation of responsiveness were between 0.13 and 0.99. The IEQ has good psychometric properties and can be used to evaluate burden among caregivers of patients with ED.
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Weimand BM, Hall-Lord ML, Sällström C, Hedelin B. Life-sharing experiences of relatives of persons with severe mental illness - a phenomenographic study. Scand J Caring Sci 2012; 27:99-107. [DOI: 10.1111/j.1471-6712.2012.01007.x] [Citation(s) in RCA: 22] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
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Berk L, Jorm AF, Kelly CM, Dodd S, Berk M. Development of guidelines for caregivers of people with bipolar disorder: a Delphi expert consensus study. Bipolar Disord 2011; 13:556-70. [PMID: 22017224 DOI: 10.1111/j.1399-5618.2011.00942.x] [Citation(s) in RCA: 37] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
Abstract
OBJECTIVES Close family and friends are often a primary source of support for a person with bipolar disorder. However, there is a lack of information for caregivers about ways to provide helpful support and take care of themselves. Rates of caregiver burden are high and increase the risk of caregiver depression and health problems. This study aimed to develop guidelines to assist caregivers of adults with bipolar disorder to be informed about bipolar disorder and to support the person without neglecting their own wellbeing. METHODS The Delphi method was used to assess consensus between international expert panels of 45 caregivers, 47 consumers, and 51 clinicians about what information to include in the caregiver guidelines. Initial online survey items were based on the existing literature. Subsequent surveys included new or reworded items suggested by panel members and items that needed re-rating. Items endorsed by at least 80% of all three panels formed the content of the guidelines. RESULTS Nearly 86% of the 626 survey items were endorsed. The items covered information on the illness, treatment, and suggestions on ways caregivers can provide support and take care of themselves in the different phases of illness and wellness, and information on dealing with specific real-life challenges. Although consensus rates were high, meaningful areas of difference between panels were found (e.g., collaboration issues). CONCLUSIONS The guidelines provide comprehensive introductory information, suggestions, and resources for caregivers. Access to relevant information may help caregivers to cope constructively with the person's bipolar disorder and their caregiving situation. The content of the guidelines could be used to help formulate a stepped-care approach to supporting caregivers, ranging from basic information and pamphlets to brief training courses and specialized family or caregiver interventions based on need and accessibility.
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Affiliation(s)
- Lesley Berk
- Orygen Youth Health Research Centre, Centre for Youth Mental Health Department of Psychiatry, University of Melbourne, Parkville, Victoria, Australia.
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ZamZam R, Midin M, Hooi LS, Yi EJ, Ahmad SNA, Azman SFA, Borhanudin MS, Radzi RSM. Schizophrenia in Malaysian families: A study on factors associated with quality of life of primary family caregivers. Int J Ment Health Syst 2011; 5:16. [PMID: 21651770 PMCID: PMC3148981 DOI: 10.1186/1752-4458-5-16] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/19/2010] [Accepted: 06/08/2011] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Schizophrenia is a chronic illness which brings detrimental effects in the caregivers' health. This study was aimed at highlighting the socio-demographic, clinical and psychosocial factors associated with the subjective Quality of Life (QOL) of Malaysian of primary family caregivers of subjects with schizophrenia attending an urban tertiary care outpatient clinic in Malaysia. METHODS A cross-sectional study was performed to study patient, caregiver and illness factors associated with the QOL among 117 individuals involved with caregiving for schizophrenia patients. The study used WHOQOL-BREF to assess caregivers' QOL and Brief Psychiatric Rating Scale (BPRS) to assess the severity of patients' symptoms. Social Readjustment Rating Scale (SRRS) assessed the stress level due to life events. RESULTS The mean scores of WHOQOL-BREF in physical, psychological, social and environmental domains were 66.62 (14.36), 61.32 (15.52), 62.77 (17.33), 64.02 (14.86) consecutively. From multiple regression analysis, factors found to be significantly associated with higher QOL were higher educational level among caregivers in social and environmental domains; caregivers not having medical problem/s in physical and psychological domains; later onset and longer illness duration of illness in social domains; patients not attending day care program in environmental domain; lower BPRS score in physical and environmental domains. SRRS score of caregivers was also found to have a significant negative correlation with QOL in environmental and psychological domains. Other factors were not significantly associated with QOL. CONCLUSION Caregivers with more social advantages such as higher educational level and physically healthier and dealing with less severe illness had significantly higher QOL in various aspects. Supporting the caregivers in some of these modifiable factors in clinical practice is important to achieve their higher level QOL.
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Affiliation(s)
- Ruzanna ZamZam
- Department of Psychiatry, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
| | - Marhani Midin
- Department of Psychiatry, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
- Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
| | - Lim S Hooi
- Department of Psychiatry, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
- Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
| | - Eng J Yi
- Department of Psychiatry, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
- Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
| | - Siti NA Ahmad
- Department of Psychiatry, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
- Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
| | - Siti FA Azman
- Department of Psychiatry, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
- Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
| | - Muhammad S Borhanudin
- Department of Psychiatry, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
- Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
| | - Rozhan SM Radzi
- Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
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Hadryś T, Adamowski T, Kiejna A. Mental disorder in Polish families: is diagnosis a predictor of caregiver's burden? Soc Psychiatry Psychiatr Epidemiol 2011; 46:363-72. [PMID: 20309676 DOI: 10.1007/s00127-010-0200-8] [Citation(s) in RCA: 49] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/17/2007] [Accepted: 02/23/2010] [Indexed: 02/05/2023]
Abstract
OBJECTIVE To test whether a caregiver's burden is associated with the patient's psychiatric diagnosis and to find other predictors of family burden; to provide Polish data on the issue to international literature. METHOD Of 377 eligible subjects, 141 were interviewed on admission to the mental hospital using Brief Psychiatric Rating Scale, Manchester Short Assessment of Quality of Life, Groningen Social Disability Schedule and Client's Sociodemographic and Clinical History Inventory. Their caregivers completed the Involvement Evaluation Questionnaire (IEQ). Subjects were grouped according to ICD-10 diagnoses: schizophrenia (n = 55), depression (n = 61), and anxiety and personality disorders (n = 25). Highly aggressive, suicidal and somatically unstable patients were excluded along with patients below 18 and over 65 years. Statistics included multiple regression analysis, ANOVA, Kruskal-Wallis and chi-square tests. RESULTS Diagnostic groups differed with respect to sociodemographics, psychopathology and quality of life, but not with respect to mean level of social functioning. Despite between-group differences, the caregiver's burden did not differ according to the diagnostic group. Of the four dimensions of burden, "worrying" and "urging" scored the highest. Majority of caregivers worried about their relative's general health (82%), future (74%) and financial status (66%). Caregivers' characteristics and not patients' explained the largest proportion of the family burden variance (almost 23% for IEQ Tension). Higher burden seemed to be associated with the carer's age, being a parent and number of hours spent weekly on caring for the ill relative. Lower burden was associated with the carers' subjective feelings of being able to cope with problems and to pursue their own activities. Longer history of patient's illness led to higher IEQ Tension. Polish caregivers were affected by their role in the same way as their counterparts abroad, but more of them were worried. CONCLUSIONS The caregiver's burden seems to be independent of the patient's diagnosis, but other factors contribute to the perceived burden, many of which are on the caregiver's part. In Poland, the overall family burden may be attributed mostly to worrying about a mentally ill relative and his future. All caregivers may benefit from psychoeducation and family interventions usually planned for those caring for relatives with schizophrenia.
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Affiliation(s)
- Tomasz Hadryś
- Department of Psychiatry, Wroclaw Medical University, Ul. Pasteura 10, 50-367, Wroclaw, Poland.
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16
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Nolan P, Bradley E, Brimblecombe N. Disengaging from acute inpatient psychiatric care: a description of service users' experiences and views. J Psychiatr Ment Health Nurs 2011; 18:359-67. [PMID: 21418436 DOI: 10.1111/j.1365-2850.2010.01675.x] [Citation(s) in RCA: 31] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
Abstract
The growing number of people worldwide with mental health problems is increasing and making intensive demands on existing services. Recent reorganizations of healthcare provision in the UK have focused predominantly on administrative efficiency, standardization and cost-effectiveness. Although little evidence exists that reorganizations, per se, directly result in improved health nationally, nevertheless, organizational change coupled with improved care provision can have a considerable impact on the mental health of people. It is known that service users want person-centred help with improving their confidence, autonomy and cognitive and social skills so as to be able to manage their lives within the social context in which they live. In this study, semi-structured interviews were used to explore service users' expectations and experiences of acute inpatient care and the early post-discharge period. While the social environment of the wards was seen by many as conducive to promoting safety and interpersonal relationships, others found the experience lacking in assisting them to resume their lives post discharge. If acute care is to become more than a mechanism for addressing and containing risk, better targeted interventions are required to help individuals find strategies that are transferable to the context of their 'real' lives. A number of factors that were identified by respondents in this study are identified and discussed.
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Affiliation(s)
- P Nolan
- Staffordshire University and South Staffordshire and Shropshire Mental Health NHS Trust, Stafford, UK.
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17
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Weimand BM, Hedelin B, Sällström C, Hall-Lord ML. Burden and health in relatives of persons with severe mental illness: a Norwegian cross-sectional study. Issues Ment Health Nurs 2010; 31:804-15. [PMID: 21142601 DOI: 10.3109/01612840.2010.520819] [Citation(s) in RCA: 42] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/13/2022]
Abstract
This study describes and investigates burden to and health of relatives of persons with severe mental illness in relation to background variables, everyday life with the mentally ill person, and sense of coherence. A cross-sectional design was used. The respondents were 226 relatives from the Norwegian National Association for Families of Mentally Ill Persons. In addition to background variables and variables about everyday life with the mentally ill person, the questionnaire was comprised of the Burden Assessment Schedule (BAS), Short Form Health Survey (SF-36), and Sense of Coherence Instrument (SOC). This study shows that the relatives were burdened and also reported poor health. Greater burden was experienced by women and by relatives who did not have anyone with whom to share the caregiving of the mentally ill person. For relatives who were single, divorced, or widowed, burden was greater and health was poorer; likewise for relatives who reported financial problems and frequent phone calls with the mentally ill person. Burden and poor health were associated with low SOC. The findings suggest a need for the health services to include and support these relatives in order for them to sustain health.
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Affiliation(s)
- Bente M Weimand
- Hedmark University College, Health and Sports, Laererskolealleen 1, Elverum, Norway.
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18
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Papastavrou E, Charalambous A, Tsangari H, Karayiannis G. The cost of caring: the relative with schizophrenia. Scand J Caring Sci 2010; 24:817-23. [DOI: 10.1111/j.1471-6712.2010.00782.x] [Citation(s) in RCA: 29] [Impact Index Per Article: 1.9] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/28/2022]
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Pirkis J, Burgess P, Hardy J, Harris M, Slade T, Johnston A. Who cares? A profile of people who care for relatives with a mental disorder. Aust N Z J Psychiatry 2010; 44:929-37. [PMID: 20932207 DOI: 10.3109/00048674.2010.493858] [Citation(s) in RCA: 38] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/13/2022]
Abstract
OBJECTIVE To profile the Australian adults who are caring for a relative with a mental disorder. METHOD Data came from the 2007 National Survey of Mental Health and Wellbeing 2007 (NSMHWB), a nationally representative household survey of 8841 individuals aged between 16 and 85 years. RESULTS Many people act as carers: 15% of the Australian adult population, or nearly 2.4 million individuals. The strongest predictors of being a carer are being female and being in a relatively older age bracket. Carers provide a range of emotional and practical supports to close relatives with a range of mental disorders, most notably high prevalence disorders. Their relatives' health problems cause them considerable worry, anxiety and depression, and their caring role can be associated with high financial costs. CONCLUSIONS Carers are significant stakeholders in the mental health system. Providing support for carers is crucial, particularly because their own mental health and well-being may be affected by their care-giving role. The nature of this support should take into account their large numbers, their profile and the role they perform.
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Affiliation(s)
- Jane Pirkis
- Centre for Health Policy, Programs and Economics, Melbourne School of Population Health, University of Melbourne, Melbourne, Australia.
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20
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van de Bovenkamp HM, Trappenburg MJ. The relationship between mental health workers and family members. PATIENT EDUCATION AND COUNSELING 2010; 80:120-125. [PMID: 19836188 DOI: 10.1016/j.pec.2009.09.022] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 06/03/2009] [Revised: 09/03/2009] [Accepted: 09/07/2009] [Indexed: 05/28/2023]
Abstract
OBJECTIVE To study the relationship between family members and mental health care workers to learn more about the support available to family members of mental health patients. METHODS Eighteen interviews were conducted with family members, seven with professionals and two with patients. Observations were performed at a long-term hospital ward and at family and client council meetings. RESULTS Family members perform an important carer role which greatly affects their lives. They need support from mental health professionals in order to cope. However, communication between mental health care workers and family members is problematic. Family members report a lack of information, consultation and support. CONCLUSION Family members and mental health care workers frame the role of family members in the care process differently. PRACTICE IMPLICATIONS Since the role of family members in the care process can be beneficial for all actors including the mental health patient it is important that mental health professionals acknowledge this and provide support to family members. Considering relatives as fellow carers (reframing their role) could be the way to do this.
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Mojtabai R, Fochtmann L, Chang SW, Kotov R, Craig TJ, Bromet E. Unmet need for mental health care in schizophrenia: an overview of literature and new data from a first-admission study. Schizophr Bull 2009; 35:679-95. [PMID: 19505994 PMCID: PMC2696378 DOI: 10.1093/schbul/sbp045] [Citation(s) in RCA: 66] [Impact Index Per Article: 4.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/14/2022]
Abstract
We present an overview of the literature on the patterns of mental health service use and the unmet need for care in individuals with schizophrenia with a focus on studies in the United States. We also present new data on the longitudinal course of treatments from a study of first-admission patients with schizophrenia. In epidemiological surveys, approximately 40% of the respondents with schizophrenia report that they have not received any mental health treatments in the preceding 6-12 months. Clinical epidemiological studies also find that many patients virtually drop out of treatment after their index contact with services and receive little mental health care in subsequent years. Clinical studies of patients in routine treatment settings indicate that the treatment patterns of these patients often fall short of the benchmarks set by evidence-based practice guidelines, while at least half of these patients continue to experience significant symptoms. The divergence from the guidelines is more pronounced with regard to psychosocial than medication treatments and in outpatient than in inpatient settings. The expansion of managed care has led to further reduction in the use of psychosocial treatments and, in some settings, continuity of care. In conclusion, we found a substantial level of unmet need for care among individuals with schizophrenia both at community level and in treatment settings. More than half of the individuals with this often chronic and disabling condition receive either no treatment or suboptimal treatment. Recovery in this patient population cannot be fully achieved without enhancing access to services and improving the quality of available services. The recent expansion of managed care has made this goal more difficult to achieve.
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Affiliation(s)
- Ramin Mojtabai
- Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
| | - Laura Fochtmann
- Department of Psychiatry and Behavioral Sciences, State University of New York, Stony Brook, NY
| | - Su-Wei Chang
- Department of Psychiatry and Behavioral Sciences, State University of New York, Stony Brook, NY
| | - Roman Kotov
- Department of Psychiatry and Behavioral Sciences, State University of New York, Stony Brook, NY
| | | | - Evelyn Bromet
- Department of Psychiatry and Behavioral Sciences, State University of New York, Stony Brook, NY
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Cleary M, Hunt GE, Matheson S, Walter G. The association between substance use and the needs of patients with psychiatric disorder, levels of anxiety, and caregiving burden. Arch Psychiatr Nurs 2008; 22:375-85. [PMID: 19026926 DOI: 10.1016/j.apnu.2008.02.001] [Citation(s) in RCA: 14] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/28/2007] [Revised: 12/19/2007] [Accepted: 02/05/2008] [Indexed: 10/21/2022]
Abstract
The influence of substance use on patient's needs and caregiving consequences has received insufficient research attention. We sought to determine whether patients with comorbid substance use have higher levels of need, anxiety, depression, and caregiving consequences than those of patients who do not use substances. A total of 520 patients participated, and those who used substances (n = 216) reported higher levels of unmet needs, anxiety, and caregiving consequences than did patients who did not use substances. Carers of patients who used substances also reported higher anxiety and more caregiving consequences. Very few patients were actively involved in treatment programs to reduce their substance use.
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Affiliation(s)
- Michelle Cleary
- Faculty of Nursing and Midwifery, University of Sydney, Australia.
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Abstract
In this study, 10 former patients' experiences of hospitalization are described using a qualitative approach. The informant group consisted of three men and seven women with different diagnoses and each with his or her individual experience of life as an inpatient. The aim of this study was to extend our understanding of former psychiatric inpatients' experience their time of admission to a psychiatric inpatients unit. Data were collected and analysed using a content analysis approach. From the former patients' descriptions, the following five themes emerged: being seen as a disease, striving for a sense of control in an alienating and frightening context, succumbing to repressive care, meeting an omniscient master, and care as a light in the darkness. In conclusion, the experience of psychiatric inpatient care could be interpreted and understood from former patients' narratives as a struggle for dignity in the face of discrimination and rejection.
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Affiliation(s)
- Lars Lilja
- Department of Health Sciences, Mid-Sweden University, Sundsvall, Sweden.
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Cleary M, Matheson S, Walter G, Malins G, Hunt GE. Demystifying research and evidence-based practice for consumers and carers: development and evaluation of an educational package. Issues Ment Health Nurs 2008; 29:131-43. [PMID: 18293221 DOI: 10.1080/01612840701792340] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/22/2022]
Abstract
Increasingly, consumers and carers are involving themselves in many aspects and levels of mental health services. However, one area in which active involvement has been less prominent is research. This paper describes an educational initiative that sought to increase consumers' and carers' understanding of the way research is conducted and its role in evidence-based practice. Information regarding participants' attitudes towards research, knowledge about research practice and participation was also examined. The findings provide evidence that workshop attendance increases knowledge and encourages participation in future research projects, particularly when participants have confidence in the researcher.
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Affiliation(s)
- Michelle Cleary
- Faculty of Nursing and Midwifery, University of Sydney, Australia.
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