The following resources examine caring for people with mental health needs.
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Purpose: The Family Burden Interview Schedule (FBIS-24) and the Zarit Caregiver Burden Interview (ZBI-22) are among the most widely used measures for assessing caregiving burden, but their psychometric performances have not been compared in the same study of caregivers of people living with schizophrenia (PLS). This is important because the measures assess overlapping constructs-the FBIS-24 assesses objective burden (e.g., completion of manual tasks) and the ZBI-22 assesses subjective burden (e.g., perceived distress, stigma). This study seeks to fill this gap by comparing the reliability and validity of the FBIS-24 and the ZBI-22 in a Chinese community sample of caregivers of PLS. Methods: A Cross-sectional stud was conducted in a community-based mental health service program in Central South part of China. A total of 327 primary family caregivers of PLS completed face-to-face interviews of the FBIS-24, the ZBI-22, the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), and the Family Adaptation, Partnership, Growth, Affection and Resolve Index scale (APGAR), and PLS were assessed using the Global Assessment of Function scale (GAF). Results: Our findings show that both the FBIS-24 and ZBI-22 have comparable psychometric performance in terms of the internal consistency, convergent validity and known group's validity. Conclusion: Both the FBIS-24 and the ZBI-22 are psychometrically sound measures of caregiving burden but the choice of which measure to use will depend on the research question.
Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.
Cognitive impairment (CI) is one of symptoms that adults with cancer frequently report. Although there are known factors that contribute to a patient's CI, these factors did not sufficiently explain its variability. Several studies conducted in patients with neurocognitive disorders have reported relationships between patients' cognitive function and caregiver characteristics, which are poorly understood in the context of cancer. This scoping review aims to map the literature on caregiver characteristics associated with CI in adults with cancer. We used the framework proposed by Arksey and O'Malley and PRISMA-Sc. Studies published in English by 2019 were searched through seven electronic databases. All retrieved citations were independently screened and eligibility for inclusion was determined by two independent authors. Ten studies met inclusion for this review with all of them showing significant associations between a patient's cognitive function and caregiver characteristics. Caregiver's mental health was the most commonly associated with a patient's cognitive function followed by family functioning, adaptation to illness, attitude toward disclosure of the illness, burden, coping and resilience, and demographic characteristics. These review findings suggest that enhanced information about CI in relation to caregiver characteristics will eventually provide the foundation for multifocal interventions for patients with impaired cognitive function. This scoping review identified caregiver characteristics that are associated with patients CI. These characteristics should be also assessed when health providers assess and treat CI of adults with cancer.
Background: The number of people with neurocognitive disorder is increasing, and the majority of them are cared for by informal caregivers in the community. Mental health problems are common among caregivers, however, professional support for them is often limited. Non-pharmacological self-help interventions, such as bibliotherapy, may improve mental well-being and has the potential for being integrated into clinical or social services. Objectives: To explore what types of bibliotherapy have been used for improving the mental well-being of informal caregivers of people with neurocognitive disorders, and the effect on mental well-being outcomes. Design: A systematic review and meta-analysis. Review methods: Six databases were searched for relevant articles on July 1, 2019. Clinical trial registries and the reference lists of included studies were also searched. Both randomized controlled trials and quasi-experimental studies were included. The Cochrane Collaboration risk of bias tool for randomized controlled trials was used to assess the quality of studies. Review Manager 5.3 was used to analyze data, standardized mean difference (SMD) and 95% confidence interval (CI) were used to estimate the pooled treatment effect. Random effects models were used for meta-analyses. Funnel plot was not performed due to the limited number of studies. This systematic review was registered at PROSPERO (CRD42019129152). Results: Nine randomized controlled trials with 1036 informal caregivers were included. Most of the included studies had some aspects of bias. Three types of bibliotherapy were used. Bibliotherapy had a significant pooled medium to large effect on reducing depression at Z = 1.99 (SMD = -0.74, 95%CI = -1.47 to -0.01, p = .05), however, the heterogeneity was high (I2 = 94%). For the subgroups, only the video-based bibliotherapy significantly reduced depression at Z = 2.78 (I2 = 83%, SMD = -2.11, 95%CI = -3.6 to -0.62, p = .005). Bibliotherapy had a significant small to medium effect on caregiver's self-efficacy for dealing with problem behaviours at Z = 2.44 (I2 = 0, SMD = 0.36, 95%CI = 0.05 to 0.67, p = .02), however, the effect on self-efficacy for obtaining respite was not significant (I2 = 0, SMD = 0.17, 95%CI = -0.16 to 0.49, p = .32). The effect on decreasing state anxiety was significant at Z = 2.30 (I2 = 22%, SMD = -0.22, 95% CI = -0.41 to -0.33, p = .02). Conclusions: Bibliotherapy showed positive effects on reducing depression, improving self-efficacy for dealing with problem behaviors and reducing anxiety among informal caregivers. The effects on reducing depression should be viewed with caution due to high heterogeneity. The effects on other mental well-being outcomes are inconclusive due to limited number of studies and this underscores the need for further research.
The increasing number of older adults with cognitive deficits, including dementia, poses a major challenge for public health in the United States. At the same time, the limited number of informal and professional caregivers available to support this rapidly growing population is of mounting concern. Not only does population aging limit the number of potential caregivers, but extant caregivers often lack skills to provide quality care. The integration of intelligent assistive technologies (IAT), including devices, robotics and sensors in many forms, into eldercare, may offer opportunities to reduce caregiver burden and enhance healthcare services while improving the quality of life among older adults with mild to severe cognitive deficits. However, many caregivers and their care recipients lack access to these technologies. The reasons for this reduced access are multifactorial, including the digital divide, sociocultural factors, and technological literacy. This mini review investigates the emerging use of IAT available to caregivers and older adults with cognitive deficits and explores the challenges in socioeconomic status and technological literacy as well as ethical and legal implications that should be considered in the design and development of IAT for older adults with cognitive deficits. Drawing from existing literature, it will suggest frameworks for design and adoption aimed at increased and equitable access for this vulnerable population.
It is clear from existent literature that families and carers of relatives and friends with borderline personality disorder (BPD) experience high levels of burden. Whilst family interventions are considered vital to improving the outcomes of those with a range of mental health difficulties, there has been limited development of direct interventions for carers of people with BPD, despite a high level of need. This systematic review aimed to appraise and synthesize the existing research evidence for interventions for carers of people with BPD. Ten studies were included that were directly related to six interventions for families and carers of people with personality disorder. The findings of these studies, whilst limited, do provide some initial evidence that interventions for carers may lead to significant outcomes for the participants, particularly in improving carer well-being and reducing carer burden.
Background Carers are key providers of care and support to mental health patients and mental health policies consistently mandate carer involvement. Understanding carers' experiences of and views about assessment for involuntary admission and subsequent detention is crucial to efforts to improve policy and practice. Aims We aimed to synthesise qualitative evidence of carers' experiences of the assessment and detention of their family and friends under mental health legislation. Method We searched five bibliographic databases, reference lists and citations. Studies were included if they collected data using qualitative methods and the patients were aged 18 or older; reported on carer experiences of assessment or detention under mental health legislation anywhere in the world; and were published in peer-reviewed journals. We used meta-synthesis. Results The review included 23 papers. Themes were consistent across time and setting and related to the emotional impact of detention; the availability of support for carers; the extent to which carers felt involved in decision-making; relationships with patients and staff during detention; and the quality of care provided to patients. Carers often described conflicting feelings of relief coupled with distress and anxiety about how the patient might cope and respond. Carers also spoke about the need for timely and accessible information, supportive and trusting relationships with mental health professionals, and of involvement as partners in care. Conclusions Research is needed to explore whether and how health service and other interventions can improve the involvement and support of carers prior to, during and after the detention of family members and friends.
Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed 'entangled' relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare.
Background Psychosis often causes significant distress and impacts not only in the individuals, but also those close to them. Many relatives and friends ('carers') provide long-term support and need resources to assist them. We have co-produced a digital mental health intervention called COPe-support (Carers fOr People with Psychosis e-support) to provide carers with flexible access to high quality psychoeducation and interactive support from experts and peers. This study evaluates the effectiveness of COPe-support to promote mental wellbeing and caregiving experiences in carers. Methods This study is a single-blind, parallel arm, individually randomized controlled trial (RCT) comparing COPe-support, with attention control. Both groups continue to receive usual care. COPe-support provides interactive web-based psychoeducation on psychosis-related issues, wellbeing-promotion and network support through forums. The attention-control is a non-interactive online information resource pack. Carers living in England are eligible if they provide at least weekly support to a family member or close friend affected by psychosis, and use internet communication (including emails) daily. All trial procedures are run online, including collection of outcome measurements which participants will directly input into our secure platform. Following baseline assessment, a web-based randomization system will be used to allocate 360 carers to either arm. Participants have unlimited access to the allocated condition for 40 weeks. Data collection is at three time points (10, 20, and 40 weeks after randomization). Analyses will be conducted by trial statisticians blinded to allocation. The primary outcome is mental wellbeing measured by Warwick Edinburgh Mental Wellbeing Scale (WEMWBS), at 20 weeks. As well as an intention-to-treat analysis, a complier average causal effect (CACE) analysis will be conducted to estimate the intervention effect in participants who have accessed COPe-support content twice or more. The secondary objectives and analysis will examine other health and caregiving-related outcomes and explore mechanisms. In a process evaluation, we will interview 20% of the intervention arm participants regarding the acceptability of COPe-support. We will explore in detail participants' usage patterns. Discussion The results of this trial will provide valuable information about the effectiveness of COPe-support in promoting wellbeing and caregiving experiences in carers.
Purpose: This study was undertaken to develop a theoretical framework explaining family caregiving processes for older persons with cognitive impairment recovering from hip fracture surgery. Design and Methods: In this grounded theory study, data were collected in audio-recorded face-to-face interviews with 21 family caregivers. Among these caregivers, 14 cared for hip-fractured persons with cognitive impairment, and seven cared for those without cognitive impairment. Caregivers were interviewed five times after patients’ discharge: at 1 week and at 1, 3, 6, and 12 months. Data were analyzed by constant comparative analysis. Findings: The core category explaining the family caregiving process for hip-fractured persons with cognitive impairment was “resuming normal life during drip-like recovery.” This category captures the slowness of the recovery process, as slow as dripping water. During the early postoperative period, caregivers attempted to gain control of the postoperative situation, using various maintenance and improvement strategies to deal with the chaos in individuals and the family and to protect hip-fractured persons with cognitive impairment from further harm. The goal of recovery was to get back to their original life. Conclusions: Family caregivers of hip-fractured older persons with cognitive impairment needed to deal with more complex chaotic situations, exerted more efforts to administer safety measures, and required more time to achieve a stable life pattern. Clinical Relevance: Since postoperative recovery was perceived as extremely slow, family caregivers of hip-fractured older persons with cognitive impairment should be patient regarding recovery and be informed before hospital discharge of different strategies to resume normal life during postoperative recovery.
Purpose The aim of this study was to examine the psychometric properties of the Spanish version of the Experience of Caregiving Inventory (ECI-S), which is designed to assess the caregiver's appraisal of the impact of caring for a relative with a serious mental illness. Methods A cross-sectional study was conducted among 320 caregivers of a relative with an eating disorder to examine: (a) descriptive statistics; (b) internal consistency reliability; (c) the fit of the original ten-factor structure of the ECI through exploratory factor analysis, using a semi-confirmatory approach, for each subscale individually, and (d) concurrent validity. A total of 307 caregivers completed the scale. Results Reliability of the ECI subscales scores was acceptable (alpha = 0.63-0.89). Results replicated the original ten-factor structure of the instrument. The concurrent validity was supported by correlations of the ECI-negative subscale with psychological distress (GHQ-12, 0.43), and with depression and anxiety (HADS, 0.48 and 0.49, respectively). Conclusions The Spanish version of the ECI (ECI-S) demonstrated good psychometric properties in terms of validity and reliability that were similar to the original version. It is an acceptable and valid instrument for assessing the impact on family members of caring for a relative with an eating disorder and can be recommended for use in clinical settings in Spain.
Aims Studies on the frequency of caregiver involvement in representative inpatient samples are scarce. The aim of our study was to conduct a representative survey on caregiver involvement in routine inpatient care involving all three parties (patients, caregivers, psychiatrists). Therefore, we performed face-to-face interviews consisting of open-ended questions to gain a deeper understanding of when and how caregivers are involved in care treatment and to identify which topics are mainly discussed. Methods This cross-sectional survey included inpatients from 55 acute psychiatric wards across ten psychiatric hospitals, their treating psychiatrists and, when possible, their caregivers. In total, we performed semi-structured face-to-face interviews with 247 patients, their treating psychiatrists and 94 informal caregivers. Each psychiatrist named the next two to three patients to be discharged. After a patient had given informed consent, the interview was performed by a researcher. In addition, the psychiatrist and, when possible, the primary caregiver identified by the patient, were also interviewed. Results It was perceived by both patients and psychiatrists that contact between caregiver and psychiatrist had taken place in one-third of the patient cases. Predictors for psychiatrist-caregiver-contact were revealed in the patient's diagnosis (schizophrenia), a lower history of inpatient stays, and the respective hospital. According to psychiatrists the most frequent subjects of discussion with caregivers involved therapeutic issues and organisational and social-psychiatric topics (e.g. work, living and social support). Patients and caregivers stated that psychiatric treatment and the diagnostic classification of the mental illness were the most frequent topics of conversation. For all three groups, the most often cited reason for missed caregiver involvement was the subjective perception that a caregiver was not in fact needed. Conclusions Whether or not caregivers were contacted and involved during an inpatient stay strongly depended on the individual hospital. The frequency of involvement of caregivers can certainly be increased by changing processes and structures in hospitals. All three parties (patients, caregivers and psychiatrists) most often stated that the caregiver was not involved in the treatment because they thought it was unnecessary. Evidence demonstrates the positive effect of caregivers' involvement on the therapeutic process but also on the well-being of the caregiver, therefore it is necessary to increase awareness of this evidence among all three interest groups.
The purpose of the current descriptive qualitative study was to reveal experiences of family caregivers of individuals with chronic psychiatric illness. Family caregivers who provided care to 16 individuals with chronic mental illness were interviewed. Three themes emerged from the interviews: Illness Management, The Caregiver's World: Changes and Effects, and Coping From the Caregiver's Point of View. Understanding the experiences of family caregivers contributes to content development of family intervention programs.
Purpose This study was aimed at investigating the psychometric properties of the Family Crisis Oriented Personal Evaluation Scale (F‐COPES) for Turkish society, which assesses the coping skills of caregivers of individuals with chronic mental illnesses. Design and Methods The study was conducted with 153 family caregivers of patients with a chronic mental illness admitted to the inpatient and outpatient units of two university hospitals and İzmir Schizophrenia Solidarity Association. For the language validity, the translation‐back translation method was performed, for the content validity, expert opinions were obtained, for the construct validity, exploratory and confirmatory factor analysis was performed. For the reliability analysis, Cronbach α reliability coefficient was calculated and the test‐retest reliability analysis was performed. Findings The content validity index of the scale was 0.96. The Cronbach's α reliability coefficient for the overall scale was .80. Factor loadings of the subscales ranged between 0.56 and 0.69 for the Acquiring Social Support subscale, between 0.43 and 0.74 for the Reframing subscale, between 0.53 and 0.74 for the Seeking Spiritual Support subscale. The model fit indexes were as follows: χ2 = 176.369, df = 116, χ2/df = 1.52, RMSEA = 0.059, CFI = 0.90, IFI = 0.91, GFI = 0.88. Practice Implications The results of the present study show that the levels of psychometric properties of F‐COPES in Turkish society are acceptable. It is thought that it would be useful to use the F‐COPES in the assessment of coping behaviors of individuals who give care to patients with a chronic mental illness and that it can be used as measurement tool in studies to be conducted with caregivers of patients with a chronic mental illness to assess their coping skills.
Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers’ perspectives of their relatives’ illness. The current study aimed to examine caregivers’ causal attributions of their relatives’ mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers’ causal report of their relatives’ illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives’ illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives' diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative’s illness was noted among caregivers. Further research on caregivers’ causal attributions is warranted to account for and replicate current study findings.
Researchers examined questions of caregivers for individuals with posttraumatic stress disorder (PTSD) by means of a) a content analysis and b) a thematic analysis of posts on an online peer support forum. A total of 292 question posts were analyzed. Content analysis categories were based on previous research and included question motivation (cognitive, emotional, and social) and content (symptoms, prognosis, medication/treatment, coping, support, and seeking reassurance). Three newly identified themes (PTSD behavior identification and response, interpersonal interactions with trauma survivors, and healthcare system concerns) were generated through the thematic analysis. These overarching themes regarding information needs, and their subcategories, are discussed in detail. This study provides a preliminary examination of the information needs of PTSD caregivers, offers suggestions for future research, and discusses implications for the healthcare system.
Background of the Study: The present study aimed to determine the effectiveness of family education on depression, anxiety, and stress of family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Methods: The present study was a randomized clinical trial; it evaluated the effect of a four-week psychological training program on 100 family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Depression, anxiety, and stress of caregivers were determined using DASS, version 21, questionnaire. Results: Based on the analysis, the effect of education was only observed in the nurses' group, and the level of anxiety, stress, and depression decreased significantly. Having compared between the nurse and control group, the anxiety level in this group decreased significantly after the training program, and the two factors of stress and depression decreased considerably and tended to be significant. Results: In summary, the present study has shown that nursing education had a significant impact on anxiety, stress and depression factors in the patients' families; this can be employed as a new approach to improve schizophrenia patients and their families.
Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.
BACKGROUND: The Organisation for Economic Cooperation and Development reports that one in every two people experiences a mental illness in their lifetime, and developed policy guidelines to address the impact of mental health-related issues on employment and health. The results of this policy initiative have been reported in many member countries but no survey findings are available yet for Japan. Previous studies in Japan focused on the social costs of mental illness, but little empirical evidence exists on burdens created by mental illness in individual households. AIMS: This study investigated the effects of mental illness and mental distress on family members' employment and sleep time. Employed men and women family members and unemployed women family members who wanted to work were included in the study. METHODS: Japanese survey data from the 2013 Comprehensive Survey of Living Conditions were analyzed to identify the above-mentioned effects. A propensity score matching method was used to create a valid comparison group for family members of patients with mental illness and distress. RESULTS: For depression, family member average weekly work hours decreased by a range of 1.06 (p%lt;0.01) to 1.18 (p<0.01) for men, and 0.53 (p<0.1) to 1.06 (p<0.05) for women. For dementia (termed "major neurocognitive disorder" in the DSM-5), there were no statistically significant effects on work hours in men, but the work hours of employed women increased, ranging from 1.15 (p<0.05) to 1.25 (p<0.01). Mental illness in a family member also significantly influenced future employment prospects of unemployed women. In family members of patients with dementia, sleep time decreased by a range of 3.6 minutes (p<0.05) to 4.8 minutes (p<0.01) per night for men and 12 minutes (p<0.01) per night for women. DISCUSSION AND LIMITATIONS: These findings can add to the existing evidence on the effects of mental illness and distress on family members' work hours and sleep time in Japan, which are consistent with research from other countries such as Germany, the UK, and the US. This study has two limitations. First, the magnitude of the effect of mental illness is limited with respect to the illness category in our study, since the severity of the condition and the impact on actual daily life may vary across categories or differ even within the same category. Second, measurement error might exist in the self-reported mental illness measures. POLICY IMPLICATIONS: First, cooperation and mutual support between employers and the community are necessary to support working family caregivers by allowing them to adjust work schedules to accommodate caregiving responsibilities. Second, social institutional policies are needed that reduce the burden of informal caregiving for family members with mental illness and increase access to long-term care for those in need. Third, since mental illness and distress have been shown to affect family members' sleep schedules, health care programs must focus on promoting caregivers' general health. IMPLICATIONS FOR FUTURE RESEARCH: To further address the burden of mental illness and distress on family members, future research should examine illness severity as measured by Activities of Daily Living.
Background: Having a patient with borderline personality disorder (BPD) in the family is a complicated and stressful experience. The caregivers’ experiences and the problems they have in care of patient with BPD have remained unknown. The aim of this research was to explore the experiences of the caregivers while living with BPD patients in Iran. Methods: This interpretive phenomenological research was performed on 10 caregivers of patients with BPD at Ibn-sina Hospital in Mashhad, Iran, in 2019. Purposeful sampling was used for sampling. Data were collected through semi-structured interviews and saturated after 16 interviews. The analysis of data was concurrently carried out using the method proposed by Diekelman (1989). The MAXQDA software (Ver.10) was used for data organization. Results: The participants in this study were aged 25 to 55 years. After data analysis, three themes (“life in hell”, “chain to the feet”, and “black shadow of stigma”) and six sub-themes (“disrupted from the life”, “self-discrepancy”, “care bottlenecks”, “in the fence of restriction”, “society dagger” and “resort to secrecy”) emerged. Conclusion: The results of this study showed that the caregivers of patients with BPD during the period of care were faced with a variety of problems. It is suggested that health policy-makers should pay more attention to the problems related to the mental health of caregivers.
Due to inadequate human and financial resource support, the development of mental health services in Cambodia has been undertaken by various non-governmental organizations (NGOs). Schizophrenia is the most common functional psychotic disorder, causing severe and chronic symptoms, and the programs provided by the NGOs should have enhanced the quality of life (QoL) of patients and their caregivers; however, epidemiological research, which is a driving force behind the recognition of mental health as a global public health concern, is lacking for schizophrenia in Cambodia. This study therefore aimed to create QoL evaluation questionnaires available in Khmer (the Cambodian language) for patients with schizophrenia and family caregivers, and to identify the social determinants and predictors of their QoL. This cross-sectional study recruited 59 patients and 59 caregivers attending three clinics operated by two NGOs: the Transcultural Psychosocial Organization (TPO) Cambodia and the Supporters for Mental Health (SUMH) Cambodia. We conducted linguistic validation of the Schizophrenia Quality of Life Questionnaire 18-item version (S-QoL 18) and the Schizophrenia Caregiver Questionnaire (SCQ), then analyzed correlations between the QoL dimensions and socio-demographic factors. The main findings of this study were as follows: 1) the newly created Khmer versions of S-QoL 18 and SCQ are relatively good psychometric tools that are suitable for research to identify patients' and caregivers' needs to improve their QoL; and 2) engaging in paid work or being of the post-Khmer Rouge generation results in higher QoL for patients, but having low household economic status or being affected by chronic disease leads to lower QoL for family caregivers. These findings are useful for enabling community mental health professionals and aid organizations to create programs to lessen the patient and caregiver burden in Cambodia. Further research is necessary to develop practical projects that will improve patients' and caregivers' QoL in various clinical settings in Cambodia.
(1) Background: First-hand accounts of lived experience of suicide remain rare in the research literature. Increasing interest in the lived experience of suicide is resulting in more opportunities for people to participate in research based on their personal experience. How individuals choose to participate in research, and their experience of doing so, are important considerations in the ethical conduct of research. (2) Methods: To understand the experience of providing care for someone who has previously attempted suicide, a cross-sectional online community survey was conducted. This survey concluded with questions regarding motivation to participate and the experience of doing so. Of the 758 individuals who participated in the survey, 545 provided open-ended text responses to questions regarding motivation and 523 did so for questions regarding the experience of participating. It is these responses that are the focus of this paper. Data were analysed thematically. (3) Results: Motivations to participate were expressed as primarily altruistic in nature, with a future focus on improving the experience of the person who had attempted suicide alongside carers to ease distress. The experience of participating was difficult yet manageable, for all but a few participants. (4) Conclusions: With the increasing interest in first-hand accounts of suicide, how individuals experience participation in research is an important focus that requires further attention.
Introduction Cognitive behavioural family intervention (CBFI) may be an effective brief psychosocial intervention for people diagnosed with severe mental illness (SMI) and their families. No systematic review has summarized the effectiveness of CBFI. Aim This review aimed to systematically examine the trial evidence of the effectiveness of CBFI versus treatment as usual (TAU) on improving the outcomes of people diagnosed with SMI and their families. Method Eligible randomized controlled trials were identified from nine databases. Three investigators independently took part in selection of articles, data extraction and risk assessment. Pooled treatment effects were computed using random-effects models. Results Four studies consisting of 524 participants were included. The risk of bias was low–unclear in most areas. The pooled CBFI effect on four service user outcomes including overall positive symptoms, delusions, overall negative symptoms and general psychopathology was significantly improved at post-treatment, compared with TAU, whereas effects on hallucinations and insight were equivocal. Discussion The findings reveal that CBFI is superior to TAU in treating positive and negative symptoms immediately following the intervention. Implications for Practice Mental health nurses may practise CBFI to enrich the psychiatric nursing service and promote nurse-led intervention. However, there is currently no substantial evidence that the intervention is effective over the longer term.
Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support.
Background: Mental illness is associated with misunderstanding and unfavorable attitude worldwide. The belief in its spiritual nature made traditional healers the main service consultants for mentally ill patients. The present study is a cross-sectional study conducted among 425 main family caregivers of mentally ill patients at Assiut University Hospital. The objective of the study was to assess the caregivers’ knowledge and attitude towards mental illness as well as their health-seeking behavior for their mentally ill relatives. Results: The studied caregivers had low scores of knowledge and attitude towards mental illness. Age of the caregivers, their education, and the type of first consulted care and aggressive behavior of the mentally ill relatives were the significant predictors of caregivers’ knowledge and attitude towards mental illness. The majority of caregivers (80.2%) sought advice for the first time from traditional healers. Traditional healers referred only 16.4% of caregivers’ mentally ill relatives to psychiatric care. Conclusion: The studied caregivers had poor knowledge and a negative attitude towards mental illness. Traditional healers were the main consulted care. So, increasing awareness of mental illness is highly recommended.
Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted.
Background: Informal caregivers of people suffering from depressive disorders go through a psychological recovery process. This process is dynamic, deep, catalyzed by hope and optimism and characterized by stages from which specific needs ensue. This study aimed to describe the stages of the psychological recovery process and the level of optimism among informal caregivers of psychiatric inpatients suffering from depressive disorders in order to provide adapted nursing support and psychoeducation and facilitate a patient's own recovery. Methods: A descriptive exploratory study was conducted using a convenience sample of 29 informal caregivers. Participants filled out a sociodemographic questionnaire, a specially adapted Stages of Recovery Instrument (STORI) and the Life Orientation Test-Revised (LOT-R). Results: A mean optimism score of 16.41 showed that informal caregivers are close to the level of the general European population. The sample included all the stages of the recovery process, with 34.5% of participants being in the growth stage. Informal caregivers' stages in the recovery process were negatively associated with the patient's length of illness (Rho = -.683, p = .000) and positively associated with the caregivers' level of optimism (Rho = .564, p = .001). Conclusion: During the inpatient treatment of a close relative suffering from a depressive disorder, informal caregivers go through an individual psychological recovery process involving several stages. In addition to caring for inpatients, nurses are encouraged to meet and support caregivers as soon as possible in their individual recovery process. Furthermore, the development of a suitably adapted clinical tool would facilitate the assessment of the informal caregiver's stage in the recovery process within care units. A multidisciplinary approach is needed in this domain.
Background: Chronic disease is a leading cause of death globally, where inadequate fruit and vegetable consumption and inadequate physical activity are consistently implicated as key contributing risk factors for such diseases. People with a mental health condition are reported to experience a higher prevalence of such risks and experience an increased morbidity and mortality from resultant chronic disease. Despite guidelines identifying a need for services accessed by people with a mental health condition to provide care to address such health risk behaviours, sub-optimal care is frequently reported suggesting a need for innovative strategies to increase the provision of physical health care. An exploratory study was conducted to examine: 1) family carers' expectations of care provision regarding fruit and vegetable consumption and physical activity by health and community services for people with a mental health condition; 2) carer's own health risk behaviour status and perceptions of the influence of the health risk behaviours on mental health; and 3) possible associations of socio-demographic, clinical and attitudinal factors with carer expectations of care provision for fruit and vegetable consumption and physical activity. Methods: Family carers (n = 144) of a person with a mental health condition completed a cross-sectional survey. Participants were members of a mental health carer support organisation operating in New South Wales, Australia. Results: A high proportion of participants considered care for fruit and vegetable consumption and physical activity respectively should be provided by: Mental health hospitals (78.5, 82.7%); community mental health services (76.7, 85.9%); general practice (81.1, 79.2%); and non-government organisations (56.2, 65.4%). Most participants perceived adequate fruit and vegetable consumption (55.9%), and physical activity (71.3%) would have a very positive impact on mental health. Carers who perceived adequate fruit and vegetable consumption and physical activity would have a positive impact on mental health were more likely to expect care for such behaviours from some services. Conclusions: The majority of participants expected care for fruit and vegetable consumption and physical activity be provided by all services catering for people with a mental health condition, reinforcing the appropriateness for such services to provide physical health care for clients in a systematic manner.
Background Caregivers play a pivotal role in providing care for mentally ill patients. Increase in caregiver burden can make them vulnerable to mental illness themselves.Aims We assessed the severity of burden of care and its association with depression, anxiety and quality of life among caregivers of patients with alcohol use disorder (AUD) and schizophrenia. Methods This was an observational, cross-sectional, single-centred study of 50 consecutive caregivers of patients with AUD and schizophrenia. Participants were recruited from the psychiatry outpatient department of a tertiary care hospital between January and June 2017. The caregivers were further assessed by demographic details, Hospital Anxiety Depression Scale for assessment of depression and anxiety, Zarit Burden Interview for assessment of caregiver burden and WHO Quality Of Life-BREF for assessment of quality of life. Statistical data were analysed using GraphPad InStat V.3.06 (California). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Results Burden of care experienced by caregivers of patients with AUD is as high as that of caregivers of patients with schizophrenia (U=1142.5, p=0.46). Caregivers experiencing high burden of care are likely to have symptoms of anxiety (U=22, p<0.001), depression (U=32, p<0.001) and poor quality of life (U=84.5, p<0.001). Female caregivers are likely to experience higher burden of care (U=819.5, p=0.006). For caregivers of patients with schizophrenia, anxiety, environmental health, socioeconomic status and patients’ occupation can predict burden of care, while for caregivers of patients with AUD, depression and environmental health can predict burden of care. Conclusion Our study suggests that caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Caregivers with high burden of care are more likely to have depression, anxiety and poor quality of life. Trial registration number CTRI/2017/03/008224.
National Institute for Health and Care Excellence guidance suggests that carers of individuals with a diagnosis of borderline personality disorder experience high levels of psychological distress, yet few services in the UK offer specific support to this group of carers. This article will describe the development of a psychoeducational carers' group based on schema theory (Young et al, 2003), including the development of the role of carer experts-by-experience as group co-facilitators. Initial outcome data from the pilot suggest that carers are highly satisfied with the group and that it improves their knowledge, understanding and personal well-being.
Background: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.
Aim: The provision and implementation of early intervention for psychosis services (early intervention services [EIS]) has received increasing attention over recent years. Maximizing engagement with EIS is of clinical and economic importance, and exploring the experiences of those who access EIS is vital. Although research has been conducted exploring the experiences of engaging with EIS from both a service user and carer/family member point of view, these data have not been systematically collated to generate new understanding. The primary aim of this study is to review, critically appraise and synthesize qualitative findings relating to the experiences of service users and/or carers and family members engaging with EIS.; Methods: Four databases were systematically searched. Studies were analysed using an inductive thematic analysis approach, within a critical realist epistemological framework. Studies were critically appraised using the critical appraisal skills programme tool.; Results: Fourteen papers were identified for inclusion. Three main themes were identified: the importance of a personal relationship with an EIS staff member, the impact of this relationship and consideration of life after EIS. The importance of a strong relationship with EIS staff was the most prominent theme throughout the papers reviewed.; Conclusions: The quality of the therapeutic relationship with at least one EIS staff member was the single most important factor in determining whether the experience of accessing EIS was a positive or negative one. The majority of the studies reviewed were conducted in the United Kingdom or Australia. Therefore, more research across countries is needed to understand transferability of findings.
Background: Family accommodation (FA) is a phenomenon whereby caregivers assist/facilitate rituals or behaviors related to obsessive–compulsive disorder (OCD). FA, however, has been explored primarily in the Western population, and it is unclear to what extent it might be present in diverse cultural settings. At present, little is known about the extent and predictors of FA among caregivers of adult OCD patients in India. Aims: The study aims to assess the extent, clinical correlates, and predictors of FA in the caregivers of adults with OCD. Settings and Design: Cross-sectional study conducted in an outpatient setting in a tertiary-care hospital. Materials and Methods: Hundred and one adult patients of either gender with Diagnostic and Statistical Manual of Mental Disorders-5 diagnosis of OCD and 101 caregivers were included. The patients were assessed using Yale–Brown Obsessive Compulsive Scale (YBOCS), Hamilton Rating Scale for Depression (HAM-D), World Health Organization Disability Assessment Schedule Version 2.0 12-item version (WHO-DAS 2.0.12), Clinical Global Impressions Scale for Severity (CGI-S), and Clinical Global Impressions Scale for Improvement. The FA Scale-Self Rated Version (FAS-SR) was applied on caregivers after Hindi translation. Statistical Analysis: Descriptive statistics, group comparisons, and Pearson's product moment correlations were carried out. Multiple linear regression modeling was performed with the total FAS-SR score as the dependent variable. Results: About 92% of caregivers displayed at least some form of FA. Higher scores on HAM-D, YBOCS, WHODAS, and CGI-S were associated with higher scores on FAS-SR scale, which reached statistical significance (P < 0.01). Conclusions: FA in OCD appears to be a frequent phenomenon. Higher FA is associated with higher symptom severity and disability, emphasizing its clinical and research relevance for future studies.
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.
Introduction: Families provide frontline caregiving support for people with a diagnosis of schizophrenia. However, research primarily addresses correlates of family functioning from primary family caregivers' perspectives.; Aim: To examine perceived family functioning, particularly its concordance within patient-caregiver dyads, and associated factors in families of people living with schizophrenia.; Methods: A cross-sectional, descriptive correlational design was used. A total of 133 dyads of patients and primary family caregivers from inpatient psychiatric rehabilitation services participated. Descriptive statistics, independent sample t test, one-way ANOVA, Pearson's correlation coefficients, Intraclass correlation coefficient, and stepwise multiple linear regression analyses were applied.; Results: Family functioning was perceived as impaired by patient-caregiver dyads, and there existed a concordance in this regard. Patients' and family caregivers' education levels, patients' suicidality, number of previous hospitalisations, and quality of family-centred care correlated with patients' and primary family caregivers' family functioning.; Discussion: Findings highlight the importance of patient- and family-reported family functioning with implications to address individual and collective concerns.; Implications For Practice: Evidence-based family interventions are crucial for assisting vulnerable families in promoting family functioning. Mental health nurses should facilitate collaboration and open dialogue concerning perspectives of patients and families to improve delivery of comprehensive mental health care.
Introduction: Caregivers play a critical role in detecting and managing psychotic symptoms before young people diagnosed with early psychosis present to care. Little is known about the specific needs of caregivers in navigating pathways to care for their loved one.; Aim: The purpose of this study is to understand the needs of family caregivers and their ways of coping on the pathway to care for early psychosis.; Method: Twenty family caregivers of individuals diagnosed with early psychosis participated in three focus groups that explored caregiving needs provision for early psychosis. Thematic analysis was conducted.; Results: We identified four major themes: education and skill training; raising wider awareness, such as police offers and teachers; adopting technologies for coping; effective coping strategies.; Implications For Practice: These findings provide important insights into caregiving needs and the ways for nurses to address those needs and better equip carers to recognize early symptoms, monitor behavior changes, and navigate care to support people with first episode psychosis. Nursing researchers can use the information to develop on-demand and tailored family-centered intervention in addressing caregivers' needs in education, increasing awareness of early psychosis, and fostering effective coping strategies.
Introduction: Around 60% of carers of relatives with mental health problems report feeling unrecognised by professional health care and many report a lack of engagement, shared decision making and information sharing. There is a paucity of research examining these issues for carers who are also mental health professionals.; Aim: This was an exploratory study to (i) explore the extent of this role among health service staff, (ii) gather an indication of the issues faced by carers when interacting with the health system, and (iii) test the feasibility of conducting research.; Method: Mental health professionals in mental health services completed an online survey that assessed the frequency, content and satisfaction of the experiences of carers.; Results: The sample comprised 453 mental health professionals (74% female), 52% being carers. Half of carers reported having therapist contact and 25% were satisfied with the contact. Negative experiences were related to Information, Decision making and Continuity of care.; Discussion: There was a high frequency of mental health professionals who were carers. The majority were dissatisfied and this was primarily in relation to communication with services.; Implications For Practice: Improving information sharing through training of staff and identification of the system barriers is likely to enhance experiences for service users and families.
Life review (LR) therapy has received considerable support as an effective treatment for depression among older adults. Researchers believe that providing LR does not require extensive training and can be done by family members who are not psychiatric professionals. If so, then training family caregivers to provide LR is a potential strategy for alleviating the shortage of resources for treating depression among the growing population of older adults experiencing depression. A pilot study that explored the feasibility of that strategy had mixed results. Seventeen (89%) of 19 caregiver–care recipient dyads completed the current study, and caregivers provided the LR with self-reported fidelity. However, there was lack of statistically significant improvement in this convenience sample. Implications are provided for future assessments of this strategy with a larger study of caregiver and care recipient dyads.
Objective: To explore the impact of resiliency factors on the longitudinal trajectory of depressive symptoms in patients admitted to the Neuroscience Intensive Care Unit (Neuro-ICU) and their family caregivers.; Materials and Methods: Patients (N = 102) and family caregivers (N = 103) completed self-report assessments of depressive symptoms (depression subscale of the Hospital Anxiety and Depression Scale; HADS-D) and resiliency factors (i.e., mindfulness and coping) during Neuro-ICU hospitalization. The HADS-D was administered again at 3 and 6 months after discharge. The Actor-Partner Interdependence Model (APIM) was used to assess patient-caregiver interdependence.; Results: Baseline rates of clinically significant depressive symptoms were high among patients (23%) and caregivers (19%), and remained elevated through 6-months. Higher depressive symptoms predicted higher levels of symptoms at the subsequent timepoint (ps < 0.05). Higher baseline mindfulness and coping were associated with lower levels of depressive symptoms at all timepoints (ps < 0.001). APIM analysis showed that one's own higher baseline mindfulness was associated with concurrent levels of depressive symptoms in a partner (p < 0.05).; Conclusions: Depressive symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months. Mindfulness is protective against depressive symptoms and interdependent between patients and caregivers. Early, dyadic, mindfulness-based interventions may prevent the development of chronic depression in both patients and caregivers.
Evidence suggests that young carers are less likely to complete or do well in secondary school compared with young people without caring responsibilities. Positive engagement at school is an important correlate of school outcomes, yet quantitative evidence on the factors contributing to young carers’ school engagement is lacking. Drawing on the results of a national school-based survey of Australian children aged 8–14 years (N = 5220) in which about 9% of the sample identified as carers (N = 465), this paper compares the school engagement of non-carers, young carers of a family member with disability, and young carers of a family member with a mental illness or using alcohol/drugs. The analysis shows that school engagement of young carers of people with disability is not significantly different from that of non-carers, but school engagement among young carers of people with a mental illness or using alcohol/drugs is significantly lower. Among this latter group, young carers who are themselves with disability report particularly low levels of engagement. The study concludes that improved support focused on young carers of people with a mental illness or using alcohol/drugs is needed to improve their school engagement.
Objectives: Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods: We performed a case-controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results: Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers' age and marital status were the only significant predictors in the final model. Conclusions: Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers' subjective sleep quality. Clinical Implications: Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.
Introduction: Family members are important supports for veterans with Posttrauamtic Stress Disroder (PTSD), but they often struggle with their own distress and challenges. The Veterans Affairs-Community Reinforcement and Family Training (VA-CRAFT) website was designed to teach family members of veterans with PTSD effective ways to interact with their veterans to encourage initiation of mental health services as well as to care for themselves and improve their relationships. This article presents a pilot investigation of VA-CRAFT.; Materials and Method: Spouse/partners of veterans who had screened positive for PTSD but were not in mental health treatment were randomized to either use the VA-CRAFT website (n = 22) or to a waitlist control condition (n = 19) for 3 months. Veteran mental health service initiation was assessed posttreatment. Spouse/partner distress, caregiver burden, quality of life, and relationship quality were assessed pre and posttreatment. The study was approved by the Minneapolis VA Health Care System Institutional Review Board (IRB).; Results: Differences between groups on veteran treatment initiation were small (Phi = 0.17) and not statistically significant. VA-CRAFT participants reported large and statistically significantly greater decreases in overall caregiver burden (η2 = 0.10) and objective caregiver burden (η2 = 0.14) than control participants. Effects were larger for those with greater initial distress. Effects sizes for other partner outcomes were negligible (η2 = 0.01) to medium (η2 = 0.09) and not statistically significant. Postintervention interviews suggested that only 33% of the VA-CRAFT participants talked with their veterans about starting treatment for PTSD during the trial.; Conclusion: Results from this pilot trial suggest that VA-CRAFT holds initial promise in reducing caregiver burden and as such it could be a useful resource for family members of veterans with PTSD. However, VA-CRAFT does not enhance veteran treatment initiation. It may benefit from enhancements to increase effectiveness and caregiver engagement.
Purpose: The aim of this study is to determine the perceptions of both individuals with severe mental illness and their family caregivers regarding the physical health status of patients. Design and methods: A descriptive qualitative design was implemented, and 11 individuals with severe mental illness and 12 caregivers were analysed. Findings: Two main themes emerged as a result of the content analysis: a "physical health‐related barriers" theme and a "need for better physical health" theme. Practice implications: Patients and their family caregivers experience a number of barriers and difficulties related to maintaining and improving physical health. Psychiatric nurses should recognize these barriers and assist in empowering both patients and their family caregivers to overcome them.
An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = −2.36, p =.02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p <.01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers.
We focused on carers of subjects suffering from eating disorders (ED), and studied the characteristics that mostly expose them to high levels of stress, anxiety, depression and expressed emotion, favoring the accommodation of the family system to the cared person. We administered the accommodation and enabling scale for eating disorders (AESED) questionnaire, the family questionnaire (FQ) and the depression, anxiety and stress scale (DASS-21) questionnaire to 97 carers of 62 ED patients, and investigated the carer's characteristics associated with the scores in the three questionnaires. A personal history of ED, being the primary carer, and caring for a person with a diagnosis of anorexia nervosa are the characteristics that contribute most to aggravate the carers' burden in terms of stress, anxiety, depression, accommodation and enabling. Our findings may help doctors to provide effective support to caregivers and eventually improve the treatment of subjects with ED.
Objective: To assess for the validity of a future trial, the current feasibility study aimed to compare the feasibility and efficacy of a web‐ and workshop‐based education intervention for caregivers of adults with eating disorders. Methods: Psychoeducation was provided to caregivers, who were randomly assigned to a web or workshop condition. Independent samples t tests were conducted to analyse the between‐group effect sizes for intervention condition with regard to change over time. A random selection of participants from each intervention provided qualitative feedback about their experiences. Results: Overall, participants reported positive experiences in both education interventions. From baseline to the end of intervention, small between‐group effect sizes were observed for changes in caregiver accommodation, problem‐solving abilities, the quality of psychological health, and the quality of social relationships, favouring the web‐based intervention, and changes in expressed emotion in the family context, caregiver burden, perceived stress, and the quality of the environment, supporting the workshop intervention. Conclusions: There was a difference in initial feasibility of the web intervention. A future large‐scale trial of these interventions is supported by the results of this feasibility study.
Purpose: This study aimed to examine the quality of family‐centered care perceived by primary family caregivers and its influencing factors in mental healthcare practice. Design: A cross‐sectional, correlational study. Methods: A convenience sample of 121 mental health nurses and 164 primary family caregivers of patients with schizophrenia was recruited from acute psychiatric wards and chronic psychiatric rehabilitation wards in three psychiatric hospitals in Taiwan. Structured questionnaires for mental health nurses were designed to examine nurses' attitudes toward schizophrenia and the importance of families in nursing care. Primary family caregivers were assessed to determine their perceptions of quality of family‐centered care. At least one primary family caregiver of patients was matched to a nurse who took major responsibility for the patient during the hospitalization. Data were analyzed with descriptive statistics, Pearson's product‐moment correlations, independent t‐test, one‐way analysis of variance, and stepwise regression analyses. Results: Quality of family‐centered care perceived by primary family caregivers regarding the provision of general and specific information, as compared to enabling and partnership, coordinated and comprehensive care, and respectful and supportive care, was relatively inadequate. Younger and more educated primary family caregivers, having relatives with schizophrenia in acute wards, less supportive nurses' attitudes toward schizophrenia, and the importance of family in nursing care were correlated with poor primary family caregivers' perceptions of quality of family‐centered care. Nurses' supportive attitudes toward schizophrenia and chronic psychiatric rehabilitation wards where patients received care were key factors in determining better quality of family‐centered care. Conclusions: Findings provide a platform for the development of effective continuing education and training programs to equip mental health nurses with supportive attitudes toward mental illness and an integration of the family in nursing care, which will ultimately improve mental health care for families experiencing mental health problems. Clinical Relevance: Efforts in professional training to address stigma and encourage a family‐centered approach into recovery‐oriented practice for practicing mental healthcare providers, including mental health nurses, are recommended.
Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.; Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported.; Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan.
Objective: To examine the factors associated with caregivers' burden in individuals providing care to family members suffering from serious mental illness. Methods: This Cross Sectional Study was carried out at Armed Forces Institute of Mental Health, Rawalpindi, from May 2015 to December 2015. A purposive sample of 120 family caregivers (60 males and 60 females, age range= 18-65) who were taking care of patients with serious mental illness (i.e. Major Depressive Disorder, Bipolar Disorder & Schizophrenia) for at least one year were recruited from the hospital and assessed through Zarit Burden Interview (ZBI) and Brief COPE inventory. The decline in functional status, and diminished physical capacity compromising the independent living of the care recipient was assessed through Katz Index of Independence in Activities of daily living (ADL) and Lawton Instrumental activities of daily living (IADL). Results: The results suggest that the longer the duration of illness (F=25.71, p < 0.01), with increased impairments of care-recipients, (decline in functional status, F=21.33, p < 0.001; diminished physical capacity F =32.41, p < 0.001) the more the burden experienced by the caregivers. Moreover, caregivers who were married (t=-2.98, p < 0.01), less educated (t =5.48, p < 0.01), lived in rural area (t = -7.99, p < 0.01), had lower monthly income (t = -4.95, p < 0.01) provide longer hours of caregiving (F=19.12, p < 0.001) and used avoidant coping behavior (F= 56.37, p < 0.001) reported significantly higher caregiver burden than caregivers who were unmarried, more educated, lived in urban area and had better income. Conclusion: The results of study demonstrate that caring for family members with serious mental illness impacts the caregivers' wellbeing. It, therefore, highlights the need for support and counseling services for the caregivers to reduce the burden of caring.
There are currently very few studies exploring the area of mental health in the Philippines. The topic on mental illness remains widely stigmatized that even the concerns of the caregivers of the mentally ill stay unexplored on the background. This qualitative study aims to help families, mental health professionals, and the general community, understand the different coping and support needs of caregivers of the mentally ill. The researchers employed a phenomenological method of identifying the coping and support needs of these caregivers whose mentally ill family members were admitted in a Mental Health Facility in Leyte, Philippines. Data collection was made through in-depth interviews with carers/caregivers/relatives of five (5) mentally ill persons. Library and internet desk research in its related literature were also employed. Results of the study revealed two major themes, namely 1) coping strategies of caregivers of the mentally ill, and, 2) support to caregivers of the mentally ill. In the theme of coping strategies of caregivers of the mentally ill, three sub-themes emerged, namely 1.1) religious practice, 1.2) being productive, preoccupied and proactive, and 1.3) acceptance and resolve. Several support programs and services such as provision of mental health education and counseling regarding facts about the illness, its treatment and management, and leniency on watcher requirements during hospital admission are among the recommended support needs identified by the caregivers of the mentally ill.
Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers' perspectives of their relatives' illness. The current study aimed to examine caregivers' causal attributions of their relatives' mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers' causal report of their relatives' illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives' illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives' diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative's illness was noted among caregivers. Further research on caregivers' causal attributions is warranted to account for and replicate current study findings.
Objective: to evaluate the relation between sociodemographics factors, stress and burden of care of family caregivers of patients at a psychiatric hospital admission.; Method: quantitative study, with a cross-sectional correlation design. A total of 112 family caregivers participated, older than 18, in a Brazilian psychiatric hospital. A sociodemographic questionnaire was used to collect data, the Zarit Burden Interview and LIPP Adult Stress Symptom Inventory.; Results: burden of care in family caregivers at a psychiatric hospital admission was significantly associated with stress (p=0.000). The psychological symptoms of stress predicted severe burden. Most caregivers presented a moderate or severe burden, with 52.7% in the resistance phase of stress; 66.1% presented psychological symptoms.; Conclusion: results show the alarming situation of caregivers of patients from a psychiatric hospital, evidencing their own vulnerability to illness. Indeed, the during admission in a psychiatric hospital, not only patients need care, but also their caregivers.
The aim of this article is to investigate the importance of family care in mental health and identify the shortcomings of the Spanish model of health care for the mentally ill. The empirical process comprised three qualitative procedures involving 37 experts from different regions of Spain. In order to guarantee the rigor of the data, a social worker discussion group was set up to create an interview script. Interviews were then carried out with 22 professionals who take care of people with mental illness in various public facilities throughout the country. A second focal group met three times to validate the categorizations analyzed in the interviews. The results of the empirical process indicate a need to remodel the mental health care system, which can be described with reference to five critical characteristics: 1) a lack of financial and human resources for mental health, 2) a lack of effective coordination among all the institutions and authorities involved, 3) a lack of quality resources aimed at rehabilitation and social reintegration as alternatives to institutionalization, 4) a lack of integrated care, and 5) a lack of a common healthcare framework for all professional workers in all the regions. A remodeling of the system is necessary to enable the rehabilitation, recovery, empowerment and development of people with SMD and thus ease the burden and improve the quality of life of family caregivers.
Background: Since the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia. Methods: The databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed. Discussion: The result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend. Systematic review registration: PROSPERO CRD42018099372.
Background Little is known about the relationship between changes of family structure for people with severe mental illness (SMI) and treatment status of SMI during a period of sustained rapid socioeconomic development. This study aimed to explore the relationship between changes of family structure and treatment status of people with SMI in a 21-year longitudinal study in a rural area of China. Methods Epidemiological surveys of mental disorders were conducted in May, 1994, and October, 2015, in the same six townships (total population 170 174 in 2015) in Xinjin county, Chengdu, which is a representative middle-income rural county in southwest China. The six townships were randomly selected from all 12 townships of Xinjin county in 1994. The surveys consisted of two steps: (1) screening procedures for psychosis (face-to-face interviews with the head of each household together with key informant interviews), household by household; and (2) psychiatric interviews of people aged 15 years and older, to identify those with SMI (including schizophrenia, bipolar disorders, and major depressive disorder) according to the International Classification of Mental and Behavioural Disorders-10 (ICD-10) criteria. The two surveys were approved by the university human research ethics committees. Findings The number of people aged 15 years and older who were identified to have SMI was 711 and 1042 in 1994 and 2015, respectively. The mean number of family members was significantly lower in 2015 (3·0 [SD 1·5]) than in 1994 (3·4 [1·5], p<0·0001). Compared with people with SMI in 1994, those with SMI in 2015 had a significantly higher rate of living alone (13·7% vs 9·9%, p<0·013) and without caregivers (15·6% vs 8·4%, p<0·0001). There was a significantly lower rate of parents as caregivers in 2015 than in 1994 (13·5% vs 17·9%, p<0·011). The rate of low family economic status (less than the population mean) for people with SMI was significantly higher in 2015 than in 1994 (p<0·0001). Fewer family members (included in the same family hukou) was significantly associated with low family economic status (p=0·023), and low family economic status was significantly associated with poor treatment status (p=0·015). Interpretation The family structure and status of people with SMI has changed markedly during the rapid socioeconomic development from 1994 to 2015 in rural China. Fewer family members, fewer family caregivers and relative poverty have gradually become major challenges for families who care for people with SMI. How to improve care for people with SMI should be important if targets for Healthy China 2030 are to be met. Community mental health care, the precise poverty alleviation strategy, and the culture-specific family intervention programme should be crucial for comprehensive community mental health care and for improvement of the treatment and recovery of people with SMI in the community. Funding The survey in 1994 was supported in part by the China Medical Board of New York (92-557). The survey in 2015 was supported in part by the Seed Funding Programme for Basic Research (2014–2016), Seed Funding Programme for Applied Research (2014–2016), Contemporary China Strategic Research Theme (2014–2016), Small Project Funding (2014–2016), and Mental Health Research in Chengdu, China (department matching fund, 2015–2017).
Background: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role.
In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.
Background: Existing research suggests that eHealth interventions targeting family carers of individuals with long-term illness offer a promising approach to care delivery. In particular, digital psychoeducational interventions with interactive psychosocial support are well-received with high rates of satisfaction and acceptability. However, development of such interventions for psychosis carers is lacking. We developed a multi-component eHealth intervention specifically for carers of individuals affected by psychosis, called COPe-support (Carers fOr People with Psychosis e-support). Objective: Using mixed methods to evaluate usability, system heuristics and perceived acceptability, we conducted a usability study to establish the suitability of the intervention prototype for the target user group. Methods: Twenty-three carers were recruited to the study and participated in a think-aloud test or a remote online trial of the intervention. Qualitative feedback, post-use System Usability Scale (SUS) scores, and real-world usage data collected from the tests were analysed. These were also supplemented with heuristic evaluation data provided by an independent eLearning technology expert. Results: Participants evaluated the intervention content as useful and helpful, and indicated that the system had satisfactory usability with a mean SUS score of 73%, above the usability quality benchmark threshold. Study results identified some minor usability issues, which were corroborated with the eLearning expert’s heuristic evaluation findings. We used these results to refine the COPe-support intervention. Conclusions: The usability study with end-users and service providers identified real-life usage and usability issues. The study results helped us refine COPe-support and its delivery strategy before its launch as part of a large-scale clinical trial.
Purpose The purpose of this paper is to evaluate the effect of the planned pre-electroconvulsive therapy (ECT) family teaching on depression, anxiety and stress of caregivers of patients with mental disorders receiving ECT. Design/methodology/approach In this quasi-experimental study, 130 participants were randomized allocated into intervention or control groups. The planned family teaching program consisted of four 90 min sessions held during four weeks. Assessments occurred at pre-intervention (one week before the first session), and post-intervention (one months after the four session). Data were collected using demographic questionnaire and Depression, Anxiety and Stress Scale (DASS-21). Mean comparisons were performed using Student’s t-test while effect sizes were estimated by Cohen’s d coefficient. The significance level was considered less than 0.05. Findings The mean scores of the depression, anxiety and stress levels in the intervention group were significantly reduced compared to the control group (p=0.001). Originality/value The family pre-ECT teaching intervention and counseling decreased the depression, anxiety and stress level of family caregivers of patients with mental disorders receiving ECT and the maintenance of other favorable conditions at baseline. These results suggest that even a short-term educational intervention for family members of patients received ECT can improve emotional outcomes of treatment in the family.
PURPOSE OF REVIEW: To review the evolution of family support movement for schizophrenia in India and to report perspectives of family caregivers who are running family support groups across the country in the backdrop of recent legislations in India. RECENT FINDINGS: Family support movement started in the 1990s, mostly by family caregivers independently in multiple cities across the country. Apart from periodic support meetings, they have successfully influenced recent legislations to address the felt needs of families. Mental health professionals need to gain skills to work collaboratively with assertive family caregivers to develop services to support those diagnosed with mental illness. Though there is a need for such movement, funding is poor and very few caregivers of persons with schizophrenia are forthcoming to participate. The formation of national federation with government and non-government partnership could help give the required impetus to the family support movement for persons with schizophrenia in India.
Caregiving experiences matter for caregivers’ own wellbeing, but few studies link caregivers’ burden and benefit perceptions with recipient outcomes. Following the stress process model, I prospectively explore how caregivers’ experiences shape recipients’ mental health. I match US National Health and Aging Trends Study and National Study of Caregivers, employing logistic regression on 781 older adult-informal caregiver dyads. I examine how caregivers’ appraisals shape recipients’ subsequent depression and anxiety, with caregiver mental health and recipient unmet care need as key covariates. Recipients receiving care from caregivers reporting predominantly benefits are less likely to become depressed than counterparts receiving care from persons reporting predominantly burden. Recipients receiving care from persons reporting benefits even alongside low or moderate burden are also less likely to become anxious. Recipient unmet care need, but not caregiver mental health, is associated with recipient mental health. Improving caregiver conditions may have benefits for both dyad members.
Background: Improving patients’ perception of social support is significant not only for their re-adaptation to life but also for alleviating caregivers’ burden. Aim: This study aims to examine an integrated model regarding social support, psychotic symptoms and caregiver burden. Methods: Persons with schizophrenia (N1 = 300) and their family caregivers (N2 = 300) in Xinjin County, Chengdu, China, completed the survey to report their demographics, patients’ perception of social support (Duke Social Support Index), psychotic symptoms (Positive and Negative Syndrome Scale) and caregiver burden (Burden Scale for Family Caregivers, Short Version). Structural equation modelling was utilised to test the proposed model. Results: The degree of caregiver burden differed significantly within subgroups of patients’ gender and education, as well as caregivers’ gender, education and employment. Caregiver burden was negatively related to patients’ age and household income. Social interaction partially mediated the relationship between instrumental and subjective social support (total effect = 0.451, p <.01). Subjective social support fully mediated the impact of social interaction on psychotic symptoms (total effect = −0.099, p <.05). In the final model, instrumental social support was positively associated with social interaction (p <.001) and increased subjective social support (p <.05). Increased subjective social support showed correlation with a lower degree of psychotic symptoms (p <.01), which was related to a lower level of caregiver burden (p <.001). Conclusion: This study shows the associations of patients’ social support with psychotic symptoms and caregiver burden. Culture-specific psychosocial interventions should be provided for both patients and caregivers to enrich external support and reduce psychotic symptoms and caregivers’ burden within the health care environment.
Background: Little is known about the impacts of schizophrenia on different types of caregiving burden. Aim: This study aims to examine how the severity of schizophrenia, social functioning and aggressive behavior are associated with caregiving burden across different kinship types. Method: The analytic sample included 300 dyads of persons with schizophrenia and their family caregivers in Xinjin, Chengdu, China. The 10th edition of the International Classification of Diseases (ICD-10) was utilized to identify the patients, whose symptom severity, social functioning and aggressive behavior were measured. Caregiving burden was estimated using the Burden Scale for Family Caregivers–short (BSFC-s). Results: A higher level of burden was significantly associated with female caregivers, larger family size, lower income, worse symptoms, poorer functional status and more aggressive behaviors. Parent caregivers showed greater burden if the patients had better functioning of social interest and concern or more aggression toward property. Mother caregivers showed greater burden than fathers. Spouses tended to perceive greater burden if the patients had better marital functioning, poorer occupational functioning or more aggressive behaviors toward property. Patients attacking others or a father with schizophrenia was related to a higher burden of child caregivers. A heavier burden of other relatives was correlated with patients’ more verbal aggression and self-harm. Conclusion: This study shows the distinct impacts of disease-related factors on the caregiving burden across different kinship types. Our findings have implications for health-care professionals and practitioners in terms of developing more targeted family-based or individualized intervention to ameliorate burden according to kinship types and deal with behavioral and functional problems in schizophrenia.
(1) Background: The aim of this research was to analyze factors associated with quality of life (QoL) and marital satisfaction in married family caregivers of patients with mental disorders. (2) Methods: A cross-sectional study was conducted in all community mental health services in Goiania municipality, Brazil, in 2016–2017. Married family caregivers of patients with severe and persistent mental disorders were recruited and their QoL and marital satisfaction was assessed by using the World Health Organization Quality of Life Instrument Abbreviated version (WHOQOL-BREF) and Marital Satisfaction Scale. Multiple linear regressions were performed to identify factors associated with QoL and marital satisfaction. (3) Results: For 163 family caregivers, the psychological and environmental QoL domains presented the best and the worst scores, respectively. Factors independently associated with better QoL for caregivers were male caregiver, the younger age of a caregiver, >8 years of schooling, ≥5 years as a caregiver who performed physical activities, caregiver without chronic disease, and no patient’s crisis in the last 30 days. Factors independently associated with marital satisfaction of the caregiver were male caregiver, caregiver with >8 years of schooling, caregiver who received support by relatives to care for the patient, caregiver who performed physical activities, no patient’s crisis in the last 30 days, and patient hospitalization in the last six months; (4) Conclusions: The main predictor for marital satisfaction was support by relatives, and for QoL it was no patient’s crisis in the last 30 days.
Background: Understanding the explanatory models of family caregivers is particularly important in interdependent contexts like India, where they often play a significant role in the help-seeking behaviours, treatment decision-making and long-term care of those diagnosed with mental illness. Aims: This study was planned to explore the diversity of explanatory models among family caregivers at a centre for recovery-oriented rehabilitation services in South India. Methods: The sample for this study included 60 family caregivers of patients referred to Psychiatric Rehabilitation Services within a tertiary-care hospital for mental health and neurosciences. Bart’s Explanatory Model Inventory, including a semi-structured interview and a checklist, assessed the family caregivers’ explanatory model of distress on five domains: identity, cause, timeline, consequences and control/cure/treatment. Results: The results indicated the coexistence of multiple causal explanatory models including psychosocial, supernatural, situational and behavioural contributors. While 36.7% of the caregivers displayed two explanatory models, 33.3% of the caregivers held three explanatory models and 16.6% of the caregivers endorsed four explanatory models. Caregivers shared their concerns about varied consequences of mental illness but less than half of them were aware of the name of the psychiatric disorder. While they accessed various forms of treatments and adjunctive supports such as prayer, medication was the most frequently used treatment method. Conclusions: The findings have implications for collaborative goal setting in recovery-oriented services for persons with mental illness and their families.
Background: Changes in the demographics and respective growth of life expectancy and social needs make informal caregiving crucial component of comprehensive health and social care network, which substantially contributes to the health and well-being of the elderly. The purpose of this paper is to understand the system of care of elderly patients with mental disorders from the perspective of informal caregivers in Lithuania. Methods: We conducted five semi-structured focus group discussions with 31 informal caregivers attending to elderly patients with mental disorders. The data were audiotaped and transcribed verbatim. A thematic analysis was subsequently performed. Results: Five thematic categories were established: (1) the current state of care-receivers: Representation of the complexity of patients' physical and mental condition. (2) The current state of caregivers: Lack of formal caregivers' integration as a team; inadequate formal involvement of informal caregivers. (3) Basic care needs: The reflection of the group needs relating directly to the patient, care organisation and the caretaker. (4) The (non-) Readiness of the existing system to respond to the needs for care: Long-term care reliance on institutional services, lack of distinction between acute/immediate care and nursing, lack of integration between the medical sector and the social care sector. (5) Potential trends for further improvement of long-term care for the elderly with mental disorders. Conclusions: Strengthening of the care network for elderly patients with mental disorders should cover more than a personalised and comprehensive assessment of the needs of patients and their caregivers. Comprehensive approaches, such as formalization of informal caregivers' role in the patient care management and planning, a more extensive range of available services and programs supported by diverse sources of funding, systemic developments and better integration of health and social care systems are essential for making the system of care more balanced.
Purpose of review To better understand the overall burden of schizophrenia, we aimed to explore informal caregivers' experiences by evaluating the current evidence on caregiver and patient characteristics, the type of care provided by caregivers, and the impacts of caregiving on caregivers' lives. Recent findings Caregivers provide direct care, assistance with activities of daily living, and emotional, social, and financial support to individuals with schizophrenia. Increased duration of illness and of care, severe or persistent schizophrenia symptoms, criticism of the care recipient, financial burden, and patient disability intensify caregiver burden. Caregivers of individuals with persistent symptoms often feel overwhelmed, stressed, drained, burdened, frustrated, or angry. Financial impacts of caregiving include treatment costs for care recipients, providing financial support, and lost productivity and income. Depression and anxiety are common health impacts for caregivers, who also have increased physical healthcare resource use relative to healthy controls. Caregiver burden is reduced by formal support programs to improve caregivers' stress management and coping skills and informal sources of social support. Summary Targeted efforts to improve access to care and provide additional support for caregivers are needed to alleviate caregiver burden and improve outcomes for individuals with schizophrenia.
Background: Involving carers is a key priority in mental health services. Carers report the sharing of service users’ safety information by mental health nurses is problematic and seldom takes place. Aims: The impact of an intervention on consensus between nurses and carers on perceptions of risk was investigated. Methods: Carer–nurse risk consensus scores were measured pre- and post-introduction of a structured dialogue (paired t-test/ANOVA). Carer experience with involvement was surveyed pre-test (n = 60) and compared with the post-test intervention group (n = 32) (chi-square tests of linear-by-linear association). Results: Consensus and perceptions regarding type and severity of risk did not change significantly for carers or nurses after engaging in a structured dialogue. Statistically significant differences were found with carers reporting higher levels of satisfaction with services in four out of six areas surveyed. Conclusions: Findings provide support for increasing carer contribution to discussions regarding risk. Further work to embed carer involvement in clinical practice is warranted.
Patient involvement (shared decision making ) and caregiver involvement (family involvement, etc.) are mostly seen as different aspects of care, and efforts to integrate them are limited. This Open Forum posits that both approaches are critical and that caregiver involvement should always be considered during shared decision making, potentially as an integral component. The authors argue that the two approaches can overlap and work synergistically rather than antagonistically. When caregiver involvement is integrated into shared decision making, caregivers may assume any of a variety of roles and need to develop certain competencies to better engage in decision making.
AimTo co‐produce consensus on the key issues important in educating mental health‐care professionals to optimize mental health medication adherence in Black, Asian and Minority Ethnic (BAME) groups. Objectives To identify perceptions of factors enabling or disabling medication adherence. To achieve consensus on content and delivery of an educational intervention for mental health‐care professionals. Methods Data were collected from 2016 to 2018. Using individual interviews and a consensus workshop with carers and service users (SUs treated under the 1983 Mental Health Act 1983/revised 2007 for England and Wales), the experience of taking prescribed mental health medication and perspectives on adherence were explored. Data were analysed using 2‐stage qualitative coding via the software tool NVivo version 11 to analyse transcribed data and to produce the main explanatory categories. Results SU and carer participants' perspectives substantially altered the original research design. The need to educate students rather than trained professionals was emphasized, and they suggested that educational content should be packaged in a contemporary manner (a virtual reality experience). Findings indicated that education should focus upon understanding the impact of taking prescribed antipsychotic medication on both SUs and carers. Discussion The importance of effective communication between health professionals, SUs and carers and a willingness to learn about and appreciate how BAME culture influences perception of mental illness and mental well‐being were highlighted. Conclusion In working co‐productively, researchers need to be flexible and adaptable to change.
People, who assist patients with chronic health problems for work, voluntary or for family reasons, may be affected by burnout. This is defined as an excessive reaction to stress caused by one's environment that may be characterized by feelings of emotional and physical exhaustion, coupled with a sense of frustration and failure. A person who assists a suffering person, beyond the professional role, is indicated generally by the term "caregiver". The definition of Burnout in families is fairly recent, because the psychology of trauma has ignored a large segment of traumatized and disabled subjects (family and other assistants of "suffering people") unwittingly, for a long time. The burnout of secondary stress is due to one's empathic ability, actions trough disengagement, and a sense of satisfaction from helping to relieve suffering. Figley (1995) claims that being a member of a family or other type of intimate or bonded interpersonal relationship, one feels the others' pain. Closely associated with the suffering of the family caregiver is the concept of compassion fatigue, defined as a state of exhaustion and disfunction-biologically, psychologically, and socially - as a result of prolonged exposure to compassion stress and all that it evokes. In families, this can be the cause of serious conflicts and problems, quarrels, verbal and physical aggression, and broken relationships. The intervention on families requires practice and effectiveness approaches performed by experienced professionals. Some approaches focus more specifically, such as those that adopt a cognitive/behavioural technique with direct exposure, implosion methods, various drug treatments and family group psychotherapy. One of the most common models of intervention is based on the principle that the observation unit for the understanding of the disorder is not the single individual but the relationship between individuals.
Background: Family carers provide significant support to people with a mental illness; yet may experience poor mental and physical health themselves. Among limited research addressing the physical health of carers, studies of carers of people with dementia and young people with psychosis suggest increased risk of chronic diseases in conjunction with higher levels of potentially modifiable lifestyle risk behaviours. This exploratory study, conducted with carers of people with various mental illnesses, aimed to determine: carer prevalence of health risk behaviours (inadequate fruit and vegetable consumption, inadequate physical activity, harmful alcohol consumption, and tobacco smoking); interest in changing 'at risk' behaviours; and potential associations of socio-demographic characteristics with risk status and interest in change. Methods: A cross-sectional survey was conducted among family carers of people with a mental illness (N = 144) residing in New South Wales, Australia. Analyses explored risk behaviour prevalence and interest in change, and associations with socio-demographic variables. Results: Inadequate fruit and vegetable consumption was most prevalent (74.8%), followed by engaging in inadequate amounts of physical activity (57.6%); harmful alcohol consumption (36.3%) and smoking (11.8%). The majority of carers were interested in improving 'at risk' behaviours (56.3-89.2%), with the exception of alcohol consumption (41.5%). Previously or never married participants were more likely to consume inadequate amounts of fruits and/or vegetables compared to those married or cohabiting (Odds Ratio [OR]: 4.1, 95% Confidence Interval [CI]: 1.3-12.9, p =.02). Carers in the workforce were more likely to be engaging in inadequate physical activity (OR: 2.6, 95% CI: 1.2-5.7, p =.02); and male participants were more likely to engage in harmful alcohol consumption (OR: 2.9, 95% CI: 1.1-7.9, p =.03). Working carers were approximately five times more likely to report interest in improving their alcohol consumption (OR: 5.1, 95% CI: 1.3-20.5, p =.02) compared to those not currently in the workforce. Conclusions: Results suggest high engagement in health risk behaviours among carers of people with a mental illness, particularly with regards to harmful alcohol consumption. Findings suggest a need to develop and implement chronic disease prevention strategies. Further research with larger representative samples is needed to confirm findings.
Families are considered as primary sources of care for individuals suffering from mental disorders. However, one of the major stresses in families is the infliction of a family member with mental illnesses causing dysfunction in health dimensions or generally their quality of life. Currently, most experts believe that religion can affect physical health and other aspects of human life. So, the aim of this study was to investigate “the relationship between care burden and religious beliefs among family caregivers of mentally ill patients.” This cross-sectional study was carried out in Iran on 152 families with mentally ill patients who were hospitalized in psychiatric wards. The sampling method was nonprobability and consecutive sampling method. The data collection instruments included a demographic characteristic questionnaire, Religious Beliefs, and Zarit Care Burden Questionnaires. The mean score for care burden was 30.99 (SD = 16.45). 5.9% of the participants reported a low level, and 39.5% experienced a moderate level of care burden. Moreover, the mean score for religious beliefs was 115.5 (SD = 13.49), and majority of the participants (70.4%) were endowed with strong religious beliefs. There were no significant associations between care burden and intensity of religious beliefs among the study samples (P = 0.483). Considering the results of this study indicating experience of moderate-to-high levels of care burden in families with mentally ill patients, it is recommended to consider such families and their religious beliefs as contributing factors in coping with challenges of mental disorders.
Depression is one of the most common psychological consequences of caregiving. Caring for patients with severe mental illness (SMI) adds significant challenges to family caregivers' mental health. The purpose of this study was to describe the prevalence of depression among caregivers of SMI patients in rural areas of Sichuan province of China, to examine the influence of social support and care burden on depression, and to explore the intermediary effect of care burden between social support and depression among caregivers of SMI patients. Data were collected from 256 primary caregivers of SMI patients in rural Sichuan Province in China. We used structural equation modeling (SEM) to test the hypothesized relationship among the variables. We found that a total of 53.5% of caregivers had depression. Both care burden (β = 0.599, 95%CI: 0.392-0.776) and social support (β = -0.307, 95%CI: (-0.494)-(-0.115)) were directly related to depression, while social support had a direct association with care burden (β = -0.506, 95%CI: (-0.672)-(-0.341)). Care burden mediated the relationship between social support and depression. For the socio-demographic variables, gender, education level and per capita annual income of household had significant correlations with depression (p < 0.05). The results strongly demonstrated that social support and care burden were predictors of depression, especially social support. Policymakers should fully recognize the role of primary family caregivers in caring for SMI patients and promote interventions to decrease care burden and reduce caregivers' depression by improving social support and network. More attention should be given to female caregivers and caregivers with lower education and lower household income levels.
Purpose: The present study examined the degree to which loneliness mediated the influence of negative (social constraints) and positive (emotional support) relationship qualities on the global mental health of advanced gastrointestinal (GI) cancer patients and their family caregivers. Methods: Fifty patient-caregiver dyads completed measures assessing social constraints (e.g., avoidance, criticism) from the other dyad members, emotional support from others, loneliness, and global mental health. Structural equation modeling was used to examine individual models, and Actor-Partner Interdependence Mediation Modeling was used to examine dyadic associations. Results: Individual path analyses for patients and caregivers demonstrated that emotional support had a significant indirect effect on mental health through loneliness (Bs = 0.32 and 0.30, respectively), but no associations were found between social constraints and mental health. In dyadic analyses, participants' loneliness and mental health were not significantly related to their partner's emotional support, loneliness, or mental health (Bs = - 0.18 to 0.18). Conclusions: Findings suggest that for advanced GI cancer patients and caregivers, emotional support from others alleviates feelings of loneliness, which may lead to better mental health. However, the benefits of emotional support appear to be primarily intrapersonal rather than interpersonal in nature. Additionally, participants endorsed low levels of social constraints, which might explain their lack of relation to loneliness and mental health. Continued examination of interdependence in social processes between cancer patients and caregivers will inform intervention development.
Background Providing unpaid support to family and friends with disabling health conditions can limit a carer’s capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically. Methods This study analysed employment patterns for working-age, co-resident carers of adults with mental illness in an Australian cross-sectional household survey, the 2015 Survey of Disability, Ageing and Carers. Results Significantly more mental health carers were not employed (42.3%, 95% CI: 36.6–48.1) compared to non-carers (24.0%, 95% CI: 23.5–24.6). Employed mental health carers were more likely to work fewer than 16 h per week (carers: 17.2%, 95% CI: 12.8–22.8, vs. non-carers: 11.7%, 95% CI: 11.3–12.1) and in lower skilled occupations (carers: 22.6, 95% CI: 17.5–28.7, vs. non-carers: 15.7, 95% CI: 15.1–16.2). Among the sub-group of primary mental health carers, 25.8% (95% CI: 15.6–39.5) had reduced their working hours to care and a further 26.4% (95% CI: 17.2–38.2) stopped working altogether. In corresponding comparisons between mental health carers and carers for people with other cognitive/behavioural conditions, and physical conditions with or without secondary mental illness, there were no differences except that mental health carers were more likely to be working in a lower skilled occupation than other cognitive/behavioural condition carers (14.8% of the latter, 95% CI 10.1–21.2). Multivariate logistic regression analyses revealed that female mental health carers were less likely to be employed if they were aged 35–54, had no post-secondary education, had a disability, or cared for someone with severe activity limitations. For male mental health carers, having a disability or caring for someone with severe limitations or who did not receive paid assistance were significantly associated with not being employed. Conclusions These results highlight the employment disadvantage experienced by mental health carers compared to non-carers, and similarities in employment patterns across carers for different conditions. Improving the availability of paid support services for people with mental illness may be an important target to assist carers to maintain their own employment.
Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed. Carers from culturally and linguistically diverse communities experience considerably poorer culturally oriented practices in mental health services. Cultural responsiveness is a relevant framework for social work practice with carers and their relatives with mental illness who are from culturally and linguistically diverse communities.
Despite widespread recognition of the usefulness of a biopsychosocial approach in social work, there are limited studies exploring how social workers can use this approach to support the health and wellbeing of carers of young people with first episode psychosis (FEP). Validated questionnaires and anthropometric measures were used to assess the physical health and wellbeing of 42 carers of young people with FEP. Carers had moderate levels of negative caregiving consequences, quality of life, and health status. More than half (52.4%) of carers were experiencing social isolation. Many carers were overweight (78.6%), had a high risk for type 2 diabetes (39.0%), and had hypertension (33.3%). Practical implications of a biopsychosocial approach to social work that supports both clients and their carers are discussed. Social workers can better utilise the biopsychosocial approach in working with young people with first episode psychosis and their carers. Holistic care using a biopsychosocial approach should support individuals and their families in both physical and mental health. Social workers can further support the health and wellbeing of carers by collaborating with medical and other allied health colleagues within multidisciplinary teams, and by referring carers with physical health problems to general practitioners.
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.
Objective: To determine if family caregiver involvement in interventions with patients with delirium improves patient outcomes.; Methods: A search of three databases (Medline-Ovid, CINAHL and Embase) was conducted. Eligibility criteria included adult patients and involvement of family caregivers in any delirium intervention. Data were extracted from each study (determined by PEDro scale) using a customised form. A meta-analysis was undertaken which compared the length of hospital stay and duration of delirium. PROSPERO registration number is CRD42017077650.; Results: Five studies involving 505 participants published over a 5-year period were suitable for inclusion. Low-level evidence demonstrated family caregiver involvement may reduce caregiver's anxiety and hospital staff viewed administration of education to family caregivers as efficient. Meta-analysis suggested family interventions reduce length of hospital stay for patients with delirium. It remains unclear if it affects the duration of delirium.; Conclusion: Family caregivers providing interventions to patients with delirium can improve patient outcomes.
Aim: Brief psychoeducation for families of psychotic patients has been shown to significantly increase family members' knowledge of the disorder. This increase is associated with reductions in relapse and rehospitalization. The aim of this study was to assess the effectiveness of brief psychoeducation about schizophrenia to caregivers of patients in early phases of psychotic disorders in Yogyakarta, Indonesia.; Methods: This study was a prospective, randomized trial with 2 parallel groups. Subjects were patients in the early phase of psychotic disorders and their respective caregivers. Inclusion criteria included a diagnosis of acute and transient psychotic disorders, schizophrenia, schizoaffective disorder or delusional disorder. Participants were randomly assigned to either control or intervention groups by means of paired simple randomization. A brief psychoeducation was conducted for both the patients and caregivers. The interventions were conducted in 4 interactive sessions, once per week. Effectiveness was measured using standardized instruments before the intervention, and at 1 and 6 months post-intervention. Assessment instruments included the Knowledge of Psychosis (KOP), the Compliance and Relapse Assessment, the Brief Psychiatric Rating Scale and the Positive and Negative Symptoms of Schizophrenia scale.; Results: Interventions improved KOP scores significantly in the intervention group. The intervention group had increased regularity of follow-up with health providers and improved compliance. No statistically significant difference in relapses/rehospitalization was observed.; Conclusions: This study demonstrated that brief psychoeducation with caregivers of patients with early phase psychosis was feasible in our setting, significantly improved caregivers' knowledge, and resulted in improved regularity of contact with health providers and compliance with pharmacotherapy.
Purpose: To explore the experience of caregivers of family members with schizophrenia.; Design and Methods: A qualitative approach was adopted to examine the experience of caregivers of people with schizophrenia. The researcher conducted semi-structured interviews with 16 participants recruited through purposive sampling.; Findings: The change findings encompassed five major themes: (a) loss of personal life, (b) mixed emotions, (c) changes in family relationships, (d) the need for professional support and help, and (e) coping strategies.; Practice Implications: Clinicians, including nurses, must be aware of the cultural importance of mental illness, particularly the widespread cultural beliefs and patterns of help-seeking behaviors, to provide culturally sensitive health care and develop empirical strategies for helping both these caregivers and their dependents.
Family caregivers of people with substance abuse are exposed to psychological problems that diminish their life quality and satisfaction. The purpose of this study was to diagnose the efficacy of quality-of-life intervention on stress and life satisfaction of family caregivers of individuals with substance use problem. This is a randomized controlled trial conducted on 80 family caregivers of individuals with substance use problem in the process of withdrawal who were referred to a psychiatric center in southeastern Iran (2018). The intervention group received seven sessions of quality-of-life group counseling every other day based on predetermined content. Twelve weeks post-intervention, data were collected from the control and intervention groups using the Depression Anxiety and Stress Scales (DASS-21) and the Satisfaction with Life Scale (SWLS). The results were analyzed through statistical tests. After group counseling based on quality of life, the mean stress score in the family caregivers of the intervention group (11.50 ± 4.36) was significantly lower than in those of the control group (14.67 ± 4.93) (p = 0.003). Also, in the posttest, the mean score of life satisfaction in the intervention group (24.75 ± 4.28) was significantly higher than that of the control group (19.57 ± 7.33) (p = 0.001). Group counseling based on quality of life exerted a significantly positive impact on reducing the severity of stress and improving life satisfaction among family caregivers of individuals with substance use problem. Therefore, it is highly recommended that healthcare service providers incorporate this counseling approach in substance use withdrawal programs so as to increase the well-being and mental health of family caregivers.
Background and objectives: Severe mental disorders require informal care, usually provided by family members of the affected. The aim of the study is to examine the burden of informal caregiving for individuals with schizophrenia and affective disorders prior to hospital admission in Bulgaria. Methods: The study has an observational, cross-sectional, retrospective design. Individuals with schizophrenia and affective disorders and their caregivers are evaluated upon the patients’ admission for inpatient treatment. The objective and subjective consequences of providing informal care are evaluated with the Burden Assessment Scale (BAS) as a primary outcome measure. Its factor structure and determinants of high burden of care are examined. Results: 117 individuals with mental disorder and 117 caregivers are evaluated, dichotomized in two groups according to the patient's diagnosis. The time spent in informal care is 5.7 hours per day (SD = 2.9) for schizophrenia and 3.9 hours per day (SD = 3.0) for affective disorders, p =.002. The mean score on the BAS is 44.7 (SD = 11.0) and 42.0 (SD = 12.8) respectively, p =.221. A common pattern of the burden with a 5-factor solution explaining 66% of the variance is presented, including the factors Limitations, Conflicts, Guilt, Trap, and Stigma. Contributors for the increase in the BAS are stigma (p <.001), history of threats (p =.014), supervision for disturbing behaviour (p <.048), younger age of the caregivers (p =.043), spouses/partners to the patients (p <.001), less social contacts (p =.017) and provision of informal care on a daily basis (p =.027). Conclusions: The caregivers of individuals with schizophrenia and affective disorders experience considerable objective and subjective burden.
Aims and Objectives: This study aimed to analyse the prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders.; Background: Studies conducted with family caregivers of people with dementia and cancer point out a high prevalence of suicidal ideation among these subjects; however, this aspect has not yet been investigated among family caregivers of people with mental disorders.; Design: This is a cross-sectional study, conducted with 537 family caregivers of patients from 16 Psychosocial Care Centers (CAPS) of the 21st Health Region of the state of Rio Grande do Sul, Brazil.; Methods: Question 17 of the Self-Reporting Questionnaire (SRQ-20) was used for suicidal ideation screening. The prevalence of suicidal ideation was calculated according to sociodemographic and care variables, with confidence interval estimate (95% CI). Crude and adjusted odds ratios were calculated by logistic regression. The Guidelines to Reporting of Observational Studies in Epidemiology (STROBE Statement) was adhered in this study (See File S1).; Results: The prevalence of suicidal ideation found in this study for the 30 days preceding the interview was 12.5% (95% CI: 10-15). The factors associated with the outcome were lower age, lower schooling, feeling of burden, self-report of stress problem and dissatisfaction with family relationships.; Conclusion: The prevalence of suicidal ideation among the studied family caregivers was high and strongly associated with issues regarding care, showing the need for interventions that provide support.; Relevance For Clinical Practice: Nurses are a large part of the workforce of the community mental health services. The careful characterisation of the subjects who show suicidal ideation, as performed in this study, may reveal specificities capable of refining the diagnostic potential for establishment of action plans in a timely manner, avoiding possible attempts or even the consummation of suicide.
Introduction. Informal Primary Caregivers (IPC) of people with borderline personality disorder (BPD) experience a significant burden, making it important to determine their specific needs. Objectives. Cross-sectional study aimed at adapting and establishing the reliability of the Questionnaire on the Needs of Family Members of People with Severe Mental Disorders to identify felt and unfelt needs that may or may not have been met in IPCs of patients with BPD and suggest intervention strategies to effectively address them. Method. The adapted version of the instrument was completed by 80 IPCs of patients with confirmed BPD diagnosis. Results. Cronbach’s alpha coefficients for different groups of needs evaluated through the instrument were: Knowledge/information = .77, Instrumental support = . 78, Participation = .63, and Personal support = .74; and for the total score = .86. The most important unmet felt needs were: 1. having information on interventions for patients and caregivers, legal and administrative aspects, and available support services; 2. having coping skills to deal with crises and manage patients’ risk behaviors; 3. receiving professional care to reduce stress; and 4. being listened by health professionals, express their personal opinions, and need for rest. Conclusions. The adapted instrument showed satisfactory internal consistency in IPCs of patients with BPD. The results highlight the urgent need for interventions for this population, focusing on psychoeducation, assertiveness training, stress management, and problem solving.
Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers' experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co-designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.
Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness.; Material and Methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions.; Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver.; Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.
This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations. The project examined the experiences, views, and preferences of consumers of mental health services, including people with experiences of being on Community Treatment Orders (CTOs), in relation to enabling SDM in mental health service delivery. It also examined the perspectives of informal family members or carers and mental health practitioners. Victoria currently has high rates of use of CTOs, and the emphasis on SDM in the Mental Health Act, 2014, is proposed as one method for reducing coercion within the mental health system and working towards more recovery-oriented practice. Our findings cautiously suggest that SDM may contribute to reducing the use of CTOs, encouraging less use of coercive practices, and improving the experience of people who are subject to these orders, through greater respect for their views and preferences. Nonetheless, the participants in our study expressed an often ambivalent stance towards CTOs. In particular, the emphasis on medication as the primary treatment option and the limited communication about distressing side effects, alongside lack of choice of medication, was a primary source of concern. Fears, particularly among staff, about the risk of harm to self and others, and stigma attached to complex mental health conditions experienced by consumers and their families, represent important overarching concerns in the implementation of CTOs. Supporting the decision-making of people on CTOs, respecting their views and preferences about treatment, and moving towards reducing the use of CTOs require system-wide transformation and a significant shift in values and practice across mental health service delivery.
Background: Burden of caregivers of people with mental illness (PWMI) is considered to be a negative impact of the care provided by the family to the patient. However, little is known about the extent of the burden among caregivers of PWMI in Ethiopia. The aim of this study, therefore, is to assess the magnitude and associated factors of burden among caregivers of PWMI at Jimma University Medical Center, 2017.; Methods: Institution-based cross-sectional study design was employed among 406 conveniently selected caregivers of PWMI and interviewed using a structured questionnaire. Family burden interview schedule (FBIS) was used to assess burden of caregivers. Bivariate and multivariable linear regression analyses were performed to determine the predictors of burden among caregivers.; Results: Nearly two-thirds [264 (65.0%)] of the participants were male with a mean age of 38.45 ± 12.03 years. The mean score for burden among caregivers on family burden interview schedule was 23.00 ± 10.71. Age of the caregivers (β = 0.18, p < 0.001), being female caregiver (β = 2.68, p < 0.01), duration of contact hours with the patient per day (β = 0.74, p < 0.001), perceived stigma by the caregiver (β = 0.47, p < 0.001), and providing care for patients who had history of substance use in life (β = 1.52, p < 0.05) were positive predictors of higher burden among caregivers. Whereas, caregivers' income (β = 7.25, p < 0.001), caregivers who had no formal education (β = 4.65, p < 0.01), and caregivers' social support (β = 0.78, p < 0.001) were negatively associated with higher burden among caregiver.; Conclusion: Caregivers of people with mental illness experience enormous burden during providing care for their relatives with mental illness. Therefore, creating community awareness and targeted interventions in the area of treatment access, stigma, financial, and other social support for people with mental illness and their caregivers would help out to reduce these burdens.
Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through:
Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients. •First qualitative study to identify mechanisms behind family carer spillovers.•Mechanisms were ‘information’, ‘management’, ‘patient’, ‘alienation’, ‘compliance’, ‘timing’.•Summarised by mnemonic IMPACT and relevant across conditions.•Each mechanism generated positive and negative spillover.
Background: Bipolar disorder (BD) is a chronic mental disorder, and family members play a key role in taking care of the affected individuals. The recovery movement has gradually transformed mental health services, for example, through the introduction of peer support services (sharing of expert-by-experience knowledge), and it has challenged the prevailing view that people with mental illness cannot recover.; Aims: Through this study, the researchers explored how family caregivers in a Chinese context conceptualise recovery, how caregivers interact with peer support workers (PSWs) and how they perceive peer support services.; Methods: Fourteen family caregivers from community settings participated in individual semi-structured interviews. The data were analysed through thematic analysis.; Results: Family caregivers had multifaceted definitions of recovery and had various degrees of contact with PSWs. The views and experiences shared by PSWs were hope-instilling for caregivers and changed their perception of BD and their loved ones. Some limitations of PSWs were also identified.; Conclusion: Social connectedness and functional outcomes were important indicators of recovery among Chinese family caregivers. Caregivers began to understand the benefits of PSWs after experiencing their services. Peer-led services could be a helpful support for both service users and family caregivers.;
Aim: The present study examined the association between depression of persons with dementia and family caregiver burden, as well as whether the association depended on the level of caregivers' ability to find positives in caregiving.; Methods: Based on the medical records of a local mental health hospital and the statistics of an epidemiological survey, this cross-sectional study included 157 major family caregivers of non-institutionalized dementia patients in the rural sector of Western China's Sichuan Province. They responded to the Cornell Scale for Depression in Dementia, a short version of the Zarit Burden Interview, a subscale of a caregiver meaning scale and demographic questions.; Results: Controlling for the demographic variables of the caregivers, the present study found that dementia patients' depression level was significantly associated with caregiver burden (P < 0.001), and the caregivers' levels of finding positives in caregiving significantly moderated the association (P < 0.05). Furthermore, the positive correlation between dementia patients' depression and caregiver burden was weaker among the family caregivers with a high level of finding positives in caregiving, compared with those with a low level of finding positives in caregiving.; Conclusions: This research suggests the importance of facilitating family caregivers of dementia patients to find positives in caregiving. It provides initial data for the development of dementia caregiver burden interventions that are based on the understanding of the deep meaning of dementia caregiving.
Background/aim: Families, especially in Chinese society, play a crucial role in care provision for relatives with schizophrenia, but the burden of caregiving has shown to cause significant distress among caregivers. The aim of the study is to assess the degree of stress and burden among caregivers of relatives with schizophrenia and early psychosis in Hong Kong.; Methods: A cross-sectional survey was conducted in 454 caregivers recruited from two mental health non-governmental organisations and the outpatient clinic of a psychiatric hospital. Data were collected through a questionnaire administered via face-to-face or telephone interview.; Results: Caregivers attributed most of their conflicts with the ill relative or other family members to their own lack of knowledge of patient symptoms (56.4%), other family members' lack of knowledge of patient symptoms (46.9%) or the ill relative's refusal to take medications (43.0%). Most of the caregivers had corresponding stress scores of 5 (scale: 1-5; mean = 3.88, 3.85 and 4.19, respectively). Nearly, a third (30.2%) of the caregivers surveyed reported an overall stress score of 5 (mean = 3.56). Regarding psychosocial problems, 78.0%, 49.8% and 45.8% of caregivers experienced anxiety, reduced socialising and insomnia, respectively.; Conclusions: Caregivers of relatives with schizophrenia and early psychosis experience significant stress and psychosocial burden. To help them cope with distress, community support services should be strengthened. Moreover, long-acting injectable antipsychotics are worth considering to alleviate caregiver burden due to ill relatives' medication compliance issues.
Family members often provide significant support and care to their relative who has a mental illness. Nonetheless, how family members might be part of an individual's mental health recovery journey is rarely considered. The aim of this study was to investigate how those with a mental illness define 'family' and the role of family (if any) in their recovery journey. A qualitative approach was used. Purposive sampling and snowballing were used to recruit and conduct semi‐structured interviews with 12 people who have been diagnosed with a severe mental illness. Participants defined family in various ways with some being very inclusive and others more selective. There was acknowledgement that family contributed to the individual's recovery in a myriad of ways, although the need for boundaries was stressed. While no participants suggested that their family might become active treatment facilitators, they did want clinicians to support them in talking to their family about their mental illness. A multifaceted approach is needed to promote family‐focused recovery practice. The needs of different family members and the needs of the family as a group should be considered concurrently alongside the individual's needs in their recovery plan. Individual and relational components of recovery should be embedded in policy and clinical practice.
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.
Purpose: Schizophrenia places a heavy burden on the individual with the disorder, as well as on his or her family; this burden continues over the long course of the disease. This study aimed to provide an overview of the positive and negative impacts of schizophrenia on family caregivers.; Methods: From April to June 2017, two investigators conducted a systematic review and meta-summary of studies obtained from five electronic databases and the footnotes and citations of eligible studies. Qualitative studies that explored the experiences of family caregivers of individuals with schizophrenia were included. Study findings published between 1993 and 2017 were extracted and synthesised using narrative and summative approaches.; Results: After the removal of duplicates, independent reviewers screened 864 records. Subsequently, 46 full-text articles were assessed for eligibility and 23 papers were included in the synthesis. Negative impacts identified were traumatic experiences, loss of expectation of life and health, lack of personal and social resources, uncertainty and unpredictability, family disruption, conflict in interpersonal relationships, difficulty in understanding, and stigma and heredity. Meanwhile, the positive impacts identified were family solidarity, admiration, affirmation, affection, compassion, learning knowledge and skills, self-confidence, personal growth, and appreciation.; Conclusions: Analysis of the studies suggested that family members of individuals with schizophrenia face a series of traumatic situations during the course of the illness. Their subsequent experiences can be conceptualised as a continuous circle of caregiving, in which the positive impacts can be centrally positioned within the negative impacts.
Introduction: Many studies have investigated the correlates of affiliate stigma among family caregivers of people with mental illness (PWMI). Thus far, no systematic review or meta‐analysis has been conducted to synthesize these results. Aims/Question: This review aims to identify the correlates of affiliate stigma among family caregivers of PWMI. Method: We searched four databases including PubMed, PsycINFO, EMBASE and Web of Science for studies that investigated the association of affiliate sigma with socio‐demographic, psychosocial and disease‐related factors. Results: Twenty‐two studies including 3,381 participants met the inclusion criteria. Eighteen variables were included for the meta‐analysis. For disease‐related characteristics, only "disease attribution" and "care time/day" were associated with affiliate stigma. For psychosocial characteristics, "support from others," "burden," "depression," "stress," "distress" and "face concern" were related to affiliate stigma. Discussion: This review is the first to assess the association of affiliate stigma with other characteristics of interest. However, the findings are limited due to a very small number of studies. Researchers should conduct in‐depth study in this area and improve the quality of the literature. Implications for practice: Health‐focused interventions for family caregivers such as respite care, self‐help groups, online support program and psychosocial education can mediate the impact of affiliated stigma.
Background: A substance-dependent person affects almost all aspects of family life, for example, interpersonal and social relationships, leisure time activities, and finances. Substance dependence invariably increases conflicts, negatively affects family members, and burdens the families. Aims and Objectives: To assess family burden perceived by primary caretakers (PCTs) of individuals with substance dependence and relevant clinico socio demographic profile of individuals as well as PCTs. Materials and Methods: Individuals and primary caretakers (n = 150) attending psychiatry OPD and emergency were included in the study. Individuals were selected by convenient sampling. The individuals and PCTs were administered psychiatric thesis/interview pro forma and drug abuse schedule. PCTs were administered "family burden interview schedule." Results: Majority of caretakers had moderate objective burden (65.3%) and severe subjective burden (74%). Objective burden was more in areas of "financial burden" and "disruption of routine activities." Objective burden had correlation (P < 0.05) with monthly family income, monthly expenses on substance, number and type of substances, treatment history, sex and type of caretaker. Subjective burden was dependent on sex and type of caretaker and treatment history of the patient. Conclusion: Our study concluded that substance dependence is associated with substantial burden for family members, more for subjective and objective burden in families with low income and with patients who are dependent on more number of substances and had taken treatment in the past. Higher proportion of severe burden was reported by female caretakers. These findings suggest directions for future research in this area.
The aim of this study was to test the hypothesis that a negative reaction to the illness would be reduced through the "Collaborative Care Skills Workshops" programme among Spanish caregivers of relatives with an eating disorder. Caregivers were randomly allocated to either the skill‐based workshops (n = 32) or psycho‐educational workshops (n = 31), and assessments were carried out over time (T0 vs. T1 vs. T2). There were no significant differences between interventions on primary or secondary caregiver outcomes or among the patients themselves. However, caregivers in both interventions showed greater improvement at T2 on accommodating and enabling behaviours and an improvement at T1 in terms of psychological distress and appraisals towards the caregiving experience. Eating pathology, psychological distress, and some indices of psychosocial adjustment were significantly lower among the patients following both interventions (T1). Overall, both interventions may be able to help caregivers and patients to decrease their psychological distress. Highlights: Involvement of family members in the treatment could be the best resource for aiding in their relative's recovery.This is the first controlled study to test the effectiveness of the Collaborative Care Skills Workshops in Spanish caregivers.Both interventions could be implemented as both help Spanish caregivers and patients.
Purpose: To examine the illness perceptions of informal carers of persons with depression, using the theoretical framework of Leventhal's Common-Sense Model (CSM) and to determine whether these illness perceptions are predictors of anxiety and depression, as measures of psychological well-being. Methods: A cross-sectional survey was conducted with 94 Maltese individuals caring for a person with depression within a community setting. The informal carers completed the modified Illness Perception Questionnaire (IPQS-Relatives version) and the Hospital Anxiety and Depression Scale (HADS). Data were analysed using descriptive statistics, Spearman's rank order correlations and ANCOVA regression models, to identify predictors of anxiety and depression respectively in the informal carers. Results: The informal carers perceived depression as a cyclical condition, having negative consequences on both the patient and on themselves. Participants perceived the causes of depression to be mainly psychosocial in nature and generally viewed the treatment as effective. Caring for a person with depression was perceived as having a considerable negative emotional impact on them. Years of caring was identified as a predictor of anxiety accounting for 20.4% of the variance, and timeline chronicity beliefs, consequences (relative) and illness coherence were identified as predictors of depression, accounting for 56.8% of the variance. Conclusion: Illness cognitions are significant predictors of depression, thereby suggesting that cognition-based interventions may be effective in targeting depression in these informal carers. Thus, health professionals should explore the carers' personal understanding of the disease, their timeline beliefs and the perceived consequences of providing care, as they relate to their psychological well-being.
Purpose: To know the health perceived by the family caregivers of Alzheimer's disease, according to the relationship of kinship and the duration of the care in mild‐to‐moderate stage of dementia. Design and Methods: Cross‐sectional descriptive study in 255 caregivers. The instruments used were an ad hoc questionnaire and the Goldberg General Health Questionnaire (GHQ‐28). Findings: The presence of acute and chronic mental pathology has been observed. Specifically in the spouses and children, severe depression and social dysfunction, and in periods of care between 2 and 5 years, mainly anxiety and insomnia have been observed. Practice Implications: The relationship of kinship and the duration of care must be taken into account in the planning of specific interventions in these caregivers.
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.
Mental health continues to fight for acceptance in health care all over the world. The need for a separate act for mental illnesses proves this fact even more. The very nature of the mental illness has necessitated legislation to aid the service providers and service users. The Mental Healthcare Act 2017 has taken great initiatives in terms of protection of human rights for people with mental illness such as the inclusion of mental illness in health insurance, stress on informed consent, decriminalization of suicide, and introduction of advance directives (ADs) and punishment to those who violate the law. However, in a country like India where the family as a unit has more significance than personal autonomy, the new act emphasizes the patient's rights and, in doing so, may make the doctors more defensive and fearful in making clinical decisions, thus shifting the burden to the shoulders of the family members. There is a need for suitable amendments to include the family's concerns as well; otherwise, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics. Qualitative studies are required from the family's perspective to illustrate the hindrances that the patients' families are facing. In the context of Indian family structure and dynamics and working in the Indian community, we feel that without suitable amendments to include the family's concerns, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics.
Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.
Aims First-episode psychosis (FEP) is a major life event and can have an adverse impact on the diagnosed individual and their families. The importance of intervening early and providing optimal treatments is widely acknowledged. In comparison to patient groups, literature is scarce on identifying treatment predictors and moderators of caregiver outcomes. This study aimed to identify pre-treatment characteristics predicting and/or moderating carer outcomes, based on data from a multi-element psychosocial intervention to FEP patients and carers (GET-UP PIANO trial).; Methods: Carer demography, type of family relationship, patient contact hours, pre-treatment carer burden, patient perceptions of parental caregiving and expressed emotion (EE) were selected, a priori, as potential predictors/moderators of carer burden and emotional distress at 9 months post treatment. Outcomes were analysed separately in mixed-effects random regression models.; Results: Analyses were performed on 260 carers. Only patient perceptions of early maternal criticism predicted reports of lower carer burden at follow-up. However, multiple imputation analysis failed to confirm this result. For treatment moderators: higher levels of carer burden at baseline yielded greater reductions in carer emotional distress at follow-up in the experimental group compared with treatment as usual (TAU). Higher levels of perceived EE moderated greater reductions in carer reports of tension in experimental group, compared with TAU, at follow-up. In younger caregivers (<51 years old), there were greater reductions in levels of worry during the baseline to follow-up period, within the experimental group compared with TAU.; Conclusion: The study failed to identify significant treatment predictors of FEP carer outcomes. However, our preliminary findings suggest that optimal treatment outcomes for carers at first episode might be moderated by younger carer age, and carers reporting higher baseline levels of burden, and where patients perceive higher levels of negative effect from caregivers.
A cross-sectional descriptive correlation study was performed to investigate the risk of posttraumatic stress disorder (PTSD) among 300 family caregivers of individuals with schizophrenia or bipolar disorder and examine the relationship between perceived social support and risk of PTSD. The Arabic version of the PTSD Checklist for DSM-5 (APCL-5) was used to investigate risk of PTSD; the Arabic version of the Multidimensional Scale of Perceived Social Support was used to measure perceived social support. Mean score of the APCL-5 was 46.1, indicating risk of PTSD among family caregivers. A negative moderate correlation was found between risk of PTSD and perceived social support. The caring process is demanding and highly stressful, putting family caregivers at risk for PTSD. Social support is crucial in decreasing this risk. [Journal of Psychosocial Nursing and Mental Health Services, xx(x), xx-xx.].; Copyright 2019, SLACK Incorporated.
Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden.; Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.; Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.; Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.
This article presents the findings of exploratory research on the mental health and community services experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis. The aim of the research is to explore the experiences of carers in relation to provisions for carers and people from LGBTIQ communities in the mental health legislation, policy and practice standards in the state of Victoria in Australia. Data were collected from online surveys and in-depth interviews and analysed according to the alignment of the stated intent of these documents and the actual experiences of carers.
This exploratory study examines the experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis, in relation to conflict and safety in their interactions with mental health service providers. Carers were surveyed to gain an understanding of their experiences of services. The data were analysed according to the six main originating domains in the Safewards model where conflict may arise as well as the nature of the activity in the domain with the addition of new categories of 'carer characteristics' and 'carer modifiers'. The study findings identified the main domains where conflict occurred, as well as modifications to activities undertaken by staff, consumers, and carers that reduced tensions and misunderstandings. Carer responses revealed the interplay between the Safewards domains and activities and the location of much of what was considered conflict with staff reflecting the regulatory environment services were provided in. This study highlights distinctive carer characteristics and the important conflict modifying role of carers. The findings suggest that the expansion of the Safewards model to include carers may be beneficial.
Informal carers are increasingly involved in supporting people with severe and enduring mental health problems, and carers' perceptions impact the wellbeing of both parties. However, there is little research on how carers actually make sense of what their loved one is experiencing. Ten carers were interviewed about how they understood a loved one's psychosis. Data were analysed using a hermeneutic-phenomenological approach. Three themes described the carers' effortful quest to understand their loved one's experiences while maintaining their relational bonds. Carers described psychosis as incomprehensible, seeing their loved one as incompatible with the shared world. To overcome this, carers developed hermeneutic 'mooring points', making sense of their loved one's unusual experiences through novel accounts that drew on material or spiritual explanations. The findings suggest that informal carers resist biomedical narratives and develop idiosyncratic understandings of psychosis, in an attempt to maintain relational closeness. We suggest that this process is effortful - it is hermeneutic labour - done in the service of maintaining the caring relationship. Findings imply that services should better acknowledge the bond between carers and care-receivers, and that more relationally oriented approaches should be used to support carers of people experiencing severe mental health problems.
Purpose: To evaluate the quality of life (QoL) and social support among family caregivers of a family member with a mental illness and to identify factors associated with the QoL.; Methods: This is a cross-sectional study, where participants were recruited and independently interviewed using a questionnaire, consisting of demographic characteristics, the Medical Outcome Survey SF-36 form, and social support rating scales. Multiple stepwise regression analysis was used to analyse the factors related to QoL.; Results: 181 family caregivers were recruited in Shandong province, China. On a composite QoL score, family caregivers perceived that their QoL was poor (68.3), especially in the aspects of role-physical (61.3), role-emotional (57.6) and mental health (63.0). We also found family caregivers received low social support, especially in objective support and utilization of social support. Patient's illness state, care time, financial burden and objective support were significantly correlated to caregivers' QoL in the physical component score (PCS). Patient's illness state, patient's marital status, family monthly income, caregiver's knowledge about the illness, caregivers coordinating caring, life and work, subjective support received and utility of support were significantly associated with caregivers' QoL in the mental component score (MCS).; Conclusions: Social support had a significant correlation with caregivers' QoL. Caregivers should be encouraged to request assistance from other family members and friends in providing care, especially when caregivers are unemployed or long-time carers. Mental health education campaigns and helping families to maintain and enhance a supportive social network may provide useful means to improve caregivers' QoL.
PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. RESULTS: A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs (P <.05), with a significant interaction (P =.02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. CONCLUSION: High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted.
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.
Aims: This literature review examines the effectiveness of the family interventions (FIs) targeted at the primary caregivers of people diagnosed with schizophrenia on improving the knowledge level of schizophrenia and health‐related outcomes. Methods: A total of nine studies were reviewed from December 1999 to May 2017. The methods described by the Center for Reviews and Dissemination were used to guide this review. Results: The FIs showed consistent improvement in the knowledge level of schizophrenia among participants for various follow‐up intervals. In addition, FIs were found to be superior to treatment as usual in influencing health‐related outcomes. Conclusions: Implications of the findings for mental healthcare practice to include primary caregivers with the patient in the treatment process.
Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.
Carers of persons with borderline personality disorder (BPD) experience high burden. Treatment guidelines advocate involving carers in comprehensive therapy approaches. This study is a randomized controlled trial of group psychoeducation, compared to waitlist. Group psychoeducation involved 6–8 carers per group and focused on improving relationship patterns between carers and relatives with BPD, psychoeducation about the disorder, peer support and self-care, and skills to reduce burden. Carers were randomized into intervention (N = 33) or waitlist (N = 35). After 10 weeks, those in the intervention reported improvements in dyadic adjustment with their relative, greater family empowerment, and reduced expressed emotion, sustained after 12 months. There were also improvements in carers' perceptions of being able to play a more active role, such as interacting with service providers. This study demonstrates that providing structured group programs for carers can be an effective way of extending interventions to a group experiencing high burden.
Background: Coercion and restraint practices in psychiatric care are common phenomena and often controversial and debatable ethical issue. Caregivers' attitude and perspective on coercion and restraint practices on psychiatric inpatients have received relatively less research attention till date. Aims: Caregivers' attitude and perspective on coercion and restraint practices on psychiatric inpatients. Methodology: This is a hospital-based, a descriptive, cross-sectional study. A total of 200 (n = 200) consecutive patient and their caregivers were chosen between June 2013 and September 2014 through computer-generated random numbers sampling technique. We used a semi-structured interview questionnaire to capture caregivers' attitude and perspective on coercion and restraint practices. Sociodemographic and coercion variable were analyzed using descriptive statistics. McNemar test was used to assess discrete variables. Results: The mean age was 43.8 (±14.9) years. About 67.5% of the caregivers were family members, 60.5% of them were male and 69.5% were from low-socioeconomic status. Caregivers used multiple methods were used to bring patients into the hospital. Threat (52.5%) was the most common method of coercion followed by persuasion (48.5%). Caregivers felt necessary and acceptable to use chemical restraint (82.5%), followed by physical restraint (71%) and electroconvulsive therapy (ECT) (56.5%) during acute and emergency psychiatric care to control imminent risk behavior of patients. Conclusion: Threat, persuasion and physical restraint were the common methods to bring patients to bring acutely disturbed patients to mental health care. Most patients caregivers felt the use of chemical restraint, physical restraint and ECT as necessary for acute and emergency care in patients with mental illness.
This study explored the experiences of individuals who self‐identify as providing support to a friend, family member, or significant other with posttraumatic stress disorder (PTSD). We analyzed and coded a total of 345 posts from an online support forum, with reference to 13 categories (finances, life interference, venting/emotional expression, maltreatment, sexual behavior, distress, prevented expression, physical health, communication, no personal space, isolation, and compassion fatigue). Categories for coding were established a priori and based on previous literature about caregiving and supporting. Results suggested that informal PTSD caregivers experience concerns involving interpersonal relations, emotional turmoil, and barriers to care for themselves and the individual they are caring for. This study provides a preliminary examination of the experiences and concerns of PTSD caregivers. Implications and suggestions for future research are discussed.
Background: Depression is a major psychiatric disorder worldwide. It is a leading cause of individual disability and family burden worldwide. The aim of the study: the aim of this study was to investigate the effect of family intervention on caregivers' burden, depression, anxiety and stress among relatives of depressed patients. Subjects and method: A quasi-experimental design was conducted at the inpatient and outpatient Psychiatric Department Mansoura University Hospital, Egypt. Ninety five families participated in this study (n = 95). Pre-tests and post-tests (n = 95), and test 3 months after intervention were conducted on eighty six (n = 86). The caregivers were divided into ten groups, which ranged from 8 to 10 caregivers in each group; each group attended 12 sessions. A structured interview questionnaire for personal data for patients and their caregiver, Caregiver Burden scale, quality of life scale (QOL) and Depression, Anxiety and Stress Scale-21 items (DASS-21) were used to collect data. Results: The findings of the study indicate that caregivers' burden, depression, anxiety and Stress level significantly reduced, and quality of life significantly improved after implementation of family intervention. There is a negative correlation between QOL and Caregivers' burden, and their feeling of depression, anxiety and stress, while there was a positive correlation between caregivers' burden and their feeling of depression, anxiety and stress. Conclusions: Based on the current results, it can be concluded that caregivers' burden, |depression, anxiety and stress are highly prevalent among caregivers of patients with depression and significantly improved after implementation of family intervention one month after, moreover it slightly decreased three months after intervention. This conclusion leads to accept the hypothesis of the study that family interventions improve the caregivers' burden, QOL, and feelings of depression, anxiety and stress. Further research is needed to follow the intervention 6 and 12 months after family intervention.
Purpose: A multiphase model for experiences of family members of persons with mental illness that considers both positive and negative aspects is proposed. Design and Methods: Mixed methods (semistructured interviews, life history timelines, focus group discussions, and the Experience of Caregiving Inventory) were used with caregivers accessing outpatient services of a nongovernmental organization in urban and rural locations around Chennai, India. Findings: Based on our results, we constructed a multiphase model, which we named The Banyan model of caregiver experiences. The phases are (1) manifestation of symptoms, (2) seeking help, (3) helplessness and attribution, (4) relative control and insight, (5) loss and worries, and (6) finding new meaning. Practical Implications: Our multiphase model allows us to identify in more detail the needs of caregivers at various stages.
Objective: To determine the frequency of high burden of care on family members of patients with Schizophrenia. Study Design: Descriptive, Cross-sectional study. Place and Duration: Department of Psychiatry, Civil Hospital Karachi for Six months from 15th September, 2014 till 15th March, 2015. Methodology: Caregivers fulfilling the selection criteria were enrolled. "Zarit Burden Interview" (ZBI) was used for assessment of high burden over caregivers of schizophrenic patients. Different demographic factors like gender, age, education and employment status were also assessed. Results: Out of 150 caregivers, majority 83.3% were married followed by 9% being single and 9% being widow. In this study 58% caregivers had high burden as measured on ZBI. Out of those having high burden 52.8% were males while 47.2% were females. While gender distribution in caregivers having no burden 65% was males and 35% were females. Conclusion: This study reveals a high burden among caregivers living with patients of Schizophrenia.
Background: Family caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. The burdens on and needs of caregivers of these patients should be emphasized. This study aimed to explore the perspective of family caregivers of people experiencing schizophrenia in the communities of Beijing in terms of the burdens of care and the acquisition and further need for support in order to provide guidance to health care providers regarding how to target therapeutic interventions for families of individuals experiencing schizophrenia and to provide recommendations for policy makers to tailor countermeasures and services.; Methods: A total of 20 family caregivers of schizophrenia patients were enrolled in our study. A face-to-face and semi-structured in-depth qualitative interview study was conducted to explore the caregivers' perspective on the burden on caregivers, support and further needs. This study was conducted in the community health service centres where the family caregivers regularly visit. The study was carried out according to good ethical practices, data analysis and reporting guidelines.; Results: Most participants reported that they were suffering from heavy life burdens and had negative experiences with respect to obtaining social support, and they emphasized that they would require more support. Economic and daily housework burdens, limited social communication, and psychological stresses were the principal burdens. Support including financial, medical and information and educational support did not satisfy the needs of the caregivers and their patients. More financial support, respect, and rehabilitation institutions were reported to be needs of the caregivers.; Conclusions: Family caregivers of people experiencing schizophrenia suffer from heavy physical and psychological burdens; however, the current support provided is insufficient. More services and better public attitudes should be considered for people experiencing schizophrenia and their caregivers.
People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.
Review Question: What are the spiritual aspects of family caregivers' experiences when caring for a community-dwelling adult with severe mental illness?;
Aims: When experiencing mental health difficulties, university students turn to their friends for support. This study assessed the consequences of caregiving among a university sample, identifying predictors of caregiving burden among students. Methods: A total of 79 students with experience of supporting a friend with mental health difficulties were recruited through a UK student mental health charity to complete an online survey. Alongside qualitative data, the online survey used the Experience of Caregiving Inventory and the Involvement Evaluation Questionnaire as measures of the consequences of caregiving. Results: Students supporting friends, housemates or partners were found to experience significant consequences of caregiving. Frequency of face‐to‐face contact and duration of illness predicted more negative consequences of caregiving, but these relationships were not straightforward. The presence and intensity of professional support did not influence the experience of caregiving. Conclusions: The study suggests that the impact of supporting friends with mental health difficulties is not insubstantial for students. Broadening the network of informal social support may help improve the experience for students supporting a friend, but currently, contact with professional services appears to have a limited effect.
To a large extent caregivers perceive stigma through their social and community interactions by virtue of their association with persons with mental health problems. Meanwhile, evidence on their strategies for coping with potentially undesirable experiences linked with stigma is limited. Using a descriptive qualitative approach, the present study explored affiliate stigma among mental health professionals and family caregivers of persons with mental illness. Data, collected through one-on-one interviews with 10 mental health professionals and 10 family caregivers, were examined with content analysis. Findings revealed that, although stigma attached to mental illness was largely directed at sufferers and family caregivers, professionals sometimes had their fair share. To manage the negative impact of stigma, caregivers adopted various strategies including the use of realisation, tactical or planned ignoring, self-motivation, acceptance and religion. Implications of the findings necessitate the intensification of mental health education among the general populace, which must be targeted at demystifying mental illness.
Background: Caregivers play a crucial role in the clinical evolution of patients with schizophrenia. In order to optimize their support, it is necessary to adjust it according to the phase and severity of the patient's illness. However, little interest has been given in the experience of family caregivers as a function on disease progression. Objectives: The objective of this study was to explore the experiences of family caregivers of patients with schizophrenia at different stages of the disease. Materials and methods: Twelve family caregivers of schizophrenia patients at different stages of the disease e.g. First Psychotic Episode (n = 4), Relapse (n = 4), and Remission (n = 4) participated in the study. Each caregiver was interviewed for about an hour by a psychologist (the same for all) using an interview guide. This interview guide included key themes highlighted in the literature: family burden, stigma, potential gains in caregiving, and ways to cope with the disease. After retranscription, the research interviews were analyzed with the Alceste method in order to help reading and systematizing the data. Results: The qualitative analysis allowed to emerge representations, emotions and practices characteristic of each group. Thus, the interviews with the caregivers of the group First Psychotic Episode were marked by the confrontation with the psychiatric institution. This world was frightening for them: firstly because it was foreign, but also because the representations they associated with schizophrenia were often marked by stigmatization. Hence the shock of the diagnostic announcement, the pain related to the awareness of the disorder of their close relative and the worry about a future that has just darkened. In the Relapse group, caregivers expressed despair and disappointment about the new hospitalization of their relative. Some also expressed anger, often directed against the mental health care system, especially when the subjects didn't feel heard in their request. Finally, the speech of the caregivers of the Remission group showed a reconstruction process: the family go back to its daily life, not “despite” but “with” the patient's disease and its consequences. A new balance had been established, including better relations with their close relative with schizophrenia. The caregivers’ speech in the latter group also included some key components of the recovery process, such as accepting the mental illness, seeing it positively, perceiving gains related to illness and caregiving, and hope for the future. The clinical implications of these results are discussed. In particular, ideas for improving the caregivers’ support in psychiatric emergency units are proposed. Conclusions: The data collected in this study provide valuable insights into the experiences of those who “live with” a close relative with schizophrenia. Moreover, these data indicate that families would also experience a subjective recovery process comparable to that described in the literature on schizophrenia. In addition to its exploratory aspect, the results of this study suggest supportive strategies adapted to the concerns of families at different stages of the evolution of the patient's illness.
Background: Many people diagnosed with schizophrenia, bipolar or other psychoses in England receive the majority of their healthcare from primary care. Primary care practitioners may not be well equipped to meet their needs and there is often poor communication with secondary care. Collaborative care is a promising alternative model but has not been trialled specifically with this service user group in England. Collaborative care for other mental health conditions has not been widely implemented despite evidence of its effectiveness. We carried out a formative evaluation of the PARTNERS model of collaborative care, with the aim of establishing barriers and facilitators to delivery, identifying implementation support requirements and testing the initial programme theory. Methods: The PARTNERS intervention was delivered on a small scale in three sites. Qualitative data was collected from primary and secondary care practitioners, service users and family carers, using semi-structured interviews, session recordings and tape-assisted recall. Deductive and inductive thematic analysis was carried out; themes were compared to the programme theory and used to inform an implementation support strategy. Results: Key components of the intervention that were not consistently delivered as intended were: interaction with primary care teams, the use of coaching, and supervision. Barriers and facilitators identified were related to service commitment, care partner skills, supervisor understanding and service user motivation. An implementation support strategy was developed, with researcher facilitation of communication and supervision and additional training for practitioners. Some components of the intervention were not experienced as intended; this appeared to reflect difficulties with operationalising the intervention. Analysis of data relating to the intended outcomes of the intervention indicated that the mechanisms proposed in the programme theory had operated as expected. Conclusions: Additional implementation support is likely to be required for the PARTNERS model to be delivered; the effectiveness of such support may be affected by practitioner and service user readiness to change. There is also a need to test the programme theory more fully. These issues will be addressed in the process evaluation of our full trial. Trial registration: ISRCTN95702682, 26 October 2017.
Background: Caring for a person with borderline personality disorder remains largely stigmatised and misunderstood. When a crisis arises, carers often seek help with the person they care for in emergency care settings such as the emergency department. The aim of this review was to explore, locate and compile the literature regarding the perspectives of family carers for a person with borderline personality disorder in an emergency care setting with a focus on nursing practices. This review advances understandings of carer perspectives in emergency care settings. Methods: The Joanna Briggs Institute (2015) , methodology for scoping reviews guided this review. A search of Emcare, Medline and Ovid Nursing was performed during April 2018, to identify literature where carer views and perspectives on engaging with emergency care services were reported. A grey literature search was also conducted. A total of ten articles and reports were included in this review. Consultation with a carer support group precipitated this review, which assisted in the formulation of the research questions. Results: Papers found via the study focused on health professional responses, rather than on nursing practice. Findings indicate that carers often perceive emergency departments as the only option for emergency care in a crisis. Carers require information about how to effectively manage a crisis with their loved one more effectively. Conclusion: This scoping review identified that carers are often not consulted or engaged with by health professionals. Carers often perceive that nurses and health professionals have a lack understanding about the consumer's conceptualisation of distress and the nature of BPD, which becomes a barrier to effective crisis support and management. The literature often reported that a trusting and collaborative relationship between carers, nurses and health professionals demonstrated improved outcomes for the carer and consumer.
Borderline Personality Disorder (BPD) is a common mental illness impacting around 1 to 4% of the Australian population (National Health and Medical Research Council (NHMRC) 2012). Perspectives of family carers for people diagnosed with borderline personality disorder: A scoping review on the emergency care responses of nurses and other health professionals, Australasian Emergency Care. Managing people with mental health presentations in emergency departments: A service exploration of the issues surrounding responsiveness from a mental health care consumer and carer perspective,
With the recent movement toward a personal-recovery paradigm to treat schizophrenia, the locus of mental health care delivery has shifted toward community-based care. Family caregivers comprise a substantial component of that community, and are often providing care for longer periods, but often have no formal training or support. Caregiver-directed psychosocial interventions (CDPI) have been developed to train and assist caregivers in their efforts to maximize the odds of treatment success for those in their care. This meta-analysis compared CDPI versus treatment as usual (TAU) on outcomes such as hospitalization, relapse, non-compliance, and “other outcomes” (emergency services utilization, suicide attempt, and death). A systematic literature search (2005–2015) was conducted to identify randomized controlled trials of outpatient administered CDPI versus TAU to treat adult patients recovering from schizophrenia. Relative risks (RR) with 95% confidence intervals derived via random effects meta-analysis were calculated to compare CDPI versus TAU on the aforementioned outcomes. Eighteen of the 693 citations were retained for analysis. Overall RR for CDPI versus TAU suggested improved outcomes associated with CDPI: hospitalization [0.62 (0.46, 0.84) p < 0.00001], relapse [0.58 (0.47, 0.73) p < 0.00001] and other outcomes [0.70 (0.19, 2.57) p = 0.59]. CDPI was associated with significantly better compliance with medication and clinical activities combined [0.38 (0.19, 0.74) p = 0.005]. Medication compliance alone favored CDPI but was non-significant. Compliance with clinical activities alone favored CDPI significantly [0.22 (0.11, 0.47) p < 0.00001]. CDPI is associated with reductions in hospitalization, relapse, and treatment non-compliance.
Objective: Although various short forms of Zarit Burden Interview (ZBI) have been developed, there is a lack of standard psychometric testing and comparison among them. The study aims to examine the psychometric properties of ten short versions of the most frequently used ZBI among a sample of schizophrenia caregivers and to find the one with the best performance. Methods: Cross-sectional door-to-door survey of ZBI-22 and a series of validated instrument data from 327 family caregivers of schizophrenia patients in a Chinese rural community were conducted from October 2015 to January 2016. Reliability was assessed using McDonald's omega coefficient (ω). Validity including concurrent validity, known group's validity, and criterion validity were assessed by Spearman correlations and Mann-Whitney U tests. Overall discrimination ability was evaluated using the area under the receiver operating characteristic curve (AUC). Results: Reliability was generally good for all short forms (ω = 0.69-0.84), except for the Gort ZBI-4 (ω = 0.58), which is acceptable considering its small item numbers. Concurrent validity was good across all various ZBI forms with significant negative correlations with patient's function (r = -0.34 to -0.48, p < 0.01), as well as significant positive correlations with caregiver's depression (r = 0.49-0.65, p < 0.01), and anxiety symptoms (r = 0.45-0.58, p < 0.01). Known groups' validity (carers with disease vs. without disease; carers being parents vs. spouse vs. others) showed inconsistent results among various short forms. Criterion validity was generally good for all short forms with significant positive correlations with Family Burden Interview Schedule (r = 0.67-0.75, p < 0.01), except for the Higginson ZBI-1(r = 0.57, p < 0.01). Discriminative ability was also good for all short forms (AUC range: 0.85-0.99), with various cutpoints proposed. Among all ten short forms, the Ballesteros ZBI-12 and the Gort ZBI-7 outperformed others with almost equally good performance in comprehensive psychometric testing. Conclusions: This study provides support for the reliability, validity, and discriminative ability of the ten various short forms of ZBI for use among schizophrenia family caregivers, with the Ballesteros ZBI-12 and the Gort ZBI-7 endorsed as the best ones.
Background: The degree of informal caregiver involvement influences the self-management of individuals living with bipolar disorder (BD).; Objective: This article aims to provide a description of informal caregivers' learning experiences in self-management support of BD in order to guide professionals in tailoring future psychosocial and psychoeducational interventions.; Design: In-depth open interviews with 10 informal caregivers of patients with BD who followed treatment in the context of specialized outpatient bipolar care were conducted.; Results: Four learning phases emerged from the phenomenological analysis describing the informal caregivers learning process: (1) understanding BD, (2) overcoming the dilemmas in self-management support for individuals living with BD, (3) dividing tasks and responsibilities, and (4) acquiring a personal definition of self-management support for individuals living with BD.; Conclusion: By grasping the concept of BD, informal caregivers gradually learn how to overcome dilemmas resulting from living with someone with BD, and how to control the expression of emotions. They learn to reflect on the nature of conflicts and how to share the responsibilities of illness management with individuals living with BD and professionals. Mastering these skills eventually allows them to define and delimit their supporting informal caregiver role in the self-management of BD.; Practice Implications: Our findings provide information regarding the educational needs of informal caregivers to tailor counseling, and psychosocial and psychoeducational interventions in specialized outpatient care for individuals living with BD.
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.
Involving and supporting the family members and caregivers of people with mental illness is essential to high-quality mental health services. However, literature suggests that there is a lack of engagement between family members and mental health nurses (MHNs). Lack of knowledge among MHNs is often cited as one of the main reasons for this lack of engagement. The aim of this review was to explore the knowledge, skills and attitudes that are required by MHNs to enable to them to work more effectively with families affected by mental illness. A literature based critical review was used to access and review 35 papers in order to extract concepts that could inform the design of eLearning materials to assist MHNs advance their knowledge in this area. Two overarching themes were identified; 'Mental health problems and the family' and 'Working with the family'. From these themes, the knowledge, skills and attitudes required to work more effectively with families are described. The findings from this review provide a descriptive account of the knowledge skills and attitudes that are required for effective family work. In addition, the review provides an empirical foundation for education programmes in the area. Highlights • Mental health nurses often lack the knowledge and skills to support families. • Well-designed education programmes increase knowledge, reduce stress and burden. • Education programmes need to prepare mental health nurses more effectively with families.
Background: The variety of caregiver's needs of bipolar patients signifies the importance of performing dedicated interventions to help this group of caregivers based on the cultural conditions of the country in which they live; the present study therefore seeks to address this issue through a different method. Methods: The families of 28 patients with bipolar disorder type 1 who were treated for at least two months by a single psychiatrist gradually entered the study over a six-month period. They received the phone number of the psychiatrist in attendance as soon as the patient was in remission according to the same psychiatrist's interview. A total of 1908 texts were sent and received and each family sent an average of 68.14 text messages during the three years, with the minimum being 40 and the maximum 83. All the text messages were transcribed verbatim and were evaluated by three faculty members through the qualitative content analysis method. Results: In this study we found three themes and there were some codes in each theme. 1. The first theme was "Training" which the caregivers requested advice about symptoms and tests, the course of the disease, assurance, medication side-effects and their management, how to stop smoking, how to control high-risk behaviors and double checking appointments with the physician, making for a total of 1079 text messages received. 2. The second theme was "Reporting" which contained a description of emergency symptoms and requesting advice, reporting response or no response to the medications, reporting medication adherence and dosage taken. 3. The third theme: "The expression of feelings" including the expression of gratitude, saying congratulations on national and other celebrations and expressing anger and hatred. Conclusion: Overall, the caregivers of patients with bipolar disorder have many needs; meeting these needs affects the patients' outcome and the caregivers, but requires a greater attention by the healthcare team and it is necessary for these needs to be evaluated in the context of each distinct country.
Objective The aims of this study were to quantify Australian federal and state government expenditure on mental health carer services for 2014-15, map the types of services being provided and explore how funded service types compare with the evidence base for the outcomes of these carer services. Methods Web searches were conducted to identify in-scope mental health carer services in Australia funded by federal and state and territory governments. Funding estimates were confirmed where possible with available government and carer organisation contacts. A literature search was conducted for reviews of studies investigating mental health carer service outcomes. Results In 2014-15, the estimated Australian national, state and territory government expenditure on mental health carer services was approximately A$90.6 million. This comprised A$65.6 million in federal expenditure and A$25.0 million in state and territory expenditure. Most funding streams provided respite and psychoeducation. The literature showed positive carer outcomes for psychoeducation and intensive family interventions. Evidence was lacking for the effectiveness of respite services. Conclusions These findings suggest a mismatch between what is known about the extent to which different service types deliver positive carer outcomes and the current allocation of funds across Australia's mental health system. This study also highlights the fragmentation of the mental health carer services system, supporting the need to streamline access.
A modest association can be found between people with a schizophrenia spectrum diagnosis (psychosis) and perpetrating acts of violence. When a person with psychosis does engage in violence, it is their informal carers, when compared to those from the general population, who are more likely to be the targets, and violence will often occur within the family home. Despite the importance of carer support for improving patient outcomes, our understanding of how carers are impacted by patient initiated violence in psychosis remains limited. This paper reviews literature documenting the effects of patient-initiated violence in psychosis on carer functioning. The review comprised searches of Medline, PsychInfo, Embase, and Web of Science databases and the hand searches of reference lists from relevant published papers. The review was limited to English language publications from inception to 11th September 2017, and where carer experiences following reports of violence from patients with psychosis were specifically recorded. Data from 20 papers using mixed methodologies were reviewed. Patient violence in psychosis was linked to poorer carer outcomes, including carer reports of burden, trauma, fear, and helplessness. There is, however, a significant need for further studies to systematically quantify the impact and correlates of patient initiated violence on psychosis caregivers, and improve prevention.
Aims: At first-episode psychosis (FEP), many patients will be routed within familial networks and supported by informal carers who are predominately close family members such as parents. Carer burden, distress and poorer coping styles are associated with different illness beliefs. The current study sought to examine the impact and acceptability of a 3 session, cognitively informed, group intervention targeting illness beliefs previously linked to distress and poorer caregiving experiences in FEP carers.; Methods: Carers attending a routine FEP service were invited to attend the group intervention and completed a measure of illness beliefs at baseline and post intervention.; Results: Data on 68 carers with complete datasets are presented. Carers were predominately females (64.2%). Group attendance was linked to positive improvements in carer baseline beliefs about the negative consequences of the illness for the patient and themselves, attributions of blame about the illness to the patient and themselves and their overall understanding about the illness. Significant improvements in their understanding of the illness timeline and course, and confidence in dealing with difficulties were also identified.; Conclusions: A cognitively informed group approach to targeting the less adaptive illness beliefs reported by FEP carers may offer an effective and acceptable pathway to facilitate their understanding of the illness and adjustment. Further studies using controlled designs are required.
Background: Psychotic disorders are severe mental health conditions that adversely affect the quality of life and life expectancy. Schizophrenia, the most common and severe form of psychosis affects 21 million people globally. Informal caregivers (families) are known to play an important role in facilitating patient recovery outcomes, although their own health and well-being could be adversely affected by the illness. The application of novel digital interventions in mental health care for patient groups is rapidly expanding; interestingly, however, far less is known about their role with family caregivers.; Objective: This study aimed to systematically identify the application of digital interventions that focus on informal caregivers of people with psychosis and describe their outcomes.; Methods: We completed a search for relevant papers in four electronic databases (EMBASE, MEDLINE, PsycINFO, and Web of Science). The search also included the Cochrane database and manual search of reference lists of relevant papers. The search was undertaken in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guidelines.; Results: The search identified 9 studies derived from 8 unique datasets. Most studies were assessments of feasibility and were undertaken in the United States. Interventions were predominately Web-based, with a focus on improving the caregivers' knowledge and understanding about psychosis.; Conclusions: This study offers preliminary support for the feasibility and acceptability of digital interventions for psychosis in informal caregiver populations. However, the findings underpin a clear need for greater development in the range of caregiver-focused digital approaches on offer and robust evaluation of their outcomes. The use of digital approaches with caregiver populations seemingly lags someway behind the significant developments observed in patient groups.
Family members play an important role in caregiving with more emphasis on early intervention for people suffering from mental illness. Using both quantitative and qualitative methods, this study examines the effects of a community mental health intervention project (CoMHIP) on burdens of caregivers who have family members with suspected mental illness. Results showed that family caregivers’ burden and psychological stress level had been reduced (p < .001). The caregivers subjectively experienced a significant reduction in stress regarding the caregiving subscales, supervision, tension, worrying and urging after seeking CoMHIP service. Findings for the study have implications on social work interventions regarding family caregiving of people with suspected mental health problems.
During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.
Introduction: In the past, patients with mental disorders were often isolated, but these patients now-a-days enter the society, as therapeutic interventions have advanced. Family members play an important role in the life of many adults with mental disorders and are under considerable amounts of stress that may affect caregiver's physical health, quality of life and resilience. Aim: The present study aimed to determine the relationship between the resilience and quality of life in family caregivers of patients with mental disorders. Materials and Methods: The present cross-sectional, correlational, descriptive study was conducted on 238 family caregivers of patients with mental disorders. The Short Form Health Survey (SF-36) was used to measure the quality of life and the Connor and Davidson Resilience Scale was used to measure resilience in the participants. The SF-36 consists of two general dimensions and eight domains of health and the resilience scale consists of 25 items. The data obtained through the questionnaires were analysed in SPSS version 16.0 using Pearson's correlation test. Results: The majority of the family caregivers were the patients' mothers. The results showed a significant direct relationship between resilience and quality of life (p<0.001, r=0.40). Conclusion: Resilience is a personal resource that affects quality of life directly. Resilience can enhance quality of life. The design and implementation of programs to enhance resilience and improve quality of life in family caregivers in line with the emerging needs of this group are therefore necessary.
Background and Objective: Psycho-education is an intervention integrating psychotherapeutic and educational strategies. Whilst carer psycho-education is known to aid in psychiatric disorders, at present there is no known tool to assess the degree to which this is routinely provided by mental health professionals. Our objective was to develop and validate a tool, in English, which assesses psycho-education of carers of psychiatric patients in Pakistan. Methods: A questionnaire was generated in English. It was pretested on twenty male and female carers and was refined to attain a more reliable version. Sixty bilingual male and female primary carers, who were fluent in English, and had been in a care-giving role for more than three months were requested to complete the developed Questionnaire for the Assessment of Psycho-Education of Carers (APEC) at Fatima Memorial Hospital Psychiatry Out-patient department within a period of four months from December, 2017 to April, 2018. Carers were identified via patients presenting to a psychiatric OPD. Responses were analyzed for reliability and test retest consistency using Cronbach's alpha analysis, Intraclass correlation coefficients, factor analysis and Paired t-test. Results: APEC was found to be easily understandable and capable of adequately assessing aspects of psycho-education. A high degree of internal consistency was demonstrated on cronbach's alpha analysis. Cronbach's α coefficient for various domains was sufficiently high ranging from 0.76 to 0.960. Similarly, domains of (APEC) were highly correlated. Test-retest reliability was assessed by computing the correlation between Visits 1 and 2 scores. Conclusion: The developed questionnaire can adequately assess psycho-education of primary carers in mental health settings.
In many parts of the world family members are the primary caretakers of persons with mental illness. The chronic stress associated with being a caregiver for an individual with schizophrenia can result in a variety of emotional responses, influenced by religion, spirituality and different styles of coping. The aim of this study was to assess patterns of coping, and spiritual and religious beliefs among caregivers of patients with schizophrenia. Consecutive patients with schizophrenia and their caregivers attending an outpatient clinic were recruited. Patients were rated on the Positive and Negative Symptom Scale. The Royal Free Interview for Religious and Spiritual Beliefs, Modified Jalowiec Coping Scale and General Health Questionnaire-12 were administered to caregivers. Socio-demographic details of carers and clinical details of patients were recorded. Caregivers of patients with schizophrenia were found to cope in a variety of ways; the most useful and frequently used was the optimistic style of coping. While religious beliefs had an influence, factors significantly associated with coping included caregiver education and employment and patient psychopathology. Providing support to carers of patients with schizophrenia and enhancing their coping is an essential part of quality clinical care. Spirituality and religion can serve as a positive coping strategy.
Objectives: To compare depression and psychological well-being between caregivers of schizophrenic patients and non-caregivers and to study the burden of caregiving as a relative risk for depression and psychological well-being.; Methods: This cross sectional comparative study was conducted at International Islamic university Islamabad from January to September 2017. Fifty informal caregivers of schizophrenic patients from 19 to 55 years of age were included in the study. The control group consisted of age and socio-economic status matched healthy volunteers who did not have any psychological or medical patient at home needing care and assistance. For measurement of study variables i.e., burden of caregiving, depression and psychological well-being, instruments used were Zarit Burden Interview (ZBI), The Beck Depression Inventory (BDI) and Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) respectively.; Results: Results were analyzed using MANOVA followed by One-Way ANOVA. Findings indicated that informal caregivers of schizophrenia have greater depression and poor psychological well-being in comparison to the non-caregiver controls. Association of caregiving burden with psychological well-being and depression was calculated using Chi Square test and relative risk.; Conclusion: Caregiving adversely affects informal caregivers' mental health and wellbeing. Informal caregiving is a burden for the caregivers; health status of family members involved in caregiving should be routinely assessed to enhance their health-related quality of life.
Objective: To evaluate the satisfaction of family caregivers with a mental health inpatient service in Brazil.; Methods: This was a cross-sectional study with a quantitative approach. A sample of 80 caretaking family members answered the abbreviated version of the Brazilian Mental Health Services' Family Satisfaction scale (SATIS-BR) and a sociodemographic questionnaire. Categorical variables were expressed as frequencies and percentages and quantitative variables as means and standard deviations. Interactions among variables and indexes of the scale were analyzed using the Student's t test, Pearson correlation coefficient and analysis of variance.; Results: The results showed a high mean overall satisfaction score when considering the categorization of the items of the scale, with higher satisfaction indexes in the 'Treatment results' subscale and lower ones in the 'Reception and competence of staff' and 'Privacy and confidentiality' subscales. In the comparison of the samples studied, greater scores were observed in general satisfaction and in factors in the medical residency care model than in the attending psychiatrist model. There were no significant differences in terms of family member satisfaction in relation to sociodemographic variables.; Conclusion: Family member satisfaction was high. The need for improvement in aspects related to the infrastructure of services was evident. This paper underlines the importance of continuous and regular evaluations of the services provided, focusing on the satisfaction of users and family members in order to better understand the factors that contribute towards the quality of care provided.
While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.
Objective: Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers.; Methodology: A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively.; Results: The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving.; Conclusion: The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving.;
Responsive support systems, designed and promoted by policy makers, are critical in supporting family caregivers. The purpose of this study was to explore viewpoints of service providers in supporting family caregivers of mental health patients in Iran. In this qualitative study, a purposive sample of 29 service providers and policy makers consented to participate in semi-structured interviews. Data were analyzed through qualitative content analysis and three main categories and seven sub-categories were identified. The main categories were: interpersonal collaboration, intra-organization collaboration and inter-sectorial collaboration. A common theme in this study was that service providers play a key role in coordinating responsive support services for Iranian family caregivers of mental health patients across all levels. The increasing complexity of the health care system and resource limitations have created complex problems, which require the use of participatory approaches by the various specialties, disciplines and departments to provide complementary services and mutual support. This approach is the best way of ensuring that service users receive the most relevant services from the right service providers in the right place as and when needed.
This paper explored the support needs of family caregivers of people living with a mental illness in Iran. This descriptive study focused on the experiences of 20 family caregivers as well as the views of 29 professional support workers through individual face-to-face interviews. From these interviews three key themes emerged in regards to the care needs of family caregivers: (i) social support; (ii) emotional support; and (iii) safety and security. These themes highlighted the complex role of caring for a family member with a mental illness and the emotional, social and economic challenges that these caregivers experienced as a result. Iranian caregivers garnered support not only from other family members but also from neighbors and religious leaders but lacked the much needed respite care found in western countries. This research study highlighted the importance of ensuring that the caregivers themselves receive appropriate and adequate support to fulfill their caregiving role.
Background: Family caregivers of patients with mental disorders play the most important role in the care of psychiatric patients (PPs) and preventing their readmission. These caregivers face different challenges in different cultures. We conducted this study to determine the challenges of caregivers of patients with mental disorders in Iran. Materials and Methods: This study is a narrative review with a matrix approach conducted by searching electronic databases, SID, IRANMEDEX, MAGIRAN, PUBMED, SCOPUS, Web of Sciences, from February 2000 to 2017. Searched keywords include challenges, family caregivers of psychiatric patient, family caregivers and psychiatric patient, mental illness, families of psychiatric patient, and Iran. One thousand two hundred articles were found in English and Farsi, and considering inclusion and exclusion criteria, 39 articles were examined. Results: The results of the studies show that not meeting the needs of caregivers, burnout and high burden of care, high social stigma, low social support for caregivers, and low quality of life of caregivers were among the most important challenges faced by caregivers. Conclusions: Despite the efforts of authorities in Iran, family caregivers of patients with mental disorders still face challenges. Therefore, the need for all-inclusive support for family caregivers of patients with mental health problems is necessary.
Background: The consequences and high costs of psychiatric disorders impact family caregivers greatly. Health services should identify and provide accessible support programs to facilitate effective caregiver coping.; Purpose: The aim of this study was to determine the effectiveness of a theory-of-planned-behavior-based problem-solving training program on the coping styles of family caregivers of psychiatric inpatients.; Methods: In this two-group, randomized control trial, 72 family caregivers were randomly assigned to either a control group receiving standard care or an intervention group receiving a training program (eight sessions over 4 weeks). Demographic information was recorded at baseline, and the Coping Inventory for Stressful Situations was administered to both groups at baseline, immediately postintervention, and 1-month follow-up.; Results: Immediately after the intervention, the intervention group earned significantly higher task-oriented coping style scores (mean difference = 5.03, p = .015) than the control group, but no significant difference was detected between the two groups for either emotion- or avoidance-oriented coping style scores. At 1-month follow-up, the intervention group earned significantly higher scores than the control group for task-oriented (mean difference = 8.56, p < .001) and emotion-oriented (mean difference = 7.14, p = .002) coping styles. No improvement in avoidance-oriented coping style at the postintervention or follow-up time points was detected.; Conclusions: Implementation by nurses and other health professionals of problem-solving training programs that are based on the theory of planned behavior is recommended to strengthen the use of task- and emotion-oriented approaches that help family caregivers of psychiatric patients better cope with stress.
As a worldwide phenomenon, no one is immune - mental illnesses affect people of all ages, cultures, educational and income levels. Burden of caregivers of people with bipolar illness reported moderate or great distress in at least in one burden domain. Hence the descriptive co-relational study has been conducted to assess the burden, social support and family wellbeing among caregivers of mentally ill patients in Mansik Aarogayashala , Gwalior (M.P.). Aim of the study was to determine the caregivers' burden as measured by caregivers burden, social support, family well being and find the relationship between care giver burden and social support, care giver burden and family well being and social support and family well being. By using purposive sampling technique collects total 50 samples. The data was collected using demographic proforma, caregivers' burden assessment scale, social support scale and family wellbeing scale by applying the questioning technique. Results revealed that, Maximum number of caregivers had moderate burden (60%), low social support (82%) and perceived high level of wellbeing (48%); 36% had mild burden, 16% had moderate social support and 46% perceived moderate level of wellbeing. Caregiver burden had negative correlation with social support(r=-0.344, P < 0.005) and family wellbeing (r= -0.404, P < 0.005) while there was positive correlation between social support and family wellbeing(r=0.447, P < 0.005). Study concluded that Caregiver burden had a significant negative relationship as social support and family wellbeing decreased, caregiver burden increased. But there was a positive relationship between social support and family wellbeing, family wellbeing increased with increased social support.
Purpose of the Study: Ambivalence has been described as simultaneous positive and negative emotional experiences. Although ambivalent feelings are often reported by dementia family caregivers, the effect of these feelings on caregivers' mental health has not been studied. Furthermore, the measurement of ambivalence specific to caregiving situations has not been studied. The aims of this study are to analyze the psychometric properties of the Caregiving Ambivalence Scale (CAS) and, drawing upon the stress and coping model, to test whether ambivalent feelings significantly contribute to caregivers' distress. Design and Methods: Participants were 401 dementia family caregivers. Face-to-face interviews were conducted which included measures of ambivalence, depressive (CES-D) and anxious symptomatology (POMS), stressors (disruptive behaviors subscale of the RMBPC), and sociodemographic information. Results: Results from exploratory, parallel, and confirmatory factor analyses suggest that the CAS has a unidimensional structure, explaining a 64.26% of the variance of ambivalent feelings. Good reliability and validity indexes were found, including a Cronbach's alpha of .86. The results revealed significant (p < .01) positive associations with depressive and anxious symptomatology, and frequency and reaction to disruptive behaviors. Ambivalent feeling scores significantly contributed to the explanation of caregivers' depressive and anxious symptoms after controlling for sociodemographic and stressor variables. Implications: The CAS shows good psychometric properties that recommend its use as a measure of ambivalent feelings in caregivers and appears to be a relevant variable for understanding caregivers' mental health.
Background There is limited evidence for the acceptability of training for mental health professionals on service user- and carer-involved care planning. Aim To investigate the acceptability of a co-delivered, two-day training intervention on service user- and carer-involved care planning. Methods Community mental health professionals were invited to complete the Training Acceptability Rating Scale post-training. Responses to the quantitative items were summarized using descriptive statistics (Miles, ), and qualitative responses were coded using content analysis (Weber, ). Results Of 350 trainees, 310 completed the questionnaire. The trainees rated the training favourably (median overall TARS scores = 56/63; median 'acceptability' score = 34/36; median 'perceived impact' score = 22/27). There were six qualitative themes: the value of the co-production model; time to reflect on practice; delivery preferences; comprehensiveness of content; need to consider organizational context; and emotional response. Discussion The training was found to be acceptable and comprehensive with participants valuing the co-production model. Individual differences were apparent in terms of delivery preferences and emotional reactions. There may be a need to further address the organizational context of care planning in future training. Implications for practice Mental health nurses should use co-production models of continuing professional development training that involve service users and carers as co-facilitators.
PURPOSE To examine prediction power of personality traits, expressed emotion, and coping strategies on caregivers' burden. DESIGNS AND METHODS Cross-sectional descriptive correlational design was used to collect data from 196 caregivers using the Self-Administered Questionnaire from Jordanian caregivers of patients with serious mental illness. FINDINGS Jordanian caregivers had a moderate-to-severe burden level (M = 47.1, SD = 11.5). Burden had a significant negative relationship with coping (r = -.15, p = .04) and significant positive relationship with personality dysfunction (r = .16, p = .021). Emotional expression, coping, and personality were found to be significant predictors of burden (F = 5.16, p = .002). PRACTICE IMPLICATIONS Mental health professionals need to address family caregivers in their plans of care.
Carers' views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants. Mainly qualitative data was collected together with supplementary quantitative socio-demographic data from the participants. Selected findings based on the carers' discussions are presented which focus on how the relationship between carers and professionals can most effectively facilitate service user recovery. Issues of information exchange between carers and professionals and the impact of patient confidentiality are highlighted, the nature of recovery practice is considered, and the participants' need to be regarded as 'experts' is addressed. A conceptual model of service design based on a recovery-oriented 'triangle of care' is presented. The potential implementation of this model in the current UK mental health service context is considered with the need for co-production between all stakeholders to ensure its development.
Hospitalisation of a parent with acute mental health problems impacts the consumer, their extended family/carers and children. Mental health nurses are at the forefront of promoting recovery for consumers in an acute inpatient setting. Recovery-oriented care can include provision of family-focused care which supports recovery of the parent-consumer and their family members and contributes to prevention of intergenerational mental illness. The aim of this narrative literature review was to explore existing knowledge regarding the experiences, care and support needs of parent-consumers, their family members/carers and children during the parent's acute mental health hospitalisation. It also aims to explore existing knowledge about the practices of mental health nurses providing care to this consumer group, to inform future healthcare practice and strengthen parent, child and family outcomes. Nineteen published studies addressed the review questions. In the context of hospitalisation, the majority of research regarding parenting with a mental illness is focused on mothers. Parents reported experiencing stigma during their hospitalisation. Separation from children was a concern for parents and their extended family, but admission provided an opportunity for the parent to receive treatment and for the family to receive support. Mental health nurses did not always identify parental status on admission. When parental status was identified, nurses reported issues regarding logistics and practicalities of using family rooms, children visiting the unit, and their own professional knowledge and organisational support regarding familyfocused care. Implications for practice are identified, highlighting how mental health nurses can develop their practice to support the recovery of parent-consumers.
Introduction Mental health service policy stipulates that family carers be involved in care planning. Aim To identify families’ experiences of care planning involvement in adult mental health services. Method An integrative review where electronic databases and grey literature were searched for papers published between 01 January 2005 and 10 February 2016. Results Fifteen papers met the inclusion criteria. Thematic analysis generated three themes: (1) families’ experience of collaboration, (2) families’ perceptions of professionals and (3) families’ impressions of the care planning process. Collaborative decision-making is not regularly experienced by families with an ‘us’ and ‘them’ divide, perpetuated by a lack of communication, confidentiality constraints and a claim of ‘insider knowledge’ of service users. When involved, families perceive care planning to be uncoordinated and that their lived experiences are not always appreciated. Discussion Families need to be valued, empowered and engaged in care planning and the partnership distance be addressed. Accommodating the views of family, service user and professionals is preferable but not always possible. Our findings suggest that the key element for professionals is to value all ‘insider knowledge’ where possible. Implications for Practice Services should develop written information on confidentiality for families and facilitate open communication concerning their involvement in care planning.
Experience-based co-design (EBCD) is a service design strategy that facilitates collaborative work between professional staff and service users toward common goals. There is a lack of published examples of it in relation to family carer engagement within a mental health context, and little research exploring the mechanisms behind successful implementation. The aim of this study was to explore the processes that facilitated EBCD with carer involvement. The study adopted a grounded theory–informed approach involving interviews with 16 participants of an existing EBCD project in an English National Health Service (NHS) trust, reflecting multiple stakeholders. EBCD can be thrown off track in two ways: conflict and getting “bogged down.” Leadership by project and design-group leaders could return group cohesion and maintain project momentum. The developed model reflects key processes. Future research should examine EBCD projects with similar ranges of stakeholders and in contexts with different levels of organizational change.
BACKGROUND: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions. METHODS: UK service users, carers and health professionals (n=185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories. RESULTS: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience. CONCLUSIONS: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed.
More than 1 million people who are caring for children and older relatives are at a significantly higher risk of mental health problems and more likely to be struggling for money than the general population, official data has revealed.
The “sandwich generation” who find themselves squeezed between older and younger dependents account for 1.3 million people, according to the Office for National Statistics (ONS). It found the more care people give to both older and younger relatives simultaneously, the more likely they are to report symptoms of mental ill health.
Background: Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. Carers often provide intensive support to mental health consumers and gain detailed insight into their lives. As such, carers could make valuable contributions to well-informed decisions about mental health consumers' use of antipsychotic medication. Objectives: The aim of this study was to explore carers' participation in antipsychotic medication decision making. Methods: Snowball sampling was used to enrol 29 carers in this study. Of these carers, 19 participated in semi-structured interviews, and ten participated in a focus group. Data were analysed thematically. Results: Four main themes emerged from the analysis. The findings highlighted that carers typically received little or no information about antipsychotic medication. Carers commonly addressed the shortfall in information by obtaining additional information through online sources or distributing among carer networks material that they had developed themselves. Almost all carers emphasised that they should be involved in decisions about antipsychotic medication, but noted that they were typically excluded. The lack of involvement in medication decisions was a source of frustration, as carers could contribute saliently through sharing detailed knowledge about mental health consumers' lives, address communication gaps that resulted from disjointed care and improve communication between health professionals and mental health consumers. Conclusion: Health professionals could consider improving the extent to which they collaborate with carers in medication decisions.
Academic researchers are increasingly asked to engage with the wider world, both in terms of creating impact from their work, and in telling the world what goes on in university research departments. An aspect of this engagement involves working with patients, carers or members of the public as partners in research. This means working with them to identify important research questions and designing studies to address those questions. This commentary was jointly written by two researchers and people with relevant caring experience for this special issue. It brings to the forefront the concerns of carers who are also involved in research as partners. The aim is to highlight their perspectives to inform future research, policy, and practice.
As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. Method: a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, a second targeted search was conducted of the general care‐giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care‐giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care‐giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care‐giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes.
Objectives: Little is known regarding the effect that caring for an individual with Mild Cognitive Impairment (MCI) has on health-related quality of life (HRQOL). The authors sought to identify the most important aspects of HRQOL related to caring for an individual with MCI. Methods: Six focus groups were conducted with caregivers of individuals with MCI (n = 32). Qualitative frequency analysis was used to analyze the data. Results: Findings indicated that caregivers most frequently discussed social health, including changes in social roles and an increased need for social support (51.2% of the total discussion). This was followed by mental health concerns (37.9%) which centred on anger/frustration, and a need for patience in the caregiving role, as well as caregiver-specific anxiety. Other topics included physical health (10.0%; including the impact that stress and burden have on medical heath), and caregivers’ cognitive health (0.9%; including memory problems in relation to caregiver strain, sleep disruption, and cognitive fatigue). Conclusions: Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the ‘less severe’ nature of an MCI diagnosis.
Background: An informal care-giver is generally an unpaid individual who looks after the personal and medical needs of the patient. India being a country of traditions and family values, this informal care-giver is usually a family member. These care-givers, being untrained in this job undergo tremendous stress. Available research studies the burden individually in the relatives of chronically medically ill patients and those of psychiatrically ill patients. Furthermore the previous research targets the burden in individual diseases. This study stands out as it makes a comparison between the two broad groups, taking into account almost all possible chronic diseases in each group. Methods: This is a cross-sectional analytical descriptive study that was conducted on the family caregivers of chronically medically ill and psychiatrically ill patients, using the Caregiver's Burden Scale. Data were analyzed by SPSS 20 statistical software and Pearson correlation coefficient tests. Significant difference between area of caregiver burden of medicine and psychiatric patients was tested using relative deviate 'Z' of SEDM test at 5% level of significance. Result: There is a significant difference between each category of Caregiver's Burden Scale among chronically medically ill and psychiatrically ill patients. (P < 0.05). Conclusion: The outcome of this study may help the health care providers in designing stress relief programs for primary care-givers. Overall this study may help better delivery systems of care for both the chronically medically ill as well as psychiatrically ill patients, by proper specific framing and psycho education programs for the caregivers of specific chronic illnesses.
Cigarette smoking poses significant health burdens for people with mental illness. They die sooner than they should, and smoking is a major contributor to their high rates of morbid chronic physical health conditions and early mortality, compared to the general population. Family carers provide important support to people with mental illness. However, family carers' perspectives of smoking by their family members with mental illness are largely absent from the research literature and from practice, despite smoking rates remaining high and quit rates remaining low for this population. Little is known about how family carers are or could be involved in supporting people with mental illness who smoke to stop smoking. This paper aims to provide a discussion of the opportunities for family carers to support their family member's smoking cessation and a discussion of our preliminary research on this topic. From the available literature, it appears that family carers are well placed to support smoking cessation for this population; however, they struggled physically, philosophically, and emotionally with perceived responsibilities involving their family member's smoking and the caring role. They felt isolated and asserted that there was limited support from service providers to assist them. The authors concluded that family carers are important agents within the person's immediate environment who could help them to improve their smoking cessation success. This suggests also that mental health services and other health service providers could benefit from including family carers in their efforts to support smoking cessation for people with mental illness who smoke.
Aims and Objectives To elicit the perspectives of carers of people with mental illness regarding access to, and experience with, physical healthcare services for mental health consumers. Background People diagnosed with mental illness have increased risks of physical illness and earlier death, problems able to be addressed through better physical health services. Carers of people with mental illness play a significant role in the mental healthcare system yet research examining their views is lacking. Design Qualitative exploratory. Methods In-depth interviews were conducted with 13 mental health carers. They were asked to describe their views and experiences pertaining to the physical health and availability of physical health care for the people they care for. Data were analysed using the framework of Braun and Clarke. Results Analysis of carer responses identified two important themes: responsiveness and access, and a shortage of care coordination. Carers felt alienated from physical healthcare providers and were compelled to fill gaps in available care through persistence in ensuring access to physical healthcare services. Conclusions The findings identify carers as key stakeholders in the physical health care for the people they care for. Their involvement in accessing and coordinating care provides vital perspective on health service capacity, which requires further consideration in the practice and research domains. Relevance to clinical practice Carers of people diagnosed with mental illness are crucial to the effective delivery of mental health services. Their perspectives must be central to their research agenda and contribute to the development of initiatives to improve clinical practice and promote improved physical health care.
Background: Preventing hospitalization and improving event-free survival are primary goals of heart failure (HF) treatment according to current European Society of Cardiology guidelines; however, substantial uncertainty remains in our ability to predict risk and improve outcomes. Although caregivers often assist patients to manage their HF, little is known about their influence on clinical outcomes. Aims: To quantify the influence of patient and caregiver characteristics on patient clinical event risk in HF. Methods: This was a secondary analysis of data using a sample of Italian adults with HF and their informal caregivers (n = 183 patient–caregiver dyads). HF patients were followed over 12 months for the following clinical events: hospitalization for HF, emergency room visit for HF or all-cause mortality. Influence of baseline caregiver- and patient-level factors (patient and caregiver age; dyad relationship type; patient New York Heart Association (NYHA) Class, cognition, and comorbidities; and caregiver strain, mental health status, and contributions to HF self-care) on patient risk of death or hospitalization/emergency room use was quantified using Cox proportional hazards regression. Results: Over the course of follow up, 32.8% of patients died, 19.7% were hospitalized for HF and 10.4% visited the emergency room. Higher caregiver strain, better caregiver mental health status and greater caregiver contributions to HF self-care maintenance were associated with significantly better event-free survival. Worse patient functional class and greater caregiver contributions to patient self-care management were associated with significantly worse patient event-free survival. Conclusion: Considering caregiving factors together with patient factors significantly increases our understanding of patient clinical event risk in HF.
This study investigates changes in the mental and physical health of carers compared to non-carers over 10 years in a sample of New Zealanders aged 54–70. Mental health increased slightly over time for all participants but there was no difference in trajectory change based on carer status except for those who stopped caring. No significant differences in physical health or differences in trajectory change for physical health across time based on caregiver status were found. Results provide some support for a health selection bias into caring and the adaptation hypothesis of caring across time.
Caring for dependent relatives has become a normative challenge for families in the USA and throughout the world. The study objective was to examine the relationship of family caregiving responsibilities and the mental health and well-being of individuals, ages 18–24 years, referred to as emerging young adults. It was hypothesized that young adult caregivers with past and present responsibilities would report significantly more symptoms of depression and anxiety, have lower self-esteem, and use less adaptive coping styles than non-caregiving peers. The sample consisted of 353 undergraduates (81 past caregivers, 76 current/past caregivers, and 196 non-caregivers). Caregivers were also evaluated in terms of care recipients, duration of caregiving, tasks, and hours of effort. Caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers. Research to clarify how caregiving interacts with other stressors in emerging young adults and influences behavioral health should be a priority.
In this study, the aims were to assess the mental health state of carers for patients with Alzheimer-type dementia (AD) according to stage of disease and to collect data with the aim of determining precautions to reduce the load of the patient and disease on the carer. The study included 120 patients with stages determined, according to the clinical dementia rating scale (CDR), and 120 patient relatives above the age of 18 who cared for these patients every day, for the whole day or part of the day, and who accepted participation in the research. This prospective and cross-sectional study performed a detailed neurological examination of patients, and after completing the “personal information form” with the interviewer, each patient had CDR and mini-mental test (MMSE) applied to determine stage of dementia and physical state. Carers first completed the “personal information form” and then had the short symptom inventory (SSI) applied. According to the stage of patients, there were significant differences determined in the points for all sub-scales belonging to the SSI of carers. As the disease stage increased, all sub-scale points for the SSI increased. With the transition of disease stages from 0.5–1 to stage 2, from stage 2 to 3, and with the inverse reduction in MMT scores, the points obtained by carers on the SSI sub-scales increased. This data shows that with progressing disease stage, the load on the carer increases and mental health begins to dysfunction.
Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers' experiences within a community-based CPSW pilot program in an Australian mental health service. Semi-structured phone interviews were conducted with 20 carer participants in 2015, 5-10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the "ripple effect" the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.
Background: The health of informal caregivers of adults with chronic conditions is increasingly vital since caregivers comprise a large proportion of supportive care to family members living in the community. Due to efficiency and reach, internet-based interventions for informal caregivers have the potential to mitigate the negative mental health outcomes associated with caregiving. Objective: The objective of this systematic review and meta-analysis was to examine the impact of internet-based interventions on caregiver mental health outcomes and the impact of different types of internet-based intervention programs. Methods: MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane, and AgeLine databases were searched for randomized controlled trials or controlled clinical trials published from January 1995 to April 2017 that compared internet-based intervention programs with no or minimal internet-based interventions for caregivers of adults with at least 1 chronic condition. The inclusion criteria were studies that included (1) adult informal caregivers (aged 18 years or older) of adults living in the community with a chronic condition; (2) an internet-based intervention program to deliver education, support, or monitoring to informal caregivers; and (3) outcomes of mental health. Title and abstract and full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for mental health outcomes were meta-analyzed. Results: The search yielded 7923 unique citations of which 290 studies were screened at full-text. Of those, 13 studies met the inclusion criteria; 11 were randomized controlled trials, 1 study was a controlled clinical trial, and 1 study comprised both study designs. Beneficial effects of any internet-based intervention program resulted in a mean decrease of 0.48 points (95% CI –0.75 to –0.22) for stress and distress and a mean decrease of 0.40 points (95% CI –0.58 to –0.22) for anxiety among caregivers. For studies that examined internet-based information and education plus professional psychosocial support, the meta-analysis results showed small to medium beneficial effect sizes of the intervention for the mental health outcomes of depression (–0.34; 95% CI –0.63 to –0.05) and anxiety (–0.36; 95% CI –0.66 to –0.07). Some suggestion of a beneficial effect on overall health for the use of information and education plus combined peer and professional support was also shown (1.25; 95% CI 0.24 to 2.25). Overall, many studies were of poor quality and were rated at high risk of bias. Conclusions: The review found evidence for the benefit of internet-based intervention programs on mental health for caregivers of adults living with a chronic condition, particularly for the outcomes of caregiver depression, stress and distress, and anxiety. The types of interventions that predominated as efficacious included information and education with or without professional psychological support, and, to a lesser extent, with combined peer and psychological support. Further high-quality research is needed to inform the effectiveness of interactive, dynamic, and multicomponent internet-based interventions. Trial Registration: PROSPERO CRD42017075436; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=75436 (Archived by WebCite at http://www.webcitation.org/709M3tDvn)
Carers of people with mental illness frequently report interpersonal difficulties in their caring relationship, and experiential avoidance likely contributes to these problems. This study aimed to examine the relationship between experiential avoidance and eight interpersonal problem domains amongst lay mental health carers, and tested the mediating role of attachment anxiety and hostility. In addition, an alternative (reverse) mediation was tested in which experiential avoidance played the mediating role. A cross-sectional community-based sample of 145 mental health carers completed a questionnaire containing demographics and measures of interpersonal problems, experiential avoidance, attachment anxiety and hostility. Results indicated the relationship between experiential avoidance and interpersonal problems was fully mediated for the interpersonal problem domains of cold/distant and socially inhibited. Partial mediation was evident for the vindictive/self-centered, non-assertive, overly accommodating, self-sacrificing and intrusive/needy domains. No mediation occurred for the domineering/controlling domain. Alternative (reverse) model findings indicated partial/full mediation for the overly accommodating, domineering/controlling and vindictive/self-centered domains, and no mediation for the remaining five domains. Although tentative, findings suggest a mechanism for the relationship between experiential avoidance and particular domains of interpersonal problems that warrants further investigation. The importance of our data is highlighted by the burden and difficult relationships experienced by mental health carers, that requires targeted and effective psychological treatment.
The use of an Acceptance and Commitment Therapy (ACT) and Schema group intervention with the mental health carer population has a strong justification: 1) There is a theoretical rationale for the role of experiential avoidance and negative expectations of relationships (and associated cognitive fusion) in underpinning mental health carers interpersonal problems; 2) Correlational data demonstrates that the processes targeted by ACT (i.e. experiential avoidance) and Schema therapy (i.e. negative expectations of relationships) are associated with mental health carer's experiences of interpersonal problems; 3) Existing studies demonstrate positive results for ACT based interventions with caregiver populations; 4) Multicomponent carer interventions with two conceptually different approaches have achieved more positive outcomes in prior studies. The current study aims to pilot an ACT and Schema group intervention for mental health carers’ interpersonal problems, examining acceptability and conducting preliminary assessment of effectiveness.
Research has shown that young people who care for parents and relatives (young carers and young adult carers) are at greater risk of mental and emotional difficulties and are more likely to do badly at school or college. To explore the difficulties faced by young adult carers (aged 14–25) in the UK, an online survey was conducted. Almost half (45%) of the 295 respondents reported having a mental health problem. The relationship between the extent of caring and perceived mental health problems and the impact of caring responsibilities on work and education were investigated.
This longitudinal study using the sampling frame of the second Australian prevalence study of psychosis aimed to identify predictors of the health and well-being of care-givers of people with psychosis and inform social work recovery-oriented practice. Ninety-eight carers were recruited at baseline and seventy-eight re-interviewed after one year. Correlational and regression analyses were conducted to identify relationships between carer and service user-related factors and predictors of carers’ health and well-being over time. Carers’ poor health and well-being were predicted by a combination of specific service user-related characteristics and care-giving factors. Carers’ assessment of the functioning of their relative/friend with psychosis at baseline had stronger relationships with their own health and well-being at follow-up than other factors. Carers’ care-giving burden was predicted by their educational levels and their relative/friend’s cognitive levels over time. To achieve improved health and well-being for carers, services need to consider potential deterioration of carers’ physical health over time, to facilitate appropriate referral of carers with physical health problems and provide psycho-social rehabilitation services to improve the functioning of people with psychosis. Findings provide some evidence to support social work recovery-oriented practice in working with people with psychosis and the routine inclusion of carers in such interventions.
Purpose Micro-finance self-help groups empower caregivers to indulge in productive activities based on the local availability of resources to reduce their financial burden. The purpose of this paper is to assess the need for and feasibility of initiating micro-finance groups for the caregivers of persons with mental disability in a rural socio-economically backward community of Karnataka, India. Design/methodology/approach The design of the study was a cross-sectional survey, with mixed methodology design out of the eight localities where the Mental Health Public Health Centres (PHC) were running successfully in Konandur area, Thirthahalli Taluk, Karnataka, one PHC was selected using simple Random Sampling Design and a 5 kms radius from Konandur town was selected as the area of the survey (190 households). During door-to-door survey, if the family indicated that a particular member is mentally unwell, the GHQ-5 and Symptoms and Others checklist were administered on him/her and the women caregiver was interviewed using qualitative needs assessment schedule and Perceived Social Support Scale. Findings Ten persons/households with mental illness (5.26 per cent) were identified in the community. Themes of financial needs, capacity of the caregiver, community resources, need for the microfinance self-help groups, informational needs, social support, burn out, and stigma elicited in the interview were depicted in the form of a conceptual framework to understand the inter-connectedness between the various themes. Research limitations/implications This study is the first initiative in the field of micro-finance self-help groups for the persons with mental illness and families. The design of the study was a cross-sectional survey, which is found globally to be the most suited in conducting prevalence studies, as it provides accurate results for future studies as well as it is the first step to obtain accurate baseline values to later plan a prospective follow up study. The study used mixed methodology design. Though the sample size was small, the information collected from the participants in qualitative and quantitative method was triangulated and conceptual frameworks were developed. As this study is one of the first of its kind in the country, the results of this study from the stated sample can be considered as an important pilot for future longitudinal and cross-sectional studies to be planned in the community. Originality/value There is hardly any scientific literature which talks about the need for Micro-finance self-help groups for Persons with Disability, especially with person with mental disability. In order to initiate any Micro-finance SHG activities, it is essential to first undertake the need for and feasibility of initiating such micro-finance group activities in any given area. This study will be an important milestone in initiating any self-help group activity for caregivers of persons with mental disability, as it would help us understand the financial needs of the community, based on which a draft proposal to initiate micro-finance self-help group activities can be drawn up.
Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.
Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.
Objectives: This study aims to analyse the level of distress caused by delirium in patients' family and their nurses, and to identify factors associated with psychological distress in families of older adult inpatients in Intermediate Care Units/IMCUs regarding their global experience during hospitalization. Method: A prospective pilot study was carried out with families and nurses of older adult patients (≥65 y.o.) consecutively recruited from two IMCUs in Intensive Care Medicine Service in a University Hospital. Patients with Glasgow Coma Scale ≤11, brain injury, blindness/deafness and inability to communicate were excluded. Delirium was daily assessed with Confusion Assessment Method/CAM. The distress level regarding this episode in family and nurses was measured with Delirium Experience Questionnaire/DEQ. Family psychological distress of all recruited patients was assessed with Kessler Psychological Distress Scale/K10. Results: This study included 42 inpatients (mean age/MA = 78 y.o., 50% women), 32 families (68.8% sons/daughters, MA = 50.6 y.o., 81.3% women) and 12 nurses caring for delirium patients (MA = 33 y.o., all women). A total of 12 (28.6%) patients had delirium. Distress related to this episode were higher for families than for nurses (M = 3 vs. M = 2), but differences did not reach statistical significance (Z = –1.535, p = 0.125). The hierarchical regression model explained 44.3% of variability in family psychological distress. Higher levels of psychological distress were associated with living with the patient (p = 0.029), presence of previous cognitive decline (p = 0.048) and development of delirium (p = 0.010). Conclusion: These preliminary results show that family psychological distress is higher, when older adult patients developed delirium during hospitalization. Particular attention to these family carers should be given in future development of psychological support and psychoeducational interventions.
As parents age, well siblings are often asked to assume caregiving responsibilities for their brother or sister with mental illness. However, relatively little is known about how well siblings prioritize sibling caregiving responsibilities with other life demands. We examined well siblings’ attitudes toward self-care and caregiving for their sibling with mental illness (self- and sibling-care) using two cross-sectional samples. The first sample of well siblings (N = 242) was used to examine the psychometric properties of the self- and sibling-care measure (SSCM), designed to assess the degree to which siblings prioritize their own needs and the needs of their sibling with mental illness. A second sample (N = 103) was used to determine the relative contribution of self- and sibling-care attitudes in accounting for variation in well siblings’ reports of personal loss and stress-related personal growth. Results support the psychometric validity of the SSCM and suggest that self- and sibling-care attitudes account for greater variance in scores on perceived personal loss and stress-related growth than demographic or caregiving factors. Our findings support the need to address family care responsibilities and resource limitations through recovery-oriented mental health policies, services, and programs.
Background: Persons with psychiatric disorders (PD) commonly have their money officially or unofficially managed by others, with money managers most commonly being family members. Aims: (i) Identify characteristics of persons with PD, adult family members, and interactions with each other significantly associated with family money management (FMM). (ii) Identify significant differences in aforementioned characteristics between official versus unofficial FMM. Methods: Five hundred and seventy-three adults residing in USA with an adult relative with PD completed a survey. Results: Among persons with PD, FMM was positively associated with lower income, diagnosis of schizophrenia/schizoaffective or bipolar disorder, psychiatric hospitalization, and arrest history. FMM was negatively associated with family members having a mental health diagnosis. FMM was positively associated with interaction characteristics of co-residence, financial assistance, caregiving, and use of limit-setting practices. Compared to official FMM, when unofficial FMM was present, persons with PD were less likely to have been psychiatrically hospitalized or to have regularly attended mental health treatment. When unofficial FMM was present, adult family members were less likely to be a parent of the person with PD. Conclusions: Practitioners should assess the level of burden experienced by family money managers and assess and address with family money managers the use of limit-setting practices.
Carers of individuals with eating disorders (EDs) report high levels of burden and distress and describe a number of unmet needs. As a result, a number of interventions have been designed to support carers, including the “Maudsley eating disorder collaborative care skills workshops,” which comprise six 2‐hr workshops delivered over 3 months for parents and carers of people with EDs. The current study aimed to test a proof‐of‐concept that this workshop could be effectively delivered in 1 day. An additional aim was to assess whether the workshop had direct effects on carer skills. A nonexperimental repeated measures research design was employed, giving measures before and after a 1‐day workshop. Results suggested significant increases in carer self‐efficacy and carer skills, with moderate to large effect sizes. Qualitative analyses supported these results whilst also generating ideas to improve the 1‐day workshop.
Over a third of individuals with borderline personality disorder (BPD) are in long-term romantic partnerships, yet little is known about the experiences of their partners. Because difficulties in interpersonal relationships are a hallmark of BPD, it is especially important to understand the support needs of their romantic partners. This systematic review investigates the experiences of romantic partners of adult individuals with BPD and the interventions designed to support them. Twenty-two articles were found, 13 of which pertained to partner experiences and 9 to interventions. Thematic analysis was used to identify three main themes in the descriptions of partners' experiences: emotional challenges, dual roles as both a romantic partner and parental/therapeutic figure, and lack of control. The available interventions, which consisted of educational and skills-based programs with limited efficacy data, addressed only a small portion of the subthemes identified in the literature describing partners' experiences. The discrepancy between the needs identified in the partner-experience literature and the interventions available suggests a need to develop and evaluate more partner-oriented programming. Such programming should use psychoeducation, peer support, and individual- and relationship-based skills development to address and therefore improve the experiences of partners of individuals with BPD.
Purpose The purpose of this paper is to reflect on the development of a recovery-oriented training programme for mental health care-givers. It also considers the effectiveness of using participatory research methods that promote involvement of people with diverse expertise to co-produce this programme. It presents a rationale for developing recovery-oriented training, which employs blended learning, comprising face-to-face and e-learning. Design/methodology/approach A small advisory group consisting of professionals, experts-by-experience (service users) and -by-caring (care-givers) and an academic developed a blended learning programme about the recovery approach for mental health carer-givers. This paper details the participatory approach supported by an action research cycle that contributed to the design of the programme, and the specific impact of experiential knowledge on its development. Findings Reflections on the advisory group process are described that led to the co-production of the course. This leads to consideration of the value of using this research approach to develop a carer-focused programme. The content of the recovery-oriented training programme is presented which adopts blended learning. This leads to discussion of potential of this format to improve carers’ access to training. Originality/value It is proposed that this recovery-oriented course, building on a previous study, has the potential to positively influence outcomes for the training programme participants (the care-givers) and the person they support. It is suggested that blended learning may in part overcome some of the barriers carers experience to accessing and participating in traditional interventions. Reflections on the process of co-production underline the value of participatory research in designing this recovery-oriented course for carers.
Background: Expressed emotion (EE) is a global index of familial emotional climate, which is comprised of emotional over-involvement (EOI) and critical comments (CC)/hostility. Although EE is an established predictor of negative outcomes for both people with long-term mental health difficulties and their family carers, its psychological underpinnings remain relatively poorly understood. This paper examined associations between attachment, mentalisation ability and aspects of EE. Methods: Carers of people with long-term mental health difficulties (n = 106) completed measures of adult attachment (the Experiences in Close Relationships-Short Form questionnaire), mentalisation (the Reading the Mind in the Eyes Test and the Emotional Self-Efficacy Scale) and EE (the Family Questionnaire). Data were analysed using hierarchical multiple regression. Results: Attachment avoidance and facets of mentalisation were directly and uniquely positively associated with CC/hostility, with attachment avoidance and other-directed emotional self-efficacy (one facet of mentalisation) each significantly predicting CC/hostility scores after controlling for the effects of EOI and demographic variables. However, no associations were observed between EOI, attachment anxiety and mentalisation. Furthermore, no indirect effects from attachment to EE via mentalisation was found. Conclusions: Although it would be premature to propose firm clinical implications based on these findings, data indicate that it may be beneficial for clinicians to consider attachment and mentalisation in their conceptualisation of carers’ criticism and hostility. However, further research is needed to clarify the magnitude of these associations and their direction of effect before firm conclusions can be drawn.
Purpose :The aim of the article is to explore the chronic sorrow experiences of the caregivers of clients with schizophrenia in Taiwan. Design and Methods: Descriptive, phenomenological, and purposive sampling and one‐to‐one, in‐depth, and unstructured interviews were used. Data saturation was achieved after interviewing 12 participants. Narratives were analyzed using Colaizzi's (1978) method. Findings: Three themes and eight subthemes emerged, including encountering sorrow (disordered life, disintegrated self‐esteem, little prospect for hope, and collapsed sense of security), talking with sorrow (cognitive change and transformation of action), and living with sorrow (living with defects and living with responsibilities). Practice Implications: Advanced practice psychiatric nurses should take the emotional stability of caregivers into consideration. Caregivers should be encouraged and taught effective culture‐oriented strategies for living with sorrow.
Purpose: Clinical guidelines emphasise the central role of family members in supporting people with bipolar disorder. However, there has been little focus on the challenges family members face in supporting their relative. This qualitative study explored the challenges of providing support to a relative with bipolar disorder, and how family members attempted to meet these challenges. Factors that helped or hindered their efforts were also explored, including experiences of professional support. Methods: Semi-structured interviews were conducted with 18 family members (partners, parents, adult children, and siblings). Transcripts were analysed using the Framework approach. Results: Participants faced numerous challenges pertaining to the nature of the disorder and specific illness phases, their relative’s responses to their attempts to help, and the limitations of support from healthcare professionals. Although participants were resourceful in managing these challenges, they strongly valued professional input. Six themes were identified: ‘Not knowing: like being in a minefield’, ‘It’s out of my control: sitting waiting for the next thing to happen’, ‘Treading on eggshells’, ‘Picking up on signs’, ‘Times of crisis: between a rock and a hard place’, and ‘I have to make my voice heard’. Conclusions: Family members supporting a relative with bipolar disorder face significant challenges but show considerable resourcefulness in managing them. The findings underline the importance of input from healthcare professionals to help family members effectively support their relative and manage the challenges they face. Professional support should be strengths-based, and tailored to family members’ needs.
This experimental study was carried out using a pre-test/post-test control group model to evaluate the effect of a "Brief Cognitive Behavioural Stress Management Programme" (BCBSMP) on mental status, coping with stress attitude, and caregiver burden while caring for patients with schizophrenia. A total of 61 caregivers who provided care for schizophrenia patients at a community mental health centre were included in the study. Caregivers were matched according to gender and scale scores and were assigned to either the study or the control group. Before and after the programme, caregivers in both groups were given the "Demografic Data Form", "Zarit Caregiver Burden Scale", "Coping Attitude Evaluation Scale", "Stress Indicators Scale", and the "General Health Survey-28". Caregivers in the study group were taken to a BCSMP one session per week (each session lasted 120min) for seven weeks. We determined that the stress indicators, the risk of developing a psychological disorder, and caregiver burden decreased and skills related to both the problem-oriented and emotion-oriented aspects of stress increased in the study group after the programme.
The aim of this study was to explore the needs of Family Caregivers of people living with mental illness in Kumasi, Ghana. An exploratory research design using a Qualitative approach was employed for the study and one on one interview was used to collect data. A total of 13 participants who were identified as Family Caregivers of mentally ill persons having their rehabilitation in Kumasi were used for the study. Thematic content analysis was used to analyse and interpret the qualitative data. The results indicated that Family Caregivers were in need of medical attention as well as helping hand to assist them in their many physical engagement and adequate sleep and time off to replenish their lost energies to prevent stress. They were also in need of shelter to accommodate their mentally ill relatives as well as social affection. Others were in need of information to gain insight into patient's treatment and condition as well as financial support. Family Caregivers needed support from friends and society in order to psyche them for their task. It is, therefore, necessary that the needs of Family Caregivers are addressed so that they can function accordingly.
The purpose of this article is to generate meaningful understanding of the mental health informal carers’ experience and to identify a possible approach to social work intervention. A mixed method of quantitative and qualitative analysis was used for data collection. The findings reveal that most of the informal carers are female adult. They experience stress, domestic violence, social exclusion as a result of the caring role, and fear of stigma. Cultural and religious factors must be considered when translating the caring role. The findings suggest implications for social work practice at a community level, utilizing a familial and support-group approach, with a practice that is sensitive to gender and religion.
BACKGROUND: Parents often become the caregivers for their adult children with serious mental illness (SMI) due to the chronic and debilitating course of the illness and shortages in funding for community mental health services and residential placements. OBJECTIVE: To examine parents' management styles when caring for adult children with SMI and parents' perspectives on what type of community-based mental health interventions would support and/or enhance overall family functioning. DESIGN: A qualitative descriptive study using semistructured interviews with parents caring for adult children with SMI. The study was undergirded by Knafl and Deatrick's Family Management Style Framework. RESULTS: Four major themes emerged from the data describing prolonged and difficult phases that parents and the family undergo in caring for an adult child with SMI. CONCLUSIONS: Successful management of these phases must include increasing access to mental health information, mental health screening, early interventions, and violence prevention for adult children and their families.
WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell. Carers found themselves in the middle between mental health services and their relatives. Strategies employed by carers to ensure their relatives receive adequate care were identified from this study. This paper identified how carers needed to become more assertive in order to receive adequate care for their relatives, and this finding has implications for any future carer education. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The participants identified the need to work more collaboratively with carers of people with a mental illness as they seek treatment for their relatives in order to achieve better health outcomes for the patients. Improved health service engagement of carers was seen by participants to assist them to better care for their relative. The study also found that there needs to be a clearer definition as to what constitutes mental health crisis and how carers are able to intervene during this period. Services could provide clear information concerning crisis services and in particular triage.
A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret (2) finding comfort through being listened to about negative experiences (3) supporting participants' sharing as facilitators (4) understanding and affirming oneself through repeated sharing of experiences and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes.
Background: Shortened life expectancy of people with mental illness is now widely known and the focus of research and policy activity. To date, research has primarily reflected perspectives of health professionals with limited attention to the views and opinions of those most closely affected. The voice of carers is particularly minimal, despite policy stipulating carer participation is required for mental health services. Aim: To present views and opinions of carers regarding physical health of the people they care for. Methods: Qualitative exploratory. Two focus groups and one individual interview were conducted with 13 people identifying as carers of a person with mental illness. Research was conducted in the Australian Capital Territory. Data analysis was based on the thematic framework of Braun and Clarke. Results: Two main themes were interaction between physical and mental health; and, carers’ own physical and mental health. Participants described the impact of mental illness and its treatments on physical health, including their own. Conclusions: Carers are acknowledged as crucial for the delivery of high quality mental health services. Therefore they have an important role to play in addressing the poor physical health of people with mental illness. Hearing their views and opinions is essential.
Objectives: Stigma compounds the burden experienced by family members of those with a mental illness. This study aimed to examine burden experienced by carers of people with schizophrenia or affective disorders and to explore the relationship between carer burden and stigma. Method: A cross sectional descriptive study was conducted with patient-carer dyads involving 67 patients diagnosed with schizophrenia and 51 diagnosed with affective disorder. Carers completed the Zarit Burden Interview (short version) and stigma was measured using the Stigma Scale and the Internalised Stigma of Mental Illness Scale. Results: Carer burden was significantly higher for schizophrenia than affective disorders. Female carers experienced significantly higher burden than male carers. Diagnosis, gender of carer and stigma predicted 22% of the variance in carer burden, with gender identified as a significant predictor. Conclusions: Reducing stigma related to disclosure of mental illness in carers has the potential to reduce carer burden.
The literature reported several factors which could impact the quality of life of caregivers and patients with psychiatric illnesses. This study aimed to determine the level of quality of life among a sample of 532 of caregivers and patients with psychiatric illness at two out-patient mental health clinics in Northern Jordan, and to examine the relationships of sociodemographic characteristics, stigma and caregiver perceptions of burden with quality of life. A correlational descriptive design was utilized. Three self-administered questionnaires were used. Results indicated that patients had low to moderate QOL, and they suffered moderate to high stigma. Also, family caregivers perceived low to moderate QOL. Patients' and family caregivers' stigma perception correlated negatively and significantly with WHOQOL-BREF. Family caregivers' burden correlated negatively and significantly with all domains of WHOQOL-BREF, total QOL-100, and self-reported general health. Health care providers should assure the importance of focusing more toward minimizing stigma and promoting physical and general health to maintain a good quality of life of caregivers and patients with mental illnesses.
The first aim of this systematic review was to evaluate the evidence for family psychoeducation (FPE) interventions for major depressive disorder (MDD). A second aim was to compare the efficacy of different modes of delivering face-to-face FPE interventions. Ten studies (based on nine distinct samples) were identified comprising four single-family studies, four multifamily studies, one single versus multifamily comparative study, and one peer-led, mixed-diagnosis study. Seven studies measured patient functioning and six reported positive outcomes. Six studies measured carer's well-being and four reported positive outcomes. Results provide preliminary evidence that FPE leads to improved outcomes for patient functioning and family-carer's well-being for persons with depression. The implications for future development and delivery ofFPE interventions for MDD are discussed.
Previous research on healthcare technologies has shown how health tracking promotes desired behavior changes and effective health management. However, little is known about how the family caregivers' use of tracking technologies impacts the patient-caregiver relationship in the home. In this paper, we explore how health-tracking technologies could be designed to support family caregivers cope better with a depressed family member. Based on an interview study, we designed a simple tracking tool called Family Mood and Care Tracker (FMCT) and deployed it for six weeks in the homes of 14 family caregivers who were caring for a depressed family member. FMCT is a tracking tool designed specifically for family caregivers to record their caregiving activities and patient's conditions. Our findings demonstrate how caregivers used it to better understand the illness and cope with depressed family members. We also show how our tool improves family communication, despite the initial concerns about patient-caregiver conflicts.
Background: Caregivers are responsible for the home care of family members with mental-health disorders often experience changes in their life that can generate stress and burden. The aim of this study was to identify factors associated with the burden of caregivers of family members with mental disorders. Methods: This cross-sectional study was conducted with a non-probability sample of family caregivers, whose patients attended a community services program, the Psychosocial Care Centers, in three cities in the southwest region of Goiás State, Central Brazil. Data collection took place from June 2014 to June 2015. The participants were 281 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview (ZBI). Bivariate analyses (t test, analysis of variance, and Pearson correlation) were performed, and variables with values of p < 0.10 and gender were included in a multiple-linear regression model. Values of p < 0.05 were considered significant. Results: The caregivers were mostly female and parents of the patients, were married, with low education, and of low income. The mean ZBI score was 27.66. The factors independently associated with caregivers’ burden were depression, being over 60 years of age, receiving no help with caregiving, recent patient crisis, contact days, and having other family members needing care. Conclusions: This study identified factors that deserve the attention of community services and can guide programs, such as family psycho-education groups, which may help to minimize or prevent the effects of burden on family caregivers responsible for patients’ home care.
Psychoeducational interventions for family carers of people with psychosis are effective for improving compliance and preventing relapse. Whether carers benefit from these interventions has been little explored. This systematic review investigated the effectiveness of psychoeducation for improving carers' outcomes, and potential treatment moderators. We searched for randomised controlled trials (RCTs) published in English or Chinese in eight databases. Carers' outcomes included wellbeing, quality of life, global morbidities, burden, and expressed emotion. Thirty-two RCTs were included, examining 2858 carers. Intervention duration ranged from 4 to 52weeks, and contact times ranged from 6 to 42hours. At post intervention, findings were equivocal for carers' wellbeing (SMD 0.103, 95% CI −0.186 to 0.392). Conversely, psychoeducation was superior in reducing carers' global morbidities (SMD −0.230, 95% CI −0.386 to −0.075), perceived burden (SMD −0.434, 95% CI −0.567 to −0.31), negative caregiving experiences (SMD −0.210, 95% CI −0.396 to −0.025) and expressed emotion (SMD −0.161, 95% CI −0.367 to −0.045). The lack of available data precluded meta-analysis of outcomes beyond short-term follow-up. Meta-regression revealed no significant associations between intervention modality, duration, or contact time and outcomes. Further research should focus on improving carers' outcomes in the longer-term and identifying factors to optimise intervention design.
Purpose: Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. Methods: At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Results: Caregivers’ mental health was worse than the U.S. national population (M = 44.31, p < .001), yet their physical health was better (M = 56.20, p < .001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = −8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = −0.17, p = .01) caregivers with low educational attainment (B = 4.36, p < .001) who cared for patients reporting low social well-being (B = 0.35, p = .05) reported worse physical health. Conclusions: In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.
Background: The recovery process of a psychiatric patient is related to his primary informal caregiver's style of coping with stress. There is insufficient literature on validations of instruments that measure coping styles in this population. Objective: To adapt and validate a scale to measure coping strategies in primary informal caregivers. Method: The adapted scale was based on the Extreme Coping Scale of López‐Vázquez and Marván. Items from that scale were adapted for application to informal caregivers. The scale was administered to 122 primary informal caregivers of patients from two psychiatric institutions in Mexico. Psychometric analyses were performed to determine the scale's properties. Results: The scale was composed of 20 items (six less than in the original scale) and two factors: (i) active coping (Cronbach's alpha = .837) and (ii) passive coping (Cronbach's alpha = .718). Discussion: The findings are discussed in the light of the importance of studying the relationship between coping styles and the well‐being of both informal caregivers and psychiatric patients. Implications for practice: The scale could be used by health practitioners and researchers to generate strategies to support the family caregiver, as well as to measure the results of interventions.
The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n = 201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden.
Within the current Dutch policy context the role of informal care is revalued. Formal care activities are reduced and family and friends are expected to fill this gap. Yet, there is little research on the moral ambivalences that informal care for loved ones who have severe and ongoing mental health problems entails, especially against the backdrop of neoliberal policies. Giving priority to one’s own life project or caring for a loved one with severe problems is not reconciled easily. Using a case study we illustrate the moral ambivalences that persons may experience when they try to shape their involvement and commitment when a relative is in need. The case comes from a research project which explores whether it is possible to reduce coercive measures in psychiatry by organizing a Family Group Conference. The purpose of the article is to explore what theoretical concepts such as ‘communities of fate’, ‘communities of choice’ and ‘personal communities’ add in understanding how persons shape their involvement and commitment when a family member experiences recurrent psychiatric crises.
This positional paper explores the role of personal networks (family and friends) in caring for people with mental health problems. Since the eighties, major changes have been made in the organization and focus of professional mental healthcare. Correspondingly, new expectations and changes in the division of care responsibilities between people with mental health problems, their personal networks and their professional care providers were created. In this paper, I investigate how the transition in mental healthcare changed the allocation of care responsibilities between personal networks, people with mental health problems and professional caregivers. I will consider why care responsibilities of personal networks have been taken for granted in these processes, and discuss whether personal networks should have a more prominent voice in the assignment of care responsibilities, and how this can be done. A theoretical framework of feminist care ethics inspired by scholars such as Margaret Urban Walker, Joan Tronto and Hilde Lindemann is used to reflect on the need for social inclusion.
Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low‐ and middle‐income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi‐structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi‐structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients’ needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients’ vulnerability as caregivers could redirect care‐giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis‐related mental health problems, community‐based mental healthcare should broaden its scope and incorporate local strengths and challenges.
Providing care to a disabled parent can be a psychologically strenuous activity with potential negative consequences for the caregiver's mental health. At the same time, experiencing the declining health of a parent – often the very reason for the parent's care needs – can impact the adult child's mental health negatively. Because both events are usually observed simultaneously, disentangling the “caregiver effect” and the “family effect” remains a challenge. Using longitudinal data of the elderly population in Europe and an instrumental variable approach to address possible endogeneity concerns, this paper separately estimates the effect of caregiving and the decline of a parent's health on adult children's mental health. While I find negative but small caregiver and family effects for the “average” caregiver, the caregiver effect is multiplied for daughters if care provision is triggered by higher parental care needs.
Significant others are often crucial for suicidal persons or suicide attempters’ access to care, yet little is known about their efforts to seek help. This article presents the findings of a qualitative pilot study carried out in Switzerland on the help-seeking process of 18 significant others, their perception of the care received by their loved one, and the interactions and collaboration they experienced with professionals. Most significant others repeatedly sought out support for their loved one and themselves. The help-seeking process seemed mostly difficult, was seldom successful on the first attempt, and was filled with multiple difficulties, such as availability and continuity of care and cooperation issues with professionals. Two-thirds of participants were not satisfied with the care provided to their loved ones and half of them faced challenges in their cooperation with professionals, i.e., poor sharing of information or not being acknowledged as partners or supported by professionals. Based on their experience, providing education about suicidal crises and care programs to significant others might lighten their burden and improve their cooperation with professionals, who in turn may benefit from training in communication issues and specific methods of cooperation with significant others in suicidal situations.
Informal care‐giving can be a demanding role which has been shown to impact on physical, psychological and social well‐being. Methodological weaknesses including small sample sizes and subjective measures of mental health have led to inconclusive evidence about the relationship between informal care‐giving and mental ill‐health. This paper reports on a study carried out in a region which investigated the relationship between informal care‐giving and mental ill‐health. The analysis was conducted by linking three data sets, the Northern Ireland Longitudinal Study, the Northern Ireland Enhanced Prescribing Database and the Proximity to Service Index from the Northern Ireland Statistics and Research Agency. Our analysis used both a subjective measure of mental ill‐health, i.e. a question asked in the 2011 Census, and an objective measure, whether the respondents had been prescribed antidepressants by a General Practitioner between 2010 and 2012. We applied binary logistic multilevel modelling to these two responses to test whether, and for what sub‐groups of the population, informal care‐giving was related to mental ill‐health. The results showed that informal care‐giving per se was not related to mental ill‐health, although there was a strong relationship between the intensity of the care‐giving role and mental ill‐health. Females under 50, who provided over 19 hours of care, were not employed or worked part‐time and who provided care in both 2001 and 2011 were at a statistically significantly elevated risk of mental ill‐health. Caregivers in remote areas with limited access to shops and services were also at a significantly increased risk as evidenced by prescription rates for antidepressants. With community care policies aimed at supporting people to remain at home, the paper highlights the need for further research in order to target resources appropriately.
The recent rise in suicide among Bhutanese refugees has been linked to the erosion of social networks and community supports in the ongoing resettlement process. This paper presents ethnographic findings on the role of informal care practiced by relatives, friends, and neighbors in the prevention and alleviation of mental distress in two Bhutanese refugee communities: the refugee camps of eastern Nepal and the resettled community of Burlington, Vermont, US. Data gathered through interviews (n = 40, camp community n = 22, resettled community), focus groups (four, camp community), and participant observation (both sites) suggest that family members, friends, and neighbors were intimately involved in the recognition and management of individual distress, often responding proactively to perceived vulnerability rather than reactively to help-seeking. They engaged practices of care that attended to the root causes of distress, including pragmatic, social, and spiritual interventions, alongside those which targeted feelings in the “heart-mind” and behavior. In line with other studies, we found that the possibilities for care in this domain had been substantially constrained by resettlement. Initiatives that create opportunities for strengthening or extending social networks or provide direct support in meeting perceived needs may represent fruitful starting points for suicide prevention and mental health promotion in this population. We close by offering some reflections on how to better understand and account for informal care systems in the growing area of research concerned with identifying and addressing disparities in mental health resources across diverse contexts.
Aims and objectives: To explore parents’ involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of ‘Involvement in the light–Involvement in the dark’ in the context of mental health care.
Background: Mental illness has increased among young people in high‐income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken‐for‐granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility.
Design: A secondary descriptive design with a deductive content analysis was used.
Methods: Ten parents who have a son or daughter with long‐term mental illness (aged 18–25 years) were interviewed. The deductive analysis was based on the caring theory of ‘Involvement in the light–Involvement in the dark’.
Results: The results are described using the following concepts in the theory: ‘Knowing’, ‘Doing’, ‘Being’ and ‘Attitude of the health professionals’. The result are to a great extent consistent with the ‘Involvement in the dark’ metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context.
Conclusions: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child.
Relevance to clinical practice: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other’s knowledge in a partnership to achieve a common caring strategy.
Caring for someone with a mental illness is associated with high levels of burden and psychological distress. Understanding these factors could be important to prevent the development of physical and mental health problems in carers. The purpose of the present study was to determine the contribution of coping styles and social support in predicting the psychological distress reported by informal carers (IC) of individuals with major depression or bipolar disorder. IC (n = 72) of adults with a diagnosed depressive illness were recruited from mental health organizations within the community setting. Carers completed the General Health Questionnaire, Brief COPE, and Social Support Questionnaire. Multiple linear regression analysis revealed that 63% of the variance in psychological distress could be accounted for by adaptive and maladaptive coping styles and perceived quantity and satisfaction with social support. Satisfaction with social support (β = -0.508, P < 0.001) and maladaptive coping (β = 0.369; P < 0.001) were significant predictors of psychological distress. These findings suggest that interventions should consider coping styles, specifically the interaction between maladaptive behaviours and enhancement of quality of support, to assist carers to manage psychological distress, especially earlier in the caring role.
Purpose: To describe the experiences of informal caregivers with the nursing care received by relatives hospitalized for mania.; Design and Methods: Multicenter phenomenological study using open interviews. Data were analyzed using the Stevick-Colaizzi-Keen method.; Findings: The essence of the experiences was the importance of communication, about being informed and involved in treatment during hospitalization of their relative. The experiences depended on the nature of the relation between participant and relative.; Practice Implications: Nurses should listen to caregivers' experiences, inquire about the expectations of caregivers regarding nursing care, and advise informal caregivers on how to take care of their relatives.
Background: Population aging places greater demands on the supply of informal carers. The aims of this study were to examine (1) the types of unmet support needs of carers of older Australians and (2) the association of unmet needs with mental health.; Methods: Utilizing new data from the 2015 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, we calculated the prevalence of carers experiencing specific and multiple unmet needs for support, using single and multiple item measures. Logistic regression models were fitted to examine the association between unmet needs and psychological distress (using the Kessler psychological distress scale), once demographic and health factors were controlled for.; Results: In 2015, 35% of carers of older Australians cited at least one unmet need for support. Among this group, almost two-thirds cited multiple unmet support needs (64.7%). The most prevalent types of unmet needs included financial (18%), physical (13%), and emotional support (12%), as well as additional respite care and support to improve carer health (12%). After controlling for demographic and health characteristics of the carer, having any unmet need for support increased the odds of psychological distress by twofold (OR = 2.20, 95% CI = 1.65, 2.94). With each successive unmet need for support, the odds of psychological distress increased 1.37 times (OR = 1.36, 95% CI = 1.22, 1.54). Those who had received assistance with care, but required further support were 1.95 times more likely (OR = 1.95, 95% CI = 1.17, 3.24) to be in distress and those who had not received care assistance were about 2.4 times more likely (OR = 2.38 95% OR = 1.56, 3.62) to be in distress relative to those with no unmet need.; Conclusions: Addressing unmet support needs of carers is important, not only for the planning of services for carers in an aging population, but also because of the association between unmet support needs and carers mental health.
Objectives: Informal caregiving relationships play an important role in facilitating recovery outcomes in psychosis. The relationship can serve as a source of positive experiences that co-exist alongside common challenges typically associated with mental health problems. People with psychosis, when compared to the general population, are more likely to perpetrate acts of violence, a relationship that is particularly evident during the first psychosis episode. Although victims of service user violence are typically people already known to them, such as informal carers, there remains a lack of understanding about their caring experiences and needs. This study sought to address gaps in the literature by exploring the subjective accounts of informal carers supporting a relative experiencing their first episode of psychosis who has also behaved violently towards them.; Design: A cross-sectional design was employed.; Methods: Individual semi-structured interviews, which were audio recorded and later transcribed for analyses, were undertaken with a convenience sample of eight carers drawn from a specialist early psychosis service. Interview questions focused on their experiences of patient violence, the subjective impact, and coping strategies. An interpretative phenomenological approach was used to analyse the data.; Results: Participants were mostly living with their relative with psychosis and were typically female, parents, and from a black and minority ethnic background. Data analyses identified seven key themes from participant interviews including the lack of predictability over when the violence occurred, being scared and fearful, keeping quiet about what happens at home and in the caregiving relationship, and staying safe.; Conclusions: Reports by informal carers about experiencing violence and victimization from their relatives with psychosis are an important issue in some caregiving relationships during the first episode. Developing a more informed understanding of the specific needs of these carers and the caregiving relationship is indicated. The implications for service providers are discussed.; Practitioner Points: Carers were exposed to a broad range of patient violence, which included being kicked and having weapons used against them. The violence typically occurred within carers' homes, when no other people were around. Patient violence impacted negatively on carer emotional and physical functioning, which included leaving carers living in fear of their own safety and what might become of their relative. The results highlight the importance of routinely asking first-episode carers about their experience of patient violence. The development of interventions (e.g., identification of early triggers, de-escalation) that are able to take account of the ongoing nature and complexity of the caregiving relationship but are purposefully aimed at supporting carers to remain safe in their relationship should be explored for their impact.
Background: Reduced life expectancies are recorded in adults with psychotic disorders. Informal carers play key roles in improving illness outcomes for patients, including significantly reducing rates of relapse and hospitalisation. There is, however, a dearth of literature detailing carers' perspectives on physical health problems in the relatives they care for and implications for those in the caregiving role. The study sought to explore carers' subjective experiences of supporting a relative with psychosis and physical health problems.; Methods: Carers of adults with psychosis were interviewed individually, or as part of a group, about physical health problems in the relatives they care for.; Results: Five key themes were identified from the interviews that reflected (1) ubiquity of physical health problems in psychosis, (2) gaps in service provision for those living with mental and physical health problems, (3) carers' role in responding to service gaps, (4) difficult conversations and (5) impact on carer health.; Conclusion: Service initiatives that are designed to improve patient physical health in psychosis should not overlook the role that informal carers might have in supporting this process. The implications that patient physical health problems present for carer well-being and the quality of the caregiving relationship in psychosis deserve further investigation.
Background: Severe mental illnesses (SMIs) have been found to be associated with both increases in morbidity-mortality, need for treatment care in patients themselves, and burden for relatives as caregivers. A growing number of web-based and mobile software applications have appeared that aim to address various barriers with respect to access to care. Our objective was to review and summarize recent advancements in such interventions for caregivers of individuals with a SMI.; Methods: We conducted a systematic search for papers evaluating interactive mobile or web-based software (using no or only minimal support from a professional) specifically aimed at supporting informal caregivers. We also searched for those supporting patients with SMI so as to not to miss any which might include relatives.; Results: Out of a total of 1673 initial hits, we identified 11 articles reporting on 9 different mobile or web-based software programs. The main result is that none of those studies focused on caregivers, and the ones we identified using mobile or web-based applications were just for patients and not their relatives.; Limitations: Differentiating between online and offline available software might not always have been totally reliable, and we might have therefore missed some studies.; Conclusions: In summary, the studies provided evidence that remotely accessible interventions for patients with SMI are feasible and acceptable to patients. No such empirically evaluated program was available for informal caregivers such as relatives. Keeping in mind the influential role of those informal caregivers in the process of treatment and self-management, this is highly relevant for public health. Supporting informal caregivers can improve well-being of both caregivers and patients.
Few accounts exist of programmes in low- and middle-income countries seeking to strengthen community knowledge and skills in mental health. This case study uses a realist lens to explore how a mental health project in a context with few mental health services, strengthened community mental health competence by increasing community knowledge, creating safer social spaces and engaging partnerships for action. We used predominantly qualitative methods to explore relationships between context, interventions, mechanisms and outcomes in the "natural setting" of a community-based mental health project in Dehradun district, Uttarakhand, North India. Qualitative data came from focus group discussions, participant observation and document reviews of community teams' monthly reports on changes in behaviour, attitudes and relationships among stakeholder groups. Data analysis initially involved thematic analysis of three domains: knowledge, safe social spaces and partnerships for action. By exploring patterns within the identified themes for each domain, we were able to infer the mechanisms and contextual elements contributing to observed outcomes. Community knowledge was effectively increased by allowing communities to absorb new understanding into pre-existing social and cultural constructs. Non-hierarchical informal community conversations allowed "organic" integration of unfamiliar biomedical knowledge into local explanatory frameworks. People with psycho-social disability and caregivers found increased social support and inclusion by participating in groups. Building skills in respectful communication through role plays and reflexive discussion increased the receptivity of social environments to people with psycho-social disabilities participation, thereby creating safe social spaces. Facilitating social networks through groups increases women's capacity for collective action to promote mental health. In summary, locally appropriate methods contribute most to learning, stigma reduction and help-seeking. The complex social change progress was patchy and often slow. This study demonstrates a participatory, iterative, reflexive project design which is generating evidence indicating substantial improvements in community mental health competence.
Objective: The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates.; Methods: From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs).; Results: Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only.; Conclusions: Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.
Context: In response to political and social factors over the last sixty years mental health systems internationally have endeavoured to transfer the delivery of care from hospitals into community settings. As a result, there has been increased emphasis on the need for better quality care planning and care coordination between hospital services, community services and patients and their informal carers. The aim of this systematic review of international research is to explore which interventions have proved more or less effective in promoting personalized, recovery oriented care planning and coordination for community mental health service users.; Methods: A systematic meta-narrative review of research from 1990 to the present was undertaken. From an initial return of 3940 papers a total of 50 research articles fulfilled the inclusion criteria, including research from the UK, Australia and the USA.; Findings: Three research traditions are identified consisting of (a) research that evaluates the effects of government policies on the organization, management and delivery of services; (b) evaluations of attempts to improve organizational and service delivery efficiency; (c) service-users and carers experiences of community mental health care coordination and planning and their involvement in research. The review found no seminal papers in terms of high citation rates, or papers that were consistently cited over time. The traditions of research in this topic area have formed reactively in response to frequent and often unpredictable policy changes, rather than proactively as a result of intrinsic academic or intellectual activity. This may explain the absence of seminal literature within the subject field. As a result, the research tradition within this specific area of mental health service delivery has a relatively short history, with no one dominant researcher or researchers, tradition or seminal studies amongst or across the three traditions identified.; Conclusions: The research findings reviewed suggests a gap has existed internationally over several decades between policy aspirations and service level interventions aimed at improving personalised care planning and coordination and the realities of everyday practices and experiences of service users and carers. Substantial barriers to involvement are created through poor information exchange and insufficient opportunities for care negotiation.
Social exclusion has a negative impact on quality of life. People living with dementia or mental health disorders as well as informal carers have been separately described as socially excluded. The objective of this systematic narrative review was to examine the extent to which social exclusion experienced by adult informal carers of people living with dementia or severe mental health disorders has been identified and described in research literature. It synthesised qualitative and quantitative evidence and included the perspectives of carers themselves and of professionals. Eight electronic databases (1997-2017) were searched. Five relevant studies published between 2010 and 2016 were identified. All were qualitative and used interviews and focus groups. Study quality was variable and most were European. Two focused on carers of people living with dementia and three on carers of people with mental health disorders. Four investigated carers' perspectives and experiences of social exclusion directly (total of 137 carer participants, predominantly parents, spouses and adult children), while the fifth focused on the perceptions of 65 participants working in health and social care. Stigma, financial difficulties and social isolation were highlighted in four studies and the challenges for carers in engaging in leisure activities were described in the fifth. Most conceptualised social exclusion as a form of stigma, or as resulting from stigma. One presented social exclusion as an element of carer burden. Two explicitly discussed the negative effects of social exclusion on carers. The dearth of research and the lack of specificity about social exclusion in carers was surprising. Future research should investigate aspects of social exclusion that may adversely affect carer wellbeing.;
Councils in England receive 1.8 million new requests for adult social care a year – the equivalent of nearly 5,000 a day – and despite some helpful extra funding there is still a £3.5 billion funding gap facing adult social care by 2025 just to maintain existing standards of care. Despite these tremendous pressures this publication demonstrates current examples of how councils support adult and young carers locally in a range of different ways from respite breaks to discount cards to tailored information and advice.
The following case studies show how local authorities are supporting carers across England. It identifies the challenges authorities face and how they address them, often in partnership. It highlights the impact of services and lessons learned that will be of interest to all councils. The case studies were compiled following discussions with the lead officers and members in the areas.
Background: Agitation is a common feature of bipolar disorder and schizophrenia. Previous research indicates that specific symptoms impact caregiver burden in these conditions, but the impact of agitation on caregiver experience is poorly understood. The aim of this study was to characterise caregiver burden in providers of informal care for patients with bipolar disorder and schizophrenia who experience agitation.; Methods: In total, 297 matched patient and caregiver surveys were collected across the UK, Germany and Spain between October 2016 and January 2017. To be eligible, caregivers needed to provide informal care to a patient with a diagnosis of bipolar disorder or schizophrenia with agitation managed in a community setting and participating in the patient survey. The caregiver survey captured information on demographics and their role in managing the patient's agitation. Caregiver burden was assessed using the Involvement Evaluation Questionnaire. Descriptive analysis was conducted.; Results: Caregivers provided 38.3 h (SD ± 40.34) a week of support to the patient with 20% providing 50 h or more. Most caregivers reported that they recognised an episode of agitation all of the time (44%, n = 130) or sometimes (40%, n = 119). Verbal de-escalation techniques (talking (80%, n = 239) and soothing (73%, n = 218) were the most commonly reported strategies used by caregivers during an episode of agitation; 14% (n = 43) reported resorting to physically restraining the patient. Caregivers supervised rescue medication administration regularly (41%, n = 69) or occasionally (49%, n = 82). Mean Involvement Evaluation Questionnaire score was 32.2 (± 15.27), equivalent to 28.4 (± 13.56) in Germany, 35.6 (± 16.55) in Spain and 33.3 (± 15.15) in the UK. Involvement Evaluation Questionnaire scores were higher for caregivers who reported hostile (41.7 ± 17.07) lack of control (40.3 ± 16.35) and violent (39.5 ± 16.40) patient behaviours when agitated. Over excitement (31.8 ± 15.05), restless (32.6 ± 14.77) and tense (32.9 ± 15.64) behaviours were associated with a lower Involvement Evaluation Questionnaire score.; Conclusions: Caregivers are active participants in the recognition and management of agitation episodes. The substantial burden reported by these caregivers is impacted by factors including the number of hours of care provided, patient behaviours and country. These may be viable targets for effective interventions to reduce caregiver burden.
Background: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.; Aim: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.; Methods: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.; Results: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.; Conclusions: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.
Caring for offspring diagnosed with eating disorders (EDs) puts caregivers under high levels of chronic stress, which have negative consequences for their health. Unfortunately, caregivers have received little attention from mental health professionals. Chronic stress experienced by informal caregivers has been associated with the alteration of body homeostasis, and therefore, the functioning of various physiological systems. This could be the basis of health problems in informal caregivers of people with EDs. The main objective of this study was to analyze physiological response, in terms of heart rate (HR) and heart rate variability (HRV), to an acute laboratory stressor in a sample of informal caregivers of individuals with anorexia nervosa (n = 24) compared to a sample of noncaregivers (n = 26). In addition, the relationship between depressive mood and the aforementioned cardiovascular response parameters was analyzed in the group of caregivers. Caregivers had higher high-frequency (HF) power HRV, and lower HR, low-frequency (LF) power HRV and LF/HF ratio values than noncaregivers, which suggests lower cardiovascular reactivity to the acute stressor than noncaregivers. Moreover, a blunted HR response to stress was associated with high depressive mood scores in caregivers. Hence, it seems that the worse the mood the lower the cardiovascular reactivity to stressful events in this population. Developing and implementing psychotherapeutic interventions focused on stress management would help caregivers to reduce their stress levels and cope more effectively with stressors.
Caregivers have to cope repeatedly with acute stressors in their daily lives, and this is associated with disturbances in the hypothalamic-pituitary-adrenal (HPA) axis and the immune system. Such disturbances could contribute to the development of health problems in informal caregivers of people with chronic illnesses, such as eating disorders (EDs). The main objective of this study was to examine endocrine (salivary cortisol levels (Csal)), immune (immunoglobulin-A (IgA)), and psychological (anxiety, mood, and anger feelings) responses to an acute psychological stressor in a sample of informal caregivers of individuals with EDs compared to a sample of non-caregivers. In addition, it also aimed to analyze the potential relationship of the aforementioned endocrine and immune response parameters with psychological variables in the caregivers. Caregivers had lower Csal and IgA levels at all assessment points except baseline. Moreover, they also exhibited lower Csal and IgA responses and greater worsening of mood in response to acute psychosocial stress than the non-caregivers, which suggests that caregivers had dampened endocrine and immune reactivity to acute stress. On the other hand, endocrine and immune parameters were unrelated to psychological variables. These findings advance our understanding of how a chronically stressed population reacts to acute stress, and should be considered for the development of effective interventions focused on stress management that could help caregivers to reduce their stress levels, which, in turn, would improve their health.
Aims In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. Methods Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. Results Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. Conclusions The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis.
Objective: Anxiety and depression are highly prevalent in patients with COPD and their informal carers, and associated with numerous risk factors. However, few studies have investigated these in primary care or the link between patient and carer anxiety and depression. We aimed to determine this association and factors associated with anxiety and depression in patients, carers, and both (dyads), in a population-based sample.; Materials and Methods: This was a prospective, cross-sectional study of 119 advanced COPD patients and their carers. Patient and carer scores ≥8 on the Hospital Anxiety and Depression Scale defined symptoms of anxiety and depression, χ2 tests determined associations between patient and carer symptoms of anxiety/depression, and χ2 and independent t-tests for normally distributed variables (otherwise Mann-Whitney U tests) were used to identify other variables significantly associated with these symptoms in the patient or carer. Patient-carer dyads were categorized into four groups relating to the presence of anxious/depressive symptoms in: both patient and carer, patient only, carer only, and neither. Factors associated with dyad symptoms of anxiety/depression were determined with χ2 tests and one-way analysis of variance for normally distributed variables (otherwise Kruskal-Wallis tests).; Results: Prevalence of symptoms of anxiety and depression was 46.4% (n=52) and 42.9% (n=48) in patients, and 46% (n=52) and 23% (n=26) in carers, respectively. Patient and carer symptoms of anxiety/depression were significantly associated. Anxious and depressive symptoms in the patient were also significantly associated with more physical comorbidities, more exacerbations, greater dyspnea, greater fatigue, poor mastery, and depressive symptoms with younger age. Symptoms of carer anxiety were significantly associated with being female and separated/divorced/widowed, and depressive symptoms with younger age, higher educational level, and more physical comorbidities, and symptoms of carer anxiety and depression with more unmet support needs, greater subjective caring burden, and poor patient mastery. Dyad symptoms of anxiety/depression were significantly associated with greater patient fatigue.; Conclusion: Symptoms of anxiety and depression in COPD patients and carers are significantly associated. Given their high prevalence, considerable impact on mortality, impact on quality of life and health care use, and associations with each other, screening for and addressing patient and carer anxiety and depression in advanced COPD is recommended.
Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers.; Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms.; Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households.; Results: The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (adjusted odds ratio (ORadj) = 0.93, 95% confidence interval (CI) 0.79, 1.10 and ORadj = 0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj = 0.65, 95% CI 0.53, 0.79).; Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents.
Background: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders.; Aim: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers' retrospective ratings of the quality of dying and death (QoDD) of their loved ones.; Design: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-Angehörige (QoDD-D-Ang) during the fourth week following the patient's death at the earliest. Depressive and panic disorders were assessed via the Patient Health Questionnaire (PHQ). Group comparisons (χ2, t test; significance level P < .05) analyzed whether informal caregivers with depression or panic disorders and those without such disorders differ in their estimates.; Results: A total of 226 informal caregivers participated between August 2012 and December 2013. The mean age of participants was 55.5 years; 61.1% were female. The PHQ of 221 participants resulted in 8.6% with major disorders, 13.6% with other depressive syndromes, and 77.8% without depressive disorders. In this secondary data analysis here, there was no difference between female and male participants concerning the incidence of depression ( P = .519, χ2). Two participants screened positive for both panic and major depressive disorders. Both groups presented no significant differences in the mean total QoDD-D-Ang scores ( P = .343).; Conclusion: Informal caregivers' estimates on the QoDD-D-Ang of their significant others do not interfere with mental disorders. Therefore, bereaved informal caregivers are able to participate in the PC research after a few weeks following the loss of a loved one.
Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.
The shift in care from long-term hospitalization of individuals with mental illness to the community places a greater onus of responsibility on informal caregivers. The purpose of the current study was to explore the lived experiences of long-term caregivers of individuals with unipolar depression. A qualitative phenomenological methodology was used and two sets of semi-structured interviews were conducted with nine informal caregivers. Data were transcribed following Giorgi's phenomenological method. The following three themes were identified: Flooded by Emotions, Personal Growth and Satisfaction, and Psychosocial Effects and Challenges. Caregivers described adapting by adjusting their behavior to avoid conflict with care recipients. These adjustments had a detrimental effect on their well-being, where they described that they were "existing but not living." These findings highlight the need for ongoing support, which should be tailored to the unique needs and concerns of individuals who are providing long-term care to individuals with depression.
Affiliated stigma often refers to internalized stigma among family members of stigmatized individuals. This study aimed to investigate the relationship between affiliate stigma and quality of life (QOL) among primary caregivers of individuals with mental illness undergoing treatment at the Institute of Mental Health, Singapore. Three hundred and fifty caregivers were recruited for the study. The World Health Organization Quality of Life questionnaire (WHOQOL-BREF) and Family Stigma Scale (FSS) were administered to the primary caregivers of patients with mental illness. Multiple linear regression analyses were conducted to investigate the association of affiliate stigma with QOL. A high proportion of caregivers of individuals with mental illness experience affiliate stigma in Singapore. All four QOL domains were significantly associated with affiliate stigma. These findings entail that it is imperative to improve public's perception of those with mental illness to reduce stigmatization and thus improve caregiver's QOL.
Background: The recent policy of deinstitutionalization of health care in Western countries has resulted in a growing number of people - including elderly - with severe mental illness living in the community where they rely on families and others for support in daily living. Caregiving for partners, parents, children, and significant others can be a stressful experience and has been associated with psychosocial problems and poorer physical health. To support caregivers, a new, complex, nurse-led caregiver - centered intervention was developed. The intervention focuses on preventing deterioration in the wellbeing of caregivers. The objective of this study is to obtain a better understanding of the potentials of this new intervention. Methods: We applied an interpretative qualitative field study at two Dutch mental health care institutes. Thirteen caregivers participated in a one-time semi-structured interview. Results: From the caregivers' perspective, a trusting relationship between caregivers and the mental health nurse is an essential condition for the depth and hence the effectiveness of the caregiver-centered counseling intervention. In this trusting relationship three overlapping and mutually reinforcing phases were identified (1) phase of engagement, (2) recognition of personal needs and (3) hope and optimism. Each phase encompasses key experiences that enhanced trust in that phase. Conclusions: Collaborative relationships between caregivers and mental health nurses provide a framework in which the mental health nurse can assess and help not only patients but also caregivers to gain insight into their situation and take on new roles and responsibilities in ways that promote their wellbeing.
Keshet, a course for family members of persons’ coping with mental illness, was developed to enhance positive family cognitive communication skills. Improving communication with the use of mediation techniques, primarily used by therapists, creates a learning environment viewed as a strategy of Knowledge Translation. To examine the effectiveness of Keshet in improving attitudes, problem solving, communication skills and attenuation of burden a quasi-experimental research design was applied with study and control condition. The same group of participants (N = 38) completed questionnaires at different stages: 3 months prior to course, initiation and completion. Following participation, significant changes were observed in attitudes regarding knowledge of how to cope and interact with family member. A correlation was found between improved knowledge and decline in burden. Implementing interventions which provide caregivers with professional “know-how” leads to lessened burden, thus contributing to maintaining well-being of family caregiver population.
Background: As with most of the chronic illnesses, the changes and consequences brought on by bipolar disorder (BD) are not exclusive to the patient and often spread to those around them, especially for direct caregivers of these patients. It is known that there is a significant emotional and physical toll among persons who coexist daily with those who suffer from this disorder. Objective: Aware of the importance of the role played by informal caregivers (especially the family) in the stability and evolution of patients with bipolar disorder, this study seeks to explore the perception that family members responsible for bipolar persons have of themselves as caregivers of these patients. Method: This is a qualitative study using a phenomenological design, for which the technique of focused or semi-structured interviews was employed. Ten caregivers of people with diagnosis of BD agreed to participate. Results: Within the family, it is a single individual who has the role of caregiver. Experiences and meanings that are generated into the nucleus of the patient–caregiver relationship are full of ambivalence and involve many aspects worthy of analysing, such as the development of identities, the feminization of patient care, the process of therapeutic decision-making and the evolution of the disease. Conclusions: It is necessary to integrate evaluation and attention for patients’ caregivers, recognizing them as individuals and elucidating their constructed meanings and the dynamics established in their relationship with patients. In this way, there would be a more integrative clinical approach of the patient–caregiver relationship, considering not only the necessary pharmacological treatments but also accompanying both patient and family, along the path they travel as they experience BD.
Background: Families living with a person with mental illness can experience distress requiring therapeutic interventions. Web-based mindfulness interventions have shown beneficial health outcomes for both clinical and healthy populations, and may help families cope and overcome barriers that can otherwise hinder a help-seeking process.; Aims: To develop and assess outcomes of a web-based mindfulness intervention for families living with a person with mental illness.; Methods: A pilot study investigating an 8-week web-based mindfulness intervention with a pre-post design and follow-up after 3 months, with mindfulness as the primary outcome and perceived stress, caregiver burden and self-compassion as secondary outcomes. The study included a sample of 97 persons approached by advertisement in newspapers, newsletters, and online.; Results: The study showed significant improvements in levels of mindfulness post-intervention and at follow-up as well as significant improvements in levels of perceived stress, caregiver burden, and self-compassion both post-intervention and at follow-up.; Discussion: Acceptability and feasibility of the intervention were high, outcomes were relevant, and the intervention showed positive and significant results supporting the hypothesis that the intervention may help families cope with a stressful situation.; Conclusion: Further randomized controlled studies of the intervention are needed to investigate the intervention's effectiveness, including dose-effect studies.;
Background: Almost 40 million family caregivers care for a loved one with severe physical or cognitive impairments. The purpose of this review is to summarize evidence about the benefits of interventions to support or involve family members/caregivers of patients with trauma-related injury on caregiver, patient, and household outcomes. Methods: English-language peer-reviewed publications in MEDLINE, CINAHL, and PsycINFO from 1995 through December 2016 were identified. Eligible studies included RCT or quasi-experimental studies evaluating interventions designed to support or involve caregivers or family members of patients with TBI, PTSD, or polytrauma. Abstractions were completed by one reviewer and checked by a second; two reviewers independently assessed risk of bias using the Cochrane Effective Practice and Organization of Care Review Criteria. Results: Thirteen studies (n = 9 TBI; n = 4 PTSD, n = 0 polytrauma) evaluated psychological or rehabilitation interventions involving caregivers. Interventions did not improve TBI patients' functional status (standardized mean difference [SMD], 0.29 [95% confidence interval [CI], - 0.51 to 1.08]) or psychological symptoms (SMD - 0.25, CI - 0.62 to 0.12). Qualitative analysis shows potential intervention benefit for TBI symptoms. Interventions did not improve TBI caregiver psychological symptoms (SMD - 0.26, CI - 0.57 to 0.05); however, qualitative analysis suggests mixed effects for caregiver burden and quality of life. Positive intervention effects on patients' PTSD symptoms, mental health service use, and PTSD caregivers' psychological symptoms were identified with certain interventions. Strength of evidence ranged from moderate to very low. Discussion: Studies showed mixed patterns of intervention effects on caregiver and patient outcomes; evidence about intervention impact is inconclusive. This review is the first to identify caregiving interventions for patients with TBI and polytrauma and extends past reviews about patients with PTSD. Limitations include a small evidence base, low study quality, disparate methods, varied outcome measures, and high heterogeneity. PROSPERO Registration CRD42017053516.
The VA Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides landmark support for family caregivers of post-9/11 veterans. This study examines PCAFC support for veterans with and without PTSD and assesses whether program effect differs by PTSD status using a pre-post, non-equivalent, propensity score weighted comparison group design (n = 24,280). Veterans with and without PTSD in PCAFC accessed more mental health, primary, and specialty care services than weighted comparisons. PCAFC participation had stronger effects on access to primary care for veterans with PTSD than for veterans without PTSD. For veterans with PTSD, PCAFC support might enhance health service use.
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.
Aims and objectives: To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness. Background: Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness. Design: An exploratory qualitative study. Methods: Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved. Results: Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources. Conclusion: Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles. Relevance to clinical practice: It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.
Basic knowledge regarding schizophrenia, having positive attitudes towards it, and possessing the necessary care skills are crucial aspects for caregivers have in order to provide sustainable care for a relative with schizophrenia. Coaching can facilitate successful caregiving through the understanding of a caregiver's knowledge, attitudes, and skills. This study examined the effectiveness of a coaching program in enhancing family caregivers' knowledge, attitudes, and skills related to caring for persons with schizophrenia. 100 primary family caregivers were randomly recruited. Of these, 50 participated in a coaching program, which lasted 7 weeks and employed implementation methods such as discussion, watching videos, providing information, training, observation, demonstration, role-plays, and telephone follow-ups. The coaching group participants showed significantly higher knowledge levels (F = 85.77, p < 0.001), lower levels of negative attitudes towards schizophrenia (F = 13.22, p < 0.001), and higher skill levels (F = 22.94, p < 0.001) than those in the routine care group. The results also discovered significant improvements in knowledge, attitudes, and caregiving skills on follow-ups at week 2 and 1 month after the completion of the program in the coaching group, as compared to those in the routine care group (p <0.001). The coaching program examined in this study clearly indicated positive effects on caregiver knowledge, attitudes, and caregiving skills when compared with routine care.
Background: Crisis resolution teams (CRTs) can provide effective home-based treatment for acute mental health crises, although critical ingredients of the model have not been clearly identified, and implementation has been inconsistent. In order to inform development of a more highly specified CRT model that meets service users' needs, this study used qualitative methods to investigate stakeholders' experiences and views of CRTs, and what is important in good quality home-based crisis care. Method: Semi-structured interviews and focus groups were conducted with service users (n = 41), carers (n = 20) and practitioners (CRT staff, managers and referrers; n = 147, 26 focus groups, 9 interviews) in 10 mental health catchment areas in England, and with international CRT developers (n = 11). Data were analysed using thematic analysis. Results: Three domains salient to views about optimal care were identified. 1. The organisation of CRT care: Providing a rapid initial responses, and frequent home visits from the same staff were seen as central to good care, particularly by service users and carers. Being accessible, reliable, and having some flexibility were also valued. Negative experiences of some referral pathways, and particularly lack of staff continuity were identified as problematic. 2. The content of CRT work: Emotional support was at the centre of service users' experiences. All stakeholder groups thought CRTs should involve the whole family, and offer a range of interventions. However, carers often feel excluded, and medication is often prioritised over other forms of support. 3. The role of CRTs within the care system: Gate-keeping admissions is seen as a key role for CRTs within the acute care system. Service users and carers report that recovery is quicker compared to in-patient care. Lack of knowledge and misunderstandings about CRTs among referrers are common. Overall, levels of stakeholder agreement about the critical ingredients of good crisis care were high, although aspects of this were not always seen as achievable. Conclusions: Stakeholders' views about optimal CRT care suggest that staff continuity, carer involvement, and emotional and practical support should be prioritised in service improvements and more clearly specified CRT models.
Aim: We aimed to systematically review the evidence of the effectiveness of family interventions for caregivers of people with recent‐onset psychosis compared with usual psychiatric care. A secondary objective was to directly compare the effects of different types of family interventions. Methods: MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL Complete and EBSCOhost were searched to identify relevant randomized controlled trials. Trial data were extracted following the procedures described in the Cochrane Handbook of systematic reviews. Random‐effects models were used to pool the intervention effects. Results: Twelve studies including 1644 participants were included in this review. With the exception of a high risk of performance bias inherent to the nature of the psychosocial interventions, the studies had an overall low or unclear risk of bias, suggesting that sources of bias are unlikely to lower confidence in the estimate of intervention effects. Meta‐analyses were conducted for 4 different participant outcomes reported in 9 studies. Compared with usual psychiatric care, family intervention was more effective in reducing care burden over all follow‐up periods. Family intervention was also superior to usual care with regards to caregiving experience in the short term and improved utilization of formal support and family functioning over longer‐term follow up. Mutual support is more effective than psychoeducation in improving family functioning when measured 1 to 2 years after the intervention but had equivalent effects on utilization of formal support services. Conclusions: This review provides evidence that family intervention is effective for caregivers of recent‐onset psychosis, especially for care burden where the positive effects are enhanced over time.
Family interventions have been emphasized in the treatment of bipolar disorder (BPD) due to the bidirectional and entangled relationships between patients and the family system, and have benefits for patients’ symptoms and health; however, the effects of family interventions on family function and caregivers’ health‐related outcomes have not been well investigated. This randomized, controlled trial with 47 hospitalized patients with BPD/family caregiver dyads at a medical centre in northern Taiwan compared the effects of a brief family‐centred care (BFCC) programme with treatment as usual (TAU). All of the family caregivers in two groups were invited to attend a routine 60‐min family discussion group about violence and suicide prevention. The TAU group without specific family interview for patient and family caregiver dyad. In the BFCC group, four 90‐min BFCC programme sessions were additionally provided twice a week for each hospitalized family dyad. We hypothesized that, first, family caregivers in the BFCC group could increase their family function, and second, improve perceived health status and reduce caregiver's burdens compared to the TAU. The results showed that family caregivers in the BFCC group significant interaction effects in overall family function (P = 0.03) and subscale conflict (P = 0.04), communication (P = 0.01), and problem‐solving (P = 0.04), but there were no significant interaction effects on the caregivers’ perceived health status and caregivers’ burdens. Our findings support both the feasibility of using the BFCC programme for inpatients and its specific benefits for family function. An intensive family intervention during hospitalization has been suggested in psychiatric practice to support patients with BPD and family caregivers.
There have been several violence-related deaths in Japan due to family violence by persons with severe mental illness against their caregivers. However, it is not often acknowledged that these violent acts are mainly directed at family members. This study aimed to clarify what acts of violence family caregivers experienced from their relative with schizophrenia, and how frequently these violent incidents occurred in their lifetime. We also examined caregivers’ thoughts of death about themselves and their relatives, as well as their consultation efforts and escape from the violence perpetrated by their relative. Of the 277 caregivers, 87.7% had experienced psychological violence and 75.8% had experienced physical violence perpetrated by their relative. Of 210 caregivers who had experienced physical violence, 26.7% had thought of murder-suicide and 31.0% had wished for their relative’s death. Family violence by persons with schizophrenia is not rare but a common occurrence in Japan and may have fatal consequences.
Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.
Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi‐structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with “psychosocial disability” in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery‐oriented respite services is highlighted.
Background: Carers are family members or friends who support people with a mental health problem without being paid. Carer involvement in mental health treatment has been consistently supported by research evidence and promoted by policies but its implementation rates are poor. Particularly when patients are treated in inpatient units, carers often report being left without information or being excluded from decisions about treatment. In this study we have explored, along with staff perspectives, views of patients and carers who had a recent experience of inpatient mental health care on how to improve the implementation of carer involvement in inpatient care. Methods: Sixteen focus groups were held with carers, patients and clinicians in London, United Kingdom. We included staff working in inpatient units and patients and carers who had experience of inpatient care in the last five years. Data from focus groups were analysed using thematic analysis. Results: Eighty six participants in total (31 service users, 22 carers and 33 clinicians) attended the focus groups. Participants identified that generally, carer involvement should happen as soon as possible after admission, although this may be challenging in some cases. Carer involvement should include receiving information, participating in decisions about care and discharge and receiving emotional support by staff. When carers are involved, their personal knowledge of the patient's condition should be utilised. Challenges to carer involvement may include problems with identifying carers during a mental health crisis, obtaining valid patient consent, sharing appropriate information, and contacting and engaging carers. Additionally, it was perceived that all the ward staff need to be actively engaged in order to make carer involvement happen and this cannot be left only to specifically trained clinicians. Conclusions: These findings identify basic components that all family interventions in inpatient units should have. Further studies are needed to explore how and if purposively designed clinical interventions can improve carer involvement in inpatient treatment and, consequently, patient outcomes.
The broad spectrum of problems caused by caring for a patient with mental illness imposes a high burden on family caregivers. This can affect how they cope with their mentally ill family members. Identifying caregivers' experiences of barriers to coping is necessary to develop a program to help them overcome these challenges. This qualitative content analysis study explored barriers impeding family caregivers' ability to cope with their relatives diagnosed with severe mental illness (defined here as schizophrenia, schizoaffective disorders, and bipolar affective disorders). Sixteen family caregivers were recruited using purposive sampling and interviewed using a semi-structured in-depth interview method. Data were analyzed by a conventional content analytic approach. Findings consisted of four major categories: the patient's isolation from everyday life, incomplete recovery, lack of support by the mental health care system, and stigmatization. Findings highlight the necessity of providing support for caregivers by the mental health care delivery service system.
Objectives: Available data suggest high burden on caregivers of patients with bipolar disorder (BD), yet the well-being of patients with BD increasingly depends on family members, partners and close friends. As patients with BD get older, the need for informal care may shift. We aimed to describe the caregivers of older adults with BD (OABD) and explore what patients' and caregivers' characteristics are associated with caregiver burden. Method: Forty-seven caregivers of OABD were questioned about their perceived burden and depressive symptoms. Linear regression analyses were performed to examine the influence of various patients' and caregivers' characteristics on caregiver burden or depression. Results: More than half of all caregivers experienced some degree of burden, and 6.4% reported depressive symptoms. The number of psychiatric admissions and social functioning were the only patients' characteristics associated with higher burden. Caregiver burden was significantly associated with caregiver's other obligations. None of the patient or caregiver characteristics was significantly associated with depression in caregivers of OABD. Conclusion: In OABD, even with few residual symptoms, more than half of all caregivers experience substantial burden. Future studies are needed to confirm if improving social functioning and preventing psychiatric hospitalizations decrease the burden on the caregivers of OABD.
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.
Background: In Turkey, individuals with schizophrenia usually live with their families. Therefore, families are main caregivers and face psychological, financial and social problems. Aim: The aim of this study is to understand the personal burdens and coping strategies, and social support affecting the families that provide care to the individuals with schizophrenia. Methods: In-depth interviews were conducted with 31 members of 12 families. Results: Four themes were formed: learning and accepting the disorder, caregiving, social dimensions and service dimensions. Families have a problem with accepting this order and caregiving affects their quality of life both financially and socially. As schizophrenia is one of the reasons for being isolated from community, families prefer hiding it. Although families are satisfied with community-based systems, they need long-term solution, training and financial aid. Conclusions: To reduce the burden, family therapies, education and psychological support should be provided for families, and job opportunities, long-term caregiving services and psychological support should be provided for individuals with schizophrenia.
Aims and Objectives: To examine the relationship between psychiatric patients' caregiver burden and anger expression styles.; Background: In the caregiving process, when coping with problems, caregivers may exhibit emotional and behavioural responses, which can produce distressful results. One of these responses is angry. Examining the relationship between psychiatric patients' caregiver burden and caregivers' anger expression styles is necessary for quality of care.; Design: A descriptive and relational study.; Methods: The sample for study included 60 family caregivers who were stayed with patient in psychiatry clinic during the treatment of inpatient setting of a university hospital. Data for the study were collected using the Caregiver Burden Inventory and the Trait Anger and Anger Expression Scale. The analysis of variance, Mann-Whitney U test, Kruskal-Wallis and Pearson correlation analysis were used.; Results: The caregivers' Caregiver Burden Inventory score was found to be 24.60 ± 1.57. Gender, working status, level of intimacy with patient, status of whether or not caregiver was living with patient and status of whether or not caregiver experienced difficulties in providing care had a significant effect on the Caregiver Burden Inventory scale as a whole, as well as its subscales. This study found a positive relationship between caregiver burden and caregivers' anger expression styles (p < .05, p < .01).; Conclusion: The total Caregiver Burden Inventory mean score of caregivers was concluded to be low, with some introductory characteristics and anger expression styles having an impact on the burden experienced by caregivers.; Relevance To Clinical Practice: Knowing the anger expression styles of caregivers is important for reducing caregiver burden and improving quality of care.; © 2017 John Wiley & Sons Ltd.
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.;
Purpose: Aim of the study is to evaluate the predictive power of Expressed Emotion in Schizophrenia relapse in Pakistan. Method: A longitudinal study was conducted comprising 53 in-patients' sample diagnosed with Schizophrenia and their 101 key carers. Participants fulfilled DSM-IV-TR criteria for Schizophrenia based on Structural Clinical Interview for the DSM-IV diagnosis. Symptomatic status was measured through Brief Psychiatric Rating Scales-Expanded (BPRS-E). Caregivers' level of EE was assessed through Camberwell Family Interview (CFI). Patients were followed up for 9 months after hospital discharge.Results: Relapse rate for patients with high-EE household was 72% as compared with 36% in the low-EE household. Logistic Regression showed a positive relationship between high-EE and relapse (CI 0.06-0.80; p < 0.05). Both hostility and critical comments emerged as significant predictors of relapse. The odds ratio showed that a one unit increase in caregivers' score on the CCs and hostility scales were associated with a 1.29 (CI 1.06-1.56; p < 0.05) and 1.89 (CI 1.14-3.13; p < 0.05) times increased rate of relapse, respectively. Conversely, a non-significant relationship was observed between EOI and relapse. Conclusions: The findings from this study confirmed the validity of EE construct in predicting schizophrenia relapse in a Pakistani sample. However, medication compliance has not been experimentally controlled and that is one of the limitations of the study
Background: Caring for a person with first episode psychosis (FEP) is a challenging and distressing task for the carers. The carers' stress in the early stage of psychosis can increase their expressed emotion (EE) while social support is hypothesized to decrease EE. However, the influence of stress and social support on carers' EE is not well understood in FEP.; Aim: To examine how the stress and social support shape expressed emotion in the carers of FEP.; Methods: Seventy one carers of the patients with non-affective FEP were recruited from the inpatient psychiatry ward of a tertiary mental health care center in South India. The family questionnaire, perceived stress scale and multidimensional scale of perceived social support were used to measure their EE, stress and social support respectively.; Results: Carers experienced high level of perceived stress, EE and poor social support. Perceived stress significantly increased EE (β=0.834; p<0.001) and social support did not significantly influence EE (β=-0.065; p>0.05). Perceived stress predicted 76 percent of the variance on EE (Adjusted R2=0.761).; Conclusion: The results emphasize high level of stress and EE in carers of patients with FEP that implies the need for appropriate psychosocial interventions to manage their stress.; Copyright © 2016 Elsevier B.V. All rights reserved.
Background: There is an expectation in current heath care policy that family carers are involved in service delivery. This is also the case with compulsory outpatient mental health care, Community Treatment Orders (CTOs) that were introduced in England in 2008. No study has systematically investigated family involvement through the CTO process.; Method: We conducted qualitative interviews with 24 family carers to ascertain their views and experiences of involvement in CTOs. The transcripts were subjected to thematic analysis that incorporated both deductive and inductive elements.; Results: We found significant variation in both the type and extent of family carer involvement throughout the CTO process (initiation, recall to hospital, renewal, tribunal hearings, discharge). Some were satisfied with their level of involvement while others felt (at least partly) excluded or that they wanted to be more involved. Some wanted less involvement than what they had. From the interviews we identified key factors shaping carers' involvement. These included: perceptions of patient preference; concern over the relationship to the patient; carers' knowledge of the CTO and of the potential for carer involvement; access to and relationships with health professionals; issues of patient confidentiality; opportunities for private discussions, and; health professionals limiting involvement. These factors show that health professionals have many opportunities to facilitate, or hinder, carer involvement. The various roles attributed to carers, such 'proxy' for patient decision, 'gatekeeper' to services, 'mother' or 'expert carer', however, conflict with one another and make the overall role unclear.; Conclusions: There is a need for clarification of the expectations of carers in individual care situations, for carers to be equipped with the information they need to in order to be involved, and for services to find flexible and innovative ways of ensuring continuous, open communication. The introduction of CTOs in England has not been successful in its ambition for carer involvement.
Background: Low and middle income countries face many challenges in meeting their populations' mental health care needs. Though family caregiving is crucial to the management of severe mental health disabilities, such as schizophrenia, the economic costs borne by family caregivers often go unnoticed. In this study, we estimated the household economic costs of schizophrenia and quality of life of family caregivers in Ghana.; Methods: We used a cost of illness analysis approach. Quality of life (QoL) was assessed using the abridged WHO Quality of Life (WHOQOL-BREF) tool. Cross-sectional data were collected from 442 caregivers of patients diagnosed with schizophrenia at least six months prior to the study and who received consultation in any of the three psychiatric hospitals in Ghana. Economic costs were categorized as direct costs (including medical and non-medical costs of seeking care), indirect costs (productivity losses to caregivers) and intangible costs (non-monetary costs such as stigma and pain). Direct costs included costs of medical supplies, consultations, and travel. Indirect costs were estimated as value of productive time lost (in hours) to primary caregivers. Intangible costs were assessed using the Zarit Burden Interview (ZBI). We employed multiple regression models to assess the covariates of costs, caregiver burden, and QoL.; Results: Total monthly cost to caregivers was US$ 273.28, on average. Key drivers of direct costs were medications (50%) and transportation (27%). Direct costs per caregiver represented 31% of the reported monthly earnings. Mean caregiver burden (measured by the ZBI) was 16.95 on a scale of 0-48, with 49% of caregivers reporting high burden. Mean QoL of caregivers was 28.2 (range: 19.6-34.8) out of 100. Better educated caregivers reported lower indirect costs and better QoL. Caregivers with higher severity of depression, anxiety and stress reported higher caregiver burden and lower QoL. Males reported better QoL.; Conclusions: These findings highlight the high household burden of caregiving for people living with schizophrenia in low income settings. Results underscore the need for policies and programs to support caregivers.
Family and informal caregivers provide a substantial amount of care and support to people who experience mental health problems. The aim of this study was to explore mental health nurses', students' and service users' perceptions of the knowledge, skills and attitudes that are required by mental health nurses to work with families and carers using a qualitative methodology. Three themes emerged from the data: Knowledge of the family and how mental distress affects the family; working with the family – support and education; and valuing the role of the family. The three themes demonstrate the complexity of preparing mental health nurses to work with families and carers, and the article offers recommendations about how this might be achieved.
Aims and Objectives: To examine influencing factors of health-related quality of life in primary family caregivers of people with schizophrenia receiving inpatient psychiatric rehabilitation services.; Background: Families, particularly primary family caregivers, have become more important than ever in mental health care. Yet, research on health-related quality of life among primarily family caregivers is limited.; Design: A correlational study design was used.; Methods: A convenience sample of 122 primary family caregivers participated in the study. Data were analysed with descriptive statistics, Pearson's product-moment correlation, t test, one-way analysis of variance and a hierarchical multiple regression analysis.; Results: Primary family caregivers who were parents, older, less educated, and had a lower monthly household income, increased affiliate stigma and decreased quality of family-centred care experienced poor health-related quality of life. Particularly, monthly household income, affiliate stigma and quality of family-centred care appeared to be the most critical determinants of health-related quality of life.; Conclusions: Efforts to enhance satisfaction of life should focus on reducing affiliate stigma as well as increasing monthly household income and strengthening the quality of family-centred care.; Relevance To Clinical Practice: Findings may assist in the development of culturally integrated rehabilitation programmes to decrease affiliate stigma and increase family engagement as a means of promoting quality of life for primary family caregivers living with people who have schizophrenia.; © 2017 John Wiley & Sons Ltd.
Background: Mental illness is a disease that affects millions of people every year. It not only causes stress to the mentally ill patients, but also for the family members who provide them the care. The family caregivers, therefore need some form of coping strategies in dealing with their mentally ill family members.; Aims: This qualitative study aims at identifying and analysing the coping strategies adopted by the family caregivers in dealing with their mentally ill family members.; Method: A total of 15 family caregivers from the state of Kedah, Malaysia participated in the face-to-face semi structured interview.; Results: The study findings identified an array of coping strategies used by the family caregivers, including religious coping, emotional coping, acceptance, becoming engaged in leisure activities, and the use of traditional healing to help them cope with their mentally ill members. Suggestions and conclusions: Study suggests that the family caregivers should engage themselves in social support groups to learn about and obtain the positive coping strategies used by other caregivers who have similar experiences in caring for the mentally ill. Study also suggests that they should get appropriate training from the mental health professionals in order to enhance the caregivers' coping skills.
People with a mental illness experience greater chronic disease morbidity and mortality, and associated reduced life expectancy, compared to those without such an illness. A higher prevalence of chronic disease risk behaviours (inadequate nutrition, inadequate physical activity, tobacco smoking, and harmful alcohol consumption) is experienced by this population. Family carers have the potential to support change in such behaviours among those they care for with a mental illness. This study aimed to explore family carers’: 1) experiences in addressing the chronic disease risk behaviours of their family members; 2) existing barriers to addressing such behaviours; and 3) perceptions of potential strategies to assist them to provide risk behaviour change support.
A qualitative study of four focus groups (n = 31), using a semi-structured interview schedule, was conducted with carers of people with a mental illness in New South Wales, Australia from January 2015 to February 2016. An inductive thematic analysis was employed to explore the experience of carers in addressing the chronic disease risk behaviours.
Two main themes were identified in family carers’ report of their experiences: firstly, that health behaviours were salient concerns for carers and that they were engaged in providing support, and secondly that they perceived a bidirectional relationship between health behaviours and mental well-being. Key barriers to addressing behaviours were: a need to attend to carers’ own well-being; defensiveness on behalf of the family member; and not residing with their family member; with other behaviour-specific barriers also identified. Discussion around strategies which would assist carers in providing support for health risk behaviours identified a need for improved communication and collaboration between carers and health services accessed by their family members.
Additional support from general and mental health services accessed by family members is desired to assist carers to address the barriers to providing behaviour change support. Carers have the potential to support and extend health service interventions aimed at improving the chronic disease risk behaviours of people with a mental illness but may require additional information, and collaboration from services. Further research is needed to explore these constructs in a large representative sample
The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children - known as 'young carers' - will be providing regular and significant care, either episodically or over many years, often 'hidden' to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country?s awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors? extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.
An integrative review was conducted to evaluate and synthesize the current state of knowledge of family carers’ experiences of emergency psychiatric crises of an adult relative. A literature review was performed by searching key terms in EBSCO (CINAHL, Criminal Justice Abstracts, Social Work Abstracts), and Proquest (MEDLINE, PsycINFO) citation databases; 3,350 citations were retrieved and screened for inclusion. Data synthesis of 25 articles meeting inclusion criteria revealed the following five themes: building to crisis; conflicted emotional experience; police apprehension; invisible experts; and “need to know.” Findings provide essential insight into family carers experiences and needs during crisis that is informative for emergency mental health response practices.
The current study aimed to measure the stress levels of family caregivers of individuals with mental illness and compare their stress levels according to the diagnosis and other sociodemographic characteristics. The sample comprised 310 family caregivers of individuals with mental illness in Jordan. Family caregivers completed a demographic checklist and the Arabic version of the Perceived Stress Scale 10-Item (PSS-10) questionnaire. A significant difference was found in PSS-10 levels among family caregivers according to gender, diagnosis of their family member, and time since diagnosis. Female caregivers reported significantly higher stress levels than male caregivers. Family members of individuals with schizophrenia reported the highest stress levels (p < 0.001). Results also indicated that there was a significant negative correlation between PSS-10 levels of family caregivers and time since diagnosis. Investigating stress levels in family members of individuals with mental illness may be helpful when designing interventions to reduce such stress. [Journal of Psychosocial Nursing and Mental Health Services, 55(6), 30-35.].; Copyright 2017, SLACK Incorporated.
Background: This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia.; Methods: A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses.; Results: The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms of depression whilst those who cared for their son/daughter were less likely to be associated with symptoms of depression. Primary caregivers who had lower education, were living with others, were single or divorced/separated, were unemployed and with higher FIS scores were associated with lower QOL domain scores. Those with symptoms of depression were significantly associated with low QOL across all four domains, whilst those with symptoms of anxiety were significantly associated with low QOL in the social relationships domain.; Conclusion: Psychological status of caregivers in the current study was associated with the various domains of QOL. In particular, caregivers' symptoms of depression were significantly associated with lower QOL across all four domains of QOL whereas symptoms of anxiety were associated with lower scores in the social relationships domain. The study suggests a need to provide caregivers with social support and psycho-education to improve the QOL as well as aid in developing healthy coping strategies.
Background/Objective: The Devaluation of Consumer Families Scale (DCFS) is commonly used to measure perceived stigma towards family members of people with mental illness. However, its factorial structure has never been confirmed using confirmatory factor analysis (CFA). This study aimed to test the psychometric properties of the DCFS Taiwan version (DCFS-TW). Method: Family caregivers (N=511) completed the DCFS-TW (97 completed the DCFS again after 2 to 4 weeks) and other instruments. CFA, test-retest reliability, internal consistency, concurrent validity, and known-group validity were analyzed. Results: The three-factor structure of the DCFS-TW performed better than the one-factor structure. Test-retest reliability (r = .66) and internal consistency were satisfactory (α = .85); concurrent validity (absolute r = .20 to .58) was acceptable; known-group validity was supported by the significantly different DCFS-TW scores in clinical characteristics (had been vs. had not been hospitalized; had been vs. had not been compulsorily admitted). Conclusions: The DCFS-TW has decent psychometric properties and is suitable for health professionals to measure perceived stigma towards family members of people with mental illness. (English
Background: Although the quality of life (QoL) experienced by patients with schizophrenia has been recognized, few studies have assessed the relationship between the caregivers' QoL and patients' QoL.; Methods: The study included 253 stabilized outpatients with schizophrenia and their caregivers from 3 Mental Health Services in Bolivia (N = 83), Chile (N = 85) and Peru (N = 85). Caregivers' and patients' QoL were respectively assessed using two specific QoL questionnaires (S-CGQoL and S-QoL 18). We collected socio-demographic information and clinical data. Multiple linear regressions were performed to determine which variables were associated with patient's QoL. We tested the following hypothesis using structural equation modeling (SEM): caregivers' QoL may have an indirect effect on patients' QoL mediated by their influence of the severity of psychotic symptoms.; Results: In the multivariate analysis, the caregivers' QoL was not significantly associated with the patients' QoL, except for one QoL dimension about relationship with family (Beta = 0.23). Among patients' characteristics, being a woman and Aymara, having lower educational level, unemployment and severity of symptoms was significantly associated to a lower QoL. The SEM revealed a moderate significant association between caregivers' QoL and psychotic symptoms severity (path coefficient = -0.32) and a significant association between psychotic symptoms severity and patients QoL (path coefficient = -0.40). The indirect effect of caregivers' QoL on patients' QoL was significant (mediated effect coefficient = 0.13).; Conclusion: Improvement of caregiver's QoL may have a direct impact on the psychotic symptoms of patients and indirectly on patient's QoL, confirming the need for ongoing family interventions in these regions.;
Family interventions in chronic psychosis are well established through systematic reviews and meta-analyses. Such reviews report that family intervention might reduce relapse and improve compliance with medication and reduction in levels of expressed emotion (EE). However, most of the previous research has been conducted in caregivers with chronic schizophrenia, and the effects of family interventions in the early stages are largely unknown. Using a quasi-experimental nonequivalent comparison group design, we evaluated the effectiveness of a 7-session group intervention among 59 caregivers of patients with first episode psychosis. Outcome variables measured were carers’ EE and social support. Carers were recruited from inpatient psychiatry units of a tertiary mental health center in South India. Follow-up assessments were carried out after one and three months of intervention. Descriptive and inferential statistics were applied to the data. Carers in the intervention group reported reduction of EE and improvements in social support at a one-month follow-up assessment. However, these benefits were not sustained at the three-month follow-up. Overall, both groups showed significant changes in all outcome variables over the time period.
Psycho education to family members has been emerged as an important prerequisite to modern psychiatric treatment and rehabilitation, since through psycho education many problematic areas related to patient care and compliance with the treatment can be successfully addressed. Being an indispensable adjunct to modern psychiatric treatment it is more efficacious in targeting all areas of patient's illness and functionality quite suitably than any single therapy based approach. Effects of bipolar disorder can be far-reaching, both into the lives of patients and those around them. Severe cognitive, emotional and behavioural dysfunctioning related to illness lead to burden, expressed emotion, life stress, avoidance coping, decreased quality of life and lesser social support in family members of patients because of their inability in understanding the meaning of psychiatric and neurological symptoms. Primary caregiver plays multiple role in care of the ill persons, not only they take day-to-day care of the patient, supervise medications, take the patient to the hospital and look after the financial needs but also they have to bear with the behavioral disturbances in the patient. Experiencing considerable stress and burden they might develop an unhealthy coping style which may adversely affect the caregiving function and their own health. Interventions techniques have proven efficacy in reducing relapse rates and negative impact of symptoms on caregivers and can diminish negative attitudes and increase the willingness in the caregivers in providing care to patients. Through intervention caregivers are imparted knowledge about illness, its course, etiology, warning signs and various ways of managing the patient during distress and dysfunctioning. Psychoeducational training is a way of offering help for caregivers, representing a forum for knowledge sharing, and in which the primary focus is on psychological themes aimed at carers developing coping skills and strategies. It helps caregivers to become skilled in closer monitoring of disease treatment and symptoms which can have major implication in the evolution of the disease over the long term. The goals of these efforts are educational, prevention and to promote psychological health among caregivers as well as the patients.
Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.
Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder., Across the studies, there were many themes of unmet need for carers., Siblings have often been overlooked by both clinicians and researchers., Interventions for people with eating disorders should also acknowledge carers and close family members.
The family caregivers of people with mental illness may internalize the public stereotypes into the affiliate stigma (i.e., the self-stigma of family members). This study aimed to compare the affiliate stigma across schizophrenia, bipolar disorder, and major depressive disorder, and to investigate potential factors associated with affiliate stigma. Each caregiver of family members with schizophrenia (n = 215), bipolar disorder (n = 85), and major depressive disorder (n = 159) completed the Affiliate Stigma Scale, Rosenberg Self-Esteem Scale, Caregiver Burden Inventory, Taiwanese Depression Questionnaire, and Beck Anxiety Inventory. After controlling for potential confounders, the hierarchical regression models showed that caregivers of a family member with schizophrenia had a higher level of affiliate stigma than those of bipolar disorder (β = -0.109; p < 0.05) and major depressive disorder (β = -0.230; p < 0.001). Self-esteem, developmental burden, and emotional burden were significant factors for affiliate stigma. The affiliate stigma of caregivers is associated with their self-esteem, caregiver burden, and by the diagnosis.
Background A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long-term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes; however, there has been little research to evaluate how routinely family is invited to participate in SDM, or what this looks like in practice. Objective This UK study aimed to better understand how the family caregivers of those diagnosed with SMI are currently involved in decision making, particularly decisions about treatment options including prescribed medication. Objectives were to Explore the extent to which family members wish to be involved in decisions about prescribed medication, Determine how and when professionals engage family in these decisions, Identify barriers and facilitators associated with the engagement of family in decisions about treatment., Participants Open-ended questions were sent to professionals and family members to elicit written responses. Qualitative responses were analysed thematically. Results Themes included the definition of involvement and 'rules of engagement.' Staff members are gatekeepers for family involvement, and the process is not democratic. Family and staff ascribe practical, rather than recovery-oriented roles to family, with pre-occupation around notions of adherence. Conclusions Staff members need support, training and education to apply SDM. Time to exchange information is vital but practically difficult. Negotiated teams, comprising of staff, service users, family, peers as applicable, with ascribed roles and responsibilities could support SDM.
The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.
Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties. Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness. Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures. Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.
This article draws on research with children who provide care for parents with serious mental health problems and signals ongoing research that uses photographic participation methods with these groups of vulnerable children. The intention of this article is to highlight the need to move away from popular and simplistic representations of children with caring responsibilities (young carers) as victims of their parents’ illnesses, as ‘little angels’ whose caring work is condoned through rewards or as (exploited) informal domestic workers whose childhoods are inevitably compromised by the caring activity they undertake. Recommendations are made for generating deeper understanding about the lives and needs of children who are affected by parental impairment that is congruent with the thrust of current UK policy, Every Child Matters and the 2004 Children Act.
Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.
This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.
Background: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia.
Methods: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis.
Results: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers.
Conclusion: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.
Background: Recent government policy has highlighted the needs of family and friends who provide support to mental health service users. Carers of assertive outreach (AO) service users may be particularly in need of support. However, little is known about their experiences and how services can support them. Aim: To explore the experiences of carers of individuals receiving an AO service. Method: Ten participants were interviewed using a semi-structured interview schedule. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results: Participants were positive about the service they and their relatives received from AO teams. They described the service as flexible and responsive to their needs and they had developed close collaborative relationships with AO workers. AO workers were considered by carers to be an extension of their family system. AO interventions helped their relatives to regain independence and enabled participants to feel less burdened by their caring role, thereby improving the carer's quality of life. Conclusions: The unique way in which AO teams engage and work alongside service users and their families is greatly valued by carers.
Objectives: Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role.
Methods: A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did.
Results: In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics.
Conclusion: Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.
In November 2009 important changes to the Direct Payments scheme were introduced. New regulations extend the scheme to people who lack the capacity to consent, and to people with mental health problems who are subject to mental health and certain criminal justice legislation. Guidance for councils on direct payments has been updated to reflect these changes. This leaflet sets out these changes and explains where to find more information.
Purpose. About 30% of the people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid care givers. This study focusses on the care givers for 530 more disabled people with MS, with the objective of learning more about informal care giving to people with greater dependency and need for assistance.
Method. The data presented in this study were collected in a national survey of 530 people who provided informal care to more disabled people with MS.
Results. Almost half of these care givers reported that they provided more than 20 h of care per week to the person with MS, with more than 9 in 10 shopping for groceries, doing indoor housework, preparing meals or providing transportation for the person with MS. More than 4 in 10 employed care givers reduced the amount of time worked in the previous 12 months because of their care giving responsibilities. Although more than half of the MS care givers in our study reported that care giving was demanding, time consuming or challenging, about 90% of these MS care givers were happy that they could help. About two in three of these MS care givers found that care giving was rewarding, with more than 8 in 10 proud of the care they provided.
Conclusions. More than a quarter of the informal care givers to people with MS thought they would benefit from treatment or counselling provided by mental health professionals. Not only it is necessary to provide access to mental health services for people with MS, but it is also important to assure that their informal care givers also have access to appropriate mental health care, given the scope of their care giving responsibilities.
Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.
The author, from the organisation Rethink, gives his personal views on the current state of the mental health services; what users and carers would like their experience of mental health services to be; and the key areas to tackle in order to improve services.
Often the needs of carers of people with dual diagnosis are ignored when they too may be doubly isolated and unsupported. Reports on a pilot two-day training workshop for carers in Camden and Islington Mental Health and Social Care NHS Trust, based on training provided for the trust's community and inpatient mental health staff. Discusses what both staff and carers found useful about the workshops.
"Together for mental health" is our ambitious strategy aiming to improve the mental health of the people of Wales and setting out our vision for 21st century mental health services. It is our first mental health strategy to cover all ages and centres on the 6 high level outcomes set out below:
a. The mental health and well-being of the whole population is improved.
b. The impact of mental health problems and/or mental illness on individuals of all ages, their families and carers, communities and the economy more widely, is better recognised and reduced.
c. Inequalities, stigma and discrimination suffered by people experiencing mental health problems and mental illness are reduced.
d. Individuals have a better experience of the support and treatment they receive and have an increased feeling of input and control over related decisions.
e. Access to, and the quality of preventative measures, early intervention and treatment services are improved and more people recover as a result.
f. The values, attitudes and skills of those treating or supporting individuals of all ages with mental health problems or mental illness are improved.
This is the second annual report on the implementation of the Welsh Government mental health strategy.
This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only.
Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.
Original document (pdf) on Welsh Government website.
Informal caring is of significant and increasing importance in the context of an ageing population, growing pressures on public finances, and increasing life expectancy at older ages. A growing body of research has examined the characteristics associated with informal care provision, as well as the impact of caring for the carer's physical and mental health, and their economic activity. However, only a relatively small body of literature has focused on the study of ‘repeat’ or continuous caring over time, and the factors associated with such trajectories. In 2001, for the first time, the United Kingdom census asked about provision of informal care, enabling identification of the prevalence of informal caregiving at a national level. This paper follows up informal carers from the 2001 Census in order to examine their characteristics and circumstances 10 years later using a nationally representative 1% sample of linked census data for England and Wales, the Office for National Statistics Longitudinal Study. The analysis classifies the range of possible combinations of caring and non-caring roles between 2001 and 2011, focusing on the characteristics of those who were providing care at one, or both, time points. Among other results, the analysis identified that, among those who were carers in 2001, caring again in, or continuing to care until, 2011 was associated with being female, aged between 45 and 54 years in 2011, looking after the home, and providing care for 50 hours or more per week in 2001. Such results contribute to our understanding of a particular group of informal carers and provide a more nuanced picture of informal care provision at different stages of the life course.
Contributors to this DVD talk from personal experience about the social impacts of living with a mental illness, including stigma and discrimination. Content includes the experiences of two carers and two people who have had experience of mental health problems. In addition, Professor Graham Thornicroft talks about the recent research evidence in nine key areas. Additional clips of other people's experiences also add to the evidence in these nine areas.
Little research has examined how, or if, involuntary commitment has impacted on the burden experienced by the family. This paper reports a qualitative study which explored how involuntary commitment under the Mental Health Act (MHA) 2000 in Queensland, Australia impacted on families of people with mental illness. Family members of a person with a mental illness, under involuntary commitment at the time or in the previous 12 months, participated in focus groups. Thematic analysis was used to determine the themes. It was apparent from the views of the family that the use of the involuntary commitment was influenced greatly by the pressures experienced by the mental health services (MHS). The MHA did little to assist the family in gaining access to MHS. It was not until after the family made repeated attempts that they were taken seriously. Often the family had few options other than to use deceit and threats to obtain the necessary treatment required. In view of this, the inherit nature of what involuntary commitment implies for persons under it, such as refusing treatment and management difficulties, indicates the family with such an individual experience more hardship in trying to obtain assistance for that person. Thus, the MHA in Queensland has not met its goals of increasing access to MHS. Family members perceive that they were not being listened to and their concerns were not acted upon. The current culture of the MHS appears to serve, to a large degree, to estrange the family from the consumer making relationships difficult and time-consuming to repair. The mental health profession is urged to consider the culture within their workplace and move towards constructive involvement of the family.
This paper reports on a research study which explored the worries and problems of young carers in Edinburgh. Sixty-one young carers took part in the study, conducted between April and June 2002. Findings indicate that young carers identify significant worries and problems in relation to their well-being, and that these come over and above any 'normal' adolescent difficulties. It is suggested that these findings may have important implications for young carers' mental health, now and in the future, and contain important lessons for child and family social work in general.
Background: In the primary care setting, dementia is often diagnosed relatively late in the disease process. Case finding and proactive collaborative care may have beneficial effects on both patient and informal caregiver by clarifying the cause of cognitive decline and changed behaviour and by enabling support, care planning and access to services. We aim to improve the recognition and diagnosis of individuals with dementia in general practice. In addition to this diagnostic aim, the effects of case finding and subsequent care on the mental health of individuals with dementia and the mental health of their informal carers are explored.
Methods and design: Design: cluster randomised controlled trial with process evaluation.
Participants: 162 individuals ≥ 65 years, in 15 primary care practices, in whom GPs suspect cognitive impairment, but without a dementia diagnosis.
Intervention; case finding and collaborative care: 2 trained practice nurses (PNs) invite all patients with suspected cognitive impairment for a brief functional and cognitive screening. If the cognitive tests are supportive of cognitive impairment, individuals are referred to their GP for further evaluation. If dementia is diagnosed, a comprehensive geriatric assessment takes place to identify other relevant geriatric problems that need to be addressed. Furthermore, the team of GP and PN provide information and support.
Control: GPs provide care and diagnosis as usual.
Main study parameters: after 12 months both groups are compared on: 1) incident dementia (and MCI) diagnoses and 2) patient and caregiver quality of life (QoL-AD; EQ5D) and mental health (MH5; GHQ 12) and caregiver competence to care (SSCQ). The process evaluation concerns facilitating and impeding factors to the implementation of this intervention. These factors are assessed on the care provider level, the care recipient level and on the organisational level.
Discussion: This study will provide insight into the diagnostic yield and the clinical effects of case finding and collaborative care for individuals with suspected cognitive impairment, compared to usual care. A process evaluation will give insight into the feasibility of this intervention. The first results are expected in the course of 2013.
Trial registration: NTR3389
The aim of this report is to provide a scoping review of evaluation studies of interventions and serv ices to support carers of people with m ental health problem s, to discuss issues relating to the effectiveness and cost - effectiveness of interventions, and to provide insights into areas where there are gaps in knowledge. The report is accom panied by a second report, the Consultation Report, that docum ents a consultation exercise held with key stakeholders, including ‘key informant’ carers. A third report, the Overview Report, draws together the em erging them es and issues, and advises on what further researc h and development work should be funded in this area.
Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.
Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.
Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.
Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.
Person centred care means listening to people to find out what is most important to them and without making assumptions. Care is holistic, and centres on the whole person: who they are, their life before, and how they currently feel. The emphasis is on what the person can, rather than cannot do. This video shows health and social care professionals working directly with individuals and their carers. There are no actors, and no prepared scripts. The film shows what a difference a person centred approach makes to individuals with many/complex needs. It links the Single Assessment Process (SAP), as the person centred health and social care framework, with other Department of Health policies e.g. long term conditions with its emphasis on case management. It outlines key principles of person centred care that are evolving, including holistic assessment, personalised care plans, sharing information, continuity and coordination, and self care/self management. A feature of the film is to hear the views of the individuals and carers themselves in 3 Case Studies with a Social Worker, Community Matron and a Community Mental Health Nurse.
The Adults with Incapacity (Scotland) Act 2000 was introduced to protect individuals with incapacity and to support their families and carers in managing and safeguarding the individuals’ welfare and finances. The Executive commissioned a two-year project to monitor how the Act was working. The results were positive, but showed that some changes could be made to streamline procedures and enable more adults and their carers to benefit from the Act. This revised edition of the code of practice for continuing and welfare attorneys takes account of changes to the Act that were introduced in part 2 of the Adult Support and Protection (Scotland) Act 2007. This code is for anyone appointed as an attorney under the Act, that is, as continuing and/or welfare power of attorney. The code applies equally to a lay person and to a professional continuing attorney such as a solicitor or accountant. It contains the following sections: about the act; creating a power of attorney; exercising powers of attorney (continuing and welfare); Specific guidance on exercising welfare powers of attorney;Stopping being an attorney; and Pre-act attorneys and attorneys under the law of another country.
Details of service receipt by 132 people diagnosed with dementia and their carers were collected in South London (boroughs of Lewisham, Camberwell, Southwark and Croydon), a geographical area served by several health and social care providers. The data collected included the Caregiver Activity Survey, which details the informal care given. This paper reports the formal and informal services received by the people with dementia at entry to the study. The amount of time spent on specific caring tasks by all informal carers of people with dementia averaged seven hours per week, but was significantly higher for co-resident carers, even when controlling for the level of dependency of the person cared-for. The odds ratios of receipt of formal services are given, according to where people were living: in the community or residential care, with co-resident carers or alone.
Aim. This article reports on trends in health outcomes for family caregivers of hip-fractured patients and the effects of social support on these outcomes.
Background. Little is known about the impact of caregiving on the health outcomes of family caregivers of patients with hip fracture.
Method. For this prospective, correlational study, data were collected from 135 family caregivers of hip-fractured elders (2001–2005). Data on health-related quality of life and social support were collected from family caregivers at 1, 3, 6 and 12 months after discharge of the older hip-fractured patient.
Findings. During the 12 months after the patients’ discharge, family caregivers’ scores improved significantly in role performance-related scales, including bodily pain, social function, role limitations due to emotional problems and role limitations due to physical problems. However, caregivers’ scores for general health and mental health were significantly lower at 12 months [59·91 (sd = 24·54) and 65·91 (sd = 14·36) respectively] than at 1 month after discharge [64·35 (sd = 23·29) and 67·94 (sd = 18·47) respectively]. The trends for most subscale scores for health-related quality of life were positively related to perceived availability of social support.
Conclusions. Caring for a hip-fractured older family member over a sustained period may enhance family caregivers’ role performance, but have a negative impact on their perceived general health and mental health. These results suggest that home care nurses should develop interventions early after discharge to assess and improve family caregivers’ health perception, mental health and social support.
The literature on carer burden, needs and interventions developed to address care needs of those caring for people with psychosis are reviewed. The findings of a study which explored the views and experiences of carers, service users and professionals with regard to what carers of people with psychosis need from mental health services are then reported.
Objective: To test the feasibility (for a potential randomised controlled trial) of a computer intervention for improving social interaction and promoting the mental health of rural carers.
Design: The study combined pre- and post-intervention measures with interviews to determine the feasibility of the intervention and the acceptability of the study design to participants. The intervention consisted of providing 14 rural carers with computers and a 4-week training program on basic computer skills, using email and the Internet.
Setting: The study was conducted in a rural community setting.
Participants: The carers were 12 women and two men, aged from 50 to 81 years, with an average of 65.5 years.
Main outcome measures: Measures of social isolation (UCLA Loneliness Scale), depression (Geriatric Depression Scale), carer burden (Zarit Burden Interview) and computer confidence were taken at baseline and at a 3-month follow-up. Interviews were completed at follow-up to discuss outcomes of the study. A focus group discussion was conducted with 11 participants to discuss the study and resolve computer issues.
Results: Most carers reported increased confidence in email and Internet use. There was improvement for most participants in depressive symptoms and social isolation, but little change in carer burden. Participants identified many social benefits associated with the computer intervention, such as intergenerational connection, community building, skills and confidence and preparation for the future.
Conclusion: The intervention was found to be practical and acceptable for a group of older carers. It was concluded that it would be feasible to conduct a large randomised controlled trial of the intervention.
Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.
Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.
Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.
Trial registration: Current Controlled Trials ISRCTN63590486.
As older workers move closer to retirement, they are more likely to take on caring roles. This may affect their health, retirement plans, and income security. Retired men and women experience the caring role differently, with men less likely to be adversely affected and more likely to accept services and to derive satisfaction from caring. Carers make an important contribution to the lives of the people they care for and to the community. Caring is a productive role that can be sustained into older age, as long as the carer's health and well-being are maintained. More research is needed on the relationship between retirement and caring, to explore the extent of caring and its impact on retirement plans, income, and the physical and mental health of retired carers. This information could then be built into retirement planning to better prepare older workers for this important role. Caring roles and retirement intersect in several ways. About 6 million Americans, 2.6 million Australians, and 6 million people in the United Kingdom are informal carers. People (especially men) are more likely to take on caring roles as they get older and leave the paid workforce. The need to care for a spouse or older relative can be an unanticipated outcome or a precipitator of retirement. Retirement may coincide with illness or disability of a parent or spouse, or may be forced by the demands of caring. Caring may bring about major changes to retirement plans. The financial impact of having been a carer during one's working life may also be felt most keenly on retirement, through the lack of opportunities for savings and retirement fund co-contributions.
This paper will inform mental health service users and carers on how a University in Wales established a service user and carer-led research group. * The group's primary aim will be to undertake its own service user and carer-led research projects. * Mental health service users have undergone empowerment and research training at a University in Wales. This is an important initiative because it is the first service user and carer-led research group in Wales. * This paper is co-authored by a mental health service user and includes transcripts of service users' stories written in their words. Abstract Service user and carer involvement in research has been gaining momentum in recent years. However, this involvement to date has primarily been as research respondents or 'subjects' in research studies. A group of mental health service users at a University in Wales underwent empowerment and research training to enable them to become active participants in the research process; this training was a necessary step to equip mental health service users with the skills to become independent researchers and to carry out service user-led research. We included transcripts from mental health service users on their views of the empowerment and research training received. We are not reporting, in this paper, on the findings from a research study rather it aims to inform readers how a service user and carer-led research group has been established in Wales. The group has two purposes: (1) to train service users in research methodologies, and thus for them to gain essential research skills; and (2) to undertake their own service user and carer-led research projects thereby implementing the research skills they have acquired from the training. The latter is a primary aim of the group; a future paper will report on its development.
The author comments on the limited access to Australian mental health care particularly in rural and remote settings. He cites an article by Alexander and Fraser which reports that poor access to specialists and mental health services in some rural settings prevents patients from being treated by their general practitioners. Due to this, the large burden of care falls to families and informal carers. Recommendations on how to improve access to mental health services are also discussed.
Direct payments are crucial to achieving the Government's aim to increase independence, choice and control for service users and their carers through allowing them the opportunity to arrange their own personalised care. The Health and Social Care Act 2008 extends the availability of direct payments to those people who lack the capacity to consent to their receipt. In addition, the government is also reviewing the current exclusions to receiving direct payments for those people who are subject to various provisions of mental health legislation in light of the modernisation of mental health law brought about by the Mental Health Act 2007. The Government is now consulting on regulations relating to these two changes.
The Oxford Friends and Family Empowerment (OFAFE) service is a carer support service that originated in a collaboration between the Oxfordshire Complex Needs Service and the national mental health charity Rethink. OFAFE provides support and education for adults supporting an individual with a personality disorder. This paper describes the background and operation of the OFAFE service, along with the early stages of the development of a similar service for young carers, the Young Friends and Family Empowerment (YFAFE) service.
This document sets out recommendations for guiding the development of mental health nursing, with the core aim of improving the outcomes and experience of care for service users and carers.
The national outcomes framework for people who need care and support and carers who need support in Wales has been created to deliver on the actions set out in Sustainable Social Services for Wales: A Framework for Action, and the need to fulfil the duties set out in the Social Services and Well-being (Wales) Act. The framework is made up of a well-being statement and the outcome indicators to measure whether well-being is being achieved. The key objectives of the framework are: to describe the important well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives, giving people a greater voice and control over their lives and enable them to make informed decisions to ensure they achieve their personal well-being outcomes; to set national direction and promote the well-being of people who need care and their carers; to provide greater transparency on whether care and support services are improving well-being outcomes for people in Wales using consistent and comparable indicators. This will allow the sector to scrutinise its performance and will shine a spotlight on what needs to be done to improve people’s well-being rather than focussing on the processes involved in delivering social services.
This paper presents the finding of an exploratory study examining the risk management strategies of informal carers of mental health service users. Thirteen carers from two cities were interviewed in depth using a semi-structured interview schedule. Participants had been informal carers between four and 20 years and supported users with formal diagnoses of schizophrenia, manic depression and depression. A grounded theory approach was followed to collect and examine data and to test the resulting models of risk management. Three models of risk management are discussed and relate to a wide range of risk posed and faced by the carers' users. The results of this study are compared with those of an earlier study into the risk management strategies of 22 service users with similarities and differences highlighted. 40 refs. [Abstract]
This study investigates potential explanations of the association between caring and common mental disorder, using the English Adult Psychiatric Morbidity Survey 2007. We examined whether carers are more exposed to other stressors additional to caring – such as domestic violence and debt – and if so whether this explains their elevated rates of mental disorder. We analysed differences between carers and non-carers in common mental disorders (CMD), suicidal thoughts, suicidal attempts, recent stressors, social support, and social participation. We used multivariate models to investigate whether differences between carers and non-carers in identifiable stressors and supports explained the association between caring and CMD, as measured by the revised Clinical Interview Schedule.
The prevalence of CMD (OR = 1.64 95% CI 1.37–1.97), suicidal thoughts in the last week (OR = 2.71 95% CI 1.31–5.62) and fatigue (OR = 1.33 95% CI 1.14–1.54) was increased in carers. However, caring remained independently associated with CMD (OR = 1.58 1.30–1.91) after adjustment for other stressors and social support. Thus caring itself is associated with increased risk of CMD that is not explained by other identified social stressors. Carers should be recognized as being at increased risk of CMD independent of the other life stressors they have to deal with. Interventions aimed at a direct reduction of the stressfulness of caring are indicated. However, carers also reported higher rates of debt problems and domestic violence and perceived social support was slightly lower in carers than in non-carers. So carers are also more likely to experience stressors other than caring and it is likely that they will need support not only aimed at their caring role, but also at other aspects of their lives.
The study examined the effect of direct and indirect stresses on the mental health of offspring caring for an aging parent. The study is based on Pearlin, Lieberman, Menaghan, and Mullan's (1981) Stress Development Model. The research examined 345 subjects, men and women aged 40-59 who filled a questionnaire sent by post within their workplace. The research findings show that the various stresses of the caregiver role are mutually connected and have a significant positive effect on the mental health of caregiving offspring. Another finding shows that the extended family support variable acts as a buffer on the caregiving burden on the adult child.
BACKGROUND: Despite considerable investment in research priority setting within diverse fields of healthcare, little is known about the extent to which different stakeholder groups share research priorities. Conflicting priorities may jeopardize stakeholder engagement in research.
OBJECTIVE: To identify the research priorities of different stakeholder groups within mental health care and examine the extent and nature of agreement between them.
DESIGN: Using a Delphi technique, we conducted parallel consultation processes within four different stakeholder groups. Each group process consisted of three rounds.
SETTING AND PARTICIPANTS: The study was carried out within a mental health and learning disabilities trust in southern England. Participants were recruited from the following groups: mental health service users (34), informal carers (26), mental health practitioners (35) and service managers (23).
FINDINGS: There were striking differences between the four groups in respect of their ability and willingness to make priority decisions. These differences notwithstanding, there was considerable overlap in respect of their research interests. All groups identified and attached high importance to issues relating to the promotion of independence, self-esteem and recovery. The quality of in-patient care, the place of psychological therapies and the relationship between physical and mental health also emerged across the board.
CONCLUSIONS: The confluence of four different stakeholder groups around a number of clear themes is highly encouraging, providing a framework within which to construct a research agenda and suggesting that mental health research can be built on solid partnerships.
Purpose– National mental health policies in the UK have a common theme of seeking to develop working partnerships between people who use mental health services, their families and carers and professionals. In Somerset, following a staff training programme, a Family Liaison Service has been developed whereby systemically trained staff work alongside inpatient staff to hold family meetings as part of the assessment and admission process on all wards for working age adults and older people. This article aims to focus on this initiative.
Design/methodology/approach – The article considers the development of the Family Liaison Service and evaluates its progress based on audit data, feedback from families using the service, and a survey of staff experience. Issues raised in developing family inclusive services are discussed.
Findings – Evaluation of the service suggests that, although there is still progress to be made, considerable success has been achieved in embedding the service on inpatient units with a substantial increase in meetings held between staff and families. Feedback from families is positive and staff report increased confidence in engaging with families and carers.
Originality/value – This article describes a transferable model for the implementation of national policy to develop working partnerships with families and carers in mainstream mental health services.
Background: Consumer and carer participation in mental health service development and evaluation has widespread nominal support. However, genuine and consistent participation remains elusive due to systemic barriers.
Aims: This paper explores barriers to reform for mental health services from the perspectives of consumers and carers actively engaged in advocating for improvements in the mental health system.
Method: Qualitative research with two mental health systemic advocacy organisations analysed 17 strategic communication documents and nine interviews to examine barriers to reform and participation identified by consumer and carer advocates and staff.
Results: A number of individual-level barriers were described, however advocates gave more focus to systemic barriers, for which five themes emerged. These reflected lack of awareness, limited participation opportunities, slow progress for change, policy issues and mental health culture including stigma.
Conclusions: Findings highlight systemic barriers to participation for consumer and carer advocates as a whole and the influence of these barriers on the individual experiences of those engaged in advocacy and representation work. Participants also emphasised the need for leadership to overcome some of these obstacles and move towards genuine consumer and carer participation and reform. Findings are discussed in the context of power within mental health systems.
BACKGROUND: United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM: To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS: The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS: Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS: Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.
Background: Little is known about the experiences of individuals with intellectual disabilities and additional mental health problems who are admitted for inpatient psychiatric care. In the UK such care is delivered in both generic psychiatric and specialised treatment settings.
Aims: The present study explored service users' and carers' views on in-patient psychiatric treatment received across these two settings.
Method: Thirty service users and wherever possible their main carers were interviewed about their views on the psychiatric admission, treatment and discharge process. Data was gathered during semi-structured, one-to-one interviews.
Results: Both service users and carers identified positive and negative aspects of the psychiatric admission. For service users lack of control and information, support from staff, or conversely its absence emerged as key themes. For carers concerns about service users' vulnerability, negative staff attitudes and opportunities for involvement emerged as key themes. The accounts of both groups regarding generic psychiatric settings were predominantly negative. In contrast, specialized settings were frequently described as providing a pleasant environment, supportive and caring staff, good information sharing and satisfactory discharge arrangements.
Conclusions: Important areas for service improvements are highlighted. Implications in particular for generic settings are considered.
Health is an important factor in the capacity of family and friends (informal carers) to continue providing care for palliative care patients at home. This study investigates associations between the health-related quality of life (HRQOL) of current informal carers and characteristics of the carers and their caregiving situation, in a sample of Australian carers of palliative care patients. The cross-sectional study used the Short Form-36 Health Survey to measure HRQOL. It found carers to have better physical health and worse mental health than the general population. Of 178 carers, 35% reported their health to be worse than it was one year ago. Multiple regression analyses found that the HRQOL of carers whose health had deteriorated in the previous year was associated with the patient's care needs but not the carer's time input, unlike the carers reporting stable health. Clinicians caring for palliative care patients should be alert to the potential health impairments of informal carers and ensure that they are adequately supported in their caregiving role and have access to appropriate treatment and preventive health care.
OBJECTIVES: Carers of people with eating disorders (ED) have high levels of distress, but little is known about the contributing factors. The aim of this study was to examine predictors of carers' distress and caregiving appraisals using a model of caregiving adapted from the previous literature.
DESIGN: A cross-sectional design was used.
METHODS: A sample of 115 individuals currently caring for someone with an ED participated in the study. Carers completed self-report assessments of psychological distress (GHQ-12; Goldberg & Williams, 1988), experience of caregiving (Szmukler et al., 1996), illness representations (IPQ-SCV; Barrowclough, Lobban, Hatton, & Quinn, 2001) and caregiving needs (CaNAM; Haigh & Treasure, 2003). Simple and multiple hierarchical regressions were conducted.
RESULTS: Approximately 36% (39/109) of carers had scores on the GHQ which indicated mental health difficulties, with 17% (19/109) experiencing high psychological distress. A negative experience of caregiving was associated with carers' distress. The dependency of the individual with the ED and stigma associated with the illness were most highly predictive of carers' distress. Shorter illness duration, higher levels of needs (lower levels of support) and perceptions of high illness consequences contributed to greater negative caregiving appraisals. The belief that the illness was attributable to the sufferers' personality was related to fewer positive appraisals.
CONCLUSIONS: Adjusting to the impact of a family member experiencing an ED is problematic, as suggested by the relationship between shorter illness duration and greater negative appraisals of caregiving. Interventions to help reduce dependency and alleviate stigma may help to decrease carers' distress.
The study aimed to explore the effectiveness of a mental health screening and referral clinical pathway for generalist community nursing care of war veterans and war widow(er)s in Australia on outcomes of client self-reported mental health, quality of life, and client and carer satisfaction. The pathway was developed by literature review and consultation, then trialled and evaluated. Validated screening tools were embedded within the pathway to support generalist nurses' mental health decision making. Pre- and post-measures were applied. Clients on whom the pathway was trialled were invited to complete an evaluation survey questionnaire, as were their informal carers. Most clients and carers who responded to these questionnaires were highly satisfied or satisfied with care provided through application of the pathway. This study adds understanding about one way that community nurses might identify people with mental health difficulties. The trialled pathway, which was modified and refined following the study, is now available on the Internet as an evidence-based resource for community nurses in Australia to guide practice and maximize holistic care for war veterans and war widow(er)s where that care is funded by Department of Veterans' Affairs.
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.
Original document (pdf) on the Scottish Government website.
The aim of this document is to help local mental health services develop support services for carers of people with mental health problems. It contains guidance on developing and sustaining mental health carer support services and also includes a sample job description for carer support workers. The guidance should be read in conjunction with Standard Six (Caring for Carers) of the Mental Health National Service Framework (MHNSF) and guidance on implementation of the Carers and Disabled Children Act 2000.
Objectives To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms.
Design A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically.
Setting Three mental health and one neurology dementia clinic in South East England.
Participants Participants were primary family carers of a patient diagnosed with dementia who provided support at least weekly to their relative. We invited those in the treatment group remaining in the START study at 2 years postrandomisation (n=132) to participate. 75 people, comprising a maximum variation sample, responded.
Primary and secondary outcome measures (1) Important aspects of the therapy. (2) Continued use of the intervention after the end of the therapy. (3) Unhelpful aspects of the therapy and suggestions for improvement. (4) Appropriate time for intervention delivery.
Results Carers identified several different components as important: relaxation techniques, education about dementia, strategies to help manage the behaviour of the person with dementia, contact with the therapist and changing unhelpful thoughts. Two-thirds of the participants reported that they continue to use the intervention's techniques at 2-year follow up. Few participants suggested changes to the intervention content, but some wanted more sessions and others wanted the involvement of more family members. Most were happy with receiving the intervention shortly after diagnosis, although some relatives of people with moderate dementia thought it should have been delivered at an earlier stage.
Conclusions Participants’ varied responses about which aspects of START were helpful suggest that a multicomponent intervention is suited to the differing circumstances of dementia carers, providing a range of potentially helpful strategies. The continued use of the strategies 2 years after receiving the intervention could be a mechanism for the intervention remaining effective.
Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).
Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.
Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.
Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.
Closer relationships between caregivers and care recipients with dementia are associated with positive outcomes for care recipients, but it is unclear if closeness is a risk or protective factor for the health and psychological well-being of caregivers. We examined 234 care dyads from the population-based Cache County Dementia Progression Study. Caregivers included spouses (49%) and adult offspring (51%). Care recipients mostly had dementia of the Alzheimer's type (62%). Linear mixed models tested associations between relationship closeness at baseline or changes in closeness prior to versus after dementia onset, with baseline levels and changes over time in caregiver affect (Affect Balance Scale, ABS), depression (Beck Depression Inventory, BDI), and mental and physical health (components of the Short-Form Health Survey, SF-12). After controlling for demographic characteristics of the caregiver, number of caregiver health conditions, and characteristics of the care recipient (type of dementia, functional ability, and behavioral disturbances), we found that higher baseline closeness predicted higher baseline SF-12 mental health scores (better mental health) and lower depression. Higher baseline closeness also predicted greater worsening over time in ABS and SF-12 mental health. In addition, caregivers who reported a loss of closeness in their relationship with the care recipient from pre- to post-dementia displayed improved scores on ABS and SF-12 mental health, but worse SF-12 physical health over the course of the study. These results suggest that closeness and loss of closeness in the care dyad may be associated with both positive and adverse outcomes for caregivers, both cross-sectionally and over time.
Purpose of the Study: Research shows that parents benefit psychologically from generativity—giving and caring for the next generation—but older adults’ perceptions on giving support to their children are rarely if ever explored in these studies. The current study examines the association between the support that aging parents give to one of their middle-aged offspring, their perception of this support as rewarding or stressful, and their levels of depressive symptoms.
Design and Methods: The sample draws from The Family Exchanges Study and consisted of 337 older parents (mean age: 76) who were drawn from a larger study of middle-aged adults (i.e., target participants). Older parents reported tangible and nontangible forms of support given to the target middle-aged child and the extent to which they viewed providing such support as stressful and/or rewarding.
Results: We found significant interactions between tangible support and feelings of reward and between nontangible support and feelings of stress in explaining parental depressive symptoms. Parents who found giving support to be highly rewarding had lower levels of depressive symptoms when giving high amounts of tangible support. Conversely, parents who view giving support to be highly stressful had higher levels of depressive symptoms when they gave low amounts of nontangible support.
Implications: Findings suggest older parents’ perceptions of supporting their offspring may condition how generativity affects their mental health.
No abstract is available for this article.
Mental healthcare for older people is primarily delivered in the community with informal carers, usually family providing much of this. Older people often require input from a range of services across sectors. In Australia, the different funding and governance structures of these services makes for a complex landscape for older people, their families and mental health workers to navigate. As many people now care into later life, the consequences of not getting the required support include the potential for increased carer burden and reduced capacity to fulfil caring tasks. To help address this, partnerships between carers and service providers are recommended. We were interested in exploring rural carers' experiences of accessing care from a range of services for older people with mental health problems with the view to identify what was currently working, as well as what could be changed to improve service access, coordination of care and positive experience of care.
Background: This study aimed to evaluate outcomes for carers receiving the Admiral Nurse Service, a specialist mental health nursing service for carers of people with dementia. In contrast to many community mental health teams, it works primarily with the caregiver, focuses exclusively on dementia and offers continuing involvement, throughout the caregiving career, including emotional support, provision of information and coordination of practical support.
Method: 104 carers of people with dementia who were interviewed as soon as possible after being referred to a number of Admiral Nurse (AN) services or conventional services in neighbouring areas, and who were re-interviewed eight months later, form the sample (43 AN; 61 comparison).
Results: There were no significant differences between groups, controlling for initial score, on the primary outcome measure at follow-up, the 28-item General Health Questionnaire (GHQ) or its sub-scales, apart from anxiety and insomnia, where outcome was better for the AN group (p = 0.038). Follow-up GHQ scores were associated with ratings of past and current relationship quality. There were no differences in survival in the community between the groups.
Conclusion: Both conventional and AN services are associated with lower distress scores over an eight-month period. Outcome for people with dementia (in terms of institutional placement) is no worse in the AN group, despite the carer focus. Some support is provided for a model of dementia-specialist service which engages with the caregiver and continues involvement for as long as is required, rather than simply carrying out an assessment and referring the person back to social services or primary care. Copyright © 2003 John Wiley & Sons, Ltd.
Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project (www.projectaida.eu/). This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies
Background Even at the first episode of psychosis, high expressed emotion (EE) characterises over half of patient–carer relationships. This study compared a carer appraisal model of EE with the ability of illness factors to predict EE at the first episode.
Aims To investigate the utility of a carer appraisal model of EE in first-episode psychosis.
Method We compared high- and low-EE carers of people who had first-episode psychosis (n=46).
Results High EE in carers was associated with higher avoidant coping, higher subjective burden and lower perceived patient interpersonal functioning. Patient illness factors and carers’ distress levels were not associated with EE.
Conclusions Even at the first episode, carers’ psychological appraisal, not patient illness factors, is influential in determining high EE. Carers’ appraisal of their situation should be a primary target to lower or prevent high EE in early intervention for psychosis.
This paper describes the increased national focus on including families and carers in all aspects of mainstream mental health services. It proposes that the specific recommendations included in the National Service Framework for Mental Health be brought together in the form of a strategy to enhance working partnerships with families and carers. It advocates that the implementation of the NSF requires a comprehensive awareness and basic skills training in order that the consideration of families and carers becomes a routine part of mainstream services.
I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.
This report presents the findings of a survey of the mental health of carers living in England. The survey was commissioned by the Department of Health and was carried out between March and July 2001. It is one of a series of surveys of different population groups which began in 1993. The sample for the survey was obtained from people who were identified as carers on the basis of questions included in the 2000 General Household Survey. This report describes the extent to which carers experience mental health problems, such as depression, anxiety and phobias, and identifies a number of factors which are associated with increased levels of such symptoms. It considers a range of factors, such as the socio-demographic characteristics of the carer themselves, their health, the characteristics of those they care for, and the support they receive in their caring role. The report also considers to what extent those carers with mental health problems receive treatment. The report includes a description of the survey methods used and aims to provide an overview of the main topics covered.
The new draft Code takes account of the changes to relevant legislation since the previous Code was written. Within the draft Code there is strengthened emphasis on: the involvement of patients and, where appropriate, their families and carers in all aspects of assessment and treatment; understanding the principles of the Mental Capacity Act 2005 and how these should apply to all care and treatment; the involvement of Independent Mental Health Advocates; and the use of appropriate transport for patient subject to the Act to ensure their dignity and safety as far as is practicable. There are two other matters of proposed guidance in the draft Code that are not in the existing code. In relation to the timing of assessments both at the police station and elsewhere, the draft Code proposes: that they should be undertaken within 3 hours and that detention in a police station should not exceed a maximum of 12 hours. Secondly, it proposes that a statutory care and treatment plan, if needed, will be started no longer than 72 hours after admission.
Original document (pdf) on the Welsh Government website.
Objective: To investigate stroke patients’ and carers’ perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.
Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.
Setting: Community stroke services in North Nottinghamshire, UK.
Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.
Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.
AIMS AND METHOD To assess whether postal questionnaires, used as a local initiative, were useful in identifying carer depression allowing early support for community-dwelling carers of older adults with mental health needs. The Geriatric Depression Scale and a questionnaire collecting information on the carer’s circumstances were sent to carers of consecutive patients routinely referred to a community mental health team for older adults in south London. Rates of carer depression between postal questionnaire responders and non-responders were compared.
RESULTS The response rate to the postal questionnaires (33%) was similar to that observed in other postal studies; 42% of responders had depression compared with only 4.6% of non-responders.
CLINICAL IMPLICATIONS Pre-contact postal questionnaires may present a simple method of enhancing early detection of carer depression for minimal economic outlay.
This article explores the findings from a recent research project conducted by the Mental Health Foundation for the Alzheimer's Society. The project 'Out of the Shadows' draws out important messages for people with dementia and their carers about their preferences for care and support. The research involved a literature review, focus groups and one-to-one interviews. It investigated who they found out they had dementia, the assessment and diagnostic process, and how they coped after diagnosis.
Mental health services are required to involve family, carers, and service users in the delivery and development of mental health services but how this can be done in routine practice is challenging. One potential solution is to prescribe practice standards or clear expectation relating to family involvement. This paper describes practice standards introduced to an adult mental health service and a study that aimed to evaluate the impact of the standards on practice. Hospital and community files were audited before and after the introduction of standards for evidence of participation and surveys of carers and consumers relating to the quality of participation were undertaken. Increases in documented carer participation were found, particularly in relation to treatment or care planning. The expressed needs relating to participation varied in hospital and community settings. The majority of carers and service users were satisfied with their level of participation. The introduction of practice standards is an acceptable, inexpensive, and feasible way of improving the quality of family and carer participation, but gains may be modest.
Traditionally, day care for elderly persons has been provided by health or social services; however, recently facilities have been developed by voluntary organizations. This study was conducted to examine the characteristics of elderly clients with mental health problems attending these various settings, and to identify any areas of unmet need. One hundred and twenty-nine clients attending ten different day care facilities and their carers were interviewed in a standardized manner.There were both similarities and important differences between clients attending day hospitals, social services and Age Concern day centres. Day centres had a higher proportion of cognitively impaired clients than day hospitals. Although there were similar rates of depression across all settings, the severity of depression was greater in those attending Age Concern day centres. Patients at day hospitals suffering from dementia were more likely to be psychotic or behaviourally disturbed. The reasons for these differences are discussed in detail. Carers and clients were generally satisfied with services, though professionals were less satisfied. There is a need for joint planning and commissioning of day care to provide maximum flexibility and co-ordination of services.
Objective: The objectives of this study were to: (i) obtain baseline data on the extent of carer involvement across a representative sample of hospital and community patients within an integrated area health service; and (ii) examine perspectives on discharge planning and community care among patients and their carers to identify information and resources they consider important.
Method: Over a 4-month period, inpatients before discharge and patients accessing community mental health services participated in face-to-face interviews. Information was collected about carer involvement and, with the patient's consent, the identified carer was sent a similar survey to determine demographics and information needs. This resulted in a representative sample of patients and carers accessing inpatient and community settings acrossa metropolitan mental health service. Support needs and carerburden were also assessed but are not reported here.
Results: A total of 407 interviews were completed, 207 in inpatient settings and 200 in the community. An inpatient response rate of 70% and a community response rate of 75% was achieved. Across both settings, 67% of patients identified a carer and a carer response rate of 28% was then obtained. We found carers and patients have different priorities regarding the information they want and information is often not provided to carers. Furthermore, patients were more confident in their ability to manage their mental health in the community than carers.
Conclusions: This study yielded important baseline data about the number of patients who have a carer. We were also able to determine that routine clinical information provided to patients and carers is inadequate from their perspective. It is anticipated that this initiative will assist ongoing service planning and improve partnerships with patients and their carers.
This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes. Each quality statement is accompanied by clear quality measures. The standard aims to improve outcomes in: mortality rate, suicide rate, quality of life for people with severe mental illness, quality of life for carers, employment rates, and service user experience of mental health services.
Carers are seen as legitimate stakeholders in wider policy processes and increasingly as ‘co-producers’ and key providers of care. Mental health carers, however, especially those caring for relatives subject to compulsory care and treatment, often feel overlooked and marginalised, caring in complex circumstances with little or no professional support. The Mental Health (Care & Treatment) (Scotland) Act 2003 (MHCT Act) implemented in 2005 aspired to change this for the better. This article focuses specifically on findings from seven focus groups and 10 individual interviews with 33 carers from three Health Board areas and the State Hospital in Scotland. Interviews were conducted at two stages during 2007 and 2008 as part of a wider study. Participating carers were supporting relatives who were under different compulsory measures and so had experience of new procedures under the MHCT Act. The data were gathered as part of a cohort study exploring service users’, carers’ and professionals’ early experiences of the Act’s implementation. A topic guide was used to explore the impact of compulsion on carers; the ‘Named Person’ role; Mental Health Tribunals; the principles underpinning the MHCT Act; and suggestions for improving the law. The study found that new provisions, in particular the Named Person role and Mental Health Tribunals, had resulted in positive change. However, many carers still felt isolated and unsupported. They remained critical of the lack of consultation and involvement at both individual and collective levels. Few were aware of their right to a carer’s assessment and many were sceptical that this would make any difference. Acknowledging the study’s limitations, we discuss the implications for practice in light of broader policy agendas of personalisation, recovery, recognition for carers and promotion of more community-based mental health services.
As community care has become embedded in the UK as in much of the western world more responsibility for psychosocial care has been placed on family carers. A systematic review of the literature about the role of family carers supporting a relative with severe mental illness and their relationships and engagement with professionals was carried out. The review aimed to find out what professionals expected of family carers and what family carers expected of themselves. Themes were identified: the distinct and personal nature of family caring, potentially effective family caring, barriers to effective caring and ways to overcome barriers. There were expectations that family carers were obligated to help support effective care, but that the rights to enable carers to fulfil these obligations were not consistently upheld. Barriers to upholding rights include: types of service provision, professional attitudes to communication and engagement with carers, and carer ability to cope. Recommendations for practice included: service provision aimed at including carers, more empathic communication by professionals, and a covenant between mental health services and people who depend on them. The idea of a covenant requires more discussion and research is needed into what is expected of family carers.
This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’.
This article reports the findings of a literature review of research that has explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from recent research studies, about their own support. Having discussed the search strategy, definitions of challenging behaviour and mental health/illness are presented. Evidence concerning the needs of carers and the extent to which they are met is explored, and the need for consistency and good communication are highlighted. Conclusions are drawn and recommendations made for the development of future research and practice.
This article describes the themes emerging from the author’s anthology of personal accounts of caring for a family member or friend with dementia, ‘Telling tales about dementia’. It explains the importance of family carers and suggests that the knowledge of family carers should be actively sought by professionals delivering services, discussing the barriers of patient confidentiality, examples of important information from family carers being disregarded, and the role of family carers in monitoring care and challenging professionals when necessary. The author asserts that in practice it is rare for family carers to be respected as expert care partners but that when this happens it provides considerable benefits, and concludes that a cultural change is needed in the medical and social care professions to ensure that the contribution of family carers is welcomed and respected.
This chapter explores the provision of care and considers possible future developments and the challenges around provision. We begin with a discussion of human resources, posing the question of whether the UK can satisfy the growing demand for carers, both informal and professional. We specifically examine the different types of carer: the self-carer, informal carers and professionals – social carers, nurses, and doctors, and the implications for health and social care policy and consider the implications for these carer roles in society. We also look at current policy on care in the UK.
As part of an evaluation of service users’ and carers’ experience of involvement in mental health education, training and research, an extended literature review was undertaken. The purpose of this was to review policy underpinning service user and carer involvement in those areas, identify the extent and range of involvement, the processes involved, and the extent to which the effectiveness and impact of involvement had been evaluated. The review found that there was a range of different ways in which people were involved. It identified different types and levels of involvement and different motivations for taking part in involvement activities. Government policy and guidance on public and patient involvement (PPI) in health services has clearly been a driver and has resulted in widespread involvement activity but this has developed on an ad hoc and inconsistent basis.
There are benefits for service users and carers, the NHS, and educational establishments arising out of involvement activity. These include improvements in the health and well-being of service users, enhancing the student experience, and improvements to service delivery. However, there are still barriers to involvement including organisational factors and unintentional discrimination. Payment for involvement activity remains an under researched area. Service users value payments but welfare benefits rules, and inconsistent interpretation of good practice guidance, mean this can be a further barrier to involvement. Currently, the evidence base evaluating the effectiveness of service user involvement in a range of activities including service planning, delivery, education and research is limited.
Helping people to understand what mental illness is and means to people who are affected by it can be difficult, but a set of resources has been developed by a person with bipolar disorder to help address the problem. The 'Choices Method' consists of a series of boards covering a range of mental health conditions which are designed to promote a free exchange of feelings and information between those experiencing mental illness and those supporting them. The method has been independently tested by a UK university and has been found to improve learning and knowledge retention as opposed to other methods. Future projects include the development of a board game for young carers which targets bullying and a board game for people with dementia which charts a day in the life of a person with dementia and those who care for them.
Background A third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour. Aims To test our hypotheses that carers’ reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores. Method In total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.
Results Sixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively β = 0.32, t = 3.9, P<0.001 and β = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (β = –0.18, t = –2.2, P = 0.031).
Conclusions Most abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).
Purpose– The purpose of this paper is to examine the value of approaches to mental health based on creative practice in the humanities and arts, and explore these in relation to the potential contribution to mutual recovery.
Design/methodology/approach – The paper is a conceptual analysis and literature review.
Findings– Recovery can embrace carers and practitioners as well as sufferers from mental health problems. Divisions tend to exist between those with mental health needs, informal carers and health, social care and education personnel. Mutual recovery is therefore a very useful term because it instigates a more fully social understanding of mental health recovery processes, encompassing diverse actors in the field of mental health. Research demonstrates the importance of arts for “recovery orientated mental health services”, how they provide ways of breaking down social barriers, of expressing and understanding experiences and emotions, and of helping to rebuild identities and communities. Similarly, the humanities can advance the recovery of health and well‐being.
Originality/value – The notion of mutual recovery through creative practice is more than just a set of creative activities which are believed to have benefit. The idea is also a heuristic that can be useful to professionals and family members, as well as individuals with mental health problems themselves. Mutual recovery is perhaps best seen as a relational construct, offering new opportunities to build egalitarian, appreciative and substantively connected communities – resilient communities of mutual hope, compassion and solidarity.
Concerns raised over number of prosecutions made against care staff or carers for ill-treatment or wilful neglect of people subject to the Mental Health Act or Mental Capacity Act. [Journal abstract]
Purpose of the study: Caring for a spouse diagnosed with Alzheimer’s disease holds potentially severe negative consequences for the physical and psychological well-being of the caregiver. As it is known that the maintenance of a flexible time perspective holds benefits for individual health, the main purpose of this study was to identify and describe the changes in the time perspective of persons caring for a spouse diagnosed with Alzheimer’s disease.
Design and Methods: The SELE instrument was administered in order to shed light on the time perspective of a total of 40 participants. A criterion group design was used, and a mixed methods approach adopted during the collection and analysis of data.
Results: The results of this research project highlighted the existence of a number of important differences regarding the time perspective of caregivers and non-caregivers. The time perspective of caregivers was severely affected by the caregiving situation and the accompanying grieving process. This proved to be one potential avenue through which the caregiving situation has its negative effect on caregivers’ well-being.
Implications: Owing to the usually insufficient funding for the care of demented patients, research regarding the identification of potential cost-effective methods to enhance the resilience of caregivers is of the essence. Maintenance of a balanced time perspective might prove to be to the benefit of caregiver psychological well-being.
A major issue in research, policy and professional practice is the social exclusion of carers, in particular carers for people with mental health problems. In order to address the issue of social exclusion from the perspectives of professionals, 65 participants were interviewed. The sample included directors, managers and senior staff from the social care, health and voluntary sectors. Respondents were asked to comment at length on the social exclusion of carers. Findings highlight four main types of exclusion: first, personal exclusions, including stigma; keeping mental health problems ‘a secret’; and taboos surrounding mental health care; second, social exclusions, such as isolation; narrowing of social networks; restrictions due to time commitments; exclusions relating to education, training, employment and leisure; and young carers; third, service exclusions involving carers being taken for granted and having difficulties with access to appropriate services; and fourth, financial or economic exclusions that lead to carers paying for care. This paper documents patterns of exclusion and draws out implications for research, policy and professional practice. In conclusion this paper also considers the ways in which professionals and services may better promote the social inclusion of carers for people with mental health problems in the future.
Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.
Objectives: Mental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems.
Method: The Pathways Interview Schedule was used to facilitate 9 in-depth care journey interviews with 11 carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services. Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers.
Results: Carers had a significant role in navigating services and operationalising care for their relative. Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws.
Background Primary care services are often the main healthcare service for people with dementia; as such, good-quality care at this level is important.
Aim To measure the quality of care provided to people with dementia in general practice using routinely collected data, and to explore associated patient and practice factors.
Design and setting Observational, cross-sectional review of medical records from general practices (n = 52) in five primary care trusts.
Method A total of 994 people with dementia were identified from dementia registers. An unweighted quality-of-care score was constructed using information collected in the annual dementia review, together with pharmacological management of cognitive and non-cognitive symptoms. Multilevel modelling was carried out to identify factors associated with quality-of-care scores.
Results In total, 599 out of 745 (80%) patients with dementia had received an annual dementia review; however, a social care review or discussion with carers was evident in just 305 (51%) and 367 (61%) of those 599 cases, respectively. Despite high prevalence of vascular disease, over a quarter (n = 259, 26%) of all patients with dementia were prescribed antipsychotics; only 57% (n = 148) of these had undergone medication review in the previous 6 months. Those with vascular dementia who were registered with single-handed practices received poorer quality of care than those registered with practices that had more than one GP.
Conclusion Although the number of people with dementia with a record of an annual dementia review is high, the quality of these reviews is suboptimal. The quality score developed in this study could be used as one source of data to identify weaknesses in practice activity that need to be corrected, and so would be of value to commissioners and regulators, as well as practices themselves.
Describes a new strand in this journal in its coverage of research that involves mental health service users and is important to their concerns. Looks at some of the ways in which service user involvement can change research and heralds the dawn of a new era where service users and informal carers are not just the subjects of investigation, but can now have an effect on an influential research forum. (Quotes from original text)
Purpose – This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.
Design/methodology/approach – Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive.
Findings – This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support.
Originality/value – This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group.
Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia.
Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.
Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).
Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers’ quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, −0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.
Conclusions A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers’ quality of life also improved. Trial registration Current Controlled Trials ISCTRN70017938.
This draft framework, which is being issued for consultation, sets out what those planning, delivering and monitoring local primary care and mental health services need to do to improve services for users experiencing mental illness and distress, and their relatives and carers, from Black and minority ethnic communities. There is clear evidence that these users and their relatives and carers experience inequitable services and outcomes. The document focuses on achieving improvements in three generic aspects of delivery (information, appropriate and responsive services and community engagement). These are termed the ‘building blocks’ as they are fundamental to delivering improvements in the outcomes and experiences of Black and minority ethnic users and their carers and relatives. The document then looks in detail at three specialist areas (suicide, pathways to care and acute inpatient care) of particular concern.
This study assessed differences between service users’, family carers’ and mental healthcare providers’ perceptions on service user and family carer involvement in mental healthcare. We conducted questionnaires in care networks for persons with serious and persistent mental illness, among 111 service users, 73 family carers and 216 mental healthcare providers. Many aspects of service user and family carer involvement are achieved to satisfactory levels while other aspects are scarcely realized. Service users and mental healthcare providers perceive family carer involvement as less important and realized than service user involvement. Family carers hold more favorable views on the importance and realization of involvement than do mental healthcare providers. The implementation of stakeholders’ involvement in healthcare is ongoing. Notwithstanding great efforts, service users’ and family carers’ involvement preferences are not yet fully considered. Developing procedures, training and monitoring cycles regarding involvement may enhance this situation.
Sets out the actions required to implement the Welsh Government’s strategy to improve mental well-being of all residents in Wales, during the period 2016-19. It is second of three plans to implement the 10 year strategy. The plan also reflects changes following the Well-being of Future Generations (Wales) Act 2015 and the principles of Prudent Health and Care, providing a greater emphasis on prevention, integration and long term sustainability. The plan covers 11 priority areas. These include: improving quality of life for people, particularly through addressing loneliness and unwanted isolation; that people with mental health problems and their carers are treated with dignity and respect; that all children and young people are more resilient and better able to tackle poor mental well-being when it occurs; there is access to appropriate and timely services; and ensuring that Wales is dementia friendly. The plan is organised in a table providing details of goals, key actions and performance measures.
Original document (pdf) on Welsh Government website.
International and national health policy seeks to increase service user and carer involvement in mental health care planning, but suitable user-centred tools to assess the success of these initiatives are not yet available. The current study describes the development of a new reliable and valid, interval-scaled service-user and carer reported outcome measure for quantifying user/carer involvement in mental health care planning. Psychometric development reduced a 70-item item bank to a short form questionnaire using a combination of Classical Test, Mokken and Rasch Analyses. Test-retest reliability was calculated using t-tests of interval level scores between baseline and 2–4 week follow-up. Items were worded to be relevant to both service users and carers. Nine items were removed following cognitive debriefing with a service user and carer advisory group. An iterative process of item removal reduced the remaining 61 items to a final 14-item scale. The final scale has acceptable scalability (Ho = .69), reliability (alpha = .92), fit to the Rasch model (χ2(70) = 97.25, p = .02), and no differential item functioning or locally dependent items. Scores remained stable over the 4 week follow-up period, indicating good test-retest reliability. The ‘Evaluating the Quality of User and Carer Involvement in Care Planning (EQUIP)’ scale displays excellent psychometric properties and is capable of unidimensional linear measurement. The scale is short, user and carer-centred and will be of direct benefit to clinicians, services, auditors and researchers wishing to quantify levels of user and carer involvement in care planning.
The first part of the paper argues that the care relationship is crucial to securing care quality, which has implications for the way in which quality is achieved and measured. However, for more than twenty years, governments have emphasised the part that increasing market competition and, more recently, user choice of services can play in driving up the quality of care. The second part of the paper analyses the development of social care services for older people, from the reform of 1990 to the changes following the general election of 2010. The paper goes on to examine whether competition and choice are in any case enough to result in ‘good care’, given the evidence of limitations both in the amount of choice available and in how far older people are able or willing to choose. It is argued that if ‘good care’ depends disproportionately on the quality of the care relationship, then more attention should be paid to the care workforce, which has received relatively little comment in recent government documents.
The need for accurate information about the mental health problems of multicultural communities requires valid measures of mental health for use in a number of languages and cultural contexts. Measures of psychopathological symptoms leading to a diagnosis have been especially criticised for their universal application, without attention to their limitations across cultures. Yet, measures are crucial to assess recovery and the performance of services, and to take account of carer and user views. The authors summarise the main challenges in the cultural adaptation of such measures in our work with adults and adolescents of South Asian, African and Caribbean origin.
BACKGROUND: Along with classical motor disorders in Parkinson's disease (PD), psychopathological features frequently co-occur, which may increase the caregiver's burden.
AIMS: To identify the profile of psychopathological symptoms in patients with PD and the impact imposed by this condition on the caregiver's burden.
SUBJECTS: Fifty patients with idiopathic PD seen consecutively at the Movement Disorder Outpatient Clinic at the Hospital of State University of Campinas, Brazil, and their 50 respective caregivers were studied.
METHODS: The 50 patients with PD were divided into three groups according to the respective psychiatric diagnosis received (depression: N = 17, dementia: N = 13 and non-depressed and non-demented: N = 20). We divided the caregivers into three groups according to the mental condition of their patients. To assess the mental condition of patients and the caregiver's burden, and to correlate those psychopathological features found with clinical features of PD, we applied the Neuropsychiatric Inventory (NPI).
RESULTS: Patients with dementia presented the highest NPI scores of psychopathological symptoms (26.4), followed by patients with depression (24.9). Non-depressed and non-demented patients revealed fewer symptoms (7.2). Caregivers' burden was found to be proportional to the degree of patients' symptomatology.
CONCLUSION: Patients with dementia presented more severe motor impairment and lower functionality, followed by patients with depression and those non-demented, non-depressed. Psychotic symptoms, agitation, aberrant motor behaviours and sleep disturbances were higher in dementia group. Neuropsychiatric disturbances correlated with caregiver's burden, which was highest in patients with dementia.
The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium3which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers.
The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.
Clinical guideline which provides best practice advice on the care of adults with autism. The guidance covers the following key areas: general principles of care; identification and assessment; and interventions for autism, challenging behaviour, coexisting mental disorders. Assessment and interventions for families, partners and carers and organisation and delivery of care are also covered. Recommendations for future research include the need for more evidence on the clinical and cost effectiveness of: self-help for anxiety and depression, cognitive behavioural therapy for anxiety disorders and pharmacological treatments for depression in adults with autism. The full guideline, 'Autism: the NICE guideline on recognition, referral, diagnosis and management of adults on the autism spectrum' contains details of the methods and evidence used to develop the guideline.
Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.
Background Burden on the relatives of patients with schizophrenia may be influenced not only by patient and caregiver characteristics, but also by differences in mental health service provision.
Aims To analyse whether family burden is affected by national differences in the provision of mental health services.
Method Patients with schizophrenia and their key relatives were examined in Germany (n=333) and Britain (n=170). Differences in family burden in both countries were analysed with regression models controlling for patient and caregiver characteristics.
Results Family burden was associated with patients’symptoms, male gender, unemployment and marital status, as well as caregivers’coping abilities, patient contact and being a patient’s parent. However, even when these attributes were controlled for, British caregivers reported more burden than German caregivers.
Conclusions National differences in family burden may be related to different healthcare systems in Germany and Britain. Support for patients with schizophrenia may be shifted from the professional to the informal healthcare sector more in Britain than in Germany.
For over three years, Mencap (Nl) has provided and largely funded an ‘Information and Advice Service’ aimed primarily at family carers and people with learning disabilities. The service employs four advisers who cover most of Northern Ireland, offering telephone but also face-to-face contact with enquirers. They have access to a specially developed, computerized database that contains details of local as well as national resources. This paper describes the service and the evaluation process used. Information was obtained from four stakeholder groups, namely service-users; service-funders; the leaders of learning disability teams in Health and Social Services (HSS) Trusts and the chairpersons of Mencap local societies. The features of a good information and advice service are noted, along with the developments required to the existing service. In the main these relate to improved partnership working with statutory agencies and increasing the profile of the service with services, family carers and people with learning disabilities. The lessons learnt in Northern Ireland could usefully inform the development of similar services that are proposed for the Irish Republic, Scotland, England and Wales.
Objective The aim of this paper is to report on the findings of a consultation project exploring demand for mental health related complementary therapy services in the local area. The project and findings are reported with reference to historical context and the literature from service user, healthcare policy and complementary therapy fields. Design The consultation was commissioned by a voluntary sector mental health organisation to establish whether a case could be made for the development of a mental health related complementary therapy service, and what form such a service might take. The researchers sought breadth and balance by seeking views from four standpoints: mental health service users, informal carers, health and social care professionals, and complementary therapy providers.
Setting The consultation activities took place in statutory and voluntary sector settings in Liverpool and surrounding areas. The Merseyside region is an area of long term social disadvantage and environmental neglect, currently subject to extensive regeneration activity with significant UK and EU funding.
Method Service user views were captured through a combination of focus groups, in mental health centres, and questionnaires, completed at these events or distributed through mental health groups. Health and social care professionals' views were elicited through group meetings, questionnaires or interviews based on the questionnaire structure. Complementary therapy providers completed questionnaires or were interviewed using the questionnaire structure.
Results The consultations discovered a high level of interest and confidence in holistic forms of therapy amongst service users, carers and professionals, together with interest and expertise in helping with mental health related problems amongst the therapists.
Conclusion This main contribution to knowledge is in the wealth of detail about potential therapeutic applications and suggested organisational principles for complementary therapy services in the mental health field. The findings are inconclusive on the macro question of service design.
This learning object focuses primarily on the later stages of dementia and on managing the more significant or prominent challenges - and symptoms - associated with this level of dementia. The material aims to reflect, where possible, the experiences of people with dementia and their family carers. Many of the examples given are located in a care home setting although the issues are also very relevant to supporting a person with dementia in the community.
Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.
The 2011 census suggested that 244,000 young people in England and Wales under 19 provide unpaid care for someone with an illness or disability (Office for National Statistics, 2013). Young carers are not a homogeneous population; they represent children and young people from a variety of backgrounds with diverse experiences. Young carers are described as a 'hidden population' (H.M Government, 2010) hence the prevalence of young carers may be larger than data sources reveal. Previous research has identified negative aspects of caregiving and the impact on education, social, emotional, physical health and wellbeing. Young carers seem to be a vulnerable group and marginalised population, yet there is little reference to young carers in educational psychology literature. This research sought to listen to the voices of this hidden population from a strengths-based perspective to consider if this adds to our understanding of their resilience. The research adopted an inductive constructionist approach using Interpretative Phenomenological Analysis (IPA). Six participants aged between 11 and 13 years were recruited from a large rural Young Carers Project to attend three separate interviews. Participants were caring for a parent with a mental illness. Findings illustrated these young carers had very individual and complex lives, full of tensions, yet they found ways of managing and adapting to their situations. Implications for raising the profile of individuals with complex lives are discussed and consideration given to a sensitive, individualised and flexible response.
OBJECTIVES: The purpose of this study was to apply Weiner's (1986) attributional model of helping to the care of clients presenting with challenging behaviour. A number of predictions were tested: (a) that aggressive, destructive, and self-injurious behaviours would differentially affect carers' ratings of attributional dimensions; (b) that carers' propensity to help would be mediated by positive affect rather than optimism; (c) that optimism would be reduced by a perceived stable cause, such as client's level of dependency.
DESIGN AND METHOD: The participants were 50 care staff working in challenging behaviour day services, who were presented with six case studies to rate. A two-factor repeated measures design was employed to examine the effects of challenging behaviour and dependency on carers' ratings of attributional dimensions, affects, optimism and helping. Correlational analysis was employed to examine the relative effects of positive affect, negative affect and optimism on carers' propensity to help.
RESULTS: All three predictions were confirmed. The more independent and outer directed the challenging behaviour, the greater the carers' attributions of control and negative affect, and the less the propensity to help. The more self-directed and dependent the client's challenging behaviour, the greater the carers' attribution of stability, positive affect and propensity to help.
CONCLUSIONS: The results are discussed in relation to the concept of helping and the experience of carers coping with challenging behaviours.
This report presents findings from research into the experiences of using personal budgets for older people, people with mental health problems and their carers, with suggestions for good practice and future improvement.
Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.
Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.
Methods: Patients with definite MS (n = 63) and their corresponding caregivers (n = 63) were recruited. In addition, 59 matched controls were enrolled for establishing normative cognitive data. Each patient underwent a complete neuropsychological testing for cognitive impairment and thorough clinical assessment, including data of disability status (EDSS), affective and emotional symptoms (depression, anxiety, anger) and fatigue. Psychiatric symptoms of the caregivers were assessed with the Beck Anxiety Inventory (BAI) and the Beck Depression Inventory (BDI).
Results: In logistic regression analyses, even after controlling for other MS-related symptoms, cognitive deficits, namely impairment on Symbol Digit Modalities Test (OR = 8.03, 95% CI = 1.27–25.33, p = 0.027) and on the Paced Auditory Serial Addition Test (OR = 6.86, 95% CI = 1.07–21.97, p = 0.042), were significant and independent predictors of more severe caregivers' depressive symptoms.
Conclusions: Information processing speed impairment is independently associated with more severe depressive symptoms of caregivers of MS patients, thereby reflecting a further deterioration of family setting.
This code of practice provides guidance to mental health professionals and other practitioners on how they should carry out their duties under the Mental Health Act. As well as providing guidance for professionals, the revised code of practice also guides patients, their families and carers on their rights. Chapters are grouped into seven areas: Using the Act; Protecting patient's rights and autonomy; Assessment, transport and admission to hospital; Additional considerations for the needs of specific patients; Care, support and treatment in hospital; Leaving hospital; and additional information for professional with specific responsibilities under the Act. Subjects covered in individual chapters include: the nearest relative; independent mental health advocates; mental capacity and deprivation of liberty; detention in hospital; police community treatment orders; guardianship; after care; and care programme approach. The code of practice will come into force on 1 April 2015, depending on Parliamentary approval.
The article discusses issues being debated in Great Britain's House of Commons in July 2010. Health Minister Paul Burstow observes that young carers of parents or siblings needed an integrated support programme from schools, social services and community groups. Education Minister Michael Gove stated that the number of teachers under the Teach First Programme will be doubled to 1,140 a year. Chris Leslie of Lab/Co-op, Nottingham East, asked that funding for mental health services for deprived children in Nottingham be maintained.
Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.
Aim: This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.
Design: This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.
Data sources: Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.
Results: Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identified
Perceived carer control;
Mental and emotional well-being;
Types and impact of caregiving tasks;
Impact of patients’ physical condition;
Impact of age/gender/demographic factors;
Positive aspects of caregiving.
Conclusions: This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.
This consultation paper considers how the law should regulate deprivations of liberty involving people who lack capacity to consent to their care and treatment arrangements. Article 5 of the European Convention on Human Rights guarantees the right to personal liberty and provides that no-one should be deprived of their liberty in an arbitrary fashion.
Informal carers play a key role in mental health care. This article draws on the work of Goffman to analyse the experiences of carers in Ghana. The findings illustrate the complex nature of caring and the need to develop social work practice that acknowledges the social context of carers' reality.
Report of evaluation of the Scottish Recovery Indicator (SRI) pilot in five health board areas of Scotland. SRI is a practice development tool for assessing whether mental health services are meeting service-users' needs for equality, social inclusion and recovery.
Original document from the Scottish Government website.
This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a “unit of care,” and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.
In this second of two articles on community mental health nursing in dementia care, John Keady and Trevor Adams review published accounts of the CMHN role in work with people with dementia and their carers, and suggest a way in which the role might develop in future.
The National Service Framework for Mental Health was published in 1999. It laid out a much welcomed list of standards of what health services were to be provided – in terms of mental health promotion, services in primary and secondary care, services for carers and for suicide prevention. It gave an expectation that all of these would be met within a ten year timeframe. Five years on, it is time to reflect on how far mental health services have risen to the challenge. The picture is mixed. While there is no doubt that increased focus has been placed on specialised community based services, which is welcome, this has in many cases been at the expense of attention on other areas such as mental health promotion and inpatient care.
Objective: In this follow-up study, the long-term influence of group living homes (GLHs) on informal caregiver distress was compared with modern yet regular nursing homes (NHs).
Method: Informal caregivers of GLH (N = 37) and NH residents (N = 49) were studied at the time of admission, 6 months thereafter, and approximately 24 months after admission. Repeated measures of ANOVA were performed to study group-by-time effects on psychopathology, role overload, and feelings of competence.
Result: All outcomes of psychological distress in GLH caregivers showed significantly greater decline compared with NH caregivers during the first six months after admission. The course of psychological distress stabilized in both caregiver groups after six months.
Conclusion: GLHs may have played a role in reducing caregiver burden during the first six months after the nursing home admission of the care recipient. The stabilization of caregivers’ psychological distress between T1 and T2 may indicate that there is no further room for improvement in the GLH and NH groups after six months. The implication would be that both GLHs and NHs succeeded in keeping caregivers’ distress relatively low over the long term. More knowledge is needed on whether and how caregivers’ psychological distress after institutionalization of the care recipient can be reduced to a greater extent.
Objective: Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness.
Methods: This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N = 241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires, comparing the two interventions and also to detect changes.
Results: The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being.
Conclusion: Young informal carers who take on the responsibility for people close to them; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support.
Practice implications: The non-significant differences show that each intervention can be effective, and that it depends upon the individual's preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy.
How do carer support programmes meet the needs of those caring for dependent mentally ill older people? Julie Hall reviews the evidence.
As more people with a serious mental illness such as schizophrenia live in the community, often with their own families, carers need increasing support. Reports on a small research study which found a link between carers' knowledge of the condition and their ability to manage problems, and between their sense of satisfaction with services and their communications with the mental health team.
Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.
Design/methodology/approach – The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.
Findings – Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is c