The Challenges of Carers for People with Serious Mental Illness - Literature review Example

? Critical Literature Review: The challenges of carers for people with serious mental illness Date of submission: Introduction In recent years, social trends have emerged whereby patients and older people, who cannot independently continue their routine activities without support, need continuous service of informal carers. Informal carers play a pivotal role for the overall welfare of the society. In the due course, they incur heavy personal costs and often forego their own social and personal needs in line of duty. As a result, they often face mental stress, physical fatigue and lack of other various difficulties. Since the role of informal carers is very complex, rigorous and vital for community as a whole, it is essential that their own needs are satisfied adequately that will in turn help the patients in getting satisfactory services from their respective caretakers. A frustrated carer will never prove to be a good caretaker for a mental patient since he will have his own interests to pursue that might conflict and override with the needs of patients (Bandeira, 2007). The sacrifices made by carers need to be recognized and focus must be emphasized on identifying and addressing their individual needs. For this purpose, ‘respite care’ facilities are made available to carers at their convenience. Respite services refer to facilities of regular periodic intervals allowed to caretakers through formalized policies and arrangements of replacement personnel. Most of the developed nations have respite care integrated into health care systems as a mandatory practice. These are severe problems which ought to be critically researched into. However, the ground reality is that there is a shortfall of such literature resources and past research work that were effectively aimed at these issues and that can be used for evaluation of needs of carers (Grande et al., 2009). This paper provides a comprehensive peer literature review of former researches that have been conducted in this area and evaluates how each of the studies and methodologies succeeded or failed to achieve the planned outcomes. Critical Review of Literature Various literature resources were studied during this research and have been critically evaluated in respect of their overall effectiveness and contributions towards this field of study. The review has been bifurcated in the following major aspects that pertain to challenges faced by carers of mental patients: Objective burden Financial difficulties Flyckt et al., 2013 – These authors studied the connection of objective burdens carried with the informal carers of patients suffering from psychosis. Recruitments of 118 carers and 107 patients were conducted through various Swedish psychiatric facilities. The respondents were provided automated notebooks or paper diaries to mark their number of working hours over a period of four weeks and submit summarized report at the end of each week. On an average 22.5 hours and 14% of total earned income was spent by informal carers of psychotic patients in a week. The majority of expenses incurred were for groceries, accommodation rentals and clothing. Most of them claimed to have lost substantial productivity in their parallel activities at workplace and with family at home due to burdens of their caretaking duties. At the time of reporting at end of the week, the carers were instructed to recall all expenses borne by them during the former period. This was an alternative to the recording method and hence was expected to deliver similar results. However, carers often failed to fully recall their payment histories and when compared to their recorded credentials, there were significant differences. Surprisingly, majority of patients were more troubled by mental problems rather than financial problems. This suggested clearly that subjective burden overshadowed the effects associated with objective burdens and hence this research failed to partially prove its initially set hypothesis. Nevertheless, this study adopts a unique concept of dual methodologies to reveal how different results can be reached merely by employment of different methods. This research was also very beneficial as it produced results which were not anticipated at the time of planning. For instance, it was observed that female as well as old carers suffered more from subjective burden rather than objective factors. Also, they exhibited more failures at the time of recalling weekly history of expenses. Therefore, this study suggested that firstly healthcare support must be provided to informal carers due to heavy objective and subjective burdens carried by them in their duties towards patients suffering from psychosis. Secondly, it opened a new horizon for research whereby gender and age factors need to be further studied into to identify their patterns with burden. Vilaplana et al., 2008 – These researchers worked with an aim of identifying relationship between financial burdens on carers and their families due to presence of schizophrenia and similar mental diseases in outpatients. 231 schizophrenic outpatients were selected on an unbiased and random basis and were tested through various assessment methods. The processes used are globally accepted and recognized techniques such as Camberwell Assessment of Needs and Global Assessment of Functioning and Disability Assessment Scale. This is very advantageous since it creates comparability, credibility and benchmarked reliably results. Another 147 carers were also selected from within same localities and institutions and were required to burden questionnaires. Questions in these forms were mainly related to psychiatric histories, factors that cause excitement or depression, self-assessment scales and financial difficulties faced. Later, through algorithm and other statistical tools, correlation between the tested variables was determined. Results showed a clear relationship between objective burdens of carers and their families and the existence of mental diseases in outpatients being looked after. The highest proportion of household incomes spent in caretaking activities was for regular eating meals for patients, management of accommodation and premises and routine petty activities. This experiment generated some unique results which can be easily utilized to accurately determine the total profitability and accountability of expenditure incurred on each of them. This study, however, was conducted on a very small and limited scale and was unable to cover a larger or more diverse population. Therefore, much further work needs to be done in the future to study carefully and thoroughly the connection between objective burdens of opportunity cost of money and time and the mental disorders diagnosed in patients that are being treated. Also authors suggest that intervention programmes and voluntary services must be installed in place at such institutions to encourage carers to participate in such programs and benefit from its offered solutions. This will not only educate the carers about their caretaking duties and patients’ illnesses but also fulfill the social needs of carers through real-time networking with colleagues and outsiders on such programmes whenever they wish to. Roick et al., 2007 – In addition to factors studied by Vilaplana that affect family burdens, the researchers in this experiment studied a unique concept of influence established by national and environmental factors on burdens carried by family members who act as carers of schizophrenic patients. Patients from two separate regions, Germany and UK, were selected and algebraic regression analysis was conducted to study the strength of correlation between national demographics and family burdens. The experiment turned out to be a success when the hypothesis was proved right after results were obtained, revealing that carers in UK suffered from higher financial pressures as compared to ones belonging to Germany. It was observed that mental healthcare services provided in both territories differed largely in quality and infrastructure. Flexible working hours and well-established standards of practices were observed more in German healthcare industries, allowing carers to have opportunities to earn income on parallel dimensions. However, labor markets and job opportunities are better in UK and hence it was seen that a significant proportion of carers of UK were either self-employed or on paid work. This mitigated their financial burdens that stem from caretaking activities. This study neglected the comparability between respite services available in both regions. Also, German carers mainly belonged to rural areas while UK respondents were from main cities like London. As a result, there was substantial difference in lifestyles and household income levels between these two classes of participants. Further work is necessary that provides more diverse contrasting analysis amongst various countries and results can be easily generalized on global terms. Lloyd et al., 2013 – Very few studies have focused on the ethnic implications of stressful duties fulfilled by carers of mental patients. This study aimed at researching the difficulties faced by Indian parents looking after their British children suffering from schizophrenic conditions. The parents, originating from India, and their children, born and brought up in UK, were selected from popular mental healthcare community centers. Multiple-choice questionnaires were also prepared in an additional variant of Hindi language for facilitating the parents during interviews. Surprisingly, the household income of Indian families was relatively higher than average and thus financial difficulties did not become an obstacle in majority of the cases. However, the experiment did not succeed at proving that cross-cultural factors played any important part in affecting the level of objective or subjective burdens faced. This is one-of-a-kind study that focused on finding complications of financial and mental burdens carried by Indian families. Therefore, no conclusions can be treated as exhaustively reached unless further research work is conducted in this area. Subjective burden Mental distress Moller-Leimkuhler & Wiesheu, 2012 – This research revolved around the belief that attributes of patients and carers have strong influence on the challenges faced by carers in their duties. To test this, carers were selected from a large sample of healthcare institutions and mostly included parents of young mentally ill children. This created a prejudice in the selected sample and limited the study to only a small span of coverage. Various characteristics of patients as well as carers were studied closely through regression analyses and other statistical tools and results obtained were utilized to identify what attributes should be eradicated from patients as carers for ensuring smooth operations. Checklists and questionnaires were distributed to management of hospitals which in turn send copies to selected carers and patients for their feedback. The general demographic characteristics such as gender, race, age and professional credentials were mostly observed to be reasons that influence their caretaking roles. However, it was noted for upcoming researches by authors that experiments should be conducted whereby samples mainly consists of fathers of such children as well since the parents selected consisted mainly of women of children suffering from mental disorders. The authors gave similar recommendation of introducing respite services and intervention programs into the system. These institutions were suggested that proper replacement arrangements shall be made available for carers. Suro & Mamani, 2012 – This research study was similar to one carried out by Moller-Leimkuhler & Wiesheu; However, it targeted at testing two other hypothesis as well. The first was linked to the subjective burdens carried by caregivers and their relationship with mental health of carers and interdependence of carers on surrounding social elements. The second notion presented was related to the ethnic and cultural influences on objective and subjective burdens and indirectly on mental health of carers. 176 of such carers were selected who look after schizophrenic patients, of which 29% belonged to the ethnic minorities. The recruitment of sample was conducted through coordination with various mental hospitals and institutions as well as through advertisements in newspaper, inviting people who are engaged in caretaking of patients suffering from schizophrenia. The technique was highly effective since it enabled them to collect people from different areas of the city who couldn’t have had been approached or discovered otherwise. Structured interviews were conducted from participants as well as patients where possible and included questions demanding description of illness, role of family members, cultural influences and coping mechanisms deployed by carers. The results showed that subjective burden played a pivotal role in affecting mental health of carers of schizophrenic patients. High levels of mental distress are faced by these carers and hence they were strongly encouraged to socialize with their close ones and educate themselves further about the diseases that their patients are suffering from. However, the study failed to generate results consistent with majority of other previous researches in finding correct relationship between ethnicity and burdens. Results were unable to deduce a clear pattern and association between burden and mental health of carers and their cultural and ethnic backgrounds. One of the critical concerns of researchers in this study was the potential possibility that majority of carers, who volunteered through newspaper advertisement, only came to pursue their own incentive of benefiting from respite care and other services being offered by their project. As a result, their responses couldn’t be fully relied upon due to their fear that giving a candid reply might mitigate their chances of being enrolled for intervention services. Moreover, this research covered only a short period of time instead of following a longitudinal approach. Thus, the study couldn’t validate the effects of subjective and objective burden in the long run. Also, this study ignored the individual attributes and personal factors of carers that might contribute to burdensome feelings and mental distress. Ennis & Bunting, 2013 – Great emphasis has been laid on studying financial and mental burdens carried by carers of mental patients. However, only few experiments studied the effects of rigorous caretaking duties on personal health of carers. Family burden interviews were conducted as part of the experiment from a extensively large number of respondents. These participants were selected across a period of 2001 to 2003 and comprised a diverse, multicultural and nationally representative sample. Interviews were supervised face to face and setup was established at premises of participants only to make them feel comfortable. Interviews were lengthy and lasted for days. Binary logistic regression analysis was used as a technique to study the patterns between family burden and personal health of carers. Results showed partial success of experiment since the initial hypothesis, that family’s health status adversely affects the personal mental health of carers, was proved correct. Unlike other previous studies mentioned above, this study can be comfortably relied upon since the sample selection methods were highly effective and results were in line with the findings of other major researchers. Fortune et al., 2005 – This research is one of the few studies that are based on self-regulation model. It studies the correlation between mental stress faced by carers of schizophrenic patients and coping strategies adopted by them. The most unique horizon that is highlighted under this study represents the effects of perceptions of carers regarding the conditions of the patients. 42 relatives of such mentally ill patients were selected for this experiment. Various questionnaires were required to be filled, including appraisal forms, perception questionnaires and depression scale forms. Findings revealed that the carers, who believed that their relatives are suffering from severe forms of schizophrenia such that its effects are lethal and cannot be mitigated or controlled easily, achieved highest scores in tests conducted, showing greatest levels of mental stress. Moreover, the distinct findings of this study suggested different types of coping strategies as adopted by carers at different stages. A carer with only low forms of distress shall adopt strategies such as religious or spiritual sheltering, social support from close ones, development of positivity and confrontation. However, at higher levels of stress, carers tend to cope by blaming themselves for the sufferance caused to patients and holding themselves responsible for creating such circumstances. This study is cross-sectional and doesn’t cover longer time periods. The sample size was relatively smaller and evaluation results cannot be generalized. Therefore, before adoption of self-regulation model as an official framework, significant work is needed to draw further conclusions over longitudinal terms. Ogilvie et al., 2005 – There is no comprehensive study so far that focuses on burdens faced by family members of a patient of bipolar disorder. The hypothesis of this research might be very unique but nevertheless the findings were quite redundant since many former experiments have also analysed similar instances. It focuses on evaluating how nature of burdens varies for such carers from others who look after patients of some other mental diseases. It provides hypothesis that these types of carers suffer from higher levels of depression and stress. This literature resource doesn’t represent a conventional experiment to study the targeted phenomenon. Instead, this is a descriptive content material which compiles data from several resources, critically analyses them and provides a complete picture for how families face mental and financial burdens due to presence of bipolar disorder in one of the family members. The authors conclude that it is high time to lay emphasis on this issue instead of spending resources on redundant studies aimed at similar problems repeatedly. This agenda is neglected mainly due to its lack of ability of being projected and generalized over the masses suffering from similar conditions. The research suggests development of a clinical intervention plan that enhances quality of carer service for patients of bipolar disorder. Stigma and social isolation Gray et al., 2010 – One of the most important aspects of this entire dissertation revolves around the concept of exclusion. 65 people were selected through qualitative data collection methods and included healthcare personnel, mental hospital staff, social activists and voluntary workers. This diversified sampling enabled the researchers to reliably generalize and conclude that similar circumstances exist for all categories of medical practitioners. Respondents were interviewed and inquired of their viewpoints and experience on the extent of exclusions demonstrated by informal carers. Semi-structured techniques were successful in digging out impulsive stories from these professionals who have previously provided respite services to carers. Results showed that majority of carers were suffering from personal, social and financial exclusions, including isolation from social gatherings, lack of friendliness and fear of embarrassment or mockery. This study was very realistic as the researchers clearly explained that respite and other services will not be able to fully eradicate the problems of social exclusion since there will still be certain obstacles preventing carers from benefiting through these facilities. Lack of access and information alongwith financial constraints will always keep carers away from participating in intervention programmes and therefore professionals were recommended in this study to play their pivotal part in the society and respond to needs of carers and their families. Aldridge, 2006 – Another study, by Aldridge, provided a multiple-fold perspective on how child carers lack satisfactory experience and fulfillment of needs. He worked with the hypothesis that children who are caretaking for parents suffering from mental diseases often have delays and stoppages in their personal development and face negligence from families. This is a very significant issue as it shapes the attitudes and personalities of children in their subsequent years. This experiment included interviews with more than 50 professionals belonging to various fields such as healthcare, activist organizations and social welfare. They were inquired about their views about needs of young carers and suggestions for fulfilling those needs. This was a different research since it involved surveying with such individuals who come across cases of young carers in their everyday professional routines. Thus, they are in optimal positions to have instances of types of obstacles faced alongwith practical recommendations that can address these concerns. The findings revealed that child protection and similar movements are necessary to cater the essential needs and rights of such child carers. Since behavior depicted by mental patients is often unpredictable and violent, child carers suffer from frequent anxiety attacks and loss of control. Mostly respondents displayed disappointment that children are taken as immature beings and are hardly consulted about their opinions and requirements. This undermines their self-opinion and causes them to become negative, demoralized and incapable of defining or preferring their own needs over others. Thus, this research concluded that these youngsters should be interviewed and talked one-on-one to identify and develop an empathic understanding their basic needs and grievances which might be suffocating them internally. They need formal support to take significant caretaking decisions and trustworthy acquaintances to talk to and share their thoughts, opinions and situations. Research with such methodologies and viewpoints are very rare and therefore this provides significant contribution to the caretaking field. Zauszniewski et al., 2008 – The two abovementioned studies were focused on general implications of stigmatic circumstances faced by carers of mental patients. However, Zauszniewski et al captured a niche segment of female carers and proposed that they ought to be resourceful in order to overcome stigma, depression and stressful burdens. The four variables studied in this experiment include attributes of female family members, patients with severe mental disorders, the overall context and family setting and stigma faced by carer in worst situations. 60 female carers were selected, half of them belonging to minor ethnicities, out of a larger population that appeared for the experiment after reading brochures posted and pamphlets distributed in churches, community centers and regular markets. Questionnaires were filled out by participants, containing open-ended questions to collect demographic information and perceived burdens. The experiment partially failed at finding any patterns or relationship of factors like ethnicity, age and education of carers with stigma faced by them. Stigma was, however, very common in women taking care of patients of bipolar disorder; this is against the generally established fact found by most of the researchers that stigma is found most in carers who are caretaking for schizophrenic patients. Resourceful female carers were mostly observed to be in good control of their temperament and were able to combat against stigma easily. Mothers of younger patients mostly faced stigma since they held themselves responsible for sufferance caused by their offsprings. The sample size is although small but is ideally sufficient for studying demographic influences and stigmatic experiences. This is cross-sectional study and doesn’t spread over a long time frame. Lack of knowledge and access Cleary et al., 2005 – This study is one of a kind as its focus was entirely distinctive and unique. The researchers aimed at analyzing the nature of information that is demanded and essentially required by inpatients of mental disorders and their respective carers. This information plays a pivotal role in carers’ roles of caretaking duties while also in patients’ self-caring techniques for leading healthier lives. There are certain resources and knowledge that carers crave to have in order to enhance their professional positions and improve their personal and social relationships. To identify these sources, interviews were conducted of around 407 respondents including inpatients as well as carers. To keep a diversified portfolio of sample, both types of inpatients were selected: ones about to be discharged while others currently participating in community beneficiary services. The interviews were taken face to face instead of questionnaires as interviews are capable of extracting body language, verbal cues and other similar expressions which explain lot more about a certain response. Surveys and questions were similar with the patients as well as the carers, with major focus on evaluating what pieces of information they value the most. The timeline covered by this experiment is around 4 months which gives ample time for researchers to be able to collect sufficient information, analyse thoroughly all collected data and draw concrete conclusions. Due to large population being tested, the researchers were also comfortable in projecting the results onto the entire population and generalizing their conclusions for the society as a whole. When findings were assessed, it was found that although carers had different preferences according to individual circumstances, few instances were found to be very common amongst the majority of respondents. Most of the carers were of the view that in order to gain better confidence in fulfilling their caretaking duties, they need complete and comprehensive information on mental diseases that each of their patients is suffering from. Moreover, they need regular routine breaks from their duties as part of replacement or respite program so that they can catch up on their social lives and familial relationships. Finally, they claimed that they can only be more effective at their jobs if they were provided with adequate support and resources from families of patients, alongwith autonomy and power to take decisions on their own which they consider in their good faith to be for the best of patient. This study was very crucial as it revealed that in majority of cases, clinical information provided to carers is highly ineffective, poorly communicated and barely adequate to fulfill their needs. As a result, the carer is unable to carry out his duties in an efficient manner and the patient ultimately suffers. The researchers recommended that initiatives must be taken to provide facilities to carers for maintenance of their health and fulfillment of social needs. Additionally, they should be provided with exhaustive information packets relating to complete details of patients as well as their properly defined job descriptions. Finally, they should be provided authority to some extent that might be prerequisite in following their routine procedures and making regular decisions that enhance health of patients. Critical discussion Age, ethnicity and gender demographics of carers have significant impact on the quality of caretaking service obtained by mental patients. For instance, adult carers play significant roles in caretaking sector and have replaced nurses by assuming their complicated healthcare duties. A study found out that around 13% of people with ages above 65 years act as informal carers for mental patients or otherwise (Harris & Dip, 2005). Older people cannot cope with increasing demands of caretaking functions and therefore they must be given voluntary choices by professional social service organizations to opt for limited duties that they consider they can manage easily. These professionals must help older carers in deciding what activities they would be able to take responsibilities for and must provide them support at all times (Hemsley et al., 2007). Most of the researches have focused on the fact that carers are barely rewarded with adequate acknowledgment and compensated with sufficient emoluments. Most of the carers do not have access to earning horizons and hold weak liquidity positions. With only single earning member at homes, these people often have to bear opportunity costs of their daily wages that they could’ve earned but had to stay back home for taking care of their elders (Bytheway & Johnson, 2008). However, they failed to address the issue that old caretakers do not desire monetary compensation for these duties as at such age, they do not seek any competition, growth or financial stability. Instead, they are hungry for intangible benefits such as job satisfaction, honorable working environment and enhancement of self-respect through this work (Ribeiro & Paul, 2008). On the contrary, researches in the past have only paid minor attention to younger generations acting in roles of carers as these instances are barely seen in reality. The fundamental reason behind challenges faced by child carers is the sensitive age that they bear at the time of caretaking. At this age, all events and people leave a footprint on their raw minds which later develop to become a permanent feature of their personality. Therefore, it is evident from such studies that lack of mental capabilities of adults has adverse impact on intellectual growth of their young carers (Becker, 2007). Few studies presented hypothesis that majority of children, which are residing with parents who suffer from mental disorders, will exhibit psychological irregularities throughout their lives. However, these studies missed out on long-term and positive effects caused by this phenomenon (Daniel & Wren, 2005). Against the odds, some researchers, such as Cleaver, have suggested that most of child carers do not demonstrate such emotional distress in the long term as permanent characteristics. Moreover, these authors worked on further positive aspects of this entire propaganda. Through extensive research, they have shown that most of these child carers are very positive about the whole agenda of caretaking of their mentally sick parents as it apparently improves their proximity with parents (Cleaver et al., 2007). Additionally, research studied above on problems faced by carers belonging to minor ethnicities did not lay emphasis on language barriers being one of the most dominant issues. Most of them are unable to speak the natively spoken languages such as English and hence the communication barriers isolate and suffocate them as they have no one to share their concerns with. Mental patients and old people have very minimal tolerance levels and lose their temper when communication becomes difficult (Owen, 2006). This study was not comprehensive and Warren gave proposition that gender plays an important role as well and majority of people prefer to get a carer of the same sex to develop better comfort and sharing level with them (Warren, 2007). Ken et al. presented how carers become victims of mental stress and psychological problems due to overburdening of work. Another factor highlighted by Wong is the breach of personal hygiene. Carers might feel unhygienic and disgusting to help in excretory procedures, bathing, changing dirty clothes and diapers and responding to other such demands of patients which might be beyond own personal hygiene threshold levels. Since they cannot refuse, they often feel frustrated and suffocated inside for crossing their own established limits (Ken et al., 2010). In order to improve conditions of patients, attention must be focused on keeping the distressed carers aware of availability of all services and ensuring that they take maximum benefit out of these facilities. A survey revealed that a large proportion of patients who suffer from deadly mental diseases, such as schizophrenia and psychosis, made rapid recovery and got better when they were shifted to homecare facilities under a fulltime informal carer (Aoun et al., 2005). Nonetheless, majority of past studies have included experiments conducted on specific stereotyped samples drawn from ethnic minorities and hospitals and groups of people caring for patients suffering from mental disorders. Consequently, results obtained from such surveys might not be representative for entire population and cannot be reliably projected across the masses (Merrell et al., 2006). Conclusion Majority of the studies have revealed the fact that there has been a significant increase in number of carers who are committed to looking after their mentally ill relatives. The role of carers has been appreciated widely amongst masses in recent years and many activists have voiced their concerns on national level regarding the need for furnishing common necessities that are required by carers. The commonly accepted notion is that carers face complex challenges while acting in their caretaking roles and thus it is necessary to take reasonable measures to mitigate the risks associated with such issues. Carers get largely affected by their roles and activities of their patients, including effects on their physical health, mental stress, stigma amongst gatherings, regular routine, social lives, employment opportunities, commitment to families, financial resources, leisure activities and idle time for children (Caqueo-Urizar et al., 2009). Intervention and respite practices have been great source of benefits for the caring community as a whole. These procedures are capable of educating carers comprehensively and changing their perceptions so that they are in better position to understand needs of mental patients and are able to adopt best global practices for serving the society with positivity (Kikkert et al., 2006). Fortunately, in recent years, there have been visible developing initiatives observed which are targeted at ensuring realization of needs of carers. Various bodies have been formed which have policies of intervening and investigating into caretaking activities to rescue carers where they need assistance while replacing them if it is directly affecting interests and health of mental patients (Addington et al., 2005). References Addington, J., Collins, A., McCleery, A., & Addington, D. (2005). The role of family work in early psychosis. Schizophrenia Research, 79(1), 77-83. Aldridge, J. (2006). The experiences of children living with and caring for parents with mental illness. Child Abuse Review, 15(2), 79-88. Aoun, S. M., Kristjanson, L. J., Currow, D. C., & Hudson, P. L. (2005). Caregiving for the terminally ill: at what cost?. Palliative Medicine, 19(7), 551-555. Bandeira, M., Calzavara, M. G. P., Freitas, L. C., & Barroso, S. M. (2007). Family Burden Interview Scale for relatives of psychiatric patients (FBIS-BR): reliability study of the Brazilian version. Revista Brasileira de Psiquiatria, 29(1), 47-50. Becker, S. (2007). Global perspectives on children’s unpaid caregiving in the family research and policy on ‘young carers’ in the UK, Australia, the USA and Sub-Saharan Africa. Global Social Policy, 7(1), 23-50. Bytheway, B., & Johnson, J. (2008). The social construction of carers. Understanding Health and Social Care. An Introductory Reader, 2nd edn (Johnson J & De Souza C eds). The Open University, Milton Keynes, 223-231. Caqueo-Urizar, A., Gutierrez-Maldonado, J., & Miranda-Castillo, C. (2009). Quality of life in caregivers of patients with schizophrenia: A. Health and quality of life outcomes, 7, 84. Cleary, M., Freeman, A., Hunt, G. E., & Walter, G. (2005). What patients and carers want to know: an exploration of information and resource needs in adult mental health services. Australian and New Zealand Journal of Psychiatry, 39(6), 507-513. Cleaver, D., Cleaver, H., & Tarr, S. (2007). Child protection, domestic violence and parental substance misuse: Family experiences and effective practice. Jessica Kingsley Publishers. Daniel, G., & Wren, B. (2005). Narrative therapy with children in families where a parent has a mental health problem. Narrative therapies with children and their families, 121-139. Ennis, E., & Bunting, B. P. (2013). Family burden, family health and personal mental health. BMC public health, 13(1), 255. Flyckt, L., Lothman, A., Jorgensen, L., Rylander, A., & Koernig, T. (2013). Burden of informal care giving to patients with psychoses: A descriptive and methodological study. International Journal of Social Psychiatry, 59(2), 137-146. Fortune, D. G., Smith, J. V., & Garvey, K. (2005). Perceptions of psychosis, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: An exploration using self?regulation theory. British Journal of Clinical Psychology, 44(3), 319-331. Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J. & Todd, C. (2009). Supporting lay carers in end of life care: current gaps and future priorities. Palliative Medicine, 23(4), 339-344. Gray, B., Robinson, C., Seddon, D., & Roberts, A. (2010). Patterns of exclusion of carers for people with mental health problems—the perspectives of professionals. Journal of Social Work Practice, 24(4), 475-492. Hemsley, B., Balandin, S., & Togher, L. (2007). Older unpaid carers’ experiences supporting adults with cerebral palsy and complex communication needs in hospital. Journal of Developmental and Physical Disabilities, 19(2), 115-124. Harris, R., & Dip, G. (2005). Social aspects of caregiving for people living with motor neurone disease: their relationships to carer well-being. Palliative and Supportive Care, 3, 33-38. Ken, K., Okuno, J., Fukasaku, T., Tomura, S., & Yanagi, H. (2010). Factors affecting burden of caregivers for the elderly of Han Chinese and the Korean minority living in a community in northeast China]. [Nihon koshu eisei zasshi] Japanese journal of public health, 57(9), 816. Kikkert, M. J., Schene, A. H., Koeter, M. W., Robson, D., Born, A., Helm, H., ... & Gray, R. J. (2006). Medication adherence in schizophrenia: exploring patients', carers' and professionals' views. Schizophrenia Bulletin, 32(4), 786-794. Lloyd, H., Singh, P., Merritt, R., Shetty, A., Singh, S., & Burns, T. (2013). Sources of parental burden in a UK sample of first-generation North Indian Punjabi Sikhs and their white British counterparts. International Journal of Social Psychiatry, 59(2), 147-156. Moller-Leimkuhler, A. M., & Wiesheu, A. (2012). Caregiver burden in chronic mental illness: the role of patient and caregiver characteristics. European archives of psychiatry and clinical neuroscience, 262(2), 157-166. Ogilvie, A. D., Morant, N., & Goodwin, G. M. (2005). The burden on informal caregivers of people with bipolar disorder. Bipolar Disorders, 7(s1), 25-32. Owen, D. W. (2006). Demographic profiles and social cohesion of minority ethnic communities in England and Wales. Community, Work and Family, 9(3), 251-272. Ribeiro, O., & Paul, C. (2008). Older male carers and the positive aspects of care. Ageing and Society, 28(2), 165. Roick, C., Heider, D., Bebbington, P. E., Angermeyer, M. C., Azorin, J. M., Brugha, T. S., ... & KORNFELD, A. (2007). Burden on caregivers of people with schizophrenia: comparison between Germany and Britain. The British Journal of Psychiatry, 190(4), 333-338. Suro, G., & Weisman de Mamani, A. G. (2012). Burden, interdependence, ethnicity, and mental health in caregivers of patients with schizophrenia. Family process. Merrell, J., Kinsella, F., Murphy, F., Philpin, S., & Ali, A. (2006). Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK. Health & social care in the community, 14(3), 197-205. Vilaplana, M., Martinez, F., Negredo, M. C., Casacuberta, P., Paniego, E., Dolz, M., & Autonell, J. (2008). Do needs, symptoms or disability of outpatients with schizophrenia influence family burden?. Social psychiatry and psychiatric epidemiology, 43(8), 612-618. Warren, J. (2007). Young Carers: Conventional or exaggerated levels of involvement in domestic and caring tasks?. Children & Society, 21(2), 136-146. Zauszniewski, J. A., Bekhet, A. K., & Suresky, M. J. (2008). Factors associated with perceived burden, resourcefulness, and quality of life in female family members of adults with serious mental illness. Journal of the American Psychiatric Nurses Association, 14(2), 125-135. Read More