In South Africa, alternative care solutions such as foster homes, child-headed households, placements with relatives and Child and Youth Care Centres (CYCCs), are under pressure to provide for the large numbers of children who need care. Child and Youth Care Centres include facilities such as children’s homes, places of safety, secure care facilities and schools of industry or reform schools. South African legislation offers guidelines towards the fulfilment of children’s needs in CYCCs by providing them with Children’s rights. Unfortunately, not only is literature on children living in CYCCs limited both internationally and locally, existing literature regarding children’s care in CYCCs in South Africa points towards a gap between legislative guidelines and practice of care provision. For example, apparently, children in CYCCs are not afforded opportunities to voice their opinions, and many CYCCs in South Africa are not legally registered. As a result, an obvious indication of the care and interaction taking place between caregivers and children in CYCCs is not available. This inductive, qualitative study aimed to explore and describe the views of children living in Child and Youth Care Centres in the Vaal Triangle area, Gauteng, South Africa, in an effort to gain a better understanding of children’s perceptions of their interactions with their caregivers. One-on-one interviews with children from three CYCCs were conducted. Interviews were voice-recorded and later transcribed. While being interviewed, participants were asked to take part in a role-play exercise and to make a collage of their interaction and relationship with their caregivers. Data was analysed using Creswell’s spiral of analysis and Thematic Analysis by Braun and Clarke. The findings revealed four themes, which encompassed the perceptions of interactions with caregiver: 1. Daily activity with caregiver; 2. Special time with caregiver; 3. Behaviour management strategies; and, 4. Relationship with caregiver. The key findings indicate the valuable insight that was gained by affording children in CYCCs the opportunity to voice their perceptions on their interactions with their caregivers. This not only empowers children and fulfils their right to be heard, but also provides a better understanding of whether needs are being met or not. / MA (Psychology), North-West University, Potchefstroom Campus, 2015

Bakgrund: Huntingtons sjukdom (HS) är en neurologisk sjukdom som är genetiskt ärftlig och drabbar både kvinnor och män i lika stor utsträckning. Sjukdomen angriper nervcellerna i hjärnan som styr muskelregleringen, vilket leder till ofrivilliga rörelser. Kognitiv påverkan är ett annat symtom, liksom att talet och andningen påverkas. HS är en fortskridande sjukdom och indelas i olika faser. I den sista fasen är den drabbade helt beroende av andra. Sjukdomen brukar kallas för en anhörigsjukdom på grund av att det är de anhöriga som ofta intar vårdrollen till personen med HS. Syfte: Syftet var att beskriva hur anhörigvårdare till personer med Huntingtons sjukdom upplever sin livssituation, samt att beskriva de inkluderade vetenskapliga artiklarnas undersökningsgrupp. Metod: En beskrivande litteraturstudie baserad på tio vetenskapliga artiklar med kvalitativ ansats. Databaserna som användes till litteratursökningen var Cinahl och PsycINFO. Huvudresultat: Anhörigvårdare till personer med Huntingtons sjukdom beskrev en känslomässig stress som ofta ledde till depression och isolering. Deras liv blev åsidosatta då vårdandet upptog det mesta av deras tid samt att de kände sig ensamma i sin situation. Rädslan att själv drabbas var överhängande. Oförståelse och okunskap mötte dem ofta på vägen, både från sjukvårdspersonal och omgivning. Att erhålla stöd från familj, vänner och stödgrupper var betydelsefullt och önskvärt. Slutsatser: Anhörigvårdarna upplevde en känslomässig påfrestning genom vårdandet av sin familjemedlem med Huntingtons sjukdom. Sjuksköterskor bör ta lärdom av deras upplevelser för att förbättra vårdarbetet och bemötandet gentemot anhörigvårdarna. / Background: Huntington’s disease (HD) is a neurologic disease that’s genetic hereditary and can affect both women and men equally. The disease infect nerve cells in the brain that controls muscle regulation, leading to involuntary movements. Cognitive loss is another symptom, as well as influenced speech and breathing. HD is a progressive disease and is divided into various phases. In the last phase the victim is completely dependent on others. The disease is called a relative’s disease because the relative often takes the care role to the person with HD. Purpose: The aim of this study was to describe how family caregivers to persons with Huntington’s disease experience their situation in life. Furthermore to describe the included scientific articles study group. Method: A descriptive literature study based on ten scientific articles with qualitative approach. The databases used for the literature research were Cinahl and PsycINFO. Main results: Family carers of people with Huntington's disease described an emotional stress that often led to depression and isolation. Their lives were sidelined while caring occupied most of their time and they often felt alone in their situation. The fear of being affected themselves by the disease was imminent. Incomprehension and ignorance were common, both from the medical staff and the surroundings. Obtaining support from family, friends and support groups were significant and desirable. Conclusion:  Family carers experienced an emotional strain while caring for their family member with Huntington's disease. Nurses should learn from their experiences to improve nursing care and treatment against family carers.

Background: Leading researchers have called for more sophisticated research designs in caregiver intervention research; by using theoretically grounded interventions, considering the likely mechanism of action and using appropriate outcome measures. This thesis comprises a systematic review which evaluates the match between psychosocial interventions for dementia caregiver burden and the burden measure used to evaluate them and an empirical study which tests the psychometric properties of two caregiving outcome measures developed in Spain (Caregiver Guilt Questionnaire - CGQ and Dysfunctional Thoughts about Caregiving Questionnaire - DTACQ). The empirical study also considers the role of guilt and cognition (conceptualized as dysfunctional thoughts in Cognitive Behavioural Therapy and cognitive fusion in Acceptance and Commitment Therapy) in predicting depression in dementia caregivers. Systematic review: Results for the effectiveness of psychosocial interventions to reduce dementia caregiver burden are mixed. Caregiver burden is inconsistently defined and measured, which may contribute to the mixed results. This review sought to systematically evaluate the match between psychosocial interventions for dementia caregiver burden and the burden measure used to evaluate them. A systematic search identified 15 studies using the 22 item Zarit Burden Interview as an outcome measure. A systematic review using specified quality criteria indicated a low level of congruence between the content of the psychosocial interventions and the content of the Zarit Burden Interview used to evaluate the interventions in the majority of studies. Methods: 221 informal familial dementia caregivers completed a cross sectional postal questionnaire survey. Results: Using exploratory factor analysis, the factor structures of the CGQ and DTACQ identified in the Spanish development studies were replicated in this study. Adequate internal consistencies were found for both scales. Convergent validity was established for the CGQ with the measures of guilt and depression. The DTACQ correlated positively with general dysfunctional attitudes and negatively with amount of support received as predicted, but did not correlate significantly with depression. A multiple regression analysis identified caregiver guilt and cognitive fusion, but not dysfunctional attitudes as significant predictors of depression in dementia caregivers. Conclusion: The CGQ appears to be a reliable and valid measure of caregiver guilt in a British population of dementia caregivers, although further research is recommended to develop the DTACQ. The relative strength of cognitive fusion as a predictor of caregiver depression suggests that the way in which an individual relates to their thoughts should be tested as a mechanism of change in dementia caregiver interventions.

Alltfler människor kommer idag i kontakt med hemsjukvården, antingen som personal eller som patient. Det är sedan tidigare känt att våld är ett relativt vanligt förekommande arbetsmiljöproblem inom sjukvården. Utsattheten för våld tros vara större inom hemsjukvården där personalen ofta arbetar ensamma. Syftet med denna studie var att beskriva det våld som vårdpersonalen inom hemsjukvården utsätts för och vilka konsekvenser detta får. För att sammanställa den vetenskapliga forskning som finns inom området genomfördes en deskriptiv litteraturstudie. Tre kategorier utlästes; våldets utseende, förekomsten av våld samt våldets konsekvenser. Under dessa fanns i sin tur sex subkategorier; våldets omfattning, demografiska faktorer som påverkar våldets förekomst, fysiska konsekvenser, psykiska konsekvenser, konsekvenser på arbetsplatsen samt konsekvenser för vården/patienten. Resultatet visade att våldet kan te sig fysiskt eller verbalt och orsaka fysiska skador och psykiska konsekvenser för den utsatte. Detta kan även ge mer långtgående konsekvenser på vårdsituationen. Materialet i denna studie visar på ett begränsat kunskapsläge inom området där även tydliga och gemensamma definitioner saknas. / More and more people get in contact with home care these days, either as personnel or as a patient. Violence is known as a working environmental problem in health care. Exposure to violence is believed to be a bigger problem within home care because of the solitary working conditions in this sector. The aim of this study was to describe violence and the consequences of violence experienced by caregivers within home care. A descriptive literature review concerning the existing scientific research was made. Three categories emerged; kinds of violence, the incidence of violence and the consequences of violence. Attached to these three categories six subcategories was found; the extent of violence, demographic factors affecting the incidence of violence, physical consequences, psychological consequences, consequences on the workplace and care/patient consequenses. The result indicated that two types of violence, physical and verbal, can occur. These sorts of violence may cause physical and psychological harm to the exposed and may even lead to consequences in the caring situation.

Congenital heart disease (CHD) includes a variety of disorders that are characterized by structural defects to the heart or the coronary blood vessels that occur in fetal development. CHD occurs in 8 of every 1,000 live births. CHD often requires surgical repair and increases caregiving burden for families. The purpose of this study was to better understand the relations between illness-related parenting stress, coping resources, and psychological functioning in primary caregivers of young children with CHD. 69 parents provided demographic information and completed measures of parenting stress, self-efficacy, mindfulness, social support, and adjustment. Results revealed that psychological functioning in this sample is comparable to other chronic illness populations. In regression analyses, illness-related parenting stress was positively related and mindfulness was negatively related to psychological distress.

Master of Arts - Arts / Background: With the increasing prevalence of stroke in developing countries, like South Africa, the long-term care of stroke patients living with disabilities has substantial consequences for caregivers and their respective families. Method: This study investigated caregiver perceptions of their experiences, as well as familial implications due to the incidence of stroke within the family system. The assessment, in the form of a semi-structured interview, described the experiences post-stroke as perceived by six primary caregivers. It additionally addressed the challenges the South African context adds to these experiences. This was conceptualised within a systems and biopsychosocial framework, enabling the caregiver and family to be considered in a comprehensive and holistic manner. Results: Prominent themes associated with the caregiving of a stroke patient included: role changes, relationship disruptions within the family system, occupational and social implications, fatigue, anxiety, depression, as well as financial problems. An additional sub theme was that the emotional impact on the family system was greater in cases where younger children were involved. However, social support increased the caregivers’ ability to cope and this additionally assisted the rest of the family in their adjustment. Caregiver experiences were exacerbated by the inadequate support structures available within the South African context, with the lack of post-stroke education being an issue of great concern. Conclusions: Practical implications of this study are discussed, along with considerations of the limitations of the study and suggestions for future research.

Thesis advisor: Kathleen McInnis-Dittrich / Cancer caregivers are key stakeholders across the cancer trajectory, particularly in the final weeks of life and the bereavement period that follows. Current measures are limited in capturing caregiver assessment of the quality of end-of-life (EOL) care. Because none include caregiver perception of patient suffering or prolongation of death, the author sought to develop and validate a new measure of caregiver-perceived quality of EOL care that includes these dimensions. Data for this study comes from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). CwC investigators interviewed cancer patients and caregivers prior to the patient's death, and then caregivers again following the patient's death, on a range of psychosocial issues related to EOL care and bereavement. The present study represents a refinement of the author's previous work in developing and validating the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a comprehensive measure of caregiver-perceived quality of EOL care. Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The author examined the new measure's factor structure, and evaluated its reliability (using Cronbach's α) and convergent validity (via associations between CEQUEL and key EOL outcomes). CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). Higher scores (indicating better perceived quality of care) were positively associated with therapeutic alliance (ρ=.13; p≤.05) and hospice enrollment (z=-2.09; ≤;.05), and negatively associated with bereaved caregiver regret (ρ=-.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z=-2.06; p≤.05). Scores did not vary by caregiver characteristics other than religious affiliation, with Catholics scoring lower than non-Catholics, and those without religious affiliation scoring lower than those with an affiliation. Models predicting CEQUEL scores were compared using multiple regression analysis and AICc values. In unadjusted analyses, dying in a hospital, inpatient hospice length of stay (LOS) < 1 week, patients feeling seen as a whole person by their physician, and caregiver religiosity predicted CEQUEL scores. Only dying in a hospital (B=-1.65, SE=0.42, p=0.000) and inpatient hospice LOS < 1 week (B=-1.87, SE=-.69, p=0.008) remained significant in adjusted analysis. These findings suggest that CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. This study also identifies key factors that can be modified to improve caregiver evaluation of quality of care and associated bereavement outcomes. CEQUEL is the first scale of its kind to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment. Implications for research, clinical practice and policy are discussed. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

PhD (Physiotherapy), Faculty of Health Sciences, University of the Witwatersrand / Despite the improvements that have been made in health care over the years, stroke remains a serious public health problem in low, middle and high-income countries. Post-stroke, there are many consequences that manifest and these include mortality, morbidity and socioeconomic, affecting not only the stroke survivor but also the caregiver. These consequences are felt hardest in low and middleincome countries because they are the least able to deal with health related setbacks to development. Pressure for beds and the need to reduce hospitalisation related costs have resulted in early discharge home of patients culminating in caregivers playing a more significant role post-stroke. The role played by caregivers has of late received much attention and is well documented in highincome regions. Informal caregivers are particularly important in low resourced settings. Caregivers play an important role in the rehabilitation process of the stroke survivor. The discharge home of patients with stroke to unprepared caregivers is associated with burden or strain, which negatively affects the quality of life of not only the caregiver but the stroke survivor as well. The effect of a structured, individualised caregiver training programme on patients with stroke and their carers has not been established in sub-Saharan Africa in general and South Africa in particular. With this in mind, the aim of the study was to establish the impact of caregiver education on the morbidity of the stroke survivors and on the quality of life of the stroke survivors and their carers. The specific objectives of the study were to establish the: physiotherapy caregiver education programmes and associated content in use for managing patients with stroke at Chris Hani Baragwanath hospital, effect of caregiver education on the mobility of the stroke survivors, effect of caregiver education on the health related quality of life of the stroke survivor and the caregivers, effect of caregiver education on the ability of the stroke survivor to socialise and participate in community issues and also the patient and caregiver characteristics associated with caregiver strain post-stroke. To achieve the first objective, a self designed questionnaire was used to establish the physiotherapy caregiver education programmes and associated content in use for managing patients with stroke at Chris Hani Baragwanath hospital from the physiotherapists at the hospital. For the rest of the objectives, a stratified randomised controlled trial using concealed allocation with a broad entry and blinded outcome assessment at baseline, three, six and 12 months was used for data collection. The participants for the study were first time ischaemic patients with stroke admitted to Chris Hani Baragwanath hospital, Soweto, Johannesburg, South Africa. A total of 200 patients and their caregivers participated in the study. These were randomly assigned to either the control group or the experimental group. The caregivers in the experimental group were subjected to an individualised training programme just prior to discharge of the patient with stroke and at the three month follow up. The assessor was blinded to the group allocation of the patients and caregivers until after completion of the study. From the study, the one-year case fatality was 38%. The mean hospital length of stay for patients with stroke was six days and the average number of physiotherapy contacts for the stroke survivors was one. The content of the rehabilitation programme of patients post-stroke was well structured and appropriate at Chris Hani Baragwanath. However, there was no caregiver involvement or training during in-patient rehabilitation. The barriers to caregiver involvement included perceived high workload by therapists, short hospital length of stay, poor referral systems between clinicians and therapists of patients post-stroke and caregivers being unavailable during working hours for training purposes. Using the Barthel Index (BI) scores, 78% of the patients were functionally dependent at 12 months post discharge. None of the patients were fully independent in mobility and stair climbing. The experimental group had better mean BI scores at the three and 12 month follow up periods (p = 0.01 and p = 0.05 respectively) when compared to the control group. Caregiver education had the effect of improving the BI scores by one and 0.7 at the three and 12 months follow ups respectively. However, the functional abilities of the patients from both groups were still low at 12 months with averages of 13.3 and 12.6 for the experimental and control groups respectively (out of a possible 20). The overall patient mobility scores as measured on the Rivermead Mobility Index were low over the study period with averages of 9.1 and 8.5 for the experimental and control group respectively (out of a possible 15). However, the experimental group had slightly better Rivermead Mobility Index (RMI) scores, which were not statistically significant. Caregiver education had the effect of reducing the risk of death by 27% relative to that occurring among the control group patients. The health related quality of life of the stroke survivors was generally poor over the study period. The baseline means from their EQ-5D scores (for health related quality of life) were 42.4 and 43.7 for the control and experimental groups respectively, which rose to 67 and 68.8 at 12 months respectively post discharge. Caregiver education had the effect of improving patients’ EQ-5D scores by a factor of three and this was only at 12 months. The caregivers’ quality of life generally declined over the 12 months of the study period (more in the control group than the experimental group) from averages of 92 and 93 at three months (for the control and experimental groups respectively) to 83 and 86 (respectively) at 12 months. However, the experimental group had better mean EQ-5D scores (health related quality of life) than the control group (p = 0.001). Caregiver education had the effect of improving EQ-5D scores by factors of 3.4 and 3.6 at the six and twelve month follow up period. The ability to socialise and participate in community issues was poor. None of the participants could carry out single and multiple tasks without assistance at 12 months post discharge. More than 87% of the patients had mild to moderate difficulty with walking at 12 months post discharge and they were all unable to lift and carry objects, have fine hand use and move around with equipment without assistance. None of the patients was able to carry out domestic activities without any difficulty and consequently they could not prepare meals and do housework without assistance from helpers. All of the participants had mild to moderate and severe to complete difficulty in basic interpersonal interactions, complex interpersonal interactions and formal relationships. They all had mild to moderate difficulty engaging in recreation and leisure activities while 27% of the control group and 25% of the experimental group had severe to complete difficulty with community life at 12 months post discharge. The design, construction and building products and technology for both public and private use were cited as barriers to community participation. More than 50% of the patients also cited friends as being barriers to community participation but acquaintances, colleagues, neighbours and community members were cited as being facilitators together with personal care providers (caregivers). Transport services, systems and policies were also cited as barriers by more than 80% of the participants. Caregiver education did not seem to influence patients’ ability to participate in community issues given the similarities in percentages between the control and experimental groups. At three months post discharge, 89% of the caregivers in the control group and 92% of those in the experimental group were strained from caregiving duties. However, these percentages declined to 78% and 43% respectively at 12 months, showing the effectiveness of caregiver education. Caregiver education had the effect of reducing strain by a factor of 2.6 at 12 months. The patient characteristics that were associated with caregiver strain were the dependency levels in transfers, mobility, dressing, bathing, poor activities of daily living scores, patient anxiety/depression, pain and poor perceived health state. The only caregiver characteristic that influenced caregiver strain was the level of education. The reduced hospital length of stay, pressure for beds and possibly inadequate rehabilitation personnel levels means that its possible that some caregivers are not adequately trained to meet patient needs, although this needs to be confirmed with further controlled research. The current pressure on in-patient services at Chris Hani Baragwanath hospital is resulting in suboptimal exposure to rehabilitation of patients post-stroke. There is insufficient organised caregiver education at present. Structured individualised caregiver training has the effect of positively influencing the health related quality of life of the patients especially at six and 12 months post discharge. Caregivers for patients with stroke suffer from physical, financial and psychological problems, which negatively affect their health related quality of life. Currently, high levels of caregiver strain persist poststroke. Caregiver education however has the effect of reducing the decline in caregiver health related quality of life over time. Caregiver training did not positively influence patient mobility and this is most probably because the patients had very low or poor functional ability levels at discharge from hospital. However, structured and individualised caregiver training has the effect of improving patients’ quality of life and can help reduce deaths among stroke survivors. The patient ability to socialise and participate in community issues post-stroke is currently poor. This mainly stems from the poor functional ability levels, which necessitate dependency on caregivers. Compounding the low functional ability levels are the transport systems, services and policies, attitudes of friends and the design, construction and building products and technology for both public and private use, which are barriers to community participation. The high patient dependency levels result in caregivers being highly strained. The patient characteristics that influence caregiver strain are dependence in transfers, grooming, mobility, dressing, poor activities of daily living, patient anxiety/depression, pain and poor perceived health state (health related quality of life). The only caregiver characteristic that was associated with caregiver strain is the level of education. The early discharge home with little caregiver training calls for provision of community rehabilitation services preferably through domiciliary visits. Caregivers of patients with stroke should be assessed and treated for depression given its high prevalence among this cohort. The referral system between the local community health centres and the discharging hospital need to be strengthened to ensure access to rehabilitation by all patients post discharge from hospital. The referral to social workers during in-patient and out-patient rehabilitation also need to be strengthened to ensure processing of social grants to alleviate financial strain as is appropriate. Caregiver strain is a complex and multifaceted problem with no single causation or solution. As a result, further research is needed to establish the reasons for poor rehabilitation service provision post-stroke for patients and caregivers and find solutions to these. It is important to explore different methods of caregiver education programmes so that the method that yields the best results for both patients and caregivers can be established in our setting and internationally.

A qualidade de vida de pessoas com deficiência mental vem sendo investigada, nos últimos anos, sob a perspectiva de seus cuidadores que, na maioria das vezes, são os próprios pais. Em pesquisas e, mesmo socialmente, não é prática comum dar voz a pessoas com deficiência. Sabe-se que elas são capazes de pensar sobre seus sentimentos e de expressá-los; são capazes de trabalhar e, independentes, morar em sua própria casa, constituindo uma família. Assim, este estudo teve por objetivos: conhecer a opinião de adultos com deficiência mental leve em relação a sua qualidade de vida e a opinião dos cuidadores a esse mesmo respeito; avaliar a sobrecarga gerada na vida destes cuidadores, pelo cuidar das pessoas com deficiência. Participaram desta pesquisa 15 adultos (20 anos ou mais) com deficiência mental leve, e seus respectivos cuidadores. As pessoas com deficiência responderam a um instrumento que avalia a qualidade de vida (WHOQOL-Bref) e a uma entrevista estruturada. Os cuidadores responderam, além destes dois instrumentos, a uma escala que avalia a sobrecarga ao cuidar, a Burden Interview. Os dados provenientes das escalas de qualidade de vida e de sobrecarga foram analisados estatisticamente, conforme indicação da literatura, enquanto aqueles resultantes das entrevistas foram analisados quantitativamente e também a partir do Sistema Quantitativo-Interpretativo. Após a análise dos dados em separado, os resultados foram comparados entre si. Para ilustrar alguns detalhes de participantes que se destacaram no grupo, realizaram-se dois estudos de caso, sendo cada um com uma pessoa com deficiência mental e seu respectivo cuidador. Comparando-se os resultados obtidos a partir de todas as avaliações realizadas, obteve-se que, de maneira geral, as pessoas com deficiência apresentam-se mais satisfeitas e seus cuidadores mais insatisfeitos cada um com sua própria qualidade de vida. As pessoas com deficiência que possuem idade superior a 27 anos mostraram-se mais insatisfeitas com o domínio das relações sociais. No caso dos cuidadores, ao avaliarem a própria qualidade de vida, os índices de insatisfação com o próprio bem-estar físico estão associados à idade elevada e também ao elevado número de anos em que exerce a função de cuidar. Isto se verifica principalmente entre os cuidadores de alta renda, porém, entre aqueles de baixa renda familiar, existe uma grande satisfação com o seu bem-estar físico e com suas relações sociais. Em geral, os cuidadores não demonstraram alta sobrecarga advinda da rotina de cuidados. Ao tratarem, através das entrevistas, de assuntos relacionados com a independência, sociabilidade e sexualidade, os relatos das pessoas com deficiência e de seus cuidadores se tornam um pouco distintos, demonstrando alguns conflitos, principalmente no que diz respeito ao último tópico. Conclui-se, por fim, que as pessoas com deficiência mental são capazes de falar de suas próprias vidas e apresentam uma visão positiva das mesmas, expressando seus sentimentos e pensamentos a respeito da realidade em que vivem, de maneira bastante concreta. E ainda, seus cuidadores não se sentem sobrecarregados como os de outras populações, mas possuem dúvidas e receios que podem ser amenizados com a ajuda de profissionais da Psicologia. / The quality of life of people with intellectual disability has been investigated lately, under the view of caregivers who are their own parents most of times. That is why people with intellectual disability are often socially neglected. It is known those people are able to think about their feelings and express them; are able to work and to live in their own home independently, and to create a family. Thus, the present study aimed: to known the opinion of patients with mild intellectual disability related to their quality of life; the opinion of their caregivers about people with disability quality of life; to evaluate the burdens of taking care of people with intellectual disability. Fifteen people with mild intellectual disability participated to the study, adults (over 20 years-old) and their respective caregivers. People with disability answered to an instrument that evaluates quality of life (WHOQOL-Bref) and to an interview. Caregivers, besides answering both instruments, were submitted to a scale that evaluates the burdens of care, a Burden Interview. Data from quality of life and burden scales were statistically analyzed, while data from interviews were quantitatively analyzed and so did by Quantitative-Interpretative System. After data analysis, outcomes were compared. In order to recover some details, two cases reports with intellectual disability and their caregivers were carried out. Comparing outcomes obtained from evaluations of quality of life of people with intellectual disability and their caregivers, those people with disability are generally more satisfied with their own quality of life and those caregivers are less satisfied with the quality of life of whom they take care. People with disability over 27 years-old were more unsatisfied with socializing. Caregivers, as evaluating their own quality of life, dissatisfaction with their own physical welfare are associated to elderly and also to spending years of caretaking, mainly among those better paid. However, among those worse paid there is a high satisfaction with their physical welfare and socializing. Caregivers generally dont feel very burdened on taking care. Issues such as independence, sociability and sexuality, report from people with disability and their caregivers were quite different, showing some conflicts, principally the latter one. In conclusion, people with intellectual disability are able to talk about their own lives and present a optimistic view, expressing their feelings and thoughts about reality they live in a very concrete way. Moreover, their caregivers do not feel overburdened, but actually they have some doubts and fears that might be diminished with aid of psychologists.

As políticas atuais no campo da saúde mental estabelecem o atendimento ao sujeito em sofrimento mental preferencialmente nos serviços de assistência extra-hospitalar, em conformidade com o progressivo encerramento do modelo manicomial. Pesquisas recentes investigam esse contexto que tem como protagonistas o governo, sociedade, familiares e o sujeito em sofrimento mental. O sofrimento mental causa um impacto significativo na vida das pessoas. Os sujeitos sofrem pelos sintomas, por estarem incapacitados de participar de atividades de trabalho e lazer, por discriminação, por terem dificuldades para assumirem suas responsabilidades na vida, temendo ser um peso para outros. Os homens podem sofrer com essa situação de forma diferenciada das mulheres, uma vez que apresentam um encargo social e moral diferente. A dimensão masculina está estruturada na relação com o trabalho e a virilidade, a provisão financeira e a atitude protetora para com os membros da família. A situação de internação de homens jovens interfere nos seus planos de vida, no momento em que eles estão em meio a projetos de estudo, profissão, constituição de suas próprias famílias. Os cuidadores familiares também são acometidos em seus projetos de vida, pois cuidar de uma pessoa em sofrimento mental pode trazer satisfação como também uma carga extra de atividades, levando à necessidade de reorganizar-se em função do familiar doente. Na compreensão desse contexto, estabeleceu-se como objetivo geral deste estudo, conhecer a situação de vida e de cuidado familiar envolvendo jovens em internação psiquiátrica, considerando o momento anterior, o da internação e o pós-internação, através do discurso dos jovens e dos cuidadores familiares, no que diz respeito à compreensão sobre o sofrimento mental, a organização da rotina familiar, o relacionamento entre as pessoas e as concepções dos jovens e os cuidadores familiares sobre o sofrimento mental. Para isso realizaram-se três estudos de casos, localizados a partir de contato prévio com um hospital psiquiátrico do município. Os casos foram selecionados de acordo com os seguintes critérios: a) para os jovens: pessoas do sexo masculino passando pela primeira internação psiquiátrica, ou no caso de não ter sido a primeira, pelas primeiras internações; idade de no máximo 40 anos; diagnóstico principal em transtorno mental e comportamental. b) para os cuidadores familiares: familiares cuidadores convivendo com os pacientes antes e depois da internação, apresentando-se em condições de responder as perguntas e relatar suas situações de vida. Foram realizadas entrevistas, conversas informais, anotações em diário de campo, como também consultas a documentos. A análise qualitativa permitiu a formação de categorias centrais que apontaram uma compreensão sobre: identificação e causas do sofrimento mental; o momento da crise à hospitalização; internação e o período pós-alta (cotidiano, consultas médicas e tratamento). O material permitiu apontar para: a coexistência de diversas concepções sobre o Resumo sofrimento mental, o tratamento feito predominantemente com medicação, a sobrecarga dos cuidadores familiares e a presença de sintomas físicos e emocionais relacionados a ela, a espiritualidade e redes sociais como fatores de proteção à sobrecarga, a relevância dos relacionamentos familiares conflituosos para a internação hospitalar, incorporação dos homens jovens aos serviços de saúde mental por meio do tratamento medicamentoso, a necessidade de articular os serviços de assistência em saúde mental e as famílias, como também as redes de suporte social, como forma de acompanhálos nessas situações que requerem longo tempo de tratamento. / The current public policies of mental health in Brazil set the attendance of the person with mental disorder preferably in the extra hospital services. In conformity with that, they also set the progressive extinction of the asylum care model. Recent researches point out this context and its protagonists: the government, the society, the family members, and the person with mental disorder. The mental disorder episode causes a significant impact in people\'s lives. They suffer from the symptoms and also because they get unable to work and have leisure activities, from discrimination, having difficulties to assume life responsibilities and fearing being heavy to others. Men can suffer from this situation in a different way women can, once they have a different social and moral charge. The male dimension is related to work, virility, family financial support and protective attitude towards its family members. The young men psychiatric hospitalization situation interferes in the men\'s lives plans, in a moment they are in the middle of projects such as studies, career, constitution of their own families. The family caregivers (typically closer relatives) are also affected in their lives projects. Taking care of a person with mental disorder can bring satisfaction but also an extra load of activities for life. This situation leads to a need of reorganization towards the sick person. From this perspective the main objective of this research is to know the life situation and the family care involving young men in psychiatric hospitalization, considering the moment before, the hospitalization moment, and after psychiatric hospitalization through the informal family caregiver and the young men with mental disorder discourse, in what refers to the comprehension of the mental disorder, the organization of the family routine, the relationship among the family members, and the family caregiver\'s and young men\'s conceptions about the mental disorder. In the following step three cases studies were located from a previous contact with a psychiatric hospital in town, according to the following criteria: a) for the young man: the first hospitalizations in the psychiatric hospital; age under 40 years old; the main diagnosis in mental and behavior disorder; for the family caregiver: lived with the patients before and after the hospitalization, being in condition to answer the interviews and relate their life situations. There were interviews, informal talks, writings in the field diary, and documents consulting in this study. The qualitative analysis allowed the main categories\' formation that pointed out to: a coexistence of different conceptions of mental disorder; the treatment made mainly by medication; the family caregiver\'s burden; the presence of physical and emotional symptoms due to emotional burden; spirituality and social support net as protection factors for burden; the conflicted familiar relationship relevance driving to psychiatric hospitalization; the attendance of the young men with mental disorder in the public health services mainly by medicine; the necessity to articulate the public health services, and also the social support net as a way to attend them in these situations that asks for long term treatment.