This qualitative multi case research asks how the needs of caregivers of primary malignant brain tumour (PMBT) patients are met through structured neuro-oncology programs in Canadian centres. Utilizing telephone interviews with eleven social workers and one psychologist the study analyses their perspectives on the scope and nature of services to brain tumour patients and their caregivers. PMBT is a rare and palliative disease often with neurocognitive and neurobehavioral effects posing special challenges for caregivers. Health care system reliance on family caregivers has resulted in significant implications for their emotional and physical risk. Findings show exclusive patient focused health care in ambulatory programs with fragmented care resulting in marginalization and invisibility of caregivers. This approach is inconsistent with current literature promoting collaborative family centered care, recommended for continuity of care throughout the illness trajectory. Recommendations focus on systemic caregiver service improvements.

In this dissertation 9 social workers working in Pretoria, Gauteng Province were interviewed. The focus of these interviews was regarding the use of direct observation as a measuring instrument for the purpose of assessing attachment of the caregiver-and-child's relationship. This information jointly with a two-fold literature study served as the foundation for a proposed preliminary practise framework. The completed research is described in the article format in two articles. Article 1 contains the literature study on attachment theory and its application to direct observation of attachment of the caregiver and child's relationship. Article 2 contains the literature study on direct observation measuring instruments for the purpose of assessing attachment of the caregiver-and-child's relationship. Direct observation measuring instruments used by experienced social workers were also examined by means of an empirical investigation. The practise framework acts as preliminary guidelines giving direction into the usage of direct observation as a structured measuring instrument in assessing the caregiver-and-child's attachment relationship. / Thesis (M.A. (MW))--North-West University, Potchefstroom Campus, 2009.

This study focuses on parental future planning for adults with intellectual disabilities. In recent years, the need for parents to engage in future planning for their offspring with intellectual disabilities has been increasingly emphasized. Within the literature, a number of approaches to future planning have been identified, including both formalized approaches (i.e., creating clear, explicit, and largely unchanging plans for the future of the individual with an intellectual disability) and more informal approaches (i.e., designating a person or a group of people to oversee the well-being of the individual with an intellectual disability without necessarily providing specific guidelines relating to the individual’s future care). Despite growing understanding that parents may approach developing future plans in different ways, to date, research on future planning has largely been focused on exploring formalized, concrete approaches to future planning. Using an Interpretive Description methodology, in which semi-structured interviews were conducted with 28 parents of adults with intellectual disabilities, this study sought to gain a greater understanding of parental future planning in real life practice in the province of British Columbia. Results revealed that while the parents in this study often utilized several future planning approaches -- both formal and informal -- when engaged in planning, they could be classified into two broad categories: Concrete Planners and Informal Planners. In addition, the results of this study also highlight key factors that may distinguish between parents who plan more formally and parents who plan more informally. Overall, these result highlight important avenues for future research and policy and practice; which, ultimately, may lead to important changes regarding how best to support aging parents of adult children with intellectual disabilities as they face the challenging task of planning for the post-parental care phase of their adult child’s life. / Graduate / megan.caines@gmail.com

Thesis (Ph.D.)--Indiana University, 2007. / Title from screen (viewed on September 21, 2007). School of Nursing, Indiana University-Purdue University Indianapolis (IUPUI). Advisor(s): Tamilyn Bakas, Sharon Sims, Mary L. Fisher, Janet Welch. Includes vitae. Includes bibliographical references (leaves 228-244).

The present study aimed to analyse the influence of the functional decline of elderly patients with dementia in the burden and the quality of life of their caregivers. This is a cross sectional study with descriptive and analytical approach, carried out in three reference services in elderly care and / or caregiver in the city of Maceió, Alagoas. The sample consisted of 170 individuals, 85 pairs of caregiver / elder, and the elderly diagnosed with dementia and their caregivers. Data were collected through interviews with the application of validated scales. We evaluated the burden and quality of life of the caregiver using the Zarit Burden Interview, and WHOQOLBREF quality of life assessment, respectively, cognitive status and functional capacity of older people with the Clinical Dementia Rating (CDR) scale and the Katz Index of Independence in Activities of Daily Living (ADL). Among seniors, there was predominance of females (70.6%) with average age of 79.9 (± 8.92), widowed (50.6%), educational level between one and four years study (34.1%) and per capita income below the poverty level (57.6%). The higher prevalence of dementia was Alzheimer's type (88.2%), mostly classified as severe dementia by CDR (56.5%) and dependence of six activities of daily living measured by the Katz Index (44.7%). As for caregivers, female sex (88.2%) with average age of 51.9 (± 12.0), married (55.3%), educational level over nine years of study (77,6%) and per capita income below the poverty (43.6%). The evidence showed an average burden of 35.2 (± 12.3). The highest average quality of life was found in the physical domain and the lowest in the environment. It was found statistically significant relationship between functional capacity and burden. Statistically significant inverse correlation was seen between burden and quality of life. These research findings suggest that functional decline of elderly with dementia showed an influence on the main caregiver s burden, which was identified more burden with intermediate levels of dementia / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / O presente estudo objetivou analisar a influência do declínio funcional de idosos com demência na sobrecarga e a qualidade de vida de seus cuidadores principais. Tratase de um estudo transversal, com abordagem descritiva e analítica, realizado em três serviços de referência na atenção ao idoso e/ou cuidador na cidade de Maceió, Alagoas. A amostra foi composta por 170 indivíduos, 85 pares cuidador/idoso, sendo os idosos com diagnóstico de síndrome demencial e seus respectivos cuidadores principais. A coleta foi realizada por meio de entrevistas com aplicação de escalas validadas. Foi avaliada a sobrecarga e a qualidade de vida do cuidador, através da escala Zarit Burden Interview e do Whoqol-bref, respectivamente, e o estado cognitivo e capacidade funcional dos idosos com a Clinical Dementia Rating (CDR) e o Índice de Katz. Entre os idosos, houve predomínio do sexo feminino (70,6%), com média de idade de 79,9 (± 8,92), estado civil de viuvez (50,6%), nível educacional entre 1 e 4 anos de estudo (34,1%) e renda per capita de até um salário mínimo (57,6%). A demência de maior prevalência foi a de Alzheimer (88,2%), sendo a maioria classificado como demência grave pelo CDR (56,5%) e dependência para as 6 atividades de vida diária pelo Índice de Katz (44,7%). Para os cuidadores predominou o sexo feminino (88,2%), com média de idade de 51,9 (± 12,0), estado civil casado (55,3%), nível educacional acima de nove anos de estudo (77,6%) e renda per capita de até um salário (43,6%). Foi evidenciada média de sobrecarga de 35,2 (± 12,3). A maior média de qualidade de vida foi encontrada no domínio físico e a menor no ambiental. Encontrou-se relação estatisticamente significativa entre a capacidade funcional e a sobrecarga. Correlação inversa estatisticamente significativa foi evidenciada entre sobrecarga e qualidade de vida. Os achados desta pesquisa sugerem que o declínio funcional dos idosos com demência mostrou exercer influência sobre a sobrecarga dos cuidadores principais, onde foi identificado maior sobrecarga com níveis intermediários de demência

The purpose of the present study was to examine the relationship between indirect and direct assessments of language and cognitive skills using the PEAK Relational Training System (PEAK). 29 participants were administered the PEAK-Direct Training Pre-Assessment (PEAK-DT-PA) and the PEAK-Generalization Pre-Assessment (PEAK-G-PA). Of those 29 participants, 28 of their caregivers and 10 therapists completed an indirect assessment the 368 skills listed in the PEAK-DT and PEAK-G curricula. The results of the study suggest that there was a strong correlation between the pre-assessments and the indirect reports from both the parents and the therapists for both modules. Additional correlations and interrater reliability across factors and individual test items were also investigated. Finally, trends in interrater reliability between caregiver report and direct assessments suggest that caregivers reporting for participants with lower overall scores more reliably identified if their child had a deficit with an advanced skill, but could less reliably identify if their child had a more basic skill. The opposite trend was found for caregivers reporting on participants with greater overalls scores. Implications of these findings for clinicians and future research are discussed.

abstract: The purpose of this study is to understand and explore the perspectives of caregivers of children receiving mental health services in the Southwest. The data collected examines areas of caregiver satisfaction of services including, perceived barriers and agency’s ability to effectively apply the System of Care model’s core values. Participants (N=100) were interviewed using the System of Care Practice Review, Revised. Data results include descriptive quantitative analysis, correlation and means comparisons, and thematic analysis of qualitative responses. The research indicates that as a whole, caregivers are satisfied with child mental health services. Data suggests that providers should continue to strive for improvement and excellence in several areas of service, including intervention effectiveness, family participation, cultural competence, communication and interpersonal relationships. / Dissertation/Thesis / Masters Thesis Social Work 2015

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.

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.

Background: Prenatal exposure to opioids, cocaine, and methamphetamine is associated with alterations in fetal brain that lead to structural changes in the brain postnatally, contributing to developmental and behavioral effects seen throughout childhood. Opioid exposure is associated with withdrawal in newborns, effects on somatic growth of infants, difficulty with executive functions and a tendency towards externalizing behaviors in older children. Cocaine and methamphetamine exposure are associated with effects on somatic growth, irritability and feeding issues in infants, problems with executive functions, and externalizing behaviors. Many substance-exposed children are placed in foster care and the pre-licensure training for foster parents does not specifically address how to care for substance-exposed children. Purpose: To create and evaluate a video that outlines common effects of prenatal exposure to opioids, cocaine, and methamphetamine, as well as evidenced-based caregiver interventions. Methods: The script for the video “Caring for Children with Prenatal Substance Exposure: Opioids, Cocaine, and Methamphetamine” was written by the author and evaluated by two clinical experts. The video was filmed and was presented to 6 licensed foster parents and 1 unlicensed adoptive parent who evaluated the video’s presentation at Devereux Foster Care Agency in Tucson, AZ using the Patient Educational Materials Assessment Tool for Audio/Visual (PEMAT-AV). Responses were entered into the PEMAT Autoscoring tool and component scores for understadability and actionability were calculated. Results: Both clinical experts evaluated the video’s content as being factual, and consistent with evidence-based research. Mean PEMAT-AV understandability and actionability scores were both 100%. Discussion: The video’s content and presentation are both strong as evidenced by high evaluation scores from clinical experts and foster parents, making it a useful educational tool for educating foster parents on caring for substance-exposed children. Further research is needed to determine if the viewing video increases foster parent knowledge and produces long-term change in parenting practices. Additionally, the video was designed to also be used to educate biological parents of substance-exposed children, but future studies are needed to determine if the video is an effective educational tool for this population.