Doctor of Philosophy / Persons with acquired brain injury require continuing support and care in various aspects of their lives many years post-injury. Their care and support are mainly provided by family members. While respite is one of a range of critical support systems for carers and people with life-long disability, very little is known about respite in the area of acquired brain injury. The majority of the research on respite has been undertaken in developmental disability, mental health and in aged care, but there is no research to date about respite from the perspectives of the person with a disability, the carer and respite provider. There is also no research that examines these perspectives in the acquired brain injury literature. This study was aimed to address this gap in the literature by investigating respite from the perspectives of the person with acquired brain injury, the carer and the respite provider. It also examined the profile of respite services being provided in the Australian state of New South Wales as there had not been a comprehensive mapping of respite before. Survey methodology was used to gather information from persons with acquired brain injury and their carers who were members of the New South Wales Brain Injury Association, which is the peak advocacy association of people with brain injury. The same methodology was used to gather similar information from members of Interchange Respite Care New South Wales, which is a peak association representing respite providers in the state. The survey questionnaires were developed and designed after an extensive review of the literature, and were reviewed by experts in the fields of respite, disability and acquired brain injury. The survey questionnaire was also trialled on a sample of families. The survey questionnaires for the three participant groups shared several common sections, such as demographic information; factors influencing respite use; expectations of respite; and satisfaction with respite services used by persons or carers. The responses from the three participant groups were analysed and compared using logistic regression and descriptive statistics. The key findings of the study are (a) several characteristics or factors of the person with acquired brain injury and their carer were significantly associated with the use of respite, (b) there were several common factors that all three participant groups reported to influence respite use, and (c) there were several common expectations of respite among the three participant groups. Some of the characteristics or factors that were significantly associated with respite use included the severity of disability, the high level of dependency of the person with acquired brain injury, and the number of days spent in a coma. Common factors reported by all three participant groups to influence respite use included the stress level of the carer and the severity of disability. Factors reported to influence respite use appear to be consistent with the literature in developmental disability. There were common perspectives regarding the expectations of respite among all three participant groups, such as the need for trained and qualified respite staff; a wider range of respite services and more flexibility of respite service provision. The study also indicated a reported lack of sufficient respite for persons with acquired brain injury and their carers. Some of the findings of the study appeared to be consistent with the research literature on acquired brain injury; such as the majority of carers being mainly female; there is a reliance on informal networks for the care and support of the person with acquired brain injury; and the majority of the persons with acquired brain injury being male. The study also found that many respite providers in New South Wales had extensive experience in running a respite service. The findings of the study have important implications for policy direction and development, practice and service delivery, and research. In terms of policy direction and development, implications explored included: a flexible funding model that is responsive to the needs of carer and person with acquired brain injury, and adequately trained and qualified staff and volunteers play an important role in respite provision. Further research is required to understand empirically the benefits and quality of life outcomes over a period of time, such as what types and extent of respite are more beneficial for certain demographic profiles. The study highlights the perspectives of persons with acquired brain injury, their carers and respite providers. Respite is an important support system to enable persons with acquired brain injury to receive the continuing care and support from their carers. Respite in acquired brain injury is a new field that merits further research as it holds the potential for addressing the needs of people with acquired brain injury and their carers.

published_or_final_version / abstract / toc / Social Work and Social Administration / Master / Master of Philosophy

家庭照顧者的照顧負荷沉重，其多表達有支持性服務的需要，故針對家庭照顧者使用支持性方案之經驗，頗值得研究加以探討。本研究目的為瞭解家庭照顧者使用支持性方案的情形為何，進而探索使用服務期間從事活動的經驗，剖析家庭照顧者在使用支持性服務期間重新回復能量之過程。 本文採質性研究法，以深度訪談法蒐集資料，訪談樣本來自台灣失智症協會，共有4位失智症照顧者接受訪談。主要研究結果如下﹕ 1.家屬使用「各項家庭照顧者支持性方案」的情形，以瑞智學堂、瑞智互助家庭、家屬聯誼會為例，進而比較上述三項服務方案之異同：(1)學堂到互助家庭，家屬「聚在一起」和「舒緩的時間」更多；家屬更懂得「釋放關心」。(2)從學堂到家屬聯誼會：「家屬未經組織的團體聚會」到「成為團體成員後的聚會」。(3)服務對象與受惠對象方面，學堂服務對象以「失智長者為主，長者受惠較多」；互助家庭以「長者和家屬為主，家屬受惠較多」；家屬聯誼會以「家屬為主，家屬受惠較多」；但其實「長者與家屬之間具有相互性」，家屬獲益之後，更能以健康的身心靈來提供長者的照顧，相對的，長者的功能得以維持或減緩退化，亦有益於家屬提供照顧。 2.家屬的需求與動力是推動支持性方案重要的推展，從學堂到互助家庭的歷程，家屬與長者有三個階段的活動經驗，包含麻將班、烹飪班以及樂樂班，其顯示家屬有時間、空間以及活動參與的需求。 3.家屬使用服務期間從事活動獲得「心理喘息」的要素，可就休閒與休息、自我效能感、團體的歸屬感、採取行動的層面進行分析，分別為(1)休閒與休息：「才能展現」、「享受說話」以及提升生活「滿意感」；(2)自我效能感：「學習」、「突破」、「成就感」的過程，增進自我效能感；(3)團體的「歸屬感」，以及(4)社會貢獻的使命和生命的「意義感」，可見家屬由照顧者蛻變成助人者的軌跡。 / The caregivers in families carry a heavy responsibility, and many of them express the need for supportive services. As such, their experience in using supportive programs warrants further study and examination. In this study, we aim to first understand how such programs are being used. Next, we examine the restorative process in which caregivers use such services to gain respite. This study used the qualitative research approach, and collected data from Taiwan Alzheimer's Disease Association and included semi-structured in-depth interviews with four caregivers of the elderly with dementia. The research findings were listed below: 1.We studied the following three supportive programs and analyzed their similarities and differences: the School of Wisdom, the Family of Wisdom, and the Family Club. (1) As the group progresses from the School of Wisdom to the Family of Wisdom, family members have more and more time to spend together and respite time; they also tend to show more care for others. (2) As the group progresses from the School of Wisdom to the Family Club, unorganized group gatherings evolve into organized gatherings for members of the group. (3) The target participants for the School, the Family and the Club are, respectively, senile seniors, seniors and their families, and families; the beneficiaries of the programs are seniors, families, and families. However, there is also an interrelation between seniors and their families: families who benefit from improved mental, physical and spiritual health are better able to care for their seniors. Vice versa, it is easier for families to care for seniors who are able to maintain or mitigate the degeneration of their daily functions. 2.The needs and motivations of families are pivotal drivers for supportive programs. Throughout the evolution from the "School" to the "Family", families and seniors go through three stages of participation in activities, namely, mahjong classes, cooking classes and hobby classes. The progress reveals the families' need for respite time and space and their levels of participation. 3.Families enjoy a restorative mental break by participating in activities. We analyzed the key elements of this mental break: leisure and rest, self-efficacy, belongingness, and level of participation. (1) Leisure and rest: display of talent, enjoyment of talking, and enhanced satisfaction toward life. (2) Self-efficacy: enhanced self-efficacy through the process of learning, breakthrough and sense of achievement. (3) Belongingness: the sense of belonging to a group. (4) Level of participation: the sense of mission to contribute to the society and meaning of life demonstrated by the families show an evolution from being the caregiver to the one who helps others.

Doctor of Philosophy / Persons with acquired brain injury require continuing support and care in various aspects of their lives many years post-injury. Their care and support are mainly provided by family members. While respite is one of a range of critical support systems for carers and people with life-long disability, very little is known about respite in the area of acquired brain injury. The majority of the research on respite has been undertaken in developmental disability, mental health and in aged care, but there is no research to date about respite from the perspectives of the person with a disability, the carer and respite provider. There is also no research that examines these perspectives in the acquired brain injury literature. This study was aimed to address this gap in the literature by investigating respite from the perspectives of the person with acquired brain injury, the carer and the respite provider. It also examined the profile of respite services being provided in the Australian state of New South Wales as there had not been a comprehensive mapping of respite before. Survey methodology was used to gather information from persons with acquired brain injury and their carers who were members of the New South Wales Brain Injury Association, which is the peak advocacy association of people with brain injury. The same methodology was used to gather similar information from members of Interchange Respite Care New South Wales, which is a peak association representing respite providers in the state. The survey questionnaires were developed and designed after an extensive review of the literature, and were reviewed by experts in the fields of respite, disability and acquired brain injury. The survey questionnaire was also trialled on a sample of families. The survey questionnaires for the three participant groups shared several common sections, such as demographic information; factors influencing respite use; expectations of respite; and satisfaction with respite services used by persons or carers. The responses from the three participant groups were analysed and compared using logistic regression and descriptive statistics. The key findings of the study are (a) several characteristics or factors of the person with acquired brain injury and their carer were significantly associated with the use of respite, (b) there were several common factors that all three participant groups reported to influence respite use, and (c) there were several common expectations of respite among the three participant groups. Some of the characteristics or factors that were significantly associated with respite use included the severity of disability, the high level of dependency of the person with acquired brain injury, and the number of days spent in a coma. Common factors reported by all three participant groups to influence respite use included the stress level of the carer and the severity of disability. Factors reported to influence respite use appear to be consistent with the literature in developmental disability. There were common perspectives regarding the expectations of respite among all three participant groups, such as the need for trained and qualified respite staff; a wider range of respite services and more flexibility of respite service provision. The study also indicated a reported lack of sufficient respite for persons with acquired brain injury and their carers. Some of the findings of the study appeared to be consistent with the research literature on acquired brain injury; such as the majority of carers being mainly female; there is a reliance on informal networks for the care and support of the person with acquired brain injury; and the majority of the persons with acquired brain injury being male. The study also found that many respite providers in New South Wales had extensive experience in running a respite service. The findings of the study have important implications for policy direction and development, practice and service delivery, and research. In terms of policy direction and development, implications explored included: a flexible funding model that is responsive to the needs of carer and person with acquired brain injury, and adequately trained and qualified staff and volunteers play an important role in respite provision. Further research is required to understand empirically the benefits and quality of life outcomes over a period of time, such as what types and extent of respite are more beneficial for certain demographic profiles. The study highlights the perspectives of persons with acquired brain injury, their carers and respite providers. Respite is an important support system to enable persons with acquired brain injury to receive the continuing care and support from their carers. Respite in acquired brain injury is a new field that merits further research as it holds the potential for addressing the needs of people with acquired brain injury and their carers.

The thesis deals with the topic of palliative care of child patients/clients. The theoretical part explains the terms palliative, respite and hospice care of both, adult and particularly child clients and their families. The work shows the development of palliative care in our country as well as in the world and highlights the present modern elements of the palliative care approach to a child and his/her family. The practical part is based on a qualitative research that followed two goals and tried to answer two research questions. A research method of content analysis of a document containing data obtained from the Czech Statistical Office was applied on the first goal, aimed at mapping the possible need of palliative care of children in the CR. The number of children that might require palliative care in the CR was estimated upon the data. The second goal was to map the possibilities of palliative care services for children at the territory of the CR. A quantitative method of deep interview was used for implementation of the goal. The research sample consisted of 6 respondents from 6 workplaces. Only general and paediatric nurses from wards and facilities chosen upon the fact that nurses may more often meet an incurably ill child and his/her family were asked.This thesis and its conclusions are mainly aimed at professionals, but also to the general public. The research results inform on the possibilities of providing palliative care to children and their families at the specific departments. The work may be used for study purposes as well as for nurses working at hospices, children oncology wards, home care agencies etc. Paediatric nurses may make use of it as well.

This diploma thesis deals with respite service and issues with providing respite services to parents of children and adults with autism and mental retardation. The opening chapters focus on autistic spectrum disorder in combination with mental retardation and potential challenging behaviour. This work describes therapeutic process for persons with autism and mental retardation and it also describes the issues with providing social service to these persons. This thesis focuses mainly on respite services. The empirical part describes the availability of respite services for families with autistic person and mental retardation in the Czech Republic.

This study explored the perspectives of children whose complex health needs included respiratory technology dependence, and that of their parents, regarding community life and helpful patterns of coping and relationship. In-depth interviews were conducted with 7 children (3-18 yrs. old) and 8 parents. Survey data collected from 31 parents contributed to a convergent mixed methods design. Findings showed that children viewed themselves as normal, but experienced "a constricted life". Parents' active engagement in their child's life, as system navigators and advocates, was necessary to ensure their child's wellbeing. Key relational components included "authentic engaged presence", caring, competence, communication and collaboration. Effective coping patterns included reliable social support and both emotion-focused and problem-focused strategies. Contextual factors significantly affecting parental coping and relationships included family structure and child’s dependence on invasive respiratory technology (tracheostomy). Respite reported inadequate. Findings have practice and policy implications for health, respite and education systems, professionals and parents.

This study explored the perspectives of children whose complex health needs included respiratory technology dependence, and that of their parents, regarding community life and helpful patterns of coping and relationship. In-depth interviews were conducted with 7 children (3-18 yrs. old) and 8 parents. Survey data collected from 31 parents contributed to a convergent mixed methods design. Findings showed that children viewed themselves as normal, but experienced "a constricted life". Parents' active engagement in their child's life, as system navigators and advocates, was necessary to ensure their child's wellbeing. Key relational components included "authentic engaged presence", caring, competence, communication and collaboration. Effective coping patterns included reliable social support and both emotion-focused and problem-focused strategies. Contextual factors significantly affecting parental coping and relationships included family structure and child’s dependence on invasive respiratory technology (tracheostomy). Respite reported inadequate. Findings have practice and policy implications for health, respite and education systems, professionals and parents.

In this thesis, "Stages of social work with clients with Alzheimer's disease", I focused on the analysis of the most effective stages of social work. I found out that most respondents prefer a domestic informal care, corresponding to the stages of provided social work and unconditional acceptance of the patient. The sick person requires a sensitive holistic approach, accepting his individuality and ensuring dignity in all stages of the disease. The thesis was structured on the theoretical part, based on the findings of scientific literature dealing with the symptomatology and processes of Alzheimer's disease, characterized by basic treatment and care approaches. The theoretical part is followed by an own joint investigation, divided in a qualitative and a quantitative approach. The qualitative approach is based on a detailed case study which uses the methods of observation and interviews. Anonymous questionnaires were used for the quantitative method. The obtained data were summarized and analyzed. Due to the lack of data I concluded that the considered results can be obtained as irrelevant.