Dissertations / Theses on the topic 'Informal family caregivers'
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1
Tate, Anne J. "All on the family informal caregiving in America /." online access from Digital Dissertation Consortium, 2006. http://libweb.cityu.edu.hk/cgi-bin/er/db/ddcdiss.pl?1432821.
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Smith, Paula Caroline. "Family caregivers in palliative care : perception of their role and sources of support." Thesis, University of Southampton, 2000. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.340333.
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Smith, Hinders Julie Ann. "Unmet Support Needs of Informal Caregivers of Older Adults." ScholarWorks, 2019. https://scholarworks.waldenu.edu/dissertations/6375.
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Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited. The purpose of this cross-sectional correlational study was to examine predictive relationships between contextual factors (caregiving relationship and type of illness) and environmental factors (rurality) and the unmet support needs (classes, service access, support groups, counseling, and respite) of informal caregivers of older adults. The theoretical framework was Bronfenbrenner's ecological systems theory. Archival data were drawn from the 2015 Behavioral Risk Factor Surveillance System optional caregiver module dataset provided by the Centers for Disease Control and Prevention. Findings from multiple logistic regression analysis revealed that spousal caregivers had 42.7% lower odds than adult child caregivers of reporting unmet support needs related to service access. Dementia caregivers had 2.05 times higher odds of reporting unmet support needs of counseling, 1.31 times higher odds of reporting unmet support needs related to service access, and 1.91 times higher odds of reporting unmet support needs for respite care, relative to other caregivers. Caregivers residing in a suburban county had 28.7% lower odds and caregivers not residing in a metropolitan statistical area (MSA) had 30.5% lower odds of reporting unmet support needs related to service access, relative to caregivers residing in the center city of an MSA. Health care leaders and policymakers may use the findings to distribute resources and tailor interventions to better meet the needs of informal caregivers of older adults.
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Sjölander, Catarina. "Consequences for family members of being informal caregivers to a person with advanced cancer." Doctoral thesis, Hälsohögskolan, Högskolan i Jönköping, HHJ, Avd. för omvårdnad, 2012. http://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-19819.
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Aim: The overall aim is to generate knowledge about consequences of informal caregiving for the family members of patients diagnosed with advanced cancer, over a one-year period, including the family members’ health, health-related quality of life, health care utilization, and associated costs. Furthermore, the family members’ management of their stressful daily life and the meanings of social support networks in the early stage will be explored in order to get deeper understanding. Method: The thesis is based on two quantitative prospective studies (I–II) and two qualitative cross-sectional studies (III–IV). Studies I–II involved data from the same study group of 36 family members to relative with cancer. Use was made of questionnaires about sociodemographic characteristics, informal caregiving, leisure activities and absence from work (Study I), also of the Short Form 36 Health Survey (SF–36) and EuroQol (EQ–5D) (Study II), during a 1-year period starting 3 months after diagnosis. Study I also included a telephone interview and a review of medical records. Twenty family members were interviewed in Study III, 17 in Study IV; and the interviews were subjected to latent content analysis. Results: The findings indicate that family members’ informal caregiving influence the risk of morbidity with increased health care utilization and lower health-related quality of life the year following the diagnosis. The number of hours spent giving the patients was highest in respect of emotional support. If professional caregivers as home help care assistants had provided the support, it would be equivalent to a cost of 327,000 SEK per 15 months. The medical records indicated increased morbidity with increased health service use (physician consultations), more psychiatric disorders and more musculoskeletal diseases during the follow-up period (Study I). No statistically significant differences in health-related quality of life (HRQOL) were found within the study group over the 1-year follow-up in either physical or mental dimensions. However, the family members did have mental HRQOL scores significantly lower than the norm-based ones as measured throughout the year by SF–36. In addition, results showed that older age and being a partner had a negative influence on HRQOL (Study II). Management employed by family members during the early stage after patient diagnosis was expressed by the theme Striving to be prepared for the painful, based on emotion-focused strategies except the problem-focused strategy to ‘Making things easier in everyday life’ both for the sick person and for themselves (Study III). The meaning of the social support network was expressed by the theme Confirmation through togetherness, covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Need of support, Desire for a deeper relationship with relatives and Network to turn to were identified as antecedents to social support. Social support involves reciprocal exchange of verbal and non-verbal information (Study IV). Conclusions: The results of this thesis provide knowledge of family members’ risk of morbidity, which motivates developing guidelines for preventing both physical and mental morbidity. Developing valid measurement of the meaning of social support network for the individual patient could encourage nurses and other health-care professionals to focus on family members’ personal networks as a way to strengthen their mental health.
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Merritt, Rebecca. "The Decision Making Process of Informal Caregivers of Dementia Family Members Regarding Nursing Home Placement." VCU Scholars Compass, 2010. http://scholarscompass.vcu.edu/etd/2334.
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The purpose of this study was to understand the decision making process of caregivers placing their elderly family members in a nursing home facility. Experiential Learning Theory (ELT) was used, as well as the Critical Incident Technique (CIT). ELT was utilized in an effort to understand the learning that took place during the caregiving experiences, and CIT was used to better understand the critical incidents that led the caregivers to seek nursing home placement. A sample of twelve former informal dementia caregivers between the ages of fifty-seven and eighty-seven was drawn from the metropolitan Richmond, Virginia area. In-depth interviews were audiotaped and provided the primary source of data for this study. An interview protocol consisting of eleven open-ended questions derived from current dementia caregiving literature guided the conversation between the researcher and the caregivers in the sample. A constant comparison method was used in this study. The findings revealed that there are a variety of reasons why informal dementia caregivers seek nursing home placement for their family members. Themes related to the decision making process to seek nursing home placement include (1) dementia related behaviors, (2) safety concerns, (3) emotional and psychological burden, and (4) unexpected medical intervention. Indicators of each theme found in this study suggest that providing informal care for an individual with dementia can be very overwhelming and challenging. Although there were some positive aspects associated with this form of caregiving, such as feelings of pride and self-worth, the overall consensus from this study was that dementia caregiving is a very difficult experience in which the primary caregiver had to ultimately seek formal placement in a nursing home for their family member for a variety of reasons.
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Osborne-Lewis, Emily Jane, and Shanta LaShawn Clardy. "The needs of informal grandparent caregivers and how they are met at the Kinship Family Center." CSUSB ScholarWorks, 2005. https://scholarworks.lib.csusb.edu/etd-project/2790.
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Seventeen grandparent caregivers, who have primary responsibility for one or more grandchildren and do not have a parent of the grandchildren living in the household, were interviewed to evaluate the effectiveness of the services offered by Kinship Family Center (KFC), a non-profit support agency for relative caregivers and the children in their care. Kinship Family Center is a program of the Central City Lutheran Mission and is funded by the San Bernardino County Department of Children's Services. The researchers found that KFC was an effective asset for informal grandparent caregivers. For grandparents, it was a source of support and comfort in their role of "second time around parents." For children, it served as a means to help identify with other children in similar situations.
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Koumoutzis, Athena N. "Age Differences in Stressors and Outcomes Among Young Adult, Midlife, and Older Adult Caregivers." Kent State University / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=kent1553839757877709.
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Reid, Roxroy Anthony. "Improving the Experiences of Informal and Formal Alzheimer's Disease and Dementias Caregivers." ScholarWorks, 2015. https://scholarworks.waldenu.edu/dissertations/1209.
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Informal and formal caregivers of persons with Alzheimer's disease and related dementias (ADRD) encounter a more difficult and unique set of challenges than do caregivers of individuals with general disabilities. If adequate caregiver supports are not provided, caregivers may experience increased strain as the disease progresses, increasing the likelihood of unnecessary institutionalization of their care recipients and increasing the cost to the public. Using rational choice theory and political systems theory, the purpose of this study was to differentiate between the phenomenological experiences of formal and informal caregivers of ADRD patients. The overall research was a qualitative design that used semi-structured interviews to collect data from 5 formal and 5 informal caregivers who were recommended by the local Alzheimer's association chapter. Data were analyzed using direct content analysis of recurrent themes including how policymakers might respond to needs for respite, support, and more resources. Research findings suggested more education is needed about the disease and how best to give care for both formal and informal ADRD caregivers. Furthermore, distinctions between formal caregivers and informal family caregivers and their care recipients were identified, and these details should be noted by policymakers. Informal ADRD caregivers would benefit more from the research findings. Particular benefits would include financial supports, additional funding for caregiver respites, more education, and better care methods for ADRD care recipients. These recipients are rapidly growing in numbers and pose unique 21st century socioeconomic challenges to informal caregivers.
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Al, Awar Zeina. "Using HIT to Support Informal Caregivers of Cancer Patients at Home: a Needs Assessment." Thesis, Université d'Ottawa / University of Ottawa, 2016. http://hdl.handle.net/10393/34112.
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Introduction: This research investigated the requirements of an HIT solution that is usable and useful to informal caregivers of cancer patients on home palliative care.
Methodology: A needs assessment method was used with an exploratory and a confirmatory stage. Eight semi-structured interviews and two focus groups were used for data collection. Qualitative content analysis was used to analyse caregiver experiences with both inductive and deductive coding.
Results/Discussion: Expressed and unexpressed caregiver needs were extracted into four categories, Implementation, Presentation, Information, and Practical Caregiving, and used to create the application requirements. Five user personas were created based on caregiving intensity and the functional level of the patients, a method of tailoring the application content to the different personas was created, and a low-fidelity prototype of the application was designed.
Conclusion: The findings of this research can improve the preparedness and coping of informal caregivers of cancer patients on home palliative care.
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Weierbach, Florence M. "Who Provides Care in the Home for the Tri-State Area Elderly: Sn Assessment of Informal Family Caregiver’s Perception of Health?" Digital Commons @ East Tennessee State University, 2013. https://dc.etsu.edu/etsu-works/7401.
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Steiner, Adrienne Claire. "The Effect of Family Centered Music Therapy Sessions on Relaxation States of Informal Caregivers of Hospice and Palliative Care Patients." UKnowledge, 2014. http://uknowledge.uky.edu/music_etds/33.
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Advances in healthcare and shifts toward patient and family centered care have allowed healthcare professionals to focus on the entirety of a patient and what affects his/her health. In noting such changes, and in consideration of what affects quality of life, findings in the literature address the physiological and physiological differences between those who are caregivers versus those who are not caregivers. This study investigated the relaxation state of those who were considered informal caregivers of hospice and palliative patients in an acute hospitalized setting.
A family centered music therapy session was conducted utilizing a music-‐ assisted relaxation intervention incorporating a loving-‐kindness meditation. A total of 29 participants, 15 males and 13 females, took part in the study and 28 participants were included in data analysis. Findings from the study suggest an increase in relaxation scores after taking part in the brief intervention. Participant survey responses indicated participants’ agreement with feeling more relaxed and supported as a caregiver after the intervention. Survey results also indicated participants’ willingness to try some relaxation techniques from the study intervention on their own.
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Frank, Kristal L. "A sensemaking exploration of work-eldercare crisis and the co-construction of informal work-eldercare policies." Thesis, Lethbridge, Alta. : University of Lethbridge, Faculty of Management, c2013, 2013. http://hdl.handle.net/10133/3388.
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This study will contribute to existing work–family research by bringing a rich emic
understanding of caregivers’ experience with work-eldercare crisis. I adopted Weick’s
theory of organizational sensemaking (1995) as method and methodology for this
research. I collected data via open-ended, semi-structured interviews with employees who
balance full-time employment with caregiving for an elderly person; then I subjected the
transcribed texts to a detailed thematic analysis. This analysis helped me identify three
main themes that reflect the processes participants use to ‘make sense’ of their
experiences. The results of this study suggest that caregivers enact the work environment
to attempt creating balance—and to enlist support and assistance—by strategically
engaging in interpersonal interactions with others at work about their eldercare activities.
They combine past experience with the knowledge obtained from these interactions to
develop heuristic scripts, and then use them to enable understanding and guide future
behaviour and actions.
This study demonstrates that sensemaking is a useful analytical framework through
which to examine employees’ experience of the work-family interface. The findings of
this research offer insight into the processes involved in the social construction of
informal organizational policies; the implications provide a foundation to develop better
models of organizational response towards employees’ work-eldercare needsxi, 171 leaves ; 29 cm
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Gusdal, Annelie K. "Family caregiving for persons with heart failure : Perspectives of family caregivers, persons with heart failure and registered nurses." Doctoral thesis, Mälardalens högskola, Hälsa och välfärd, 2017. http://urn.kb.se/resolve?urn=urn:nbn:se:mdh:diva-35194.
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Heart failure is a growing public health problem associated with significant morbidity and mortality. Family support positively affects outcomes for the person with heart failure while also leading to caregiver burden. Registered nurses have a key role in supporting and meeting the needs of family caregivers. The overall aim was to explore the situation and needs of family caregivers to a person with heart failure, and explore requisites and ways of supporting and involving family caregivers in heart failure nursing care. Two interview studies, one web survey study and one intervention study were conducted between 2012 and 2017. A total of 22 family caregivers, eight persons with heart failure and 331 registered nurses participated in the studies. Family caregivers' daily life was characterized by worry, uncertainty and relational incongruence but salutogenic behaviours restored new strength and motivation to care. Family caregivers experienced that their caregiving was taken for granted by health care professionals. Family caregivers expressed a need for a permanent health care contact and more involvement in the planning and implementation of their near one’s health care together with health care professionals. Registered nurses acknowledged family caregivers’ burden, lack of knowledge and relational incongruence. A registered nurse was suggested as a permanent health care contact to improve continuity and security. Registered nurses neither acknowledged family caregivers as a resource nor their need for involvement. Registered nurses working in primary health care centres, in nurse-led heart failure clinics, with district nurse specialization, with education in cardiac nursing care held the most supportive attitudes toward family involvement in heart failure nursing care. Family health conversations via telephone in nurse-led heart failure clinics were found to successfully support and involve families. The conversations enhanced nurse-family relationship and relations within the family. They also provided registered nurses with new, relevant knowledge and understanding about the family as a whole. Family health conversations via telephone were feasible to both families and registered nurses, although fewer and shorter conversations were preferred by registered nurses. This thesis highlights the divergence between family caregivers’ experiences and needs, and registered nurses’ perceptions about family caregivers’ situation and attitudes toward the importance of family involvement. It adds to the knowledge on the importance to acknowledge family caregivers as a resource and to support and involve them in heart failure nursing care. One feasible and successful way is to conduct Family health conversations via telephone in nurse-led heart failure clinics.
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Gallrach, Franziska. "Quality of Life of People with Dementia and their Informal Caregivers - A Clinical and Economic Analysis in New Zealand." Thesis, University of Canterbury. Health Sciences Centre, 2010. http://hdl.handle.net/10092/4818.
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Background:
Multivariate analyses of quality of life (QoL) in dementia are relatively rare. This study was the first aiming to measure QoL of persons with dementia and their informal caregivers in New Zealand. To date, it is also the only study examining what interventions from primary and secondary care in New Zealand are helpful for enhancing QoL and what these interventions cost.
Methods:
In this prospective cohort study, questionnaires (including the Quality of Life-Alzheimer’s Disease Scale and the Neuropsychiatric Inventory) investigating various QoL-domains were administered to 53 outpatients of a memory clinic recently diagnosed with dementia, and their caregivers at baseline and 12-month follow-up. Time and resource utilisation were assessed in order to identify direct and indirect costs using questionnaires and diaries (over 12 months).
Results:
Cognition scores of persons with dementia (PWDs) ranged from 49 to 91 on the Modified-Mini-Mental State Examination (3MS); scores on the Clinical Dementia Rating Scale (CDR) ranged from 0.5 to 3, with 83% of PWDs being in the early stages of the illness at baseline (CDR ≤ 1).
Most PWD measurements confirmed the predicted correlations including a strong link between PWDs’ and caregivers’ QoL. Many correlations remained stable over 12 months. Combined information and support interventions achieved significantly better PWD and caregiver QoL than single interventions. Direct costs (including costs of informal caregiving time) increased with an increase in dementia severity, neuropsychiatric and behavioural symptoms and functional limitations. There was a clear trend that caregivers were more distressed if patients received less in-home support. Direct non-medical costs of PWDs living at home did not increase with the severity of PWDs’ cognitive impairment. In 2008/09, there were an estimated 1,896 persons in Canterbury providing a total of 5.47 million hours of care for PWDs. This unpaid care had a value of NZ $135.8 million. Caregivers were much more likely to be depressed if they had a low income. More than one-third of family-caregivers (39.5%) thought that financial compensation for their time spent caring would enable them to look after the PWD at home for longer.
Conclusions:
A mix of different clinical and non-clinical (including economic) factors can predict QoL in dementia. The strong link between PWDs’ and caregivers’ QoL calls for a systemic approach in dementia care. QoL can be sustained over 1 year in a cohort of mainly early dementia patients and their informal caregivers. Developing psychosocial and financial incentives could be a key factor to support PWDs and their informal caregivers in New Zealand, consequently enabling them to live in the community for longer. These outcomes also have implications for health professionals and social policy makers which must be addressed as health practitioners and the wider community strive both for best practice and for cost-effective care of our increasingly ageing population.
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Kjellgren, Josefine, and Carola Crouthon. "Caring for a loved one : A literature review of older familycarers´experiences." Thesis, Ersta Sköndal högskola, Institutionen för vårdvetenskap, 2011. http://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-1238.
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Bakgrund: Den äldre populationen är växande i Sverige och anhörigvårdarnas insatser ökar i omfattning. Detta innebär förändringar i anhörigvårdarnas livssituation och kan upplevas både positivt och negativt. För att få ett väl fungerande vård- och omsorgssystem är det viktigt att få en övergripande bild av anhörigvårdarnas erfarenheter. Detta för att kunna främja och bibehålla deras livskvalitet. Syfte: Syftet med studien är att studera äldre anhörigvårdares erfarenheter av att vårda en närstående. Metod: Litteraturstudie som är baserad på 9 vetenskapliga artiklar. Både kvalitativa och kvantitativa artiklar har använts och dessa har granskats och analyserats. Kriterierna för urvalet var att de skulle innefatta människor över 60 års ålder, vara publicerade efter 2001 samt skrivna i industriländer som kan passa in på Sveriges sjukvård. Resultat: Resultatet beskriver anhörigvårdarnas erfarenhet av att vårda en närstående som en förändring som påverkar även deras livssituation. Studien presenteras i två kategorier med sju underkategorier: Anhörigvårdarens livssituation och Den viktiga interaktionen med omvärlden. Diskussion: Erfarenheterna av att vara anhörigvårdare var av olika karaktär och påverkades av yttre och inre faktorer. Där en del anhörigvårdare kände en förlust av egen tid upplevde andra en ökad samhörighet med den närstående. Att bemästra sin roll som anhörigvårdare verkade till stor del grunda sig i personens inneboende egenskaper, även det sociala nätverk anhörigvårdaren hade upplevdes betydelsefullt. Benner och Wrubels omsorgsteori låg till grund för diskussionen och vissa begrepp förankrades: omsorg, person, situation, kontext, stress, bemästrande, livscykel, hälsa (välbefinnande) och ohälsa.
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Hyde, Emily. "Perception of healthcare professionals and use of formal-informal resources by families with son with chronic mental/physical illness." Virtual Press, 1995. http://liblink.bsu.edu/uhtbin/catkey/1020157.
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The purpose of this secondary analysis of Malone's (1993) study was to identify formal and informal resources used by families with an adult son with chronic mental or physical illness. It also explored the identified perceptions of health care providers by the families in this study. This study was guided by the Resiliency Model of Family Stress, Adjustment and Adaptation (McCubbin & McCubbin, 1993).The sample population was patients who were receiving outpatient care from Valley Mental Health Center and University Hospital Neurology Clinic in Salt Lake City, Utah, and families which met certain criteria. The data of 42 respondents of the original 68 in Malone's (1993) study were perused for trends and themes about the use of formal and informal resources and perceptions of health care professionals using the process of secondary analysis.Findings revealed that the outpatients and families used six formal resources and seven informal resources. Family resources accounted for 44 percent of the total utilization of informal resources by the respondents. Hospital/clinics accounted for 24.3 percent of the total formal resources used by the respondents. Findings also revealed that perceptions of health care professionals by the respondents was negative.With the increase of chronic illnesses, the recommendations and implications for nursing identify that patient education in the future will undoubtedly be the most vital and crucial component to an individual's success/failure to adjust to the chronic illness. With the additional knowledge base, prevention of unnecessary anxiety related to the chronic illness would promote a more positive environment for the patient. In addition, both the patient and family could make that smooth transition into the adaptation phase and function effectively with the chronic mental or physical illness.School of Nursing
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Joubert, Janetta Debora. "A profile of informal carers in South Africa." Diss., Pretoria : [s.n.], 2005. http://upetd.up.ac.za/thesis/available/etd-12022005-140227.
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Nicolai, Ingra Venturini. "Fatores de vulnerabilidade e proteção associados à função de cuidador familiar principal de paciente oncológico." Pontifícia Universidade Católica de São Paulo, 2019. https://tede2.pucsp.br/handle/handle/21984.
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Conselho Nacional de Pesquisa e Desenvolvimento Científico e Tecnológico - CNPq
Cancer is an aggressive disease that affects not only the carrier, but your family as a whole. Faced with the diagnosis and possible loss of a loved one, the family experiences moments of extreme suffering, anxiety and insecurities, in a scenario full of doubts and adaptive demands related to the treatment. It is necessary to look and give due attention to family caregivers who, even without having the disease itself, carry it within themselves, with feelings similar to those of the sick person or even more serious than those. It is necessary to look, mainly, for those who dedicate themselves integrally to this care. The present research aims to understand the vulnerability and protection factors associated with the role of the main family caregiver of cancer patients. Twelve family caregivers of cancer patients were interviewed. In the data collection, an interview script was used and active listening was practiced. The analysis was qualitative. The results revealed vulnerability and protection factors associated with the main family caregiver of cancer patients. Lack of information; silence; difficult access to health services; the existence of unprepared professionals; an inflexible and conflicting family structure, are factors that may contribute to the vulnerability of the main family caregiver of cancer patients. On the other hand, easy access to health services; the support offered by trained professionals; knowledge about the disease, treatment and correct information about the patient's clinical condition; self-care; spirituality and religiosity; support groups; a flexible family structure that allows the division of tasks, are factors that can contribute to the protection of the main family caregiver of cancer patients. These results reinforce the need for the caregiver to receive the necessary support to be able to assume this function in a healthy way, predicting physical, psychological and social damages
O câncer é uma doença agressiva que não afeta apenas o portador, mas a sua família como um todo. Frente ao diagnóstico e a possível perda de um ente querido, a família vivencia momentos de extremo sofrimento, ansiedade e inseguranças, em um cenário repleto de dúvidas e exigências adaptativas relacionadas ao tratamento. É necessário olhar e dar a devida atenção aos cuidadores familiares que, mesmo não possuindo a doença propriamente dita, carregam-na dentro de si, com sentimentos semelhantes aos do indivíduo adoecido ou ainda mais graves do que os do mesmo. É necessário olhar, principalmente, para quem se dedica integralmente a esse cuidado. A presente pesquisa tem como objetivo entender quais os fatores de vulnerabilidade e proteção associados à função de cuidador familiar principal de paciente oncológico. Foram entrevistados 12 cuidadores familiares de pacientes oncológicos. Na coleta de dados foi utilizado um roteiro de entrevista e praticada a escuta ativa. A análise foi qualitativa e os resultados revelaram fatores de vulnerabilidade e proteção associados à função de cuidador familiar principal de paciente oncológico. A falta de informação; o silêncio; o difícil acesso aos serviços de saúde; a existência de profissionais despreparados; uma estrutura familiar inflexível e conflituosa, são fatores que podem contribuir para a vulnerabilidade do cuidador familiar principal de paciente oncológico. Por outro lado, o fácil acesso aos serviços de saúde; o suporte oferecido por profissionais preparados; o conhecimento sobre a doença, sobre o tratamento e informações corretas sobre o quadro clínico do paciente; o autocuidado; a espiritualidade e a religiosidade; grupos de apoio; uma estrutura familiar flexível e que permita a divisão de tarefas, são fatores que podem contribuir para a proteção do cuidador familiar principal de paciente oncológico. Resultados estes, que reforçam a necessidade de o cuidador receber o suporte necessário para conseguir assumir essa função de forma saudável, prevendo danos físicos, psíquicos e sociais
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Alvarez, Gustafsson Alejandra. "Närståendes erfarenheter av att vårda en anhörig med Alzheimers sjukdom : En litteraturöversikt." Thesis, Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-7443.
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Marques, Cristina. "Uma intervenção psicoeducativa na gestão da sobrecarga do cuidador Informal de pessoa com esquizofrenia." Master's thesis, Instituto Politécnico de Setúbal. Escola Superior de Saúde, 2014. http://hdl.handle.net/10400.26/6269.
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Relatório de Trabalho de projeto de Mestrado em Enfermagem para o cumprimento dos requisitos necessários à obtenção do grau de mestre em Enfermagem de Saúde Mental e Psiquiátrica, realizado sobre a orientação do Professor Joaquim LopesNo presente trabalho analisamos os possíveis benefícios, de um projeto de intervenção psicoeducativa, na redução da sobrecarga de cuidadores informais de pessoas em situação de esquizofrenia. Sendo a psicoeducação parte integrante dos cuidados de enfermagem especializada em saúde mental e psiquiatria, tentámos confirmar a hipótese experimental de que os cuidadores informais submetidos a um programa psicoeducativo multifamiliar que inclua o utente e também entrevistas de suporte emocional unifamiliar, apresentam maior redução da sobrecarga de que os cuidadores informais que recebem os cuidados habituais num Espaço Terapêutico e Comunitário de Saúde Mental. Para melhor confirmar ou infirmar esta hipótese, na primeira parte deste relatório, apresentamos um estudo de desenho experimental com pré-teste, pós-teste e grupo de controlo randomizado, numa amostragem de 14 cuidadores informais. Estes foram agrupados aleatoriamente em dois grupos, um experimental (N=7) e outro de controlo (N=7). Ao grupo experimental foi realizado um programa multifamiliar psicoeducativo com participação do utente e entrevistas individualizadas de suporte emocional, durante três meses. Como instrumento de colheita de dados, foi utilizado o QPF de Xavier et al (2002). O instrumento foi aplicado com o consentimento informado dos participantes e autorização formal dos responsáveis do serviço, no início e fim do projeto nos dois grupos. Não encontrámos diferenças de médias, estatisticamente significativas (p > .05) entre os dois grupos de investigação, na sobrecarga. Contudo, verificámos que o grupo experimental teve uma diminuição da sobrecarga 10.57% superior ao grupo de controlo. Os dados suportam a decisão de investir em projetos, desta natureza, naquele contexto específico, porque está associado a benefícios na redução da sobrecarga, superiores a 5%. Na segunda parte do relatório, refletimos sobre as principais competências clínicas e científicas desenvolvidas durante o estágio clinico. Estas competências basearam-se em intervenções terapêuticas realizadas com os utentes e seus cuidadores informais que frequentam o Espaço Terapêutico Comunitário. Foi possível desenvolver habilidades no domínio da relação de ajuda existencialista, na psicoeducação familiar, no treino de competências sociais e na metodologia de investigação científica segundo uma abordagem quantitativa.
Abstract: In this paper we analyze the possible benefits of a psychoeducational intervention project, reducing the burden of informal caregivers of people suffering from schizophrenia. Being psychoeducation part of nursing care in specialized mental health and psychiatry, we tried to confirm the experimental hypothesis that informal caregivers undergo a multifamily psychoeducational program that includes user interviews of single-family emotional support, have a higher reduction of overhead that informal caregivers receiving usual care in a Therapeutic Area Community and Mental Health. To better confirm or refute this hypothesis, we used a study of experimental design with pretest and posttest randomized control group, a sample of 14 caregivers. They were grouped randomly into two groups, one experimental group (N = 7) and a control (N = 7). In the experimental group was held multifamily psychoeducational program with participation of the user individualized interviews and emotional support for three months. As an instrument of data collection was used the QPF Xavier et al (2002). It was administered with the informed consent of participants and formal authorization of the responsible service, at the beginning and end of the project in both groups. We did not find differences in means, statistically significant (p> .05) between the two research groups, the overload. However, we have found that the experimental group had a decreased burden 10:57% higher than the control group. The data support the decision to invest in projects of this nature, in that specific context because it is associated with benefits in reducing overhead, greater than 5%. In the second part of the report, we reflect on key clinical and scientific skills developed during the clinical stage. These competencies were based on therapeutic interventions with patients and their informal caregivers attending the Therapeutic Area Community. It was possible to develop skills in the field of helping relationship existentialist in family psychoeducation, training in social skills and methodology of scientific research according to a quantitative approach.
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Olai, Lena. "Life after a stroke event with special reference to aspects on prognosis, health and municipality care utilization, and life satisfaction among patients and their informal caregivers /." Doctoral thesis, Uppsala : Acta Universitatis Upsaliensis : Univ.-bibl. [distributör], 2010. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-112875.
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Englund, Jessica, and Ida Norin. "Min familj är drabbad av sjukdom : En litteraturöversikt om anhörigas upplevelse av att vårda en sjuk familjemedlem i hemmet." Thesis, Ersta Sköndal högskola, Institutionen för vårdvetenskap, 2014. http://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-4280.
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Bakgrund: Allt fler människor vårdas i sina hem och det anses ofta vara en betydelsefull plats för både sjuka och anhöriga. När sjukdom drabbar en person spelar de anhöriga en viktig roll. De får ta ett stort ansvar gentemot den sjuke och för vården i hemmet. Det är trots detta fortfarande sjuksköterskans uppgift att främja patientens och familjens upplevelse av livskvalitet och välbefinnande. Allas behov behöver tillgodoses för att vården i hemmet ska vara adekvat. Syfte: Att beskriva anhörigas upplevelse av att vårda en sjuk familjemedlem i hemmet. Metod: Denna litteraturöversikt baserades på tio vetenskapliga artiklar. Dessa hämtades från databaserna CINAHL plus with Full text och PubMed. Familjefokuserad omvårdnad var den teoretiska referensram som kom att diskuteras utifrån litteraturöversiktens resultat. Den handlar om familjens betydelse för patientens upplevelse av hälsa och sjukdom. Även de vårdvetenskapliga konsensusbegreppen behandlades. Resultat: Det framkom fyra områden i resultatet. Det första var känslomässig påverkan på den informella vårdaren, vilket berörde de tankar och känslor som uppkom när någon tog sig an vårdarrollen. Det andra var social påverkan, som handlade om hur de anhörigas sociala liv påverkades när de tog sig an den informella vårdarrollen. Det tredje var förändringar, vilket berörde kontrasterna mellan hur livet var innan sjukdom drabbade familjen och hur livet blev efter sjukdomen inträdde. Det sista området var information och stöd som omfattade det som familjen ansåg sig behöva hjälp med. Diskussion: De två områdena känslomässig påverkan på den informella vårdaren och social påverkan diskuterades utifrån den familjefokuserade omvårdnaden och de vårdvetenskapliga konsensusbegreppen.Background: Nowadays more people are being cared for in the home which is often considered an important place for both the patient and relatives. When illness hits one family member the relatives plays an essential role. They have to take responsibility for their sick family member and for the home nursing. Nevertheless, it is still the nurse´ task to ensure that the patient and the family experience quality of life and wellbeing. Aim: To describe the family experience of caring for a sick family member at home. Method: This literature review was based on ten scientific articles. These were taken from the databases CINAHL Plus with Full Text and PubMed. Family focused nursing was the theoretical framework that the literature review was proceeded from. Family focused nursing is about the family importance to the patient experience of health and illness. The consensus concepts of caring science were also discussed. Results: Four themes appeared in the result. The first one was emotional impact on the informal caregiver. That theme includes thoughts and feelings that arise when someone takes on the caregiving role. The second one was social impact which is about the family members' social lives and how the informal caregiving role affects them. The third one was changes and that theme is about the contrast between what life was like before the illness struck their family and how life became after the disease entered. The final theme was information and support which included the areas where the family required more help. Discussions: Emotional impact on the informal caregiver and social impacts were discussed on the basis of family focused nursing and the consensus concepts of caring science.
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Abika, Angela, and Evakajsa Jönsson. "Hur gör jag för att orka? : Stöd till närstående som vårdar en demenssjuk i hemmet." Thesis, Högskolan i Borås, Akademin för vård, arbetsliv och välfärd, 2017. http://urn.kb.se/resolve?urn=urn:nbn:se:hb:diva-11975.
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Det finns idag i Sverige många personer som har drabbats av en demenssjukdom. Att drabbas av demenssjukdom påverkar hela familjen och de närstående får ofta dra ett tungt lass vid vården av den sjuke. Många närstående sliter dygnet runt och löper därför stor risk att drabbas av hög stressbelastning och depression som följd. Demenssjukdom kan delas in i olika typer så som frontotemporal demens, Alzheimers sjukdom, vaskulärdemens. Olika typer av demens ger olika symtom men gemensamt är att de alla ger en kognitiv och känslomässig påverkan med bland annat nedsatt minnesfunktion, rastlöshet och oro. Syftet med studien var att undersöka vilka behov närstående som vårdar en demenssjuk i hemmet kan ha för att som sjuksköterska kunna stödja på bästa sätt. I denna studie har det använts elva artiklar varav sex är kvalitativa och tre kvantitativa samt två artiklar som var blandstudier med både kvalitativa och kvantitativa inslag. Analysen av materialet resulterade i två huvudkategorier vilka är kunskap om sjukdomen och kunskap om stöd som kan erbjudas, samt sex underkategorier. Resultatet visar att närstående har ett stort behov av utbildning och information, vilket de i dag inte tycker att de får tillräckligt av. De behöver dels kunskap om sjukdomen för att kunna förstå och ge en god vård, samt kunskap om sjukdomens utveckling för att kunna planera för framtiden. Det visar sig också att många närstående inte får tillräckligt information om hur de skall få kontakt med olika instanser, samt hur de kan söka olika stödåtgärder så som korttidsplats, dagverksamhet och avlösning i hemmet. För att närstående skall orka sköta den dagliga vården av den sjuke är det viktigt att han eller hon får tid att ta hand om sig själv. Som sjuksköterskor är det viktigt att ha en bra utbildning och en god förståelse för hur närstående och sjuka upplever sjukdomen, för att kunna ge en korrekt information samt att kunna stödja på bästa sätt.
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Engström, Lovisa, and Cecilia Hanquist. "Copingstrategier för att bevara psykosocial hälsa för närstående som vårdar patienter med cancersjukdom : - En litteraturöversikt." Thesis, Uppsala universitet, Institutionen för folkhälso- och vårdvetenskap, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-354130.
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Bakgrund: Minst var tredje person kommer under sin livstid att få en cancerdiagnos. Närstående till dessa personer kommer att spela en central roll i vårdandet. Att som närstående vårda beskrivs ofta som en stressande situation med psykiska och fysiska påfrestningar. Dessa påfrestningar hos närstående kan göra att de riskerar att drabbas av ohälsa. Hur dessa personer väljer att hantera situationen är individuellt och det är varje individs ansvar att se över sin hälsa och skapa strategier för att hantera dessa påfrestande situationer för att främja hälsan. Syfte: Syftet med denna studie var att beskriva vilka copingstrategier närstående som vårdar patienter med cancersjukdom använder för att bevara den psykosociala hälsan. Metod: En litteraturöversikt där artiklarna analyserades enligt en analysmodell av Friberg (2012). Artiklar lästes igenom, med fokus på resultat, för att kunna identifiera nyckelfynd. Varje artikels resultat sammanställdes och relaterades till varandra för att få fram nya teman. Orems egenvårdsteori användes vid resultatdiskussionen. Resultat: Resultatet presenteras i fem huvudteman; Vårdgivande och coping, Kognitiva copingstrategier, Normaliserande copingstrategier, Instrumentella copingstrategier och Psykosociala faktorer. Copingstrategier som framkom var omdirigering av tankar, positivt tänkande, tro, hopp, acceptans, upprätthålla rutiner, stark fasad, jämförelse, stöd och information. Andra områden som framkommer i resultatet är hur närstående utvecklar copingstrategier och förutsättningar för att uppleva stöd, vinster med vårdgivande och coping samt relationen till hälso- och sjukvården. Slutsats: Resultatet visar en variation på användandet av copingstrategier samt skillnader och likheter i förhållande till dessa. Den enskilda individens erfarenheter och kunskaper spelar också roll vid utveckling av dessa. Copingstrategier tycktes även vara knutna till individens personliga resurser samt egna färdigheter.Background: At least every third person will be diagnosed with cancer during his/hers lifetime. Relatives, familymembers and friends to these persons will play a central role in caring. Being a care giving relative, a family member or a friend to a person diagnosed with cancer, is often described as a stressful situation with both mental and physical strain. These strains in close relationships may lead to poor health. How each caregiver chooses to handle the situation is individual and he/she has a responsibility to self-assess health and create strategies to promote these stressful health situations. Aim: The purpose of the study was to describe which coping strategies relatives, familymembers or friends who care for patients with cancer disease use to maintain psychosocial health. Method: A literature review where the articles were evaluated with an analysis model according to Friberg (2012). Articles were read trough, focusing on results, to identify key findings. The results of each article were compiled and related to each other in order to develop new themes. Orem's self-care theory was applied to the resultdiscussion. Result: The results were presented in five main themes; Caregiving and coping, Cognitive coping strategies, Normalizing coping strategies, Instrumental coping strategies and Psychosocial factors. Coping strategies that emerged were redirecting thoughts, positive thinking, faith, hope, acceptance, maintaining routines, strong facade, comparison, support, and information. Other areas found in the results are how relatives, familymembers or friends develop coping strategies and conditions for experiencing support, benefits with care and coping and the relationship with healthcare professionals. Conclusion: The results show a variation in the use of coping strategies as well as differences and similarities in relation to these. Individual's experiences and knowledge play a part in the development of these copingstrategies. Which coping strategies individuals choose also seemed to be linked to their personal resources as well as own skills.
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El-Tai, Abdel-Rehim Aisha, and Erik Thörn. "Närståendes upplevelser : I vårdandet av familjemedlemmar med Alzheimers sjukdom En litteraturöversikt." Thesis, Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-7149.
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Bakgrund: Enligt WHO drabbas ungefär tio miljoner människor av demens varje år varav 60 till 70 procent av Alzheimers sjukdom. I Sverige är upp emot var femte vuxen en regelbunden informell vårdgivare till någon i sin omgivning. Informell vård innebär den omsorg som närstående ger till vårdtagaren. Behovet av närståendes närhet ökar ofta under insjuknandet i Alzheimers sjukdom. Sjuksköterskan har en hälsofrämjande och sjukdomsförebyggande funktion och har en roll som rådgivare där denne vägleder vårdtagare och deras närstående. Syfte: Syftet var att belysa närståendes upplevelser kring vårdandet av familjemedlemmar med Alzheimers sjukdom. Metod: En litteraturöversikt genomfördes där tio artiklar med kvalitativ design granskades och analyserades enligt Friberg. Dessa artiklar framkom ur databaserna Cinahl Complete, Pubmed, Medline och PsykINFO. Sökord som användes var ”Alzheimers disease”, ”experience”, ”relatives” och ”family”. Resultat: Fyra huvudteman konstruerades. Transitionen från närstående till att bli vårdgivare, här framkom det att närstående upplevde maktlöshet, tvivel och en förlust av autonomi. Älta det förflutna och känna oro för framtiden, närstående upplevde en känsla av oro inför framtiden både för vårdtagaren och dem själva. Upplevelsen av stigmatisering och isolering, närstående upplevde att de blev isolerade och kände av en stigmatisering i samhället. Att förlora samhörigheten och stärka den, närstående belyste att relationen med vårdtagaren förändrades till följd av sjukdomens inverkan. Diskussion: Resultatet diskuterades utifrån Callista Roys teori om adaption. Diskussionen fördes kring hur upplevelserna hos närstående kan förstås utifrån denna teori och det som framkom i resultatet. Närstående genomgår en övergång till att bli en vårdgivare och befinner sig i en föränderlig miljö där adaption eftersträvas för att finna en balans i livet. En diskussion fördes kring sjuksköterskans roll i samspelet med närstående.Background: According to WHO, approximately ten million people are affected by dementia each year, of which 60 to 70 percent are suffering from Alzheimer's disease. In Sweden, every fifth adult is an informal caregiver to someone in their environment. Informal care involves the care that relatives give to their care recipient. At the onset of Alzheimer's disease, the need of closeness to the relatives often increases. The nurse has a health promoting and disease preventing function and has a role as an adviser in which he/she guides the care recipient and their relatives. Aim: The aim was to illustrate the experiences of relatives in caring for family members with Alzheimer´s Disease. Method: A literature review was conducted where ten articles of qualitative design were examined and analyzed according to Friberg. These articles came from the databases Cinahl Complete, Pubmed, Medline and PsychInFO. Keywords used were "Alzheimers Disease", "Experience," "Relatives," and "Family." Results: Four main themes were constructed. The transition from relative to becoming a caregiver, here it emerged that relatives experienced powerlessness, doubt and a loss of autonomy. Dwelling on the past and Feeling worried about the future, relatives experienced a sense of concern for the future both for the care recipient and for themselves. The experience of stigmatization and isolation, relatives felt that they were isolated and felt stigma in society. The loss of togetherness and strengthen it, relatives explained that the relationship with the care recipient changed as a result of the effect of the disease. Discussion: The results was discussed based on Callista Roys theory of adaptation. The discussion was conducted in relation to how the experiences of relatives can be understood based on this theory, and other findings that emerged from the results. Relatives undergo a transition to becoming a caregiver and are in a changing environment where adaptation is sought to find a balance in life. A discussion was held about the nurse's role in the interaction with relatives.
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Alves, Nuno Manuel Boieiro. "Cuidando, lado a lado - Otimização de estratégias de atuação na capitação do cuidador informal." Master's thesis, Universidade de Évora, 2018. http://hdl.handle.net/10174/23263.
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As sociedades contemporâneas, deparam-se com uma nova realidade, o envelhecimento demográfico.
O envelhecimento como condição natural, acarreta transformações no corpo que podem conduzir a uma diminuição da funcionalidade e aumento da vulnerabilidade.
Isto traz novas necessidades em saúde, obrigando à redefinição de estratégias de atuação governamental, institucional e dos profissionais de saúde, onde muito se tem falado na importância da rede de apoio informal e sua capacitação.
Neste sentido, com base na metodologia do planeamento em saúde, o mestrando procurou identificar estratégias de otimização de atuação no processo de capacitação do cuidador informal, junto da equipa de profissionais de saúde de uma UCC da Região de Évora.
Esta intervenção culminou com a construção de um algoritmo de decisão e intervenção, onde foram englobadas duas sessões de educação para a saúde, com base na temática do autocuidado, que permitiu à equipa atuar de forma uniforme, objetiva, de acordo com as necessidades individualizadas; ABSTRACT: Caring, Side by Side – Optimization of Strategies to Act in Informal Caregiver Training
Contemporary societies are faced with a new reality, the demographic aging. Aging as a natural condition leads to changes in the body that can lead to decreased functionality and increased vulnerability.
This brings new health needs, forcing the redefinition of strategies of governmental, institutional and health professionals, where much has been said about the importance of the informal support network and its capacity building.
In this sense, based on the methodology of health planning, the master student sought to identify strategies for optimizing the actuation process in the informal caregiver training process, together with a team of health professionals from a UCC in the region of Évora.
This intervention culminated in the construction of a decision and intervention algorithm, which included two sessions of health education, based on the au-to-care theme, which allowed the team to act in a uniform, objective manner, according to the individual needs.
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Avó, Maria Helena Guerreiro Mestre. "Gerir a adultez tardia: os processos de tomada de decisão e acomodação das famílias com idosos dependentes." Master's thesis, Instituto Superior de Ciências Sociais e Políticas, 2009. http://hdl.handle.net/10400.5/2970.
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Dissertação de Mestrado em Política SocialNos países desenvolvidos o envelhecimento demográfico acentuado é motivo de preocupação, aos níveis económico, social e político. As famílias são afectadas nas suas actividades e relações, face ao acréscimo de membros idosos. O papel do cuidador familiar e as suas acomodações, muito importantes para a projecção de políticas sociais, têm sido pouco avaliados cientificamente. Este facto levou à decisão de investigar a perspectiva microssocial da família, numa abordagem do cuidador principal, nas vertentes domiciliar e institucional. O objectivo do estudo foi avaliar os processos de tomada de decisão e acomodação que envolvem o cuidador informal, quando confrontado com uma situação de dependência do familiar idoso. Pretendese contribuir para uma reflexão empírica fundamentada acerca de programas e iniciativas de Politica Social para idosos e famílias cuidadoras. Os dados obtidos sugerem um predomínio de CI do género feminino, que revelou sobrecargas a nível físico e emocional, com acomodações sucessivas para manter o idoso no domicílio ou acompanhá-los na institucionalização. Revelou igualmente gratificação pelo cuidado prestado. Foi transmitido que a insuficiência de respostas exteriores não permite olhar o futuro com confiança. Esta investigação é um estudo exploratório, de abordagem qualitativa, com recolha de dados por entrevista.
In developed countries the accentuated demographic aging causes concern at economical, social and political levels. Family relations and activities are affected with the increasing of elder individuals. The role of the family caregiver and necessary accommodations haven’t been duly evaluated scientifically, which reveals a gap in the projection of social politics. This led to the decision of investigating the family’s micro social perspective. The approach had particular incidence on the main informal caregiver both at home and at an institution. The purpose of this study was to evaluate the processes of decision making and accommodation which involve the caregiving family, when confronted with the elder relative’s dependence. It also intended to contribute to a grounded empirical reflection on the programs and initiatives of Social Politics for the elder and families’ caregivers. The data obtained points out a preponderance of a female gender IC and reveals physical and psychic overloads, with successive accommodations to keep the elder at home or accompany them when institutionalized. It also shows a sense of gratification for the caregiver. It’s clear to the IC that the lack of formal care services doesn’t allow to face the future with optimism. This investigation is an exploratory study, of qualitative approach, with data gathered through interviews.
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Borges, Cristiane José. "Estratégias de atenção aos cuidadores informais de idosos: pesquisa participante baseada na comunidade." Universidade Federal de Goiás, 2017. http://repositorio.bc.ufg.br/tede/handle/tede/7325.
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INTRODUCTION: The process of population aging is a worldwide phenomenon and, simultaneously, a new social role emerges - the informal caregiver-, seen as an essential component to promote elderly’s quality of life in some dependency situation at home. OBJECTIVE: To describe the construction and implementation of care and support strategies for elderlies’ informal caregivers through the Community Based Participatory Research. METHOD: A descriptive study guided by Community Based Participatory Research (CBPR) principles and carried out through the organization of a Community Advisory Committee (CAC), which involved academic and community participants. The study was attended by 384 people, nine community partners, 255 professionals working in family health strategies and 120 elderlies’ informal caregivers. The research was divided into the following phases: 1 - establishment of the community partnership; 2 - identification of problems related to elderly’s informal caregiver; 3 - prioritization of problems related to elderly’s informal caregiver; 4 - capacity survey of community strengths, dynamics and resources; 5 – arrangement of strategies, method, support and care interventions to elderly’s informal caregiver; 6 - implementation of strategies, method, support and care interventions to elderly’s informal caregiver; 7 - data analysis by CAC members; 8- dissemination of results obtained with CAC partnership; 9 - maintenance, CAC sustainability and partnerships evaluation. For the results’ analytical process, the content analysis proposed by Bardin was used for qualitative data and the descriptive statistical analysis was used for quantitative data. The Bioecological Theory of Human Development was adopted as a complementary basis for data analysis. RESULTS: Through the CAC constitution, there were identified, in a collective way, 17 problems faced in the elderly’s informal caregiver daily life. The use of the Severity, Urgency and Trend matrix allowed these problems prioritization for decision making. This process mobilized the construction of an action plan composed by five strategies: 1 - teaching of CAC members about the concepts recommended to define the caregiver role; 2 -raising the knowledge of Family Health Strategy professionals about the importance of including the informal caregiver as a care focus; 3 - performance of the 1st Multiprofessional Care Meeting for Elderly and Informal Caregiver; 4 - recording of the city’s informal caregivers of elderly people; 5 - qualification of the elderlies’ informal caregivers. CONCLUSION: The use of Community Based Participatory Research enabled the community partners’ empowerment, that mobilized themselves in support of elderlies’ informal caregivers, developing actions that included the mapping of the city’s informal caregivers of elderly people, mobilization and qualification of the Family Health Strategy professionals, and the organization of care spaces. In this process, it was verified that this research approach strengthens health democratization by promoting greater involvement and social protagonism of community partners, creating ideas and concrete actions for the establishment of care strategies for the elderlies’ informal caregivers.
INTRODUÇÃO: O processo de envelhecimento populacional é um fenômeno mundial e, concomitante a ele, emergiu um novo papel social – o cuidador informal –, visto como uma peça elementar para promover a qualidade de vida do idoso em alguma situação de dependência no domicílio. OBJETIVO: Descrever a construção e a implementação de estratégias de atenção e suporte aos cuidadores informais de idosos por meio da Pesquisa Participante Baseada na Comunidade. MÉTODO: Estudo descritivo guiado pelos princípios da Pesquisa Participante Baseada na Comunidade e realizado a partir da organização de um Comitê de Assessoria Comunitária (CAC), que envolveu participantes acadêmicos e da comunidade. Participaram do estudo 384 pessoas, sendo nove parceiros da comunidade, 255 profissionais que atuam nas estratégias saúde da família e 120 cuidadores informais de idosos. A investigação foi dividida nas seguintes fases: 1 - formação de parceria com a comunidade; 2 - identificação de problemas relacionados ao cuidador informal de idoso; 3 - priorização de problemas relacionados ao cuidador informal de idoso; 4 - levantamento das capacidades de pontos fortes, dinâmicas e recursos da comunidade; 5 - planejamento de estratégias, método e intervenções de atenção ao cuidador informal de idoso; 6 - implementação de estratégias, método e intervenções em atenção ao cuidador informal de idosos; 7 - análise dos dados pelos membros do CAC; 8 - divulgação dos resultados obtidos com a parceria do CAC; 9 - manutenção, sustentabilidade do CAC e avaliação das parcerias. Para o processo analítico dos resultados, utilizou-se a análise de conteúdo proposta por Bardin, para os dados qualitativos, e a análise estatística descritiva, para os dados quantitativos. Adotou-se como fundamentação complementar para análise dos dados a Teoria Bioecológica do Desenvolvimento Humano. RESULTADOS: A partir da constituição do CAC identificaram-se, de maneira coletiva, 17 problemas enfrentados no cotidiano do cuidador informal de idoso. O uso da matriz de Gravidade, Urgência e Tendência possibilitou a priorização desses problemas para a tomada de decisão. Esse processo mobilizou a construção de um plano de ação composto por cinco estratégias: 1 - capacitação dos membros do CAC sobre os conceitos preconizados para definir o papel do cuidador; 2 - sensibilização dos profissionais da Estratégia Saúde da Família sobre a importância de incluir o cuidador informal como alvo de cuidados; 3 - realização do I Encontro Multiprofissional de Atenção à Pessoa Idosa e ao Cuidador Informal; 4 - cadastramento dos cuidadores informais de idosos do município; 5 - qualificação dos cuidadores informais de idosos. CONCLUSÃO: O uso da Pesquisa Participante Baseada na Comunidade possibilitou o empoderamento dos parceiros comunitários que se mobilizaram em prol dos cuidadores informais de idosos, desenvolvendo ações que incluíram o mapeamento dos cuidadores informais no município, a mobilização e a qualificação de profissionais da Estratégia Saúde da Família, e também a organização de espaços de cuidados. Nesse processo, constatou-se que essa abordagem de pesquisa fortalece a democratização da saúde por promover maior envolvimento e protagonismo social dos parceiros da comunidade, gerando ideias e ações concretas para o estabelecimento de estratégias de atenção aos cuidadores informais de idosos.
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Ahmed-Dahmane, Imane, and Monica Popescu. "Anhörigvårdare av personer med demens : En litteraturöversikt om anhörigvårdares upplevelser under vårdtiden." Thesis, Högskolan Dalarna, Socialt arbete, 2020. http://urn.kb.se/resolve?urn=urn:nbn:se:du-32542.
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Antalet anhörigvårdare av personer med demens förväntas öka under de nästkommande tio åren i samband med att antalet personer som drabbas av demenssjukdom ökar, samtidigt som den offentliga omsorgen minskar. Anhörigvårdare av personer med demens har flera stödbehov som inte är uppfyllda på grund av en bristande förståelse av deras livssituation. Syftet med denna litteraturstudie är att skapa förståelse och belysa livssituationen för anhöriga som vårdar en närstående med en demenssjukdom. För att besvara syftet har en litteratursökning gjorts i tre databaser som har resulterat i identifieringen av 15 kvalitativa studier. Tematisk analys har tillämpats på studiernas resultatavsnitt. Tre huvudteman och fem underteman har identifierats. Teman belyser anhörigvårdarna av personer med demens, deras upplevelse samt de strategierna de använder för att klara av vardagen. Livssituationen för anhörigvårdare av personer med demens ser olika ut och stödbehoven är individualiserad och beror på deras livssituation innan insjuknandet samt på sjukdomens symtom.Family caregiving of people with dementia is expected to increase due to a declining public care and a growing number of people suffering from dementia. There is a need for better understanding of the life situation of family caregivers in order to give them the right support. The aim of this literature study is to emphasize the life situation of relatives caring for persons with dementia disease. The methodological approach is thematic analysis av 15 qualitative studies that have been identified after a literature search conducted in three databases. The results are presented in three main themes and five sub-themes. The themes highlight the family caregivers, their experience and the strategies they use to cope with everyday life. The study concludes that the life situation of the family caregivers is individualized. Their support needs are varying according to the development of the dementia disease and the circumstances before the illness.
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Lacroix, Victoria. "Usability, efficacy, and perspectives of an Internet-based psycho-educational program for informal caregivers of persons with Alzheimer's disease : the contributions of an iterative user-centered design and a randomized clinical trial." Thesis, Paris 5, 2014. http://www.theses.fr/2014PA05H116/document.
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Compte tenu des risques non-négligeables liés à la prise en charge des personnes souffrant de maladie d'Alzheimer sur la santé globale et le bien-être des aidants informels, l'OMS recommande fortement la mise en place d'interventions à leur égard. Bien que les programmes en ligne représentent un outil prometteur pour ces aidants surchargés, peu de recherches ont été menées sur leur conception et leur efficacité. Le but de cette thèse de doctorat était de contribuer à la connaissance et la compréhension des processus du développement et d'évaluation de ces interventions. Pour cela, quarante-neuf participants (12 professionnels de la santé, 6 aidants et 31 personnes âgées) ont participé au processus itératif de conception du programme Diapason centrée sur l'utilisateur. La dernière version a été évaluée dans un essai clinique randomisé, basé sur des méthodes de recherche mixtes. Quarante-neuf aidants informels de personnes atteintes de maladie d'Alzheimer ont été randomisés soit dans le groupe expérimental (n = 25) ou soit dans le groupe de contrôle (n = 24). Bien que les résultats portant sur l'efficacité du programme ne soient pas concluants, les personnes du groupe expérimental ont significativement augmenté leurs niveaux de connaissance de la maladie (p = 0,008 d' = 0,79). Par ailleurs, l'analyse qualitative a montré que les enfants des patients avaient donné un avis plus favorable que les épouses sur l'utilité du programme. Les résultats de ces travaux offrent des perspectives prometteuses pour ce type d'interventions, en particulier quand elles sont personnalisables et centrées sur les besoins des aidants. Ce travail permet de mieux appréhender les spécificités méthodologiques liées au développement et à l'évaluation des interventions des aidantsGiven the important consequences of caregiving on the overall health and wellbeing of informal caregivers, the WHO strongly recommends interventions for them. Although Internet-based programs represent a promising tool for overburdened caregivers, little research has been conducted about their design and efficacy. The purpose of this PhD dissertation was to contribute to the knowledge and understanding of the development, evaluation, and implementation process of these programs. For this purpose, we involved forty-nine participants (12 healthcare professionals, 6 caregivers, and 31 healthy older-adults) in the iterative user-centered design process for the development of the Diapason program. The latest version of this program was evaluated in a randomized clinical trial, based on mixed methods research. Forty-nine informal caregivers of persons with Alzheimer's disease were randomly assigned to the experimental (n=25) or control group (n=24). Although the results were non conclusive about the program's efficacy, the experimental group significantly improved their knowledge of the disease (p=0.008 d=0.79). Furthermore the qualitative analysis showed that children of patients were more positive than female spouses caregivers about the usefulness of the program. The findings of this research offer promising perspectives for this kind of interventions, particularly when individualized and centered on the needs of caregivers. This work allows for the understanding and analysis of specific methodological features to develop and evaluate caregivers' interventions
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Stacey, Anne Florence. "Measuring the health status of informal and family caregivers - how, what and why." Thesis, 2019. http://hdl.handle.net/2440/123619.
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This research utilises data about adult informal family caregivers in South Australia, their prevalence over a period of two decades, and provides a review of their health and morbidity profiles between the years 2008 and 2015. The rationale for the study has come from increased epidemiological and clinical discussions on the impact of informal caregiving on the health status of family carers. The evidence suggests a proportion of carers may be at greater risk of poor health outcomes, however there are limited population-based studies that provide representative data on specific risk factors amongst carers. The research is based on a literature review and three separate analyses, resulting in manuscripts published in international journals. The 20-year prevalence estimates are featured in the first publication using representative state-wide surveys, (total N=26,788 and n=1,504 carers aged 16 years and over). An Age-Period Cohort (APC) analysis was undertaken to examine whether there were any generational effects on the prevalence of carers. The second publication, based on monthly state-wide surveys between 2010-2015, provided self-report data on carers’ health status, risk factors and chronic illnesses (N=35,195 participants and n=2,247 carers aged 18 years and over). The population attributable risk (PAR) of being a carer was examined for selected chronic conditions. The third paper examined carers drawn from a representative population-based longitudinal biomedical cohort study in metropolitan Adelaide (N=4056 participants and n=191 carers aged 40 years and over). Risk factors, chronic medical conditions and biomedical, health and demographic characteristics using self-report, clinic and laboratory measured variables were assessed – including haematology, biochemistry, Vitamin D, and the inflammatory biomarkers; high sensitivity C-Reactive Protein (hs-CRP), Tumor Necrosis Factor alpha (TNFα) and Interleukin-6 (Il-6). This South Australian profile indicates that caregiving is associated with a small to moderate increased risk of having chronic conditions, especially diabetes and asthma in female carers. Findings from blood-measured variables revealed lower serum Vitamin D and haemoglobin levels in carers from the urban cohort study. Male carers had raised diastolic blood pressure, higher blood glucose, lower haemoglobin and albumin levels and slightly elevated inflammatory biomarkers TNFα and hs-CRP. The results of this study have provided in-depth empirical evidence of the types of medical health conditions experienced by carers, arguing the advantages of clinical assessments. Furthermore, it is proposed that the pathways of illness of both individuals within the caregiving dyad need to be assessed concurrently. Important as it is to monitor the prevalence of conditions that influence the burden of disease in the general population, it is also pertinent to monitor, measure and manage the health of the carers who provide the informal care, since they may be carrying a double burden of illness - that of the person they are looking after and their own health problems.Thesis (Ph.D.) -- University of Adelaide, Adelaide Medical School, 2020
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Hasselkus, Betty Risteen. "Family caregivers for the elderly at home an ethnography of meaning and informal learning /." 1987. http://catalog.hathitrust.org/api/volumes/oclc/16883174.html.
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Thesis (Ph. D.)--University of Wisconsin--Madison, 1987.Typescript. Vita. eContent provider-neutral record in process. Description based on print version record. Includes bibliographical references (leaves 156-166).
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Duarte, Isabel Maria Duarte Pulquério. "Mudanças na vida dos familiares cuidadores de doentes com cancro." Master's thesis, 2014. http://hdl.handle.net/10400.12/3763.
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Dissertação de Mestrado apresentada ao ISPA - Instituto UniversitárioCuidar de um familiar que sofre de cancro provoca uma mudança profunda, no modo de organização da família cuidadora, ao nível das necessidades físicas, emocionais e sociais. Embora todos os membros da família sejam influenciados pelas mudanças introduzidas pelo processo da doença, o cuidador principal é especialmente afetado. É ele que vive mais de perto todo o processo e, numa segunda fase, sofre a perda do próprio doente. Pretende-se com este estudo, uma melhor compreensão das vivências e das mudanças mais sentidas na vida dos familiares cuidadores de doentes com cancro. Para o efeito, realizámos um estudo qualitativo, através da análise de um grupo focal de três familiares ex cuidadores de doentes com cancro, assistidos num Hospital no interior do país. Da análise, emergiram temas que tiveram um impacto significativo nas vivências familiares, como sejam os primeiros sintomas do doente, associados ao diagnóstico da doença; mudanças ocorridas no processo inicial, ao nível dos comportamentos, das capacidades físicas e da imagem; mudanças ao nível da reorganização das famílias para o processo de cuidar. O desgaste emocional, associado à adaptação às perdas em vida e após a morte, teve uma ampla manifestação. Ao longo de todo o processo existem momentos de grande dualidade de sentimentos, a vida passa a ser em função do doente, face à necessidade de cuidar e à sua eminente perda. O ex cuidador revelou sofrimento decorrente da sobrecarga vivida, com especial enfoque na quebra das rotinas e na reorganização da sua vida para cuidar.
ABSTRACT: Caring for a family member who suffers from cancer causes a profound change in the way the family is organized. Although all members of the family are influenced by the changing circumstances necessarily introduced by the disease process, the primary caregiver is especially affected. It is he/she who lives more closely the whole process and, subsequently, suffer the loss of the patient himself. The purpose of this study is understand better the experiences and changes in the lives of family caregivers of cancer patients. To this end, we conducted a qualitative study through the analysis of a focus group of three former family caregivers of cancer patients, assisted in a hospital in the countryside. From the analysis, themes emerged such as changes in the disease process, whether at the level of behavior, body image; reorganization of the families towards the care process. The adaptation to the losses in before and after death, as well as coping strategies and the pain of loss, were widely expressed. Throughout the process, there are moments of great duality of feelings, given the need to care for the patient and their imminent loss. Due to burdensome changes a certain level of distress was witnessed in their recollection of the caregiving experiences.
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Mnisi, Daphney Martha Abigail. "The characteristics, attitudes and perceptions of informal caregivers caring for a mentally ill family member : a study in Dennilton." Thesis, 2011. http://hdl.handle.net/10500/6041.
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This study was undertaken to identify the biographical characteristics, attitudes and perceptions of informal family care-givers caring for patients with mental illness in Dennilton. Data were gathered from 48 care-givers by using a cross-sectional survey approach in which structured questionnaires were completed. The results revealed that a sizeable proportion of the care-givers were 60 years and older. Only 10% were employed and a quarter married, suggesting that the care burden influenced their life choices. Many care-givers were mothers or female family members. Half of the patients cared for suffered from depression. Violent, aggressive behaviour was reported as a symptom that care-givers found difficult to deal with. Less than half of the care-givers reported that the patients accepted their health situation.Sociology
M.A. Soc.
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Browning, Sean. "The mental health and well-being of informal caregivers in Europe: regime type, intersectionality, and the stress process." Thesis, 2021. http://hdl.handle.net/1828/12877.
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This dissertation addresses the role of welfare state/family care regimes, intersecting social locations and stress process factors in influencing the mental health and subjective well-being of informal caregivers of care recipients with age-related needs or disabilities within a European international context. Empirical analyses were conducted with secondary data from the 2012 and 2016 European Quality of Life Surveys. The study sample included informal caregivers (n=6,007) residing in seven different welfare state/family care regimes, including Denmark, Sweden, France, Germany, Italy, Greece and the United Kingdom. Ordinary least squares and ordered logit regression models revealed that welfare state/family care regime, social location (including both additive and interactive associations among gender, age group, marital status, and income), and stress process factors were independently associated with the mental health and life satisfaction of informal caregivers. Furthermore, there was some evidence to suggest that social location and stress process factors mediate some of the relationships between regime type and self-reported health and well-being and that stress process factors mediate relationships between social location factors and mental health and well-being.
Overall, the results provide support for integrating welfare state/family care regime
type and intersectionality factors into the SPM. Thus, future research on informal caregivers‘ mental health and well-being ought to incorporate such factors into their empirical analyses. The results also have some policy and practice implications. Residence in social democratic formal (Denmark), semi-formal (Sweden) and conservative formal (France) care regimes was the most beneficial to informal caregivers self-reported mental health. This was also the case for life satisfaction, except that residence in the liberal semi-formal (UK) was more beneficial than in the conservative formal (France) care regime. Mediating social location and stress process factors suggest that UK policy makers should address the greater social location disparities, greater role overload, and lack of coping resources that advantage Danish and Swedish informal caregivers compared to those residing in the UK. Lastly, policy makers from all the European countries assessed in the study should address the poorer mental health status of women and rural informal caregivers, those who experience role overload, secondary stressors, and lack coping resources. They should also address the the lower levels of formal education, more secondary stressors, and lack of coping resources associated with poorer subjective well-being.Graduate
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Luh, Ray-Ling, and 陸瑞玲. "The Relationship among quality of life, Resilience, Family function in informal caregivers of people with dementia: The Stress Process Model Perspective." Thesis, 2019. http://ndltd.ncl.edu.tw/handle/pnup2q.
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博士國立陽明大學
護理學系
107
Background: Dementia is one of the most debilitating and burdensome health conditions worldwide. In Taiwan, the number of people suffering from dementia has gradually increased. For primary caregivers, caring for family members with dementia is a long and arduous process; they will experience physical, psychological, and social difficulties. Purposes: This study examined the quality of life of family caregivers of people with dementia (PWD) as well as the application of a stress process model to explore its influencing factors. Furthermore, this study examined the mediating effects of resilience and family function of caregivers of the quality of life outcomes. Method: This study employed a cross-sectional research design. A sample of 221 caregivers was recruited from one medical center and a community from northern Taiwan; a self-administered questionnaire was distributed to them. Results: The overall quality of life of caregivers with the following demographics was very poor (mean: 43.98, standard deviation: 11.26, range: 16–80): female, aged > 70 years, junior high school education (including below), married, or a very poor pre-existing relationship with PWD. The more neuropsychiatric symptoms that PWD exhibit, and the lower their instrumental activities of daily living (IADL) function are, the worse the quality of life is for their family caregivers; furthermore, the more care that family caregivers are required to provide, the higher their degree of depression is, and thus, the worse their quality of life is. Next, the results of the mediation effects were examined; the neuropsychiatric symptoms of PWD, care burden of family caregivers, degree of depression, and quality of life of caregivers were partially mediated through resilience and family function; moreover, PWD’s IADL and quality of life were completely mediated through resilience and family functions. Conclusions: The results can help researchers understand the quality of life of family caregivers, which in particular can help to improve their leisure activities, quality of sleep, and interpersonal relationships. In addition, this study demonstrated and enhanced the resilience of family caregivers as well as the importance of improving family function to the quality of life of caregivers. Moreover, this paper provides specific recommendations for future research and clinical applications.
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Alves, Cynthia Ann. "A pessoa idosa em situação de fim de vida no domicílio : estudo de caso." Master's thesis, 2012. http://hdl.handle.net/10400.3/3209.
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Dissertação de Mestrado em Gerontologia SocialA dissertação de mestrado aqui apresentada visa compreender a experiência de cuidar a pessoa idosa em situação de fim de vida no domicílio na perspectiva dos diversos intervenientes: família com o papel de cuidadores informais, outros familiares, e profissionais de saúde que acompanharam o processo. O presente estudo de caso consiste na experiência de uma família e de profissionais de saúde no acompanhamento e cuidado de uma pessoa idosa em situação de fim de vida no domicílio, nos Açores. Para a obtenção dos dados, foram utilizados vários instrumentos: entrevistas aos familiares cuidadores da pessoa idosa em fim de vida no domicílio, entrevistas aos profissionais de saúde que acompanharam o caso, relatos experienciais escritos de outros familiares, processo clínico da idosa em situação de fim de vida, diário do cuidador informal e testemunho do marido (cuidador principal). As principais conclusões apontam para os seguintes aspectos: a) A pessoa idosa em situação de fim de vida no domicílio apresenta necessidades físicas, psicológicas e emocionais, e sociais; b) Existem factores intrínsecos e extrínsecos que levam a família a cuidar da pessoa idosa em fim de vida no domicílio; c) Os familiares, enquanto cuidavam da pessoa idosa no domicílio, desenvolveram sentimentos intensos, quer negativos e/ou difíceis de gerir, quer positivos e recompensadores; d) Na assistência à pessoa idosa em fim de vida no domicílio, a família experienciou sobretudo necessidades de informação, orientação e apoio; e) Segundo a família, os profissionais de saúde estabeleceram uma relação de ajuda com a pessoa idosa e com a família, existindo, por parte da família, um reconhecimento pelo apoio prestado pelos profissionais de saúde; f) Os profissionais de saúde que acompanharam a pessoa idosa em fim de vida no domicílio, e os seus familiares, valorizaram a formação que possuíam em cuidados paliativos, o trabalho em equipa e o papel da família da pessoa idosa.
ABSTRACT: The presentation presented here seeks to understand the experience of caring for an older person nearing the end of life, at home, in the perspective of various participants: the family, playing the role of informal caregivers, other family members and health care professionals that have accompanied the process. This case study reports the experience of a family and health care professionals in monitoring and caring for an older person nearing the end of life, at home, in the Azores. To obtain the data, several instruments were used such as: interviews with family caregivers of the older person nearing the end of life, at home; interviews with health care professionals who have followed the case; experiential reports written by other family members; the clinical process of the older person nearing the end of life; diary of the informal caregiver and her husband’s testimony (the main caregiver). The main findings presented lead to the following aspects: a) The older person nearing the end of life at home has physical, psychological, emotional and social needs; b) There are intrinsic and extrinsic factors that lead the family to care for the older person nearing the end of life at home; c) The family, while caring for the older person at home, developed intense feelings, whether negative and/or difficult to manage, or positive and rewarding; d) In assisting the older person nearing the end of life at home, the family has experienced, above all, the necessity of being informed, guided and supported; e) According to the family, health care professionals have established a relationship of assistance with the older person and the family. In this case, the family develops a feeling of recognition of the support provided by health care professionals; f) Health care professionals, who have followed the older person nearing the end of life at home, as well as her family members, valued their training in palliative care, team work and the role played by the family of the older person.
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Stacey, Anne F. "Enhancing the health of informal carers : implications for general practice, policy and public health in the 21st century / by A.F. Stacey." 2002. http://hdl.handle.net/2440/21860.
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"June 2002"Bibliography: p. 347-360.
xiii, 360, [200] p. : ill. ; 30 cm.
Title page, contents and abstract only. The complete thesis in print form is available from the University Library.
Thesis (M.Med.Sc.)--University of Adelaide, Dept. of Public Health, 2002
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Stacey, Anne F. "Enhancing the health of informal carers : implications for general practice, policy and public health in the 21st century / by A.F. Stacey." Thesis, 2002. http://hdl.handle.net/2440/21860.
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Lilly, Meredith Lenore. "The Labour Supply of Unpaid Caregivers in Canada." Thesis, 2008. http://hdl.handle.net/1807/11226.
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The Labour Supply of Unpaid Caregivers in Canada, Doctor of Philosophy (PhD), Meredith Lenore Lilly, Department of Health Policy, Management and Evaluation, University of Toronto, 2008.
As medical care increasingly shifts from the hospital to the home, responsibility for care has also shifted from the state and paid care, to the family and unpaid care. Unpaid caregivers are family members and friends who provide homecare services to recipients in their place of residence without financial compensation, as a result of their close personal relationships. This research tests the multiple hypotheses that unpaid caregiving has an impact on (1) the probability of labour force participation (LFP); (2) hours of labour force work; and (3) earnings by caregivers in Canada.
We analyzed the 1996 and 2002 General Social Surveys, applying multivariate probit, logistic, and OLS regression analyses to four equations: 1) the probability of labour force participation; 2) the hourly wage; 3) weekly hours of labour market work; and 4) the probability of being an unpaid caregiver.
Results indicate that unpaid caregiving was negatively associated with labour force participation; however, the impact on hours of labour market work and wages was uncertain. Women and men caregivers were impacted differently: only caregiving men in 1996 had significantly lower wages than non-caregivers, and only women in 1996 worked significantly fewer hours in the labour market. When caregiving was defined broadly, only men in 1996 were significantly less likely to be employed than non-caregivers. Yet when we controlled for caregiving intensity in 2002, both male and female primary caregivers were much less likely to be in the labour force than non-caregivers, while secondary caregivers were no less likely to be employed than non-caregivers.
We conclude that when caregiving responsibilities are relatively small, individuals seem able to balance both caregiving with employment. Yet when caregiving commitments become heavy, it becomes increasingly difficult to balance employment with caregiving. We make a number of policy recommendations ranging from improving caregiver access to financial supports, formal care and respite services, particularly for primary caregivers. We also encourage the development of workplace legislation and caregiver friendly workplaces for the majority of caregivers who remain in the labour market.
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Mkhonta, Nkosazana Ruth. "Guidelines for support of orphaned and vulnerable children being cared for by their grandparents in the informal settlements of Mbabane, Swaziland." Thesis, 2008. http://hdl.handle.net/10500/2958.
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The AIDS pandemic has generated a large number of orphaned and vulnerable children (OVC) in Swaziland, as it affects the reproductive age group. Most of the OVC are being cared for by their grandparents who are old, poor and suffer from degenerating diseases of old age. The purpose of this study was to explore and describe the needs and support available for OVC under the care of grandparents in the informal settlements of Mbabane, Swaziland in order to develop guidelines for their care and support. A qualitative, exploratory, descriptive and contextual study was conducted to identify the needs of the OVC and type of support provided by organizations for these children. Data was collected using unstructured and semi-structured interviews.
The study was conducted in three phases each addressing a research objective. In the first phase which was to identify the needs of OVC, twelve grandparents who cared for OVC in the informal settlements participated. For the second phase seven managers of organizations that provide support to OVC in the informal settlements participated. The third phase was the development of guidelines by the researcher and validated by participants and experts. The study highlighted the needs of OVC, the nature of the existing support structure and type of support provided by organizations for these children. The findings revealed that the OVC have developmental support, protection support, psychosocial support and support for survival needs. The themes identified from the analysis of the type of support provided by organizations were developmental, partnership, protection, psychosocial and support for survival needs. The organizations' support was inconsistent and inadequate to meet these needs due to the large number of OVC. Some
of the weaknesses of organizations were indicated as donor dependency and lack of coordination and collaboration among organizations. The study highlighted partnership as fundamental to the successful implementation of the guidelines.Health Studies
D. Litt. et Phil. (Health Studies)
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English, Christine. "Ontario’s Home First Approach, Care Transitions, and the Provision of Care: The Perspectives of Home First Clients and Their Family Caregivers." Thesis, 2013. http://hdl.handle.net/1974/8037.
Full textAbstract:
Home First is an Ontario transition management approach that attempts to reduce the pressure on hospital and Long Term Care (LTC) beds through early discharge planning, the provision of timely and appropriate home care, and the delay of LTC placement. The purpose of this qualitative descriptive study was to obtain descriptions from South Eastern Ontario Home First clients and their family caregivers of their experiences with and thoughts about care transitions, the provision of care, and the Home First approach. The goal was to enable insight into the Home First approach, care transitions, and the provision of care through access to the perspectives of study participants. Nine semi structured interviews (and one or more follow-up calls for each interview) with Home First clients discharged from hospitals in South East Ontario and their family caregivers were conducted and their content analyzed.
All participating Home First clients were pleased to be home from hospital and did not consider LTC placement a positive option. All had family involved with their care and used a mix of formal and informal services to meet their care needs. Four general themes were identified: (a) maintaining independence while responding (or not) to risks, (b) constraints on care provision, (c) communication is key, and (d) relationship matters.
Although all Home First clients participating in the study were discharged home successfully, a sense of partnership between health care providers, families, and clients was often lacking. The Home First approach may be successfully addressing hospital alternative level of care issues and getting people home where they want to be, but it is also putting increasing demands on formal and informal community caregivers. There is room for improvement in how well their needs and those of care recipients are being met. Health professionals and policy makers must ask caregivers and recipients about their concerns and provide them with appropriate resources and information if they want them to become true partners on the care team.Thesis (Master, Rehabilitation Science) -- Queen's University, 2013-05-23 16:10:53.323
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Michálková, Šárka. "Význam podpory pečujících osob." Master's thesis, 2016. http://www.nusl.cz/ntk/nusl-345060.
Full textAbstract:
In this thesis, I shall discuss the importance of supporting caregivers. I will focus primarily on the introduction and description of problematic phenomena related to caring, to the caregiver's role, then of delivering care and its species. In subsequent chapters I will focus on the pitfalls of care and the implications for caring. Next, I will dedicate the positive aspects of care. At work I will also support informal care from the state. I provide overview of options that can help them in caring for a related. At thesis I try to highlight the care provided by amateurish carers about the importance of their support and also to outline the positive aspects of care. Family carers deserve admiration. Their strength and conviction in many cases is unimaginable. Caregivers must overcome many obstacles and still manage most of the care.
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Berthelot-Raffard, (née Jeanne-Rose) Agnès. "La reconnaissance des aidants informels : care, justice et vulnérabilité dans la famille." Thèse, 2012. http://hdl.handle.net/1866/9082.
Full textAbstract:
Dans les années 90, le virage ambulatoire a augmenté le maintien à domicile dans une période où, paradoxalement, la population est devenue vieillissante. Même si, cette politique permis une meilleure répartition entre les soins formels et informels, lorsque les familles sont confrontées longtemps à la maladie d’un de leurs membres, l’accroissement de la vulnérabilité des aidants est une conséquence réelle. En raison de la conscience du vieillissement de la population, certains politiciens se sont engagés à faire de l’aide informelle une thématique d’actualité. Cependant, il n’en est rien. Comment exprimer leur vulnérabilité et mettre en évidence qu’elle est un important enjeu de justice sociale ? Telle est la question centrale de cette recherche.
Mon but est de montrer comment les politiques de prise en charge de la dépendance ont des conséquences sur les choix privés et, de cette manière, sur l'égalité des chances des aidants. Cette thèse explore la façon dont leur travail devrait être reconnu dans une société juste. Les personnes qui soignent leur enfant ou à un membre de leur famille handicapé ou vieillissant ont moins d’opportunités que ceux qui ne réalisent pas les tâches de soins. Une théorie de la justice adéquate devrait reconnaître ces désavantages comme des injustices. En particulier, elle devrait permettre aux aidants de choisir de soigner une personne dépendante. Cette thèse examine cette question. Dans la première partie, j’explore les enjeux moraux de l’aide informelle dans le but de dépasser les présupposés qui nuisent à la compréhension de cette thématique. La deuxième propose une réflexion politique pour montrer que la question n’est pas seulement enfermée dans la sphère domestique et qu’elle concerne la société. Elle pourrait être résolue autour d’une conciliation entre care et justice. Pourquoi le care devrait-il être le cœur de la justice ? Cette analyse ouvrira à un examen sur notre responsabilité de protéger les personnes vulnérables et à une réflexion sur la dépendance secondaire associée au travail de care.In the 90's, ambulatory transfer increased care-giving at home in a period where paradoxically the population is ageing. Even though, this policy will allow a better distribution between formal and informal care, we must remain cautious on its actual consequences when families are confronted during a long term to a disease of one of its members. One real consequence is that the increased caregivers’ vulnerability. Due to the awareness of the aging population and the need for progress in research on neurodegenerative diseases, some politicians have committed to make of informal caregivers one topic of current interest. However, it is not so. How to express the vulnerability of caregivers and to emphasize that its overcoming represents an important social justice issue? Such is the key issue of this research. My goal is to demonstrate how public policies on dependency have consequences on private choice and by the way on caregiver's opportunity. This dissertation explores the way in which the labor of caregivers would be recognized in a just society. Caregivers who provide care for their own children, a disabled member of their family or older have less income and wealth, lower status, and fewer job opportunities than non-caregivers An adequate theory of justice should recognize these disadvantages as injustices In particular, it should allow caregivers to choose to take care of to a dependent person. I study this question in two parts. In the first section, I explore the moral issues of informal care in order to overcome assumptions that impede a proper understanding of this topic. The second part offers a political thought in order to show that this issue is not only confined to the domestic sphere and it relates to society. It is about reconciliation between care and justice that it could be resolved. Why care should be the heart of justice? This analysis opens a review of our responsibility to protect the vulnerable and questioning the secondary dependence associated with work done with these people.
Doctorat réalisé en cotutelle avec l’Université Paris I- Panthéon Sorbonne.
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Bakalarczyk, Rafał. "Polityka wsparcia nieformalnych opiekunów niesamodzielnych osób starszych. Na podstawie zmian prawnych w latach 2003-2015." Doctoral thesis, 2016.
Find full textAbstract:
Praca jest poświęcona polityce wsparcia osób opiekujących się osobami starszymi, które zostały dotknięte ryzykiem niesamodzielności. Analiza obejmuje okres 2003-2015. Głównym celem jest eksploracja i opis określonej w tytule problematyki, a także dostarczenie narzędzi do analizy, oceny i projektowania systemów wsparcia opiekunów w przyszłości. W pierwszym rozdziale zostało przedstawione ryzyko niesamodzielności jako ryzyko socjalne, a następnie ryzyko socjalne, jakiemu podlega opiekun osoby niesamodzielnej osoby starszej, w wymiarze socjalnym, zawodowym, zdrowotnym i psychospołecznym. Następnie autor pokazuje ryzyko niesamodzielności i skalę potrzeb opiekuńczych w starzejącym się społeczeństwie polskim oraz rozważa źródła silnego oparcia systemu opieki długoterminowej wobec niesamodzielnych osób starszych na zaangażowaniu rodziny i opiekunów nieformalnych. Wśród potencjalnych przyczyn tego stanu rzeczy autor wyróżnia i omawiana: silne, kulturowo zakorzenione, oczekiwania społeczne wobec rodziny jeśli chodzi o opiekę i pomoc niesamodzielnym osobom starszym; ograniczony dostęp do wsparcia instytucjonalnego w zakresie opieki długoterminowej; a także treść regulacji prawnych, w ustawy o pomocy społecznej, która nadaje pierwszeństwo opiece świadczonej przez osoby z najbliższego otoczenia względem opieki instytucjonalnej.Drugi rozdział przedstawia cele i instrumenty wsparcia opiekunów nieformalnych niesamodzielnych osób starszych pod kątem występowania ich w polskim porządku prawnym w analizowanym okresie oraz dylematów towarzyszących stosowaniu poszczególnych instrumentów. Autor podzielił omawiane instrumenty na dwie zasadnicze grupy: wsparcie materialno-finansowe i pozamaterialne. Rozważania z drugiego rozdziału prowadzą do wniosku, że polski system wsparcia opiekunów zdominowany jest przez wsparcie o charakterze materialno-finansowym, zwłaszcza pieniężnym (realizowane w formie świadczeń opiekuńczych na mocy ustawy o świadczeniach rodzinnych).Trzeci rozdział zawiera periodyzację zmian prawnych w zakresie wsparcia opiekunów wraz z pokazaniem czynników jakie je warunkowały oraz konsekwencji poszczególnych zmian. Szczególnie dokładnie omówione są zmiany i dyskusje wokół w nich w okresie 2013-2015, kiedy to autor w sposób uczestniczący przyglądał się dialogowi środowiska opiekunów niepełnosprawnych osób dorosłych ze stroną rządową. Jak pokazała analiza, głównym przedmiotem zmian jak i sporów okazała się kwestia wysokości świadczeń jak i kryteriów uprawniających do skorzystania z nich.Czwarty rozdział poświęcony jest kryteriom dostępu do wsparcia. Autor tworzy schemat podziału kryteriów wsparcia opiekunów na trzy grupy: socjalno-ekonomiczne, opiekuńcze i społeczno-rodzinne, a następnie omawia zastosowanie poszczególnych ich rodzajów w Polsce i rozważa zasadność ich użycia w dotychczas istniejącym kształcie prawnym. Wśród kryteriów socjalno-ekonomicznych szczególnie dokładnie zostało omówione kryterium dochodowe oraz kryterium całkowitej rezygnacji z pracy, gdyż to ich spełnienie warunkuje otrzymanie pomocy. Wśród kryteriów opiekuńczych autor omawia m.in. poziom niesamodzielności, poziom zaangażowania w opiekę i jej aspekty jakościowe, zaś wśród kryteriów rodzinno-społecznych między innymi charakter więzi między opiekunem i podopiecznym oraz strukturę gospodarstwa domowego, z uwzględnieniem udziału osób wymagających opieki. Całość pracy wieńczy zakończenie zawierające wnioski i rekomendacje.The subject of dissertation is policy of support to informal carers of infirm elderly people in Poland. The analysis refers to the years 2003-2015. The main purpose is to explore and to describe the subject, but also to provide some tool to analyse, evaluate and project policy in that field in the future. First chapter starts with the description of categories such as long-term care and the risk of infirmity. Then, author moves to the description of being the carer of elderly person as a social risk. He distinguishes three aspects of that risk: poverty risk, poorer situation on labour market and risk of losing the health and psycho-social wellbeing of carer. Next, author shows the scale the risk of infirmity among elderly people in Poland and the way their caring needs are met. Finally, author examines what may be the reason for a huge role of family in polish long-term system concerning the elderly people. He points and elaborates three hypothetical factors that lead to family oriented model of elderly care in Poland: historically and traditionally rooted, social expectations that caring for the elderly family, the limits of formal care provision and access and the shape of law regulations that favour care provided by social actors form close surrounding, not public institutions.The second chapter is devoted to the goals and instruments of support to the informal caregivers. After enumerating the goals that can orientate such policy, author focuses on the question of the forms of support and their typologies. He decides to use his own way of dividing the forms of support into two groups: material and financial on the one hand, and the non-material on the second. The profound analysis of certain forms of support of both type in reference to the polish system of support to the carers leads to conclusion that system in Poland is based on material (especially financial) support, meanwhile the non-material help is not well-developed. In the third chapter author describes the evolution of policy of financial support to caregivers, considering the changes in regulatons, processes that stimulated that changes (such as social protests) and critical discussion about it. The most precise analysis refers to the years 2013-2015, when author used to participate in social dialogue between government and the representatives of carers. The analysis leads to the conclusion that main subject of the legislative changes and the argues between government and caregivers representation referred to the generosity of benefits and the conditions used to check who is eligible to support. The last chapter focuses on the criteria used to limit the access and the generosity of benefits. Author, divides the criteria into tree broad groups: socio-economic, caring, and social-family criteria. He examines which of them (and in what form) are used in polish policy and analyse the advantages and disadvantages of using them. Much attention is put on the income-test and the condition of total resignation from labour market activities, that are two main condition of getting support to carers according to national law.The final part includes not only conclusion but several recommendations on what direction the system should be reshaped in the future in order to gain the goals of support policy and to counteract the social risk of carer in the dimensions, mentioned in previous chapters.
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Martins, Maria de Fátima Baptista Pereira. "Cuidadores informais de idosos dependentes: um estudo na freguesia dos Olivais, Lisboa." Master's thesis, 2016. http://hdl.handle.net/10071/12953.
Full textAbstract:
A população em Portugal encontra-se envelhecida e a tendência é para que esse
envelhecimento aumente nos próximos anos. Esta nova realidade desencadeou novos desafios
especialmente a necessidade de existência de cuidadores informais para os idosos com
dependência.
O estudo desenvolveu-se na freguesia dos Olivais, em Lisboa pois a proporção de
idosos é superior à que se verifica em Portugal, dada a relação de proximidade existente entre
o investigador e o objeto em estudo e devido ao conhecimento que este tem da realidade
observada. Apesar de já haver vários estudos sobre este tema julga-se que este se torna
pertinente pois foi aplicado numa zona urbana onde a estrutura etária da população está a
envelhecer. A nossa opção metodológica foi por um estudo de abordagem qualitativa, tendo
sido utilizada a entrevista semidiretiva. Para a análise das respostas foi utilizada a técnica da
análise de conteúdo. Outra técnica utilizada foi a observação participante. Os cuidadores-alvo
deste estudo foram abordados pessoalmente pela investigadora/autora desta dissertação nas
consultas da Unidade de Saúde Familiar Jardins da Encarnação, Lisboa. O método de
amostragem utilizado foi não aleatório ou não probabilístico. A amostra foi de conveniência,
constituída por 17 cuidadores, que aceitaram participar no estudo.
De acordo com os resultados podemos concluir que a prestação dos cuidados
informais é totalmente da responsabilidade dos elementos da família e o mesmo se verifica
em relação aos seus progenitores. Em relação à idade, verificamos que a idade dos cuidadores
se situa entre os 47 anos e os 63 anos de idade, dando uma média de 55 anos. A maioria dos
cuidadores são do sexo feminino apesar do género masculino se começar a evidenciar na
prestação de cuidados. Quanto à proximidade geográfica com o idoso os cuidadores moram
próximo. Em relação ao estado civil os casados assumem maior proporção. Na prestação de
cuidados, verificamos que a maioria dos cuidadores de idosos dependentes, fazem-no há mais
de quatro anos, as principais motivações são as afetivas. Sobre os aspetos negativos os
cuidadores informais de idosos dependentes referem as alterações na vida pessoal. Sobre os
impactos sentidos na prestação de cuidados referem os socioeconómicos e os emocionais.The population in Portugal is aging and the trend is that aging increases in the coming years. This new reality brought new challenges especially the need for existence of informal caregivers for the elderly with dependence. The study was developed in the parish of Olivais in Lisbon because the proportion of elderly is higher than that found in Portugal, for the existing close relationship between the researcher and the object under study and the knowledge that the researcher have of the observed reality. Although there are already several studies on this subject it is thought that this becomes relevant because it was applied in an urban area where the age structure of the population is aging. Our methodological choice was a qualitative study, and we used a semistructured interview. For the analysis of the responses was used the technique of content analysis. Another technique used was participant observation. The target caregivers of this study were approached personally by the researcher / author of this dissertation in the consultations of the Family Health Unit Gardens of the Encarnação, Lisbon. The sampling method used was the not random or not probabilistic. The sample of convenience consisting of 17 caregivers who agreed to participate in the study. According to the results we can conclude that the provision of informal care is entirely the responsibility of family members and the same is true for their parents. In relation to age, we found that the age of caregivers is between 47 and 63 years, giving an average of 55 years. Most caregivers are women despite the males begin to show in care. Regarding the geographical proximity to the elderly caregivers live close. Regarding marital status married assume greater proportion. In care, we found that most caregivers of dependent elderly do it more than four years ago. The main motivation is the affective. On the negative aspects of informal caregivers of dependent elderly relate changes in personal life. On the impacts felt in care highlights the emotional overload.
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Santos, Dina Isabel Francisco Alberto. "As vivências do cuidador informal na prestação de cuidados ao idoso dependente : um estudo no Concelho da Lourinhã." Master's thesis, 2008. http://hdl.handle.net/10400.2/732.
Full textAbstract:
Dissertação de Mestrado em Comunicação em Saúde apresentada à Universidade AbertaO cuidar é comum a todas as culturas, embora as suas formas de expressão possam ser as mais variadas; cabe à família esse papel, pois é essencialmente ela que executa e se responsabiliza pelo cuidado. A prestação de cuidados requer um esforço contínuo ao nível cognitivo, emocional e físico, muitas vezes não reconhecido e inadequadamente recompensado. Cuidar de quem cuida é também uma responsabilidade e deverá ser uma preocupação de todos nós, bem como dos decisores políticos. Os cuidadores familiares representam novos desafios para a sociedade. Esta investigação teve como questão central analisar em que medida as vivências do cuidar influenciam a vida do cuidador informal familiar principal do idoso dependente, inseridos no Programa Cuidados Continuados do Centro de Saúde da Lourinhã. Os objectivos do estudo passaram por conhecer as vivências sentidas pelo cuidador informal familiar principal, no cuidar do idoso dependente, inserido no Programa de Cuidados Continuados do Centro de Saúde da Lourinhã; compreender de que forma o cuidar afecta a vida do cuidador; contribuir para a proposta de elaboração de programas de apoio para os cuidadores familiares no Centro de Saúde da Lourinhã. O estudo foi realizado na região da Estremadura de Portugal, na região Oeste, concelho da Lourinhã. A população do estudo é de trinta cuidadores informais familiares principais de idosos dependentes, inseridos no Programa de Cuidados Continuados do Centro de Saúde da Lourinhã, sendo constituído por uma amostra de conveniência. A nossa opção metodológica situa-se na triangulação dos modelos quantitativos e qualitativos. Os instrumentos utilizados para a recolha de dados foram a entrevista semi-estruturada e a escala de Zarit Caregiver Burden Interview. No tratamento dos dados, utilizámos a estatística descritiva e a análise de conteúdo. As entrevistas foram realizadas no domicílio do cuidador, durante os meses de Abril a Maio de 2007. Os cuidadores são predominantemente do sexo feminino, uma vez que é a mulher que continua a deter o papel de cuidadora, embora o homem se esteja a revelar nesse processo, ainda não assume a proporção dos cuidadores do sexo feminino. A faixa etária varia entre os 30 e os 82 anos. A maioria é casada, ou seja, dividem as responsabilidades da casa e da família com as actividades de cuidados. Quanto ao grau de parentesco com o idoso, a maior percentagem, são filhas, seguidas pelos cônjuges. Os resultados obtidos revelam que os motivos que levaram o cuidador a aceitar cuidar do idoso dependente foram o agravamento do estado de saúde do idoso, dever/obrigação, a ausência de outra resposta e o afecto/reciprocidade. As dificuldades sentidas pelo cuidador foram a fadiga, doença, sobrecarga ligada ao tipo de trabalho executado, a não-aceitação do estado de dependência do idoso. O apoio cedido por parte da rede informal que assume maior evidência é o emocional/ psicológico. As mudanças sentidas pelo facto do cuidador prestar cuidados ao idoso passam por alterações ao nível familiar, com maior incidência numa maior aproximação entre o cuidador e o idoso e um afastamento por parte da rede informal familiar. Ao nível das alterações da rotina diária verificamos que o cuidador refere ter menor disponibilidade de tempo para si próprio, bem como uma menor disponibilidade de tempo para a execução das actividades domésticas. No âmbito profissional, em algumas situações o cuidador foi obrigado a renunciar ao emprego, faltar ao trabalho e/ ou ajustar o seu horário de acordo com as necessidades do idoso dependente. Na saúde, verificamos alterações no domínio físico e psicológico. Por último, no campo social evidenciou-se uma restrição na actividade social do prestador de cuidados
Caring is a common activity in all cultures, although there are many different ways of providing people what they need for their health. It is a role that belongs to the family since it is usually the main responsible for the act of caring. Taking care for somebody requires a continuous cognitive, emotional and physical effort that is not always appreciated nor appropriately rewarded by society. Taking care for somebody who cares is also a great responsibility and should be a matter of worrying for all of us, citizens, as well as for politicians. The family members who care for a relative are a new challenge to our society. This investigation was based on a particular issue: analysing how the experience of taking care for a relative may influence the caregiver’s life. These carers are part of the “Cuidados Continuados do Centro de Saúde da Lourinhã", (a continuous caring program, carried out in Lourinhã). We had different purposes when we undertook this study: identifying the experiences related to the individuals who take care for a dependent elder relative; understanding how taking care for a relative may influence the caregiver’s life; and helping to prepare supporting programmes addressed to the caregivers that are related to Lourinhã’s cottage hospital. The study was done in Lourinhã, a region that is part of an area called Estremadura, in the west of Portugal. The sample of our study consists of thirty people, who care for a dependent elder relative, and that are part of the “Programa de Cuidados Continuados do Centro de Saúde da Lourinhã". The method chosen is part of a triangle based on quantitative and qualitative models. The tools used in order to collect the necessary data were the interview and the Scale of Zarit Caregiver Burden Interview. When analysing the data, we used the descriptive statistics and the analyses of content. The interviews were undertaken at the caregiver’s home, during April and May 2007. The carers are predominantly women, since they are still the ones who hold the responsibility for taking care for elder relatives most of the times. Although men are beginning to get involved in this process, they are part of a smaller group. The age of these people varies among 30 and 82 years old. The majority is married, which means they have to deal with responsibilities related to both housework and care. Most of these women are daughters of the individuals who are provided with care, or their wives (although in a fewer number). The statistics show us that the reasons why the caregiver accepts the task of caring for a dependent elder person are related to his/her bad health; to the feelings of duty, affection and reciprocity; and to the lack of appropriate answers outside home. The problems identified by these carers have to do with the overload/burden that derives from the activities performed and with the nonacceptance of the dependency of the elderly. The main support given by the informal network is related to emotional and psychological issues. Therefore, the needs identified by the carers are more likely to be solved with the support of the informal network. The changes that derive from the act of caring from an old person have to do with family: there is often an approach between the carer and the old person and a growing distance among the carer and the other members of the family. As far as the carer’s daily routine is concerned, there is usually a lack of time to take care of him/ herself, as well as to do housework. Regarding the professional situation of the carer, we realized that there are people who have to give up working, miss work frequently or change his/ her timetable according to the dependent old person’s needs. We also realized that there are physical and psychological changes in terms of health. Finally, there are changes within the social life of the carer, who doesn’t have time to take part in social events
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Roy, Lina. "L’expression de l’identité d’aidant dont le proche est atteint de la maladie d’Alzheimer." Thèse, 2012. http://hdl.handle.net/1866/12828.
Full text
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Kaplanová, Tereza. "Možnosti podpory pro pečující rodiny o dospělé osoby s těžkým zdravotním postižením." Master's thesis, 2021. http://www.nusl.cz/ntk/nusl-446461.
Full textAbstract:
KAPLANOVA, Tereza. Possibilities of support for family caregivers in providing care for adults with a serious health handicap. Prague: Faculty of Education, Charles University, 2021, - 69 p. Diploma thesis. The aim of the diploma thesis is to present the possibilities of support for caring families for adults with severe disabilities and to create appropriate recommendations for caregivers who care for their loved ones with severe disabilities in the home environment. The theoretical part defines basic information about home care, families in the role of caregivers of adults with severe disabilities. It defines the system of counseling care in the Czech Republic and focuses on informal home care. It also describes respite care as assistance to carers and defines palliative care. The practical part presents in the form of case studies specific cases of 4 families caring for adults with severe disabilities in home care. Furthermore, the work focuses on the specific needs of carers and the possibility of adequate support and assistance to these people. Based on case studies, research questions and analysis of practice with professional literature, a brochure is created, which is focused on the support of caring families. Key words: Home care, informal caregiver, family, palliative care, respite care.