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.

Bakgrund: Globalt lever 55 miljoner människor med en demensdiagnos. När en familjemedlem drabbas av demenssjukdom påverkas de närstående. Sjuksköterskan måste vara medveten om att båda parters hälsa och välmående samverkar med och påverkas av varandra. Syfte: Att beskriva närståendes upplevelser av att vara närstående till en person med demenssjukdom i ordinärt boende. Metod: Kvalitativ litteraturöversikt med induktiv ansats som grundas på 14 vetenskapliga artiklar. Analysen genomfördes med Fribergs femstegsanalys. Resultat: Efter analys framkom tre teman: "Upplevelsen av en förändrad livssituation”, ”Känslomässiga upplevelser” och ”Upplevelsen av ansvarsfördelning”. Resultatet visar att det var en lång och energikrävande väg till demensdiagnosen och att rollen som närståendevårdare väckte många känslor. Ansvarsfördelningen upplevdes inte som jämlik varken inom familjen eller relaterat till stöd och stödinsatser från hälso- och sjukvården. Slutsats: Det framgår att personal inom hälso- och sjukvården behöver få ökade kunskaper om demenssjukdom för att kunna informera och utbilda närstående och således kunna stärka deras empowerment. Resultatet kan öka hälso- och sjukvårdens förståelse för att vårdpersonal har bristande kunskap om demenssjukdom och att det påverkar hela vårdkedjan. / Background: Globally, 55 million people are living with a dementia diagnosis. When a family member suffers from dementia, the close relatives are affected. Nurses must be aware that the health and well-being of both parties interact with and are influenced by eachother. Aim: To describe close relatives’ experiences of being a close relative to a person with dementia in ordinary accommodation. Method: Qualitative literature review with an inductive approach based on 14 scientific articles. The analysis was made with Friberg’s five-step-analysis. Results: After analysis, three themes emerged: “The experience of changed life cirumstances”, “Emotional experiences” and “The experience of responsibility distribution”. Results show that the road to diagnosis was long and energy-consuming and that the role of an informal caregiver evoked many emotions. Responsibility distribution was not perceived as equal, either within the family or in relation to support from healthcare services. Conclusion: Healthcare professionals need increased knowledge of dementia to be able to inform and educate close relatives and thus strengthen their empowerment. The results can increase the healthcare system's understanding that healthcare professionals lack knowledge about dementia which affects the entire care trajectory.

The aim of this study was to identify differences in how the service respite care in ordinary housing is offered to people who are caring for or supporting relatives with dementia in nine municipalities in a region in southern Sweden. The study has focused on organizational factors that may affect the use of the service and the theoretical aspects of professional discretion and assessment principles in social work. To examine this, data was collected from a semi-structured survey (n = 59) directed to assistance officers and chief managers. Secondary quantitative data from a mapping of the nine municipalities support for people with dementia and their relatives was also included in the study. The methods used to analyse data were statistical analysis and quantitative content analysis. The span between equal and individual care have been studied to gain perspective on how local assistance officers and chief managers can adapt the availability and configuration of the service, in relation to the guidelines and the individual's needs. The results of the study show that there are differences in how municipalities offer respite care in ordinary housing for the informal carers and on what grounds they have access to it. There are also differences in the range of the service in some of the municipalities. Respondents estimate that they have wide professional discretion to adapt the service to individual needs, while they feel that the municipality's guidelines should be followed. Furthermore, the results show that use of the service is relatively low in the studied municipalities. To increase the use, respondents believe that security, confidence and trust are especially important in the relationship between the staff in home care services and the carers.

Lung transplantation is a treatment for patients with end stage lung disease; they will not survive without such surgery. A caregiver is essential for a patient to become eligible for a lung transplant and the caregiver plays an essential role in the transplant recipient’s care both before and after transplant surgery. Most caregiver research has been conducted on caregivers of persons with Alzheimer’s disease, dementia or on elderly patients, however, it is important to examine caregivers’ experiences caring for other patient groups with disabling conditions. Caregivers of transplant recipients are one such group. The purpose of this qualitative study, using a hermeneutic phenomenological approach, was to examine the lived experiences of caregivers of lung transplant recipients pre- and post-lung transplantation. The study used semi- structured, face to face, tape recorded in- depth interviews to document the experiences of a purposive sampling of 20 caregivers of lung transplant recipients. Interviews (English, Spanish) were transcribed verbatim and analyzed for emerging themes. The resulting 4 themes and 12 sub themes were: 1) Establishing the diagnosis; 2) Caregivers roles; 3) Caregivers psychological and psychosocial Issues; and 4) Support. The 12 sub themes were:1) Caregivers reaction to transplant option; 2) Caregivers’ lack of basic knowledge as related to lung transplant 3) Disease progression: Reality of unanticipated changes/fear of death; 4) Pre- transplant experiences; 5) Hospital course; 6) Home care; 7) Lifestyle changes and Social activities;8) Physical health and Emotional health ; 9) Financial and Employment issues;10) Family/Friends;11) Professional support; 12) Support groups. Study results demonstrated caregivers’ lack of knowledge about transplantation, dramatic changes in caregivers ‘family life, social activities, employment, and often financial status. Results also demonstrated a need for health care providers and policy makers to recognize caregivers’ stressful life changes and implement informational, psychological and emotional interventions and policies to assist these caregivers during their stressful and tedious experiences.

The overall aim of this thesis was to explore informal caregivers’ daily life with particular focus on those living with a spouse who has Chronic Obstructive Pulmonary Disease (COPD) in different grades, mild to severe, based on the ill person’s main concern. The study design was explorative, comparative and descriptive. The thesis included a literature review of 45 scientific articles and semi-structured interviews with 23 patients suffering from COPD, and 21 women and 19 men living with a spouse suffering from COPD. Data were analysed using content analysis, grounded theory, and phenomenography. Main findings: Men and women living with a spouse suffering from mild COPD did not experience changes in their daily life, and were not in need of support. It was when the COPD gradually escalated that their daily life was affected and they needed support. The caregiving women conceived that their daily life was socially restricted, they had changed roles, changes in health and changes in the couple’s relationship. The caregiving men’s daily life was conceived as burdened, restricted and the partner relationship was affected. The men’s attitude was to continue with their own life and own activities, and their approach to their caregiving situation was to view themselves as “Me and my spouse”. The main concern for people suffering from COPD was feelings of guilt due to self-inflicted disease associated with smoking habits. The thesis shows that there are differences in informal caregiving between males and females. Conclusion: This thesis shows that there are differences in male and female caregiving for a spouse suffering from COPD. The caregivers conceive and handle the caregiving situation in different ways. It is central that health professionals and municipality consider this along with the individual needs that are related to the development of the COPD. There is a need to identify the person who suffers from COPD and their spouses from the first contact onwards, to regularly follow the development of their situation and need of support.

The aim of this dissertation is to explore how informal caregivers for people with dementia (PWD), who are community dwelling (i.e., not in nursing homes), prepare and plan for disasters. The research site is a particularly hurricane-prone region of Florida, second only to New Orleans in its vulnerability. An underlying assumption of this research is that caregivers for PWD have to plan and anticipate problems that are unique to their role. The rationale for the study described here is that disaster planning and mitigation save lives (Tengs et al. 1995), but there is little or no literature on disaster planning for the frail elderly and their caregivers. Mixed methods design which includes: 1) participant observation; 2) staff interviews (n=8);3) preliminary caregiver interviews (n=5); 4) baseline chart/disaster plan review (n=290);5) intervention (presentation to staff and administration) and form revision; 6) follow-up chart/ disaster plan review (n=259); 7) caregiver survey(n=253);8) final caregiver interviews (N=15- total number of caregiver interviews 20); 9) disaster literacy testing (n=20); 10) final group interview with ACC administration. This work documents the way that caregivers talk about disaster planning and say they will do if a hurricane strikes and reflects on their past hurricane experiences. Major findings include gaps in the county run Special Needs Shelter services available in Florida for people with dementia. The response and difficulty that caregivers might face can depend on the stage of the disease.

No description available.

Optimizing meaningful engagement of older adults with multimorbidity and their caregivers as partners in health care research / Background: The importance of engaging older adults (> 65 years) with multimorbidity and their caregivers as partners in health care research has been widely recognized. Inclusion of patients as research partners has resulted in largely positive effects. However, little is known about how best to engage and support them in this role. The objective of this study was to examine how to optimize meaningful engagement of older adults with multimorbidity and their caregivers as research partners. Methods: The research objective was addressed using the persona-scenario method. Study participants were older adults with previous experience as a research partner or a research participant. Participants worked in pairs to create a persona and a scenario about how their persona(s) was involved on the research team. Analysis was conducted in two phases: (a) identification of themes, subthemes, and codes using a qualitative descriptive approach, and (b) interpretation of themes and subthemes into design specifications (actions and products). Results: Four persona-scenario sessions were held with 8 patient participants. Three major themes emerged from the data: (a) recruitment of patient or caregiver research partners (PCRPs); (b) planning for meaningful engagement; and (c) establishing collaborative relationships. These major themes contained 15 corresponding subthemes, and design specifications (52 actions and 37 products). Findings highlight key factors influencing the engagement of older adults with multimorbidity and their caregivers as research partners, such as the need for: early engagement of PCRPs; clarification of PCRPs’ roles and responsibilities; a flexible patient-centred approach to PCRP involvement; identifying and addressing barriers to their engagement (e.g., caregiving support, transportation); training about research; and continued dialogue and feedback to clarify roles and manage expectations. The results are important for identifying ways to promote greater patient engagement in research and ensure that the research reflects the needs of the patients it strives to serve. / Thesis / Master of Science (MSc) / The importance of engaging patients with multimorbidity and their caregivers as partners in health care research has been widely recognized. However, little is known about how to best engage and support them in this role. The objective of this study was to examine how researchers can best engage and support older adults with multimorbidity and their caregivers as research partners in health care research teams. The persona-scenario method was used for participants to create fictional stories. These stories were analyzed to shed light on specific strategies that can support older adults and their caregivers as partners on health care research teams, such as a patient-centred approach, identifying and addressing barriers to engagement, and clarifying roles and responsibilities on the research team. The results from this study can be used to inform research, policy, and education on supporting older adults with multimorbidity and their caregivers as research partners.

The aim of the diploma thesis themed Long-term care and the informal persons caring for clients is to identify both positive and negative aspects of the long-term care and its influence on physical and mental condition of persons taking care and their closest relatives. At first, the thesis deals with the issue of long-term care in the Czech republic and its division into two categories, formal and informal. Furthermore, the thesis presents the situation of the informal caregivers who have to face various obstacles arising from the nature of long-term care, such as their complicated relation with the formal institutions, lack of financial support, worsening of their lives' qualities and also lack of social recognition of their status. In order to retrieve the relevant information within the scope of the research question, the method using half-structured interviews was used. The research sample consisted of 7 female respondents from České Budějovice and its surroundings who were taking care of persons between the age of 5 and 71 years. The pesons suffered either physical or mental disorders. Some of them suffered both physical and mental disorder. At the beginning of the research the caregivers received two main questions. The first question was focusing on their perception of the current system of rules for informal caregivers, whether they support it or not. The second question aimed on describing the biggest positives and also the setbacks related to the care of person with some kind of disorder. The outcome of the interviews was that if a person decides to care of a close person with disorder there is a wide network of social services provided for him, even though it could be definitely improved. The issues which could be improved are primarily financial income of caregivers, accessibility and afffordability of relief services, providing more information and education for the informal caregivers, and last but not least the opportunity for caregivers' self-realization and their position at the labour market.

This thesis elaborates on the issue of informal care. By this term is meant a situation when a person who is dependent on somebody else's care receives this care from someone close, most often a family member of the dependent person. This type of care has been existing for a very long time but lately it has became a more frequently discussed topic and got higher attention in general. This thesis is focused on the process of increasing interest in the informal care by the public policy process towards informal care and caregivers. The main effort is put into identification of the most important events in history, actors and their mutual modes of interactions which are happening during the whole process as the rationale behind the basic line of evolution of position of the informal care and caregivers in the system of long term care. The thesis concludes that the reason for escalation of the interest in the informal care is an outcome of concurrent effort of few key actors who use different strategies for reaching their goals. On one hand, there are the European Union and the Czech Ministry of Labour and Social Affairs as the most important actors whose significant position in the whole policy creation process is given by the institutional setting. On the other hand, there are the caregivers who very...