The senior care means nowadays mostly the family care. This diploma thesis deals with the experience of family members with the care of a non-self-sufficient senior. The main aim is to take a look at this issue from the point of view of the caregivers and to examine how family caregivers perceive their situation. With the aging of the population, the question arises: how to properly set up a care system for the needs of an aging population members. For the right setting of intervention strategies, it is necessary to listen to those on whom lies the responsibility for the caretakers. The first part of the thesis consists of a theoretical establishment of family care and support, which is provided to the caregivers. Then, it covers various topics related to the changed role of the caregiver (eg. motivation for care, needs and difficulties of caregivers). The theoretical part of the diploma thesis concludes the chapter dealing with gender issues of caregivers. A qualitative research strategy was selected for the research and data collection was conducted through semi-structured interviews with 20 caregivers - 10 males and 10 females. The empirical part maps the care of a non-self-sufficient family member from the point of view both women and men. Afterwards, it describes the circumstances in which a...

Background: When a relative receives a cancer diagnosis the family caregivers are affected as well. Family caregivers are at high risk of developing caregiver burden since they´re exposed to stressful situations when they receive a greater responsibility towards their relative and other parts of life. The support the family caregivers receive from the health care and other social engagements is important for the caregivers wellbeing.  Aim: To describe how family caregivers experience their situation as caregivers to a relative with cancer and what kind of support they're in need of. Method: Literature review with qualitative articles. The quality of the articles was analyzed with a frame with five steps.   Results:  Three main themes with sub themes emerged. Family caregivers of relatives with cancer may experience an increased responsibility for their relative, the family and the household which can lead to feelings of inadequacy in their role as caregivers. Moreover, the caregivers may experience expectations from the health care and the relative to take on responsibilities. The caregivers also experience changes in their relationship to their relative and in relation to their own identity. They may experience the changes as stressful and be worried.  Family caregivers experience it to be important with social support from family, close relatives and people in similar situations. They wish for more support and information from the health care. Conclusion: The family caregivers describe caregiver burden in relation to their experiences of being overlooked and being in lack of social support and support from the health care. More research is needed to deepen the knowledge in the area. The themes from the study and previous research needs to be implemented in health care.  Keywords: Cancer, experiences, caregiver burden, support, caring science, literature review / Bakgrund: När en närstående drabbas av cancer påverkas även de anhöriga runt omkring dem. Vårdande anhöriga löper risk att drabbas av anhörigbörda då de utsätts för flera påfrestningar när de får ett större ansvar för sin närstående och andra delar av livet. Det stöd som de anhöriga får från hälso- och sjukvården och andra sociala sammanhang är viktigt för den anhörigas mående.  Syfte: Att beskriva hur anhöriga upplever det att vara vårdgivare till närstående med cancer och vilket stöd de behöver.   Metod: Litteraturöversikt med kvalitativa artiklar. Artiklarna kvalitetsgranskades och analyserades i fem steg.  Resultat: Tre huvudteman med underteman identifierades. Anhöriga till närstående med cancer kan uppleva ett ökat ansvar för sin närstående samt för familjen och hushållet vilket kan medföra att de upplever otillräcklighet i sin roll som vårdande anhörig. Vidare kan de uppleva förväntningar från vården och den närstående om att de ska ta ansvar. De anhöriga kan även uppleva förändringar både i sin relation till den närstående och i förhållande till sin egen identitet samt att de upplever stress och oro över dessa förändringar. För anhöriga till personer med cancer är det viktigt med socialt stöd från familj, närstående eller personer i liknande situationer. Från hälso- och sjukvården önskar de ökat stöd samt mer information om sjukdomen.  Slutsats: De vårdande anhöriga beskrev en stor anhörigbörda relaterat till upplevelser av att bli förbisedda och att de saknade socialt stöd och/eller stöd från hälso- och sjukvården. Mer forskning behövs för fördjupad kunskap inom området. Behovsområdena från studien samt tidigare forskning behöver implementeras i hälso- och sjukvården.  Nyckelord: Cancer, upplevelser, anhörigbörda, stöd, vårdvetenskap, litteraturöversikt

Bakgrund: Bröstcancer är idag den vanligaste cancersjukdomen bland kvinnor globalt. När en kvinna drabbas av bröstcancer tar ofta anhöriga ett stort ansvar för kvinnans omsorg i hemmet. Problematiken med anhörigomsorg är att anhörigas förutsättningar för att ge omsorg ser olika ut och att deras egen hälsa riskerar att påverkas. Syfte: Syftet var att belysa anhörigas upplevelser av att ge omsorg till en kvinnlig familjemedlem med bröstcancer. Metod: Metoden var en allmän kvalitativ litteraturöversikt med 11 artiklar som analyserades genom en kvalitativ innehållsanalys. Resultat: Två kategorier identifierades; Omsorgens utmaningar och Stöd i omsorgen. Under Omsorgens utmaningar identifierades två sub-kategorier; Svårigheter att ge omsorg och Känsla av att vardagen prövades. Under Stöd i omsorgen identifierades två sub-kategorier; Känsla av att stärka kvinnan och Behov av att vägledas. Slutsats: Anhöriga upplevde flera svårigheter med att ge omsorg. Den ökade belastningen på dagens hälso- och sjukvård gör att ansvaret för patientens omsorg ökar för anhöriga, vilket var svårt att ta sig an. Anhöriga upplever likväl att deras insatser gör skillnad. Trots att forskning understryker vikten av att se till alla familjemedlemmars behov och öka utrymmet för familjefokuserad omvårdnad, finns ett fortsatt behov av ytterligare forskning kring anhörigas upplevelser av familjefokuserad omvårdnad i dagens vård och omsorg. / Background: Breast cancer is the most common type of cancer among women globally. When a woman suffers from breast cancer the main responsibility of care is often taken by her relatives. The problem with relative care is that the relatives' conditions for providing care look different and that their own health risks being affected. Aim: The aim was to highlight relatives' experiences of providing care to a female family member with breast cancer. Method: The method was a general qualitative literature review with 11 articles that were analyzed through a qualitative content analysis. Result: Two categories were identified; The challenges of care and Support in care. Within The challenges of care two sub-categories were identified; The difficulties of providing care and The feeling that everyday life was tested. Within Support in care two sub-categories were identified; The feeling of strengthening the woman and Need to be guided. Conclusion: Relatives experienced several difficulties in providing care. The increased burden on today´s health care means that the responsibility for the patient's care increases for relatives, which was difficult to handle. Relatives still feel that their efforts make a difference. Although research emphasizes the importance of looking after the needs of all family members and increasing the scope for family-focused nursing, there is a continuing need for further research on relatives' experiences of family-focused nursing in today's care and nursing.

Sub-Saharan Africa (SSA) has a scarcity of research on autism spectrum disorder (ASD) and available early interventions, as most of what is known about the disorder is from highincome countries. Early detection and intervention methods were found to have positive effects on developmental delays and to alleviate symptom severity in children with ASD or at risk of it. There is a need for scalable interventions in low-resource settings, which are characterised by a lack of highly-trained specialists, infrastructure and funding. This study explored the barriers and facilitators to implementing and sustaining a caregiver-coaching ASD early intervention, informed by the principles of the Early Start Denver Model (ESDM), adapted for South Africa and for delivery by non-specialists. The study also identified some changes that could be made to improve intervention adoption and sustainability. Nine multilevel stakeholders involved in the implementation of the caregiver-coaching intervention were purposively sampled, individual in-depth interviews were conducted, transcribed verbatim and thematically analysed. Major implementation facilitators included: ECD worker baseline ASD knowledge and experience; skills gained from the training received and coaching; clear in-session caregiver-coaching structure; value of strong team relationships; clear video illustration of intervention concepts; and the mastery and generalisation of skills by the ECD workers, ECD supervisors and caregivers. Implementation barriers included: the complexity of the intervention and coaching concepts; misalignment of ECD teacher training with the caregiver-coaching approach; logistical challenges; and mismatch of the video content with the South African context. Facilitators to sustain the intervention included: child outcomes; caregiver ‘buy-in;’ and competence; and the need for ongoing live supervision. Barriers to sustaining the intervention included: structural issues of poverty, transportation and unemployment. Positive child and caregiver outcomes could be offset by larger contextual and system-level issues such as poverty and the need for ongoing support, supervision and local coaching materials in South African languages. The results will inform tailoring of the intervention training and supervision approach for a larger pilot study.

Indiana University-Purdue University Indianapolis (IUPUI) / The number of patients with chronic heart failure (HF) is at an all-time high and the incidence is expected to increase as our population ages. HF patients experience impaired cognition, exertional shortness of breath, and persistent fatigue; therefore, family members are needed to assist with their care at home. Although existing literature suggests that HF caregivers experience negative physical, mental, and social outcomes, there is a lack of studies guided by a conceptual model to determine factors associated with these outcomes. The purpose of this study was to determine factors associated with HF caregiver depressive symptoms, life changes, and quality of life guided by a conceptual model derived from Lazarus and colleagues’ transactional approach to stress. Psychometric properties of a new HF caregiver-specific quality of life (HFCQL) scale were also determined. Using a descriptive design, a convenience sample of 100 HF caregivers was interviewed by telephone using established measures along with the new HFCQL scale. The 16-item HFCQL scale, which measures physical, psychological, social, and spiritual well-being demonstrated evidence of internal consistency reliability (alpha = .89); 2-week test-retest reliability (ICC = .83); construct validity, as evaluated with factor analysis (loadings > .32) and hierarchical multiple regression (59% variance, p < .001); and criterion validity, as shown with significant (p < .001) correlations with the Bakas Caregiving Outcomes Scale (r = .73), SF-36 general and mental health (r = .45; .59), and a single overall QOL item (r = .71). Using hierarchical multiple regression, the model constructs accounted for 35% variance of depressive symptoms, 46% variance of life changes, and 59% variance of HFCQL (p < .001). Factors significantly associated with these outcomes included caregiving task difficulty, uncertainty, social support, and threat appraisal. Support for the conceptual model was provided, and potential areas for intervention development were identified. The new HFCQL scale showed potential as a quality outcome measure in HF caregivers, and might be used to screen HF caregivers for poor quality of life. Further research using the proposed conceptual model and the HFCQL scale is warranted. Tamilyn Bakas, DNS, RN, Chair

No description available.

No description available.

Bakgrund: I Sverige är det många människor med någon typ av funktionsnedsättning som varje år får insatser via LSS. År 2021 gick 6386 stycken insatser till barn mellan 0-12 år och 23362 stycken till barn och unga mellan 13-22 år. I och med detta är det en mängd vårdnadshavare i Sverige som lever med ett eller flera barn med funktionsnedsättning och insatser från LSS. Syfte: Syftet med studien är att ta reda på hur vårdnadshavare till barn som omfattas av personkrets ett i LSS, upplever insatser kopplat till sitt eget mående och vardag. Med insatser syftar jag i den här uppsatsen på avlastning i form av avlösarservice i hemmet, korttidsvistelse utanför det egna hemmet samt korttidstillsyn för skolungdom över 12 år utanför det egna hemmet i anslutning till skoldagen samt lov (LSS, 9§). Syftet är också att lyfta de närstående, i det här fallet vårdnadshavare, och undersöka deras perspektiv samt ge dem en röst och möjlighet att berätta om sina egna känslor kopplat till insatserna. Metod: Metoden jag har använt mig av är en kvalitativ semistrukturerad intervjustudie då jag vill ge möjlighet för mina respondenter att utveckla sina svar. Jag har intervjuat fem vårdnadshavare. Jag har använt mig av teorin om socialt stöd samt The stress process model och analyserat materialet med hjälp av en tematisk analys. Resultat: Respondenterna beskriver att det finns både positiva och negativa aspekter i de här insatserna. De negativa aspekterna är ett problem och kan resultera i att färre vårdnadshavare söker hjälp från samhället.  Diskussion: Studien visar bland annat på brister när det kommer till hur några LSS insatser är utformade och de kräver att familjen själva hittar en lösning som fungerar för dem. / Background: In Sweden many people with some kind of disability are granted help from The National Disability Act (LSS) every year. In 2021 6386 of the services went to children between the ages of 0-12, and 23362 of the services was given to children in the ages of 13-22 years. Because of this there are a number of caregivers in Sweden who live with one or more children with disability/disabilities who is given services from LSS.  Purpose: The purpose of this study is to explore how the caregivers experience the services of service at home, short time stay away from home for the child and short time supervision after school and on school holidays for children over 12 in the context of their own lives. The aim is also to raise the voices of the child’s caregivers and give them the opportunity to express their experience of help from LSS.  Method: The method I have used is a qualitative interview study. I wanted my study participants to have the opportunity to expand their answers. I have interviewed five caregivers. I have used The stress process model and Social support theory as theory in this study and analysed the data with the thematic analysis method.  Results: is confirmed by my participants that it is both positive and negative aspects in this type of services. The negative aspects are a problem and my result in less caregivers seeks help from the society. Discussion: My study shows gaps when it comes to how some contributions are designed and how they require the family to find their own solutions.

Providing care to child with a chronic, rare diseases has been identified as a major life stressor with a myriad of negative physical and mental health consequences. These stresses have previously been found to create burden that may impair caregiving efforts and increase the risk of mortality for both the caregiver and affected child. Many rare diseases affect children. It is not known how caregiver burden and the source of stress varies by disease. Qualitative methods have been used to understand caregiver experience with the rare disease, epidermolysis bullosa (EB), but no such studies have occurred in the United States. In order to better understand the experience of caregiving for a child with EB in the United States, a qualitative, phenomenological study was conducted. Data were collected via semi-structured interview concerning one primary research question, what is the general experience of being an EB caregiver?, and five sub-questions: (1) What stresses are specific to EB caregiving?, (2) How do EB caregivers learn to care for their child with severe EB?, (3) How do EB caregivers experience medical interactions?, (4) How do EB caregivers experience the hospitalization of their child?, and (5) How do EB caregivers cope with their caregiving role? Data analysis, using interpretive phenomenological analysis, yielded several novel findings. These included: an unusually strong emotional connection between the caregiver and child with EB, experiences of depersonalization or derealization for the EB caregiver during wound care, the positive impact of tempering expectations and celebrating for victories for the affected child, the regularity of medical injury for EB children, the traits of physicians perceived to be helpful or harmful, the stresses associated with hospitalization of children with EB, and how public recognition through community events buffers stress for EB caregiver. Finally, a framework of risk factor, protective factors, and burdensome outcomes was constructed. Risk factors were condensed into three domains: time constraints, financial problems, and pain in the affected child. Control and community supper were among the identified protective factors for EB caregivers. These findings have implications for counseling interventions for use EB caregivers, especially in hospital settings.

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.