Background: Heart failure (HF) is a leading cause of hospitalization, readmissions, and death in the United States. Patients hospitalized for HF are at risk for readmission, in- hospital mortality, and early post-discharge death. In the United States, inpatient care has been estimated to cost $83,980 over the lifetime of each patient with HF. The majority of patients with HF depend on caregiver support for successful HF self-care, which is essential for optimal patient outcomes. Support from caregivers is thought to be important for better self-care, and lower readmission and mortality rates. Yet, there are few studies considering the influence of caregivers on HF patient self-care, readmission, and mortality. Objective: The purpose of my dissertation was to determine the influence of HF caregivers on patient self-care, readmission, and mortality. The specific aims of this dissertation were to: (1) to determine if caregiver depressive symptoms mediate the relationship between family functioning and caregiver quality of life, (2) to determine if there is an association between living arrangements (living with someone vs. living alone) and all-cause readmission and death in patients with HF, and (3) to determine the efficacy of an in-hospital, multi-session, educational intervention for caregivers on heart failure patients’ self-care and 30 day readmission rate, and to evaluate the efficacy of the intervention on caregivers’ knowledge, self-efficacy and perceived control. Methods: Specific aim one was addressed by a secondary analysis of data from one- hundred and forty-three HF caregivers recruited from an outpatient clinic. Multiple regression with mediation analysis was used to determine whether depressive symptoms mediated the relationship between family functioning as measured using the three scales of the Family Assessment Device (i.e., general, problem-solving, communication) and caregiver quality of life. Specific aim two was addressed by a retrospective chart review of all 398 patients with a primary diagnosis of HF admitted to an academic medical center in one year. We collected data on patient sociodemographic, clinical characteristics, and patient living condition. The independent association of living alone with all-cause readmission or all-cause death was evaluated using Cox proportional hazards modeling adjusting for covariates. Specific aim three was addressed using a two-group (educational intervention for caregivers of patients with heart failure vs. usual educational care), prospective, repeated measures randomized controlled trial of 37 patient and caregiver dyads in which caregivers only received in-hospital HF education. Outcome measures included patient self-care, and patient all-cause readmission or all- cause death, as well as caregiver self-efficacy, knowledge, and perceived control. Patient self-care, and caregiver self-efficacy, knowledge, and perceived control were assessed at baseline (in hospital), at discharge, 7 and 30-days after patient discharge. Patient readmissions and death were assessed by a phone call at 30-days follow-up. The intervention directed only at caregivers consisted of three in-hospital, educational sessions with telephone follow-up. The educational sessions were designed to deliver HF information and skills to caregivers, thereby providing them with the resources needed to improve their self-efficacy, perceived control and HF knowledge thus improving patient self-care and readmission rates. Results: Specific aim one: The three subscales of the Family Assessment Device predicted depressive symptoms (p < 0.001) and caregiver quality of life (p < 0.001). Depressive symptoms also predicting caregiver quality of life (p < 0.001). The inclusion of depressive symptoms in the final model with each subscale of the Family Assessment Device (i.e., general family functioning, problem-solving, communication) decreased the significance of family functioning as a predictor of caregiver quality of life indicating mediation by depressive symptoms. Specific aim two: Heart failure patients living with someone experienced a significantly longer time to rehospitalization than those living alone (290 vs. 201 days, p=0.005). In a Cox regression hazard regression model, adjusting for covariates, patients who lived alone were 1.42 times more likely to be rehospitalized one year after discharge than those who lived with someone (p=0.013). The relationship between living alone and all-cause death was not significant after adjustment for covariates. Specific aim three: A linear mixed-model analysis revealed that patients whose caregiver was in the intervention group had significantly better self- care maintenance (p < 0.001) and self-care management (p < 0.001) across time. Cox survival analysis demonstrated that patients whose caregiver did not receive the educational intervention were 11 times more likely (p=0.002) to experience cardiac readmission than patients whose caregiver did receive the educational intervention. Caregivers who received the educational intervention had higher perceived control (p < 0.001) for up to 30-days post-intervention versus the control group, however, there were no differences between caregiver groups in self-efficacy and HF knowledge. Conclusion: In this dissertation, we found caregivers to play an important part in improving patient outcomes of self-care and readmission after discharge from a hospitalization for HF. Future large-scale studies are needed to develop and test interventions focused on caregivers to improve both patient and caregiver outcomes. Such studies will assist clinicians in understanding how better to support caregivers in their ability to positively influence HF self-care and readmission rates in patients with HF.

<p>Abstrakt</p><p>När någon i familjen drabbas av sjukdom, står oftast de närmast anhöriga för den vårdande omsorgen, vilket kan vara påfrestande för hälsan. Det senaste decenniet har det offentliga stödet till anhöriga uppmärksammats i Sverige, vilket har inneburit en satsning på 300 miljoner kronor, Anhörig 300. Vars avsikt var att stödja och underlätta de anhörigas livssituation. Då kan en stödjande verksamhet som anhöriggrupp, vara ett viktigt komplement för reflektion och utveckling med andra. Tillvaron är full av påfrestningar, vad är det som gör att vissa klarar av dessa, medan andra inte gör det? Antonovsky (1991) svar på detta är känslan av sammanhang (KASAM). Syftet med studie var att studera om och i så fall hur interventionen i en anhöriggrupp kan påverka de anhörigas KASAM. Arbetet inleddes med en genomgång av både litteratur och forskning, för att öka kunskap inom problemområdet. Datainsamlingsmetoden som användes var ett ”Livsfrågeformulär”. Urvalet bestod av anhöriga till person över 20 år som drabbats av sjukdom och/eller funktionshinder. Studien genomfördes som en för- och eftermätning av interventionen i en anhöriggrupp. Resultatet visade att KASAM förändrades, men inte endast i positiv riktning, vilket var författarnas hypotes. Detta behöver inte ses som något negativt enligt Antonovsky (1991), utan det är mycket vanligt att en utveckling föregås av ett tillstånd av obalans, vilket kan påverka KASAM tillfälligt. Vad som orsakade detta kan vara svårt att fastställa. De slutsatser som gjordes var att trots fördelar med stöd i grupp, så kan det vara svårt att påvisa att det var just det stödet som påverkade KASAM, däremot kan det ses som en resurs, enligt forskning, i omsorgsarbetet för de anhöriga.</p>

Abstrakt När någon i familjen drabbas av sjukdom, står oftast de närmast anhöriga för den vårdande omsorgen, vilket kan vara påfrestande för hälsan. Det senaste decenniet har det offentliga stödet till anhöriga uppmärksammats i Sverige, vilket har inneburit en satsning på 300 miljoner kronor, Anhörig 300. Vars avsikt var att stödja och underlätta de anhörigas livssituation. Då kan en stödjande verksamhet som anhöriggrupp, vara ett viktigt komplement för reflektion och utveckling med andra. Tillvaron är full av påfrestningar, vad är det som gör att vissa klarar av dessa, medan andra inte gör det? Antonovsky (1991) svar på detta är känslan av sammanhang (KASAM). Syftet med studie var att studera om och i så fall hur interventionen i en anhöriggrupp kan påverka de anhörigas KASAM. Arbetet inleddes med en genomgång av både litteratur och forskning, för att öka kunskap inom problemområdet. Datainsamlingsmetoden som användes var ett ”Livsfrågeformulär”. Urvalet bestod av anhöriga till person över 20 år som drabbats av sjukdom och/eller funktionshinder. Studien genomfördes som en för- och eftermätning av interventionen i en anhöriggrupp. Resultatet visade att KASAM förändrades, men inte endast i positiv riktning, vilket var författarnas hypotes. Detta behöver inte ses som något negativt enligt Antonovsky (1991), utan det är mycket vanligt att en utveckling föregås av ett tillstånd av obalans, vilket kan påverka KASAM tillfälligt. Vad som orsakade detta kan vara svårt att fastställa. De slutsatser som gjordes var att trots fördelar med stöd i grupp, så kan det vara svårt att påvisa att det var just det stödet som påverkade KASAM, däremot kan det ses som en resurs, enligt forskning, i omsorgsarbetet för de anhöriga.

Social support and acute care facility providers need information about how to help improve the practices and knowledge of caregivers related to the stages of palliative care. The purpose of this study was to examine whether there was a significant association between social support and psychological distress and behavioral outcomes among palliative care caregivers, and to determine to what extent social support buffered psychological distress and behavioral outcomes. The quality-of-life model guided the study. The study used a quantitative cross-sectional research design with secondary data analyses. The sample included 320 adult family caregivers who were part of a telephone survey on caregiver burden collected in 2000 representing the U.S. population. The independent variable was social support (caregivers' awareness of resources and receipt of direct support) and the dependent variables were psychological distress (anxiety, stress, and depression) and behavioral outcomes (sleep deprivation and patient abuse). Caregivers' receipt of direct social support significantly predicted reduction of psychological distress: anxiety (OR = .434, p < .001), stress (OR = .603, p < .041), and depression (OR = .464, p < .013). Social support was not a predictor of behavioral outcomes. The positive social change implications of this study include use of findings by healthcare providers and social service agents to formulate services to aid caregivers in reducing the burden of negative behavioral outcomes and improve quality of life of caregivers and their families.

No description available.

Stroke är den tredje vanligaste dödsorsaken i Sverige och risken för att insjukna ökar med stigande ålder. Vid stroke har personen drabbats antingen av en infarkt eller av en blödning i hjärnan. Restsymtomen efter en stroke kan uttrycka sig på olika vis. Vanligaste symtomen är domningar eller förlamningar i ansikte, armar och ben. Rehabilitering efter en stroke kan ta lång tid och efter sjukhusvistelsen är det ofta närstående som tar det största ansvaret för omvårdnaden av personen som drabbats av stroke. Syfte med studien var att undersöka närståendes upplevelser och erfarenheter av att vårda en person som drabbats av stroke. Litteraturöversikten genomfördes genom kritisk granskning och analys av kvalitativa och kvantitativa vårdvetenskapliga artiklar, enligt analysmodellen av Friberg (2006). Litteratursökningen gjordes i databaserna Cinahl och Pubmed. I resultatet framträdde två huvudteman : Förändrad livsvärld och Upplevelser och erfarenhet med hälso- och sjukvårdspersonal. Resultatet visade att närstående upplevde en stor livsförändring där rutiner och livsmönster ändrades och anpassades efter personen som drabbats av stroke. Det gjorde att närstående upplevde att det inte fanns tid för egna intressen. Närstående upplevde både psykisk- och fysisk ohälsa som stress, depression, ångest, högt blodtryck, magsmärtor och sömnsvårigheter. Många närstående upplevde att informationen från hälso- och sjukvårdspersonalen var otillräcklig. Det medförde att närstående kände sig osäkra på att vårda den som drabbats av stroke. Sjuksköterskor har möjlighet att påverka närståendes upplevelser genom att bemöta dem på ett respektfullt och lyhört sätt. Det handlar också om att de kan identifiera informationsbehovet för att ge adekvat information som kan stilla närståendes oro. / Program: Sjuksköterskeutbildning

The overall objective of the thesis was to investigate how older family caregivers in rural areas experienced participation in an e-health based caregiver support system. Participants were 95 caregivers allocated to intervention group (n=63) and control group (n=32). The thesis had a mixed method design and is based on four original articles (I-IV). Data was collected through web-camera interviews (I-III), telephone interviews (II,IV) and questionnaires (II,IV) after 1.5 years of using e-health support. Quantitative data was analyzed using comparative statistics, multiple linear regression and logistic regression. Qualitative data was analyzed with content analysis. Article I showed that the caregivers, despite lacking experience from using computers, were able to adopt the new technology, with help from support nurses and family. Caregivers felt e-health helped them to regain social inclusion. Article II had a comparative design, comparing e-health support with conventional caregiver support. Caregivers using e-health were more satisfied with their support and found it to be available, flexible and helping them enhance caregiver competence. Control group caregivers were less satisfied with support and experienced unmet needs. Article III showed that e-health can reduce caregivers’ feelings of isolation. Two themes were created, Expanding the concept of place and Developing networks. Article IV revealed that caregivers used e-health frequently, experienced benefits from using it and had become more independent. Support nurses were disappointed about the decrease in contact with caregivers, and also acknowledged a need for developing the professional nursing role while working with e-health. Conclusions drawn from the findings were that participants experienced benefits from e-health support and it helped them become more independent. Swedish municipalities are obliged to provide caregiver support, the findings from the study are valid to conclude that e-health support are as good as, or even more effective, than conventional support for older family caregivers in rural areas. / Det övergripande syftet vara att undersöka hur äldre anhörigvårdare på landsbygden upplevde att få anhörigstöd via en e-hälsa-tjänst. Avhandlingen hade en mixed method design och bestod av fyra originalarbeten (I-IV). Deltagare i studien var 95 personer, boendes i gles- och landsbygdsområden, som i det egna hemmet vårdade en make eller maka med kronisk sjukdom. Deltagarna var fördelade på interventionsgrupp (n=63) och kontrollgrupp (n=32). Datainsamling skedde efter 1.5 års användning av e-anhhörigstödet, genom web-kamera intervjuer (I-III), telefonintervjuer (II,IV) och frågeformulär (II,IV). Kvantitativa data analyserades genom komparativ statistik, multipel linjär regression och logistisk regression. Kvalitativa data analyserades med innehållsanalys. Artikel I visade att anhörigvårdarna, även om de inte hade någon vana av datorer sedan tidigare, kunde lära sig och bli användare av den teknik och utrustning som ingick i e-anhörigstödet, när de fick hjälp och stöd av anhörigstödjare eller andra. Anhörigvårdarna upplevde att e-anhörigstödet hjälpte dem att återfå social delaktighet. Artikel II hade en komparativ design och jämförde e-anhörigstöd med traditionellt anhörigstöd. De som använde e-anhörigstödet var nöjda med stödet i högre utsträckning än de som fick traditionellt stöd. E-anhörigstödet upplevdes som tillgänglig, flexibelt samt bidrog till att de utvecklade sin kompetens i vårdandet. Kontrollgruppen var mindre nöjd med sitt stöd samt upplevde att de hade behov som inte tillgodoseddes av stödet. Artikel III visade att e-anhörigstöd kan minska anhörigvårdares upplevelse av isolering, dels genom att de upplevde en känsla av att vara på andra platser fast de rent fysiskt befann sig i hemmet, dels genom att de utvecklade sociala nätverk. Artikel IV visade att anhörigvårdarna ofta använde e-anhörigstödet och att de upplevde nytta av att använda det. De blev också mer självständiga vilket ledde till färre kontakter med anhörigstödspersonalen. Personalen kände viss besvikelse över att kontakterna iv med anhöriga minskade och uttryckte att den professionella omvårdnads-rollen behöver utvecklas när e-hälsa införs och tillämpas i vård- och omsorgsarbete. Slutsatser som drogs från fynden i avhandlingen var att anhörigvårdarna hade stor nytta av att använda e-anhörigstöd samt att det hjälpte dem att bli mer självständiga, vilket reducerade deras behov av kontakt med kommunernas anhörigstöd. Sveriges kommuner har en skyldighet enligt lag att tillhandahålla anhörigstöd, med stöd av fynden från den här studien kan man dra slutsatsen att e-anhörigstöd kan fungera lika bra som, ibland till och med effektivare än, traditionellt anhörigstöd.

The worldwide ageing of the population, with an increase in associated chronic diseases, will inevitably escalate the demand for social work services at individual, group and community level. Alzheimer’s disease is one of the conditions associated with a population that is growing older. The disease was first described by Alois Alzheimer in 1906 and is characterised by progressive declines in cognitive and body functions, eventually resulting in death. It is estimated that 25 to 30 million people worldwide suffer from Alzheimer’s disease and that in 2050, 106.2 million people will be living with the disease, causing a looming global epidemic of Alzheimer’s disease (Brookmeyer, Johnson, Ziegler-Graham & Arrighi, 2007:186). At some stage in the disease’s process, most, if not all people with Alzheimer’s, require some form of care. This care is generally provided by informal (family) caregivers in the community. Providing care to an older person with Alzheimer’s disease present multiple challenges with many factors influencing the caregiving experience. When the needs of caregivers are not met, caregiver burden may result. For the many families living in rural and impoverished areas, this additional responsibility may come as an extraordinary burden and cause unwarranted stress. The goal of the study was to explore the needs and experiences of caregivers of persons with Alzheimer’s disease living in black rural communities in Mpumalanga. The guiding research question was: What are the needs and experiences of caregivers of persons with Alzheimer’s disease living in black rural communities in Mpumalanga? A qualitative research approach was followed with a collective case study research design. The population for this study was caregivers providing care to persons diagnosed with Alzheimer’s disease living within the Ehlanzeni and Nkangala Rural Districts Municipalities of Mpumalanga. Non-probability purposive sampling was utilised to generate a sample. Eleven participants who were caregivers of persons with Alzheimer’s disease living in communities within the above-mentioned municipalities were selected. Semi-structured individual interviews were conducted with participants. Interviews were voice recorded with the permission of the participants, and were transcribed by a contracted transcriber. The data gathered were analysed by the researcher and themes and sub-themes were identified. The research findings were presented by providing a profile of research participants followed by a thematic analysis of the themes and sub-themes from the transcriptions. Literature control and verbatim quotes were used to support the findings. The themes include the following: Theme One – The Alzheimer’s disease caregiver; Theme Two – Indigenous issues with regards to Alzheimer’s disease; Theme Three – Caregivers’ understanding of Alzheimer’s disease; Theme Four – The impact of Alzheimer’s disease on the caregiver and Theme Five – Support services in the community. The conclusions of this study reflect that caregivers in black rural communities in Mpumalanga have a number of needs and challenges in providing care to a person with Alzheimer’s disease. Some of the challenges include the absence of caregiving training, stigmatisation due to indigenous beliefs, traditional healers’ diagnosis and treatment of Alzheimer’s disease, limited knowledge of caregivers about Alzheimer’s disease, adverse physical, social and psychological outcomes associated with caregiving, negative experiences with the public health care system, and the limited availability and accessibility of support services in the community. The recommendations offered by this study can be used by professionals working in the field of gerontology to understand the needs and experiences of Alzheimer’s caregivers. Social workers can use the recommendations to find ways to make their services known to the communities, and improve their intervention and support to these caregivers. / Dissertation (MSW)--University of Pretoria, 2015. / Social Work and Criminology / Unrestricted

No / The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

Background: Information Communication Technologies (ICT)-mediated support can reduce family caregiver burden and may bridge service gaps caused by time constraints and language or cultural barriers. (Non)-usage behaviour can be explained using Andersen’s Behavioural Model of Health Service Utilization, Venkatesh’s Unified Theory of Use and Acceptance of Technology, Eysenbach’s Law of Attrition, and Wilson’s and Chatman’s Information Behaviour Theories. Purpose: This study aimed to describe and explain (non)-usage behaviour of ehealth services among Chinese caregivers. Method: This two-phase study used a mixed methods design involving 46 Chinese caregivers who cared for a family member with dementia. Usability of the ICT tools designed in the study was tested. Phase I participants (N=28) had access to a bilingual information site and personalized email support from professionals. Phase II participants (N=18) were randomized to use one of three enhanced features. Pre- and post-intervention data were collected, and qualitative interviews were conducted. Results: The Phase I ICT tools supported the core functions without major usability issues. Perceived efforts to use the ICT-mediated services influenced the consent decisions of Phase I caregivers (p=.036). Caregivers initiated service earlier if they had a higher acceptance of the service (p=0.017). Frequent users of email support experienced a decline of perceived burden compared with an escalation of perceived burden by non-users (p=0.023). An older age, greater caregiving competence, and lower English or computer proficiency explained non-usage behaviour. Requirements were identified to enhance the Phase I ICT tools. In Phase II, a test of three enhanced features showed there was no major usability issue. The intervention study found the enhanced features did not influence email use as hypothesized. Qualitative analysis showed usage patterns were explained by caregiver needs, caregiving beliefs, personal capacity, social support, ICT factors, and style of use. Non-users preferred Chinese to English compared with users (p=0.046). Integrating the theories and empirical findings, three concepts were developed to explain (non)-usage behaviour: usage in context, usage paths, and stages of use. Conclusion: Usage and non-usage behaviour can be explained by the service needs in the caregiving context, the use of non-ICT-mediated resources, and the access barriers to Internet use. Use of ICT-based support can be beneficial to caregivers if they do not drop out of the service.