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Thesis (Ph.D.)--Indiana University, 2007. / Title from screen (viewed on September 21, 2007). School of Nursing, Indiana University-Purdue University Indianapolis (IUPUI). Advisor(s): Tamilyn Bakas, Sharon Sims, Mary L. Fisher, Janet Welch. Includes vitae. Includes bibliographical references (leaves 228-244).

Background: Individuals with intellectual and/or developmental disabilities (IDD) are experiencing longer life expectancies with the majority requiring the ongoing support of family caregivers into adulthood. Medicaid is the primary funding source for supports and services for adults with IDD. Growing Medicaid expenditures and goals to improve quality of care are driving more states to move their Medicaid fee-for-service programs into a managed care model. The stated goals of Medicaid managed long-term services and supports (MLTSS) are to improve care coordination and access to care while controlling costs, but the evidence regarding these outcomes is limited and mixed. Given the level of uncertainty about MLTSS for adults with IDD and their family caregivers, best practices recommendations have been produced by the federal government and advocacy agencies to help guide future MLTSS implementation efforts. These best practice recommendations combined with the continued expansion of MLTSS in the states, provided an opportunity to further explore implementation of MLTSS to inform both policy and practice. One state which recently reformed their Medicaid program to MLTSS and which has been referred to as a bellwether state is Kansas. The MLTSS program in Kansas, titled “KanCare”, is the first for adults with IDD to integrate across health, behavioral health, and LTSS while also contracting through three private-for-profit managed care organizations (MCOs). Aims: The objective of this study was to describe the current implementation of MLTSS for adults with IDD and their family caregivers in one state, Kansas. Study aims were as follows: 1) To understand the rationale behind and what actually happened with MLTSS implementation for adults with IDD in Kansas; 2) To understand how service coordination providers and family caregivers perceived care coordination and access to services for adults with IDD in MLTSS; 3) To understand how family caregivers and their roles were recognized in MLTSS for adults with IDD. Methods: A single case embedded design case study approach was used with in-depth semi-structured interviews completed with state/regional level representatives (N=13), MLTSS service coordination providers (N=7), and family caregivers of adults with IDD (N=11). Data collection and analysis were guided by the unified theory of family quality of life (FQOL) and Bronfenbrenner’s ecological model. The framework method was used to structure the data analysis process. Member checking was completed to ensure accuracy of results. Findings: Regarding aim one, respondents identified reducing costs and improving care quality as the rationale behind MLTSS, but these were outcomes not yet realized given the early stages of implementation. At the time of this study, the Managed Care Organizations (MCOs) were continuing to work on expanding provider networks and to provide additional services to address health disparities amongst individuals with IDD. Study participants identified the importance of adequate planning and stakeholder engagement to reduce confusion and fear when transitioning into MLTSS. Addressing aim two, timely and accessible consumer education, clear care coordination processes, and provider network adequacy were identified as important to influence the challenges experienced to date in care coordination and access to services. Regarding aim three, participants acknowledged the important role of family caregivers. At the current stage of the KanCare implementation, participants reported lack of formal processes for family caregiver assessment and a need for more proactive family support services planning. Conclusion: Lessons learned from this implementation experience include the importance of having long planning timelines and including stakeholder feedback into the design of MLTSS programs. Care coordination holds promise to better integrate care, but more research is needed to understand best practices for the provision of care coordination in MLTSS. In order to address access to services, MLTSS programs will need to work and build provider capacity and provider networks. MLTSS programs will also need to formally recognize the role of family caregivers by incorporating the use of family caregiver assessments to proactively plan for support needs.

<p>Mindfulness-based interventions (MBIs) have demonstrated efficacy in reducing symptoms in survivors of early-stage cancer and have shown promise in adults with advanced cancer and their family caregivers. These interventions may be especially helpful for coping with advanced cancer because acceptance and a greater focus on present-moment experiences are central to the adjustment process. Mindfulness may be a potential mechanism underlying MBI’s health effects, yet suboptimal assessment of mindfulness hinders examination of this hypothesis. Widely used self-report measures of mindfulness require participants to have high self-awareness and comprehend a complex skill and show limited responsiveness to MBIs. Behavioral assessment of mindfulness may address the limitations of self-report measures. The goal of the current study was to obtain preliminary evidence of the validity of a behavioral measure of mindfulness, Levinson and colleagues’ breath counting task, and its responsiveness to MBI among patients and caregivers coping with advanced cancer. Fifty-five patient-caregiver dyads were recruited from a university hospital and community clinics in Indiana. Dyads were randomized to either a 6-week MBI or a usual care control condition. Measures were administered at baseline prior to intervention (week 0), at the end of the 6-week intervention period (week 6), and 1-month post-intervention (week 10). Measures included the breath counting task, self-reported mindfulness, avoidant coping, and distress. Linear mixed modeling was used to determine whether the MEANING intervention led to increased behavioral and self-reported mindfulness compared to the usual care group. Caregivers in the MEANING condition showed improved behavioral mindfulness relative to caregivers in usual care, whereas patients in both the MEANING and usual care conditions showed relatively stable behavioral mindfulness over time. Additionally, there was no evidence that the MEANING intervention impacted behavioral mindfulness to a greater extent than self-reported mindfulness. To further examine the behavioral mindfulness measure’s validity, its relations with self-reported mindfulness, avoidant coping, and distress were examined at all time points. For both patients and caregivers, correlations between behavioral and self-reported mindfulness were small or nearly zero and were not uniformly positive. In the MEANING condition, correlations showed mostly small changes over time, and in the control condition, correlations generally showed little change over time. In addition, for patients and caregivers, most correlations between behavioral mindfulness and distress and avoidant coping were approaching zero or small. Results support the feasibility of the breath counting task in adults with advanced cancer and their caregivers, but provide limited support for its validity. The task warrants further evaluation in populations coping with chronic illness. </p>

Alzheimer's disease affects many people worldwide and is often cared for by a family member. It is not uncommon for family members to become caregivers. The aim was to describe the experiences of family caregivers in caring for a loved one with Alzheimer's disease. The method used was a literature review with a qualitative approach, conducted using Polit and Beck's (2020) nine-step model. Ten articles were identified and analyzed using thematic analysis. Results: The analysis resulted in three main themes and seven subthemes: Emotional reactions with subthemes: Transition from family member to caregiver, during the progression of the disease, fear for the future. The caregiver role with subthemes: Responsibility and duty, challenges and sacrifices, and the theme Need for knowledge and support and with the subthemes: Knowledge and Support. The conclusion shows that family members caring for their loved ones with Alzheimer's experience difficulties in handling the caregiver role, both emotionally and instrumentally. They often experience a lack of support from the healthcare system, highlighting the importance of nurses applying family-centered care. Suggestions for further research: Developing interventions to implement family-centered care.

Alzheimer's Disease is a progressive, irreversible neurodegenerative illness and the most common of the dementing disorders. Only few diseases disrupt patients and their relatives so completely or for so long a period of time as Alzheimer 's. Caring is held to be very demanding and emotionally involving. Caregiver burden has been defined as a multidimensional response to emotional, social, physical, psychological, and financial stressors associated with the caregiving experience. The objective of the 1st study was to assess the degree of burden and its possible change in family caregivers of the long-term sick family member with progressive Alzheimer's disease during eight-month monitoring. In addition to the common psychiatric examination the Mini- Mental State Examination (MMSE) was administered in patients to indicate the severity of the dementia and the Zarit Burden Interview was administered in caregivers to assessed degree of burden. The total of 60 people have been examined - 30 patients with AD and 30 their caregivers (24 females, 6 males) were recruited from the Department of Psychiatry, First Faculty of Medicine, Charles University in Prague and General University Hospital in Prague. At the beginning of the study there were 18 patients with mild stage of AD (60%), 11 patients suffered...

Bakgrund: Demenssjukdom är vanligt förekommande i samhället och leder till att den drabbade slutligen blir beroende av hjälp från andra. Anhörigvårdare står för en stor del av omvårdnaden men när omvårdnadsbehovet blir ohanterligt, sker ofta en flytt till särskilt boende.  Syfte: Att beskriva anhörigvårdares upplevelser när en person med demenssjukdom, som de vårdat, flyttar från det egna hemmet till ett särskilt boende. Metod: Litteraturöversikt där strukturerade sökningar gjorts i databaserna Cinahl och PsycINFO för att hitta relevanta kvalitativa vetenskapliga artiklar som svarar mot syftet. Analys har gjorts i flera steg, resultatet har slutligen sammanställts och sorterats in i olika huvud- och underrubriker. Resultat: Anhörigvårdare kan uppleva transitionen på olika sätt; känna frihet, sorg, saknad, skuld, skam och lättnadskänsla. Anhörigvårdare känner sig överväldigade av vårdtyngden i hemmet. Beslutet om flytt upplevs underlättas om stöd och stöttning från omgivningen finns. Det framkom att anhörigvårdare kan uppleva bristande kommunikation, information och stöttning från vårdpersonal på särskilt boende. Slutsats: Sjuksköterskan kan genom att stärka och stödja närstående bidra till minskad risk för ohälsa, orsakad av vårdtyngd och psykisk stress. Utifrån detta tydliggörs vikten av att se och uppmärksamma anhörigas upplevelser av transitionen när personen med demens flyttar till särskilt boende. / Background: Dementia is common in society and eventually leads to the person with dementia to become reliant on help from others. Family caregivers account for a large portion of the care, but when the need for care increases, a move to a nursing home is common. Aim: To describe family caregivers experiences when a person with dementia, whom they have cared for, moves to a nursing home. Method: A literature review. Structured searches were done using the databases Cinahl and PsycINFO to find relevant qualitative articles that answer the aim. The analysis was made in several steps, the result was sorted into main- and subcategories. Results: Family caregivers can experience the transition in many different ways; feel freedom, grief, loss, guilt, shame and relief. They feel overwhelmed by the burden of care at home. The decision to move the person with dementia can be eased by support from other people. Family caregivers can experience a lack of communication, information and support from the nursing home staff. Conclusion: The nurse can help decrease the risk of worsening health for the caregiver caused by caregiver burden and stress, by supporting the family caregiver. This shows the importance of acknowledging the family caregivers experiences of the transition when the person with dementia moves to a nursing home.

Bakgrund: Vid Alzheimers sjukdom försämras de kognitiva funktionerna vilket innebär svåra psykiska och sociala funktionsnedsättningar. Det finns inget botemedel för Alzheimers sjukdom och dess sjukdomsförlopp är långdraget med upp till 10–15 år och leder sedermera att personen avlider. I tidiga skeden av Alzheimers sjukdom riskerar anhöriga förbinda sig med orimliga åtaganden utan tanke på sjukdomens progression och det ökande vårdbehovet. Syfte: Syftet med denna studie var att beskriva upplevelsen av att vara anhörigvårdare till personer med Alzheimers sjukdom samt granska datainsamlingsmetoden i de valda artiklarna. Metod: Föreliggande studie var en beskrivande litteraturstudie med deskriptiv design som baserades på 12 artiklar med både kvalitativ och kvantitativ ansats. Materialet inhämtades genom sökningar i databasen PubMed. Huvudresultat: Resultatet visar att anhörigvårdare till personer med Alzheimers sjukdom upplever känslor av oro, stress, ångest, skam och skuldkänslor vid vårdandet av sin anhörige. Dessa känslor upplevs som värre i relation med att sjukdomen progredierar och det ökade omvårdnadsbehovet leder till att anhörigvårdare känner rädsla över att bli utbrända och ett förlorat hopp om framtiden. Motsatsen till detta är anhörigvårdare med ett förhållningssätt att varje dag var unik och därför accepterande sin nya roll i livet. Detta gav anhörigvårdare högre livskvalitet och upplevde därmed mindre nivåer av ångest i vardagen som resulterade i hopp om framtiden. Slutsats: Hur anhörigvårdaren upplever situationer som negativ eller positiv präglas av hur de hanterar och förhåller sig till situationer. Strategierna som används ger antingen ökad eller minskad stress och korrelerar med risken för att bli utbränd. / Background: Alzheimer's disease is impaired cognitive functions, which means severe mental and social disabilities. There is no cure for Alzheimer's disease and its course is up to 10-15 years and subsequently leads to the person dies. In the early stages of Alzheimer's disease relatives commit themselves with excessive commitments with no thoughts given to the disease's progression and the increasing need for care. Within the health care the health professionals sees the problems associated with being a family caregiver and the risk of them becoming burned out. Aim: The aim of this study was to describe the experience of being a family caregiver to people with Alzheimer’s disease and examine the data collection method in the selected articles. Method: The present study was a literature study with a descriptive design based on 12 scientific articles with both qualitative and quantitative approach. The material was gathered through searches in the database PubMed. Main results: The result shows that the family caregivers of people with Alzheimer's disease experience feelings of anxiety, stress, shame and guilt when caring for their loved one. These feelings are experienced as worse in relation with the disease progresses and the increased need for nursing leads to that the family caregivers feel fear of becoming burned out and feel lost hope for the future. The opposite of this is family caregivers with an attitude that every day was unique and therefore accepting their new role in life. This gave the family caregivers a higher quality of life and thus less experienced levels of anxiety in everyday life that resulted in feeling hope for the future. Conclusion: The experience of the family caregivers could either be positive or negative in managing of a person with Alzheiemer’s disease. The way of managing characterized how the family caregiver relates to situations. The managing of the strategys either reduce or induce levels of stress and correlates with the risk of being bournt-out.

Bakgrund: Behovet av palliativ vård ökar i takt med att befolkningen blir allt äldre och många patienter som är i en palliativ fas väljer att vårdas hemma den sista tiden i livet. Detta lägger ett stort ansvar på närstående som får en essentiell roll inom den palliativa vården och får agera som närståendevårdare. Syfte: Syftet med litteraturstudien var att beskriva närståendevårdares upplevelser av att vårda en palliativt sjuk person i hemmet. I litteraturstudien har även de inkluderade artiklarnas undersökningsgrupp beskrivits. Metod: Föreliggande studie var en beskrivande litteraturstudie baserad på 12 vetenskapliga artiklar med kvalitativ och kvantitativ ansats. Materialet inhämtades genom databassökningar i Cinahl och Pubmed. Resultat: Det framkom 3 huvudteman i resultatet; negativa upplevelser av att vara närståendevårdare i hemmet, Positiva upplevelser av att vara närståendevårdare i hemmet och Upplevelser av stöd från hälso- och sjukvårdspersonal. De negativa upplevelserna orsakades på grund av för stort ansvarstagande, ensamhet, påverkan på vardagslivet och brist på stöd. Positiva upplevelser var att de fick en fördjupad relation, att det var en meningsfull uppgift och att närståendevårdarna fick en förändrad syn på livet. Stöd från sjuksköterskan var viktigt för hur närstående upplevde situationen. Brist på stöd och kommunikation bidrog till en sämre upplevelse medan adekvat stöd och uppmärksamhet från sjuksköterskan underlättade situationen och gjorde upplevelsen mer positiv. Slutsats: Det är av stor betydelse att sjuksköterskan i den palliativa vården uppmärksammar och ger stöd till patienten och deras närstående. Genom adekvat stöd till närståendevårdare kan negativa upplevelser förminskas och fokus kan läggas på positiva aspekter av vårdgivarupplevelsen. / Background: The need of palliative care continues to increase due to the fact that the aging population is getting larger and many palliative patients choose to recieve care at home the final stages of life. This gives a major responsibility to the relatives that takes on an essential role in the palliative care and acts as an informal caregiver for the patient. Aim: The aim of this study was to describe relatives experiences of being a family caregiver for a person at the end of life. The included articles study sample is going to be analyzed in this study. Methodology: The present study is a descriptive literature study based on 12 scientific articles with both qualitative and quantitative approaches. The material was gathered through searches of the databases Cinahl and MEDLINE. Results: Three major themes appeared in the result; negative experiences with being a family caregiver at home, positive experiences with being a family caregiver at home and experiences of support from health care professionals. The negative experiences were caused due to overwhelming responsibility, loneliness, the effect on every day life and the lack of support. Positive aspects was a deeper relationship and a meaningful experience and also a changed view on life. The support from the nurse was important to how family caregivers experienced the situation, a lack of support and poor communication contributed to a negative experience while adequate support and attention from the nurse relieved the situation and made the experience more positive. Conlusions: In palliative care it is important that the nurse gives support and attention to the patient and the relatives. The negative experienes can be reduced by giving the family caregiver adequate support and more focus can be placed on the positive aspects of the caregiver experience.

Introduktion: Idag finns det ungefär 160 000 personer i Sverige som har någon form av demens, och risken att drabbas utav demens ökar med stigande ålder. Alzheimers är den vanligaste formen av demenssjukdom. Personer som befinner sig tidigt i sin Alzheimers utveckling klarar sig relativt bra med ett begränsat stöd från sin omgivning. Att vårda sin närstående med Alzheimers är krävande, och det ställs stora krav på den som är omvårdnadsansvarig. Syfte: Syftet med denna litteraturstudie är att beskriva anhörigvårdares upplevelse av att vårda sin närstående som lever med diagnotiserad Alzheimers sjukdom. Syftet är också att beskriva de valda artiklarnas undersökningsgrupper. Metod: En beskrivande litteraturstudie. Data har samlats in via PubMed och 10 artiklar valdes ut till denna litteraturstudie. Artiklarna var av antigen kvalitativ eller kvantitativ ansats. Resultat: Resultatet baseras på fem underrubriker utifrån anhörigvårdarnas upplevelser: "Upplevselsen av den psykiska påfrestningen", "brist på stöd och information", "upplevelsen av att vårda sin närstående utifrån ett genusperspektiv", "livsstilsförändringar" och "förväntningar och farhågor". Slutsats: Anhörigvårdarna är i stort behov av stöd och rådgivning både från sin sociala omgivning, men framförallt ifrån sjukvårdens olika institutioner. Sjuksköterskan har en viktig roll att fylla. Sjuksköterskan ska tillgodose både den som är drabbad utav Alzheimers, men även dennes anhöriga med individanpassad information och stöttning. / Introduction: Today, there are about 160 000 people in Sweden who have some form of dementia, and the risk out of dementia increases with age. Alzheimer's is the most common form of dementia. Persons who are early in their development of Alzheimer cope relatively well with limited support from their surroundings. Caring for relatives with Alzheimer's are demanding, and it places great demands on the care that is responsible. Purpose: The purpose of this study is to describe the experience of family caregivers for their relatives who live with diagnosed Alzheimer's disease. The aim is also to describe the selected articles study groups. Method: A descriptive literature. Data was collected via PubMed and 10 articles were selected for this study. The articles were of either qualitative or quantitative approach. Results: The results are based on five sub-headings based on family caregivers: "Feels notification of mental stress", "lack of support and information", "the experience of caring for their loved one from a gender perspective", "lifestyle changes" and "expectations and concerns". Conclusion: family caregivers are in great need of support and advice both from their social environment, but above all from different healthcare institutions. The nurse has an important role to play. The nurse will satisfy both the afflicted out of Alzheimer's, but also his family with personalized information and jacking.