Magister Scientiae - MSc (Mathematics) / The high prevalence of HIV/AIDS in Zambia has led to the development of innovative ways of coping with sickness related to this infection. HIV/AIDS home-based care is one such innovation designed in Chikankata Hospital in 1987. Home-based care depends on the availability of family members and community volunteers in the provision of care and support for People Living with HIV/AIDS (PLWHA).This minithesis is based on a qualitative descriptive case study exploring perspectives regarding skills, supervision and support mechanisms for carers in the Chikankata HIV/AIDS Community-Home Based Care (CHBC) program. The study utilized documented research, focus group discussions with carers and structured interviews with local CHBC supervisors, national experts in CHBC, and PLWHA and their families, to collect data from 32 study participants.The findings were that CHBC was being delivered by community volunteers with limited involvement from the local health services; that carers were highly motivated, personally and collectively mobilizing resources to meet the needs of CHBC clientele; that local arrangements for training, skills and support of carers were not aligned to national guidelines regarding process, content and duration of programmes; and that carers acquired skills in CHBC through formal and informal training processes and were facing challenges related to inadequate skills, poor infrastructure and extreme poverty in households caring for PLWHA.Based on the findings the local arrangements for coordination of CHBC need to be strengthened and linked to formal processes for technical support, financial resources and materials for delivery of CHBC in line with existing guidelines on CHBC. The picture of the real situation of the carers that emerges from this qualitative study might inform the supervising organizations and policymakers on the gaps in the training and support of this crucial cadre in the provision of quality care for People Living with HIV/AIDS (PLWHA) at community level. / South Africa

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The purpose of this study was to examine the effects short-term respite care had on caregivers of elderly and brain-impaired adults. The study also sought to examine the role that social support plays in determining satisfaction with respite care.

Flera studier fokuserar på kommunikationen mellan sjuksköterskor och patienter som får palliativ vård men inte på samtalen i sig. Det är vanligt att svårt sjuka patienter vårdas i hemmet vilket ställer krav på distriktssköterskors kompetens och deras sätt att samtala med dessa patienter. Syftet med denna studie var att utforska hur distriktssköterskor upplever samtalen med patienter som får palliativ vård inom kommunal hemsjukvård. Samtalen utforskas så att distriktssköterskor uppnår fördjupad kunskap kring fenomenet. Åtta distriktssköterskor i två kommuner i mellersta Sverige deltog i intervjustudien. En kvalitativ innehållsanalys med induktiv design valdes för att besvara syftet. Analysen resulterade i tre huvudkategorier och sju underkategorier. Huvudkategorierna benämndes; Lyhördhet i samtalen, Aspekter som påverkar samtalen, Aspekter som ger meningsfulla samtal. Efter bearbetning ledde analysen slutligen fram till det latenta, underliggande meningarna i intervjutexterna som blev ett tema; Intuition som färdighet. Det framkom att distriktssköterskor inte upplevde samtalen med patienter som får palliativ vård som svåra utan ofta tvärtom upplevdes samtalen meningsfulla och givande. Slutsatsen blev att distriktssköterskor som utvecklat medicinsk kunskap och hade längre arbetslivserfarenhet använde intuition som färdighet i större utsträckning. / Several studies focus on the communication between nurses and the patients who received palliative care but not on the conversations as such. It is common for severely ill patients to be cared for at home, which calls for high requirements on the district nurse's skills. The purpose of this study was to explore how district nurses experienced conversations with patients who received palliative care within home care services. The conversations are investigated to achieve in-depth knowledge of the phenomenon. Eight district nurses from two municipalities in the middle of Sweden participated. A qualitative content analysis with inductive design was chosen to answer the purpose of the study. The analysis resulted in three main categories and seven subcategories. The main categories were named; Responsiveness in the conversations, Aspects affecting the conversations, Aspects leading to meaningful conversations. After processing, the analysis finally led to the latent underlying meaning in the interview texts thus eventually becoming a theme; Intuition as a skill. District nurses did not experience the conversations as difficult, and often the conversations were meaningful and rewarding. The conclusion was that district nurses who developed medical knowledge and had longer work experience used intuition as skill to a greater extent.

Alzheimer's disease (AD) is the most common form of nontreatable dementia, a syndrome which reflects a progressive and global impairment of memory, intellect, and other cognitive abilities. This devastating condition directly touches the lives of as many as 10 million Americans, including not only persons suffering from the disease but their primary caregivers and other family members as well. At present the course of AD cannot be halted or reversed, and no cure is known. The problem, then, is how to most effectively respond to the psychosocial needs of primary caregivers in order to help them provide the best possible care for a loved one with AD.

Bakgrund Palliativ vård är en form av helhetsvård där målet är att uppnå bästa möjliga livskvalité för patient och närstående vid en livshotande och obotlig sjukdom. Palliativ vård kan med fördel bedrivas i hemmet och de närstående är vanligtvis en förutsättning för en välfungerande sådan. Närstående får axla ett stort ansvar över personen som är sjuk samtidigt som de handskas med sina egna känslor. Om de inte får möjlighet till att vara delaktiga i vården av personen som är sjuk kan det väcka negativa känslor och inte minst orsaka ett stort lidande. Syfte Syftet var att beskriva närståendes upplevelser av att vara delaktiga vid palliativ vård i hemmet. Metod Designen i studien utfördes i enlighet med en allmän litteraturöversikt och omfattade 15 vetenskapliga kvalitativa artiklar som publicerats mellan årtalen 2011–2020. Insamlade data inhämtades via databaserna PubMed (Public Medline) och CINAHL (Cumulative Index to Nursing and Allied Health Literature). En kvalitetsgranskning genomfördes i enlighet med Sophiahemmet Högskolas bedömningsunderlag och sammanställdes i en matris. De vetenskapliga artiklarna som inkluderades till litteraturöversikten analyserades enligt Kristenssons (2017) integrerade analys. Resultat I resultatet utformades två kategorier med faktorer som ansågs främjande och hindrande för närståendes upplevelser av delaktighet. Stöd, information, bekräftelse samt tillit och trygghet ansågs främjande medan otillräcklig information, bristande stöd, ansvarsbörda samt avsaknad av tillit och trygghet förelåg som hinder för delaktighet. Slutsats Resultatet visade att närståendes roll inom den palliativa vården i hemmet både är omfattande och ansvarskrävande. Brist på information och stöd är genomgående ett problem vilket i sin tur får förödande konsekvenser i form av utanförskap och isolering. Närstående förblir delaktiga i den formella vården men står utanför den informella vården, vilket bidrar till att upplevelsen av att vara delaktig inte blir meningsfull. Genom att sjuksköterskan har ett holistiskt förhållningssätt där närstående erhåller adekvat information och stöd längs hela processen kan situationen bli mer begriplig, hanterbar och meningsfull för både närstående och patient. / Background Palliative care is a form of holistic care where the goal is to achieve the best possible quality of life for the patient and their relatives in a life-threatening and incurable illness. Palliative care may benefit from being practiced in the home and the relatives are usually a prerequisite for a well-functioning palliative home care. Relatives often have great responsibility for the sick person and the whole situation, while dealing with their own feelings. If these people are not given the opportunity to participate in the care of the sick person, it can cause negative emotions and not least cause great suffering. Aim The aim was to describe the relatives' experiences of involvement in palliative care in the home. Method The design of the study was a literature review and included 15 qualitative scientific articles published between the years 2011-2020. Data was obtained through the databases PubMed (Public Medline) and CINAHL (Cumulative Index to Nursing and Allied Health Literature). A quality review was conducted accordingly with Sophiahemmet University's assessment documentation and compiled into a matrix. The included articles were analyzed according to Kristensson's (2017) integrated analysis. Results In the result, two categories were designed with factors that were considered to promote and prevent the relatives' experiences of participation. Support, information, confirmation, trust and security were considered encouraging, while insufficient information, lack of support, responsibility and lack of trust and security were obstacles to participation. Conclusions The result showed that the relatives' role in palliative care in the home is both extensive and demanding. Lack of information and support is a constant problem that in turn has devastating consequences in the form of exclusion and isolation. Relatives remain involved in the formal care but are excluded from the informal care, which contributes to make the experience of being involved less meaningful. Due to the fact that the nurse has a holistic approach where the relatives receive adequate information and support throughout the process, the situation can become more understandable, manageable and meaningful for both close relatives and patients.

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Syfte: Syftet med studien är att fånga vårdtagares upplevelser av självbestämmande.Bakgrund: Sverige har under de senaste åren dragit ner på platsernainom särskilt boende och istället satsat på hemtjänst och hemsjukvård. Enligtlag ska sjukvården värna om vårdtagarens självbestämmande oavsett var vårdenges. Metod: Semistrukturerade intervjuer genomfördes inom två olika distrikt isödra Sverige. Datamaterialet analyserades med hjälp av kvalitativ innehållanalys.Resultat: I studiens resultat framkom att vårdtagarna upplevde att de haft inflytandeunder den samordande vårdplaneringen och de flesta var nöjda medresultatet av besluten. Dock upplevde vårdtagarna att det ibland var svårt att påverkaden dagliga vården. Informanterna hade en önskan om att kunna påverkasovtiderna utefter behov och ha ökad tillgänglighet till extra hjälp vid behov. Detvar viktigt för vårdtagarna att ha samma personal och att det skulle finnas mer tidför hjälp. / Aim: The aim of this study is to capture home care patients’ experiences of selfdetermination.Background: In Sweden the number of residents in nursing homeshas decreased; the government has instead invested in home care services. Accordingto Swedish law, the health care system must preserve patients’ rights andself-determination, regardless to where the care is located. Method: Semistructuredinterviews were performed in two different districts in the south ofSweden. The data was analysed with qualitative content analysis. Result: Patientsreported that they experienced that their voices were heard during the care planningconference and were satisfied with the decisions that had been made. However,the patients experienced some difficulties influencing their daily care. Theinformants had a desire to be able to affect their sleep cycles based on their needsand wants, in addition to having an extended accessibility to extra care when required.It was important for the informants to have the same staff and get moretime for assistance.

Objective: To assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months. Methods: Of 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28-79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life. Results: Over subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use. Conclusion: The Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.