Bakgrund: En psykossjukdom är en sjukdom som inte bara drabbar personen själv utan hela dennes familj. Hela familjens livsvärld påverkas och familjelivet ansträngs hårt. Den psykossjuka familjemedlemmen erfar världen på ett annorlunda sätt. Vanliga symtom vid en psykos är bland annat hallucinationer och vanföreställningar. En bra vårdrelation mellan vårdgivare, den sjuka psykossjuka familjemedlemmen och anhöriga är en förutsättning för återhämtning. Syfte: Få ökad kunskap om och förståelse för anhörigas upplevelse av att leva med en familjemedlem med psykossjukdom. Metod: Metoden som valdes för studien var en systematisk litteraturstudie i vilken elva vetenskapliga artiklar analyserades med en kvalitativ innehållsanalys. Resultat: Tre kategorier framträdde ur data. Dessa visar att anhöriga bär på både känslomässiga och praktiska bördor samt att de har negativa erfarenheter av stöd och information av vårdpersonal. Slutsats: Resultatet i studien visar att psykossjukdom är en belastande sjukdom för anhöriga. Deras känslomässiga bördor är komplexa beroende på deras höga belastning av att vårda sin sjuka familjemedlem samt brister i bemötande av vårdpersonal.

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This qualitative multi case research asks how the needs of caregivers of primary malignant brain tumour (PMBT) patients are met through structured neuro-oncology programs in Canadian centres. Utilizing telephone interviews with eleven social workers and one psychologist the study analyses their perspectives on the scope and nature of services to brain tumour patients and their caregivers. PMBT is a rare and palliative disease often with neurocognitive and neurobehavioral effects posing special challenges for caregivers. Health care system reliance on family caregivers has resulted in significant implications for their emotional and physical risk. Findings show exclusive patient focused health care in ambulatory programs with fragmented care resulting in marginalization and invisibility of caregivers. This approach is inconsistent with current literature promoting collaborative family centered care, recommended for continuity of care throughout the illness trajectory. Recommendations focus on systemic caregiver service improvements.

This qualitative multi case research asks how the needs of caregivers of primary malignant brain tumour (PMBT) patients are met through structured neuro-oncology programs in Canadian centres. Utilizing telephone interviews with eleven social workers and one psychologist the study analyses their perspectives on the scope and nature of services to brain tumour patients and their caregivers. PMBT is a rare and palliative disease often with neurocognitive and neurobehavioral effects posing special challenges for caregivers. Health care system reliance on family caregivers has resulted in significant implications for their emotional and physical risk. Findings show exclusive patient focused health care in ambulatory programs with fragmented care resulting in marginalization and invisibility of caregivers. This approach is inconsistent with current literature promoting collaborative family centered care, recommended for continuity of care throughout the illness trajectory. Recommendations focus on systemic caregiver service improvements.

Background: A family caregiver is a person living close to an individual in need of care. Being a relative of an Alzheimer’s patient involves switching roles from being a family member to a care giver.  Studies have shown that it’s usually spouses and children especially daughters who offer care to their love ones in their homes. Family caregivers are faced with physical, psychological, emotional, social, and financial strain. Aim: The aim of this literature study was to describe the experiences and challenges of family caregivers of people with Alzheimer’s disease. Method: A literature study was conducted, and 11 original articles were selected from the databases PubMed and CINAHL; the selected articles went through a quality analysis with the help of a protocol for quality assessment of qualitative articles. Results: Caregivers viewed their needs as irrelevant and secondary to the needs of the person with dementia. The challenges that come with the role put a lot of strain on the caregiver. Caregivers weren’t prepared to carry out their roles due to lack of support from formal care. A lack of awareness and knowledge about dementia in the community was the leading cause of social stigmatization. Conclusion: With help from formal care, the caregiver doesn’t have to feel like their needs are secondary to their relative’s needs. Nurses, family caregivers and people with Alzheimer's disease are required to work hand in hand in order to achieve their common goal of good health. / Bakgrund: En anhörigvårdare är en familj medlem som vårdar närstående med vårdbehov. Att vara en närstående till en Alzheimers patient innebär att byta roller från att vara familjemedlem till vårdgivare. Studier har visat att det oftast är makar och barn, särskilt döttrar som erbjuder vård till sina närstående i hemmet. Familj vårdgivare står inför fysisk, psykologisk, emotionell, social och ekonomisk belastning. Syfte: Syftet med denna litteraturstudie var att beskriva erfarenheter och utmaningar av familj vårdgivare av personer med Alzheimers sjukdom. Metod: En litteraturstudie genomfördes, 11 original artiklar hämtades från PubMed och CINAHL och genomgick en kvalitetsgranskning med hjälp av en checklista för kvalitativa artiklar. Resultat: Närstående som vårdade den demenssjuke tolkade sina behov som sekundär till den personen med demens. Utmaningarna med rollen la stor belastning på vårdgivaren. Familj vårdgivare var inte beredda att utföra sina roller på grund av brist på stöd från formell vård. Brist på medvetenhet och kunskap om demens i samhället var den främsta orsaken till social stigmatisering. Slutsats: Med hjälp av formell vård behöver närstående inte känna att sina behov är sekundära till närståendes behov. Sjuksköterskor, närstående och personer med Alzheimers sjukdom är skyldiga för att kunna uppnå sitt gemensamma mål för god hälsa.

Le prendre-soin à domicile des personnes atteintes de maladie chronique est de plus en plus assuré par les aidants familiaux, mais leur mode de vie crée un risque pour leur santé. Mener une recherche sur leur capabilité de santé, en d’autres termes sur leur aptitude à adopter un mode de vie favorable à la santé, est d’un intérêt scientifique majeur. L’opérationnalisation de ce paradigme développé en 2010 par Ruger pour comprendre les facteurs du maintien d’un état de santé optimal est au cœur de nos travaux de recherche. A partir d’une collecte de données quantitative menée au Luxembourg et en Lorraine (France), un outil de Capabilité de Santé des Aidants (CSA-20 items) a été élaboré et testé. Il explore huit domaines: santé physique, santé psychologique, valeur accordée au mode de vie, sentiment d’auto-efficacité, soutien familial, capital social, conditions matérielles/sentiment de sécurité, satisfaction à l’égard des informations et des services de soins. Des enquêtes qualitatives complémentaires ont permis de compléter le CSA-20 par 77 items couvrant des domaines tels que la motivation, les compétences psychosociales et les styles de coping. Cet instrument permet d’élaborer des diagnostics personnalisés et d’évaluer des programmes de promotion de la santé. Nos analyses préliminaires ont aussi montré que les répercussions de la maladie chronique sont vécues de manière conjointe dans les dyades aidant-aidé; et que la valeur accordée au rôle d’aidant est favorisée par le soutien venant des professionnels et du réseau social. Pour améliorer la capabilité de santé des aidants, la prise en compte à la fois de leur autonomie et de leur besoin de soutien est dès lors requise / Home care of persons with a chronic disease is increasingly provided by family caregivers, but their lifestyle creates a risk to their health. Therefore, leading a research on their "health capability", in other words, on their ability to adopt a healthy lifestyle is of major scientific interest. The operationalization of this paradigm, developed by Ruger in 2010 to understand the factors of maintaining a state of optimal health, has been the heart of our research. Based on a quantitative data collection conducted in Luxembourg and Lorraine (France), a Health Capability of Family Caregivers instrument (HCFC-20 items) was developed and tested. It explores eight areas: physical health, psychological health, lifestyle value, sense of self-efficacy, family support, social capital, material conditions/sense of security, satisfaction with information and healthcare services. Additional qualitative surveys have completed the HCFC-20 with 77 items covering areas such as motivation, life skills and coping styles. This instrument allows to develop personalized diagnoses and to evaluate health-promoting programs. Our preliminary analyses have also indicated that the impacts of a chronic disease are experienced jointly in patient-caregiver dyads; and the value placed on the role of caregiver is encouraged by the support from professionals and a social network. In order to improve the health capability of caregivers, taking into account both their autonomy and their need for support is therefore required

O presente estudo teve como objetivo caracterizar os cuidadores familiares de idosos demenciados, bem como identificar a demanda de cuidados prestados e relacionar ao estagiamento da demência. Trata-se de um estudo epidemiológico descritivo e seccional, realizado no período de 2001 a 2002. A amostra da investigação constou de 104 idosos demenciados, com idade de 60 anos ou mais, residentes na zona urbana de Ribeirão Preto-SP, atendidos em um ambulatório terciário de um hospital governamental e 90 cuidadores familiares. Foram consultados prontuários e após, realizadas visitas domiciliares para aplicação de um instrumento de avaliação multidimensional do estado funcional do idoso e um questionário estruturado com perguntas fechadas relativas aos cuidadores. Os resultados evidenciaram que 66,3% dos idosos eram do sexo feminino, com média de 75,5 anos. O nível educacional correspondeu a 47,1% dos idosos com até 4 anos de escolaridade, os analfabetos e os que aprenderam ler informalmente somaram 35,5%. O estagiamento da demência foi classificado, previamente no prontuário médico, representando 27,9% demência grave; 22,1% demência moderada; 27,9% demência leve, 6,4% questionável e 15,4% não haviam sido classificados. Evidenciou-se que, dos 104 idosos, 90 tinham cuidadores, representados por 80% do sexo feminino, a maioria familiar: filha, esposa e nora. A idade média foi de 52,3 anos de idade. O tempo dedicado ao cuidar representou 15,10horas/dia. Quanto à ajuda recebida do suporte informal, a maioria não recebe ajuda ou recebem às vezes. A interferência na vida do cuidador (trabalho, repouso, lazer, passeios, o cuidar-se) foi proporcional ao agravo da demência, assim como as respostas referentes ao cansaço físico e emocional. Dos cuidadores, 45,7% relataram que o cuidar provoca tristeza, enquanto apenas uma pequena parcela dos cuidadores referiu utilizar sistemas de suporte social formal. As dificuldades nas atividades da vida diária do idoso geram a necessidade de cuidador. Os dados mostram a grande demanda na atividade de cuidar e conseqüente sobrecarga, revelando a necessidade urgente de estratégias de suportes formais e informais para os cuidadores de idosos. / The present study had the objective to understand the reality of the demented elderly caregivers and to identify the demand of rendered cares and to relate to the rating of the dementia. It is a observational and sectional study, performed in the period from 2001 to 2002. The sample of the investigation consisted of 104 demented elderly, aged 60 years-old or more, residents in the urban area of Ribeirão Preto-SP, assisted in a tertiary outpatient clinic of a government hospital and 90 family caregivers. Medical files were consulted and afterwards, home visits were performed for the application of a multidimensional instrument of evaluation of the elderly\'s functional state and a closed questionnaire structured with questions related to the caregivers. The results evidenced that 66,3% of the elderly were females, with an average age of 75,5 years-old. The education level corresponded to 47,1% of the elderly that had up to 4 years of education, the illiterates and the ones who known how to read informally added 35,5%. The rating of the dementia was classified, previously in the medical file, representing 27,9% serious dementia; 22,1% moderate dementia; 27,9% light dementia, 6,7% questionable and 15,4% had not been classified. It was evidenced that among the 104 seniors, 90 had caregivers, from which 80% were females, most of them family members: daughter, spouse and daughter-in-law. The average age was 52,3 years. The time dedicated when taking care represented 15,10 hours a day. As for the help received from the informal support, most don\'t receive help or they do sometimes. The interference in the caregiver\'s life (work, rest, leisure, walks, taking care) was proportional to the severity of the dementia as well as the answers regarding physical and emotional fatigue. Among the caregivers, 45,7% said that taking care provokes sadness. And just a small portion of the caregivers referred to use systems of formal social support. The difficulties in the activities of the elderly\'s daily life generate the caregiver\'s need. The data show the great demand in the activity of taking care and consequent overload, revealing the urgent need for strategies of formal and informal supports to the elderlys caregivers.

This study employed a case study research design to explore how family caregivers experience caring for an advanced cancer patient enrolled in a palliative rehabilitation program. Demographic, case note, pre-post quality of life scores, and interview data sets were collected from four family caregivers throughout patient enrollment in the 8-week Ottawa Palliative Rehabilitation Program. Thematic analysis of the interview data revealed caregivers’ perceived caregiving as: 1) Being a Witness of the Patient’s Struggles, 2) A Duty Paired with a Desire to Support Patients - Regardless of the Challenges, and 3) A Role Which Requires Tailored Knowledge, Support, and Resources to Aid in Improving Patient Functioning and in Managing Caregiving Tasks. Involving family caregivers in palliative rehabilitation programs provides them an opportunity to engage with the patient and health care professionals in order to develop a shared understanding of the illness implications, learn tailored caregiving approaches, and gain social support.

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