The needs of the informal caregiver can be difficult to determine apart from those related to caring for the terminally ill loved one. Often, informal caregivers' individual needs are lost because of their day-to-day responsibility and care of their terminally ill loved one. The purpose of this project was to discover the characteristics of informal caregivers of the terminally ill. An integrated literature review was conducted using the Fineout-Overhalt, Melnyk, Stillwell, and Williamson's (2010) analytical approach to reviewing the evidence. The approach consisted of 7 levels for evaluating the hierachy of evidence. Inclusion criteria were studies limited from January 2004 to October 2015, English language, and full text. A total of 22 studies were reviewed and categorized according to 1 of the 7 hierachial levels, and findings related to the characteristics of informal caregivers were summarized at each appropriate level. Characteristics of informal caregivers were described regarding sociodemogrphics, such as age, gender, relationship with family members, financial status, and educational level. Characteristics of informal caregivers were discussed in relationship to the terminally ill loved one. The evidence did not concentrate on who the informal caregiver was without assessing their relationship to the terminally ill patient. It is recommended that a mixed-method approach be conducted to indentify characteristics of informal caregivers outside of their relationship with the terminally ill. Gaining a new perspective about the characteristics of informal caregivers for the terminally ill patient would help health care providers to more effectively meet their needs independent of the needs of the terminally ill loved one.

Det finns idag i Sverige många personer som har drabbats av en demenssjukdom. Att drabbas av demenssjukdom påverkar hela familjen och de närstående får ofta dra ett tungt lass vid vården av den sjuke. Många närstående sliter dygnet runt och löper därför stor risk att drabbas av hög stressbelastning och depression som följd. Demenssjukdom kan delas in i olika typer så som frontotemporal demens, Alzheimers sjukdom, vaskulärdemens. Olika typer av demens ger olika symtom men gemensamt är att de alla ger en kognitiv och känslomässig påverkan med bland annat nedsatt minnesfunktion, rastlöshet och oro. Syftet med studien var att undersöka vilka behov närstående som vårdar en demenssjuk i hemmet kan ha för att som sjuksköterska kunna stödja på bästa sätt. I denna studie har det använts elva artiklar varav sex är kvalitativa och tre kvantitativa samt två artiklar som var blandstudier med både kvalitativa och kvantitativa inslag. Analysen av materialet resulterade i två huvudkategorier vilka är kunskap om sjukdomen och kunskap om stöd som kan erbjudas, samt sex underkategorier. Resultatet visar att närstående har ett stort behov av utbildning och information, vilket de i dag inte tycker att de får tillräckligt av. De behöver dels kunskap om sjukdomen för att kunna förstå och ge en god vård, samt kunskap om sjukdomens utveckling för att kunna planera för framtiden. Det visar sig också att många närstående inte får tillräckligt information om hur de skall få kontakt med olika instanser, samt hur de kan söka olika stödåtgärder så som korttidsplats, dagverksamhet och avlösning i hemmet. För att närstående skall orka sköta den dagliga vården av den sjuke är det viktigt att han eller hon får tid att ta hand om sig själv. Som sjuksköterskor är det viktigt att ha en bra utbildning och en god förståelse för hur närstående och sjuka upplever sjukdomen, för att kunna ge en korrekt information samt att kunna stödja på bästa sätt.

Bakgrund: Demenssjukdom är den fjärde största folksjukdomen i Sverige och antalet insjuknanden beräknas öka. Begreppet demens inbegriper progredierande sjukdomar som framförallt påverkar minne, humör och kommunikationsförmåga. Många personer med demenssjukdom vårdas i hemmet av en eller flera anhöriga. Att vara anhörigvårdare innebär ett stort ansvar och påverkar alla medlemmar i familjen. Syfte: Att beskriva anhörigas upplevelser av att vårda en närstående med demenssjukdom. Metod: En litteraturöversikt som bygger på en analys av tio vetenskapliga artiklar med kvalitativ design.  Resultat: I resultatet påvisades negativa och positiva upplevelser. Vissa anhöriga upplevde sig ha blivit starkare i sig själva genom vårdandet av sin närstående men ett flertal uttryckte även känslor som ilska och frustration. Det framkom att anhöriga var i behov av stöd i vårdandet, men att de ofta tyckte att det var jobbigt att be om stöd då de inte ville vara en börda till andra eller till samhället.  Med sjukdomens uppkomst upplevde många en förändrad identitet hos den närstående som påverkade relationen mellan dem. Vissa upplevde rollförändringar i familjen och en saknad av social samt emotionell närhet, medan andra vittnade om att de kommit varandra närmare. Diskussion: Resultatet visar att det finns en stor komplexitet i anhörigvårdares attityder gentemot hjälp och stöd utifrån, detta bör uppmärksammas av sjuksköterskor. Kunskap om anhörigas resurser och styrkor samt deras upplevda börda är en viktig del i sjuksköterskans omvårdnadsarbete. Sjuksköterskan behöver även vara medveten om att det förekommer känslor som ilska och frustration och identifiera dessa hos anhöriga för att undvika att den demenssjuke kommer till skada. Resultatet tyder även på att kvinnor och mäns upplevelser kan skilja sig åt och således kan deras behov se väldigt olika ut. Sjuksköterskan kan därför dra nytta av att beakta ett genusperspektiv i mötet med anhöriga. Resultatet har att diskuterats utifrån Dorothea Orems teori om egenvårdsbalans. / Background: Dementia is the fourth most common endemic disease in Sweden and the number of people diagnosed with dementia is estimated to increase. Dementia includes diseases that affect the brain with symptoms on memory function, mood and communication skills. Several people with dementia is cared for at home by family members. Being an informal caregiver is a large responsibility and affects the whole family. Aim: To describe relative’s experiences of caring for a family member with dementia. Method: A literature review based on the analysis of ten scientific articles with qualitative design. Results: The results showed both positive and negative experiences. Some relatives expressed the feeling of becoming stronger and more resilient as a result of caring for their loved one but there where feelings of anger and frustration as well. The results showed that the relatives where in need of social and formal support but often had a hard time asking for help due to the feeling of being a burden for others and the society. Many experienced that their family member’s identity changed with the disease, which caused a change in the relationship as well. Some expressed role changes within the family and the lack of social and emotional closeness, while others expressed a feeling of becoming closer to each other. Discussions: It became clear that there was a complexity in relative’s attitude to social and formal support and nurses in contact with informal caregivers should be aware of this. Knowledge about informal caregiver’s perceived burden and what they perceive as their strength is an important key part for nurses in their work with dementia patients and their relatives. Nurses need to be aware of the occurrence of feelings of anger and frustration in relatives to be able to spot these and make sure the patient welfare is not compromised. Due to differences in men and women’s experiences it could be useful for the nurse to have a gender aspect in their meeting and caring for informal caregivers. The results were discussed from the perspective of Dorothea Orems self-care theory.

Informal caregiving is growing in demand and is far from a uniform experience. Some caregivers report burdensome effects, while others attest to a wide range of benefits associated with their role. In the context of informal caregivers of persons affected by chronic neurological conditions (CNCs), psychological resilience is increasingly being explored as a protective factor that may account for variability in the caregiver experience; however, multiple sclerosis (MS) caregivers are noticeably absent from this body of work. To synthesize current evidence concerning resilience conceptualizations, assessments, and health correlates within this population, this thesis included a systematic review of resilience in CNC informal caregivers in which MS caregivers were unrepresented. Following this review, a qualitative study was conducted in informal MS caregivers to ascertain MS caregivers’ conceptualizations and unique lived experiences of resilience. Twenty-four semi-structured interviews of Canadian MS informal caregivers were conducted. Informed by the socioecological model of resilience in caring relationships, transcripts were analyzed using flexible thematic analysis. In support of the conceptual ambiguity of resilience, caregivers did not concur on a single resilience conceptualization. Emergent themes contributed to the creation of a cyclical model of resilience that incorporates adversity in the form of continuous loss and obstructed health-related self-care, individual and community resources, and multilevel adaptive pathways. We use our model to prompt future research directions and inform the development of effective resilience-enhancing interventions for MS caregivers.

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.

Ser cuidador informal de pacientes com doenças crônicas pode implicar em sobrecarga e sofrimento psicológico significativo, potencialmente prejudiciais para a própria saúde física e mental e para a recuperação do paciente. Pouco se sabe sobre as experiências e características psicossociais dos cuidadores de pacientes portadores de Cardioversor Desfibrilador Implantável (CDI), principalmente na população brasileira, de forma que o presente estudo (quantitativo descritivo transversal) teve por objetivos caracterizar demográfica e psicossocialmente uma amostra não probabilística de cuidadores informais de pacientes portadores de CDI que se encontravam em tratamento médico em um hospital-escola do interior do Estado de São Paulo. As variáveis estudadas incluíram: características sóciodemográficas, qualidade de vida, ansiedade, depressão e percepção de sobrecarga. Participaram da pesquisa 60 cuidadores, entrevistados entre setembro de 2010 a maio de 2011. Para a coleta dos dados foram usados: Roteiro de Entrevista Semiestruturada, elaborado para esta pesquisa, Questionário de Avaliação de Saúde SF-36, Escala Hospitalar de Ansiedade e Depressão e a Zarit Burden Interview. Os dados foram analisados quantitativamente de forma descritiva. Posteriormente verificou-se associação estatisticamente significativa (p<=0,05) entre algumas variáveis de interesse, por meio do Teste Exato de Fisher. Os resultados mostraram que a média de idade dos cuidadores foi de 52,5 anos (DP=14,76), eram em sua maior parte do sexo feminino (n=45, 75%), o cônjuge do(a) paciente (n=39, 65%), com escolaridade predominante de até quatro anos (n=28, 46,67%), sendo a maioria (45, 75%) portadora de problemas de saúde. Vinte e cinco cuidadores (41,67%) apresentaram sintomas indicativos de ansiedade e 13 (21,67%) de depressão. Na avaliação da qualidade de vida, a média de escore mais elevado foi no domínio Aspectos Sociais (Média=78,12, DP=27,48) e o mais baixo em Vitalidade (Média=60,25, DP=26,03). O escore médio relacionado à percepção de sobrecarga foi de 19,93 (DP=12,51, Mediana= 18,5). Os participantes relataram alterações significativas em suas vidas após o implante do CDI, preocupações com a saúde do paciente e funcionamento do dispositivo, dificuldades relacionadas ao papel de cuidador, além de dúvidas sobre o desfibrilador implantável. Os resultados confirmaram que o implante do CDI no paciente impactou significativamente na vida de seus cuidadores informais, sendo necessário o oferecimento de apoio emocional e orientações específicas por parte dos profissionais da saúde para auxiliá-los na adaptação e enfrentamento adequado dessas situações. Dada a escassez de estudos brasileiros nesta população e alguns fatores metodológicos limitantes, é necessário que mais investigações sejam realizadas para comparar estes resultados. / Being an informal caregiver of patients with chronic diseases may imply significant psychological burden and suffering, potentially harmful to caregiver\'s own physical and mental health and patient\'s recovery. Little is known about the psychosocial experiences and characteristics of caregivers of patients with Implantable Cardioverter Defibrillator (ICD), mainly in the Brazilian population, so that the purpose of the present study (transversal descriptive quantitative) was to characterize, both demographically and psychosocially, a nonprobabilistic sample of informal caregivers of patients with ICD undergoing treatment in a university hospital in the interior of the State of São Paulo. The studied variables comprised: sociodemographic characteristics, life quality, anxiety, depression and perception of burden. Sixty caregivers took part in the survey, and they were interviewed between September, 2010 and May, 2011. Data collection used the following instruments: Semi-structured Interview Script prepared for this survey, SF-36 Health Evaluation Questionnaire, Hospital Anxiety and Depression Scale and the Zarit Burden Interview. Data was analyzed quantitatively in a descriptive way. Subsequently, statistically significant association (p<=0,05) was verified between some variables of interest through Fisher\'s Exact Test. Results describe that the average age of caregivers was 52.5 years (DP=14.76), they were mostly female (n=45, 75%), and patient\'s spouses (n=39, 65%), predominantly with up to four years of education (n=28, 46.67%), and most (45, 75%) with health problems. Twenty-five caregivers (41.67%) presented symptoms related to anxiety and 13 (21.67%) to depression. In life quality evaluation, the highest average score was in the Social Aspects dominion (Average=78.12, DP=27.48) and the lowest in Vitality (Average=60.25, DP=26.03). The average score regarding burden perception was of 19.93 (DP=12.51, Median= 18.5). Participants reported significant changes in their lives after ICD implant, concerns about patient\'s health and device operation, difficulties concerning their role as caregivers, in addition to doubts about the implantable defibrillator. Results confirm that the ICD implant had a significant impact in the life of their informal caregivers, requiring provision of emotional support by healthcare professionals in order to help them adapt and properly cope with these situations. Due to the scarcity of Brazilian studies in this population and some limiting methodological factors, further investigation is required to compare these results.

Background: Multivariate analyses of quality of life (QoL) in dementia are relatively rare. This study was the first aiming to measure QoL of persons with dementia and their informal caregivers in New Zealand. To date, it is also the only study examining what interventions from primary and secondary care in New Zealand are helpful for enhancing QoL and what these interventions cost. Methods: In this prospective cohort study, questionnaires (including the Quality of Life-Alzheimer’s Disease Scale and the Neuropsychiatric Inventory) investigating various QoL-domains were administered to 53 outpatients of a memory clinic recently diagnosed with dementia, and their caregivers at baseline and 12-month follow-up. Time and resource utilisation were assessed in order to identify direct and indirect costs using questionnaires and diaries (over 12 months). Results: Cognition scores of persons with dementia (PWDs) ranged from 49 to 91 on the Modified-Mini-Mental State Examination (3MS); scores on the Clinical Dementia Rating Scale (CDR) ranged from 0.5 to 3, with 83% of PWDs being in the early stages of the illness at baseline (CDR ≤ 1). Most PWD measurements confirmed the predicted correlations including a strong link between PWDs’ and caregivers’ QoL. Many correlations remained stable over 12 months. Combined information and support interventions achieved significantly better PWD and caregiver QoL than single interventions. Direct costs (including costs of informal caregiving time) increased with an increase in dementia severity, neuropsychiatric and behavioural symptoms and functional limitations. There was a clear trend that caregivers were more distressed if patients received less in-home support. Direct non-medical costs of PWDs living at home did not increase with the severity of PWDs’ cognitive impairment. In 2008/09, there were an estimated 1,896 persons in Canterbury providing a total of 5.47 million hours of care for PWDs. This unpaid care had a value of NZ $135.8 million. Caregivers were much more likely to be depressed if they had a low income. More than one-third of family-caregivers (39.5%) thought that financial compensation for their time spent caring would enable them to look after the PWD at home for longer. Conclusions: A mix of different clinical and non-clinical (including economic) factors can predict QoL in dementia. The strong link between PWDs’ and caregivers’ QoL calls for a systemic approach in dementia care. QoL can be sustained over 1 year in a cohort of mainly early dementia patients and their informal caregivers. Developing psychosocial and financial incentives could be a key factor to support PWDs and their informal caregivers in New Zealand, consequently enabling them to live in the community for longer. These outcomes also have implications for health professionals and social policy makers which must be addressed as health practitioners and the wider community strive both for best practice and for cost-effective care of our increasingly ageing population.

Sammanfattning Syftet med denna studie var att beskriva äldre änkors/änklingars uppfattningar kring det eventuella stöd som erbjudits eller saknats dem, samt övriga underlättande faktorer under perioden de vårdade sin livspartner i hemmet.   Metoden som användes var kvalitativ och datainsamlingen bestod av semistrukturerade intervjuer. Informanterna var 4 kvinnor och 2 män i åldern 60-79 år med anknytning till anhörigcenter, ett kommunalt stöd för anhörigvårdare. Data analyserades med manifest innehållsanalys enligt Graneheim och Lundman (2004). Analysen identifierade två teman; Uppfattningar kring stöd från samhället, släkt och vänner samt Övriga underlättande faktorer.   Resultatet gav sex kategorier som informanterna framhöll som viktiga; Känsla av stöttning, Praktisk assistans, Information, Fokus på anhörigvårdaren, Upplevelse av hur den närstående mår, samt; Miljöombyte. I huvudsak visar resultatet på vikten av information och tillvägagångssättet som information ges på. Även samtalsterapi och en kontaktperson knuten till offentlig sektor efterfrågas för att underlätta i anhörigvårdarens vardag. Vidare är stöd som bidrar till att bibehålla ett socialt och varierande liv av stor vikt.   Slutsatsen är att de före detta anhörigvårdarna påverkas mycket av känslan av att de fått direkt eller indirekt stöd. Denna känsla är till stor del kopplad till vilket bemötande och vilken information som getts från i första hand offentlig sektor. Väsentliga skillnader för anhörigvårdarna kan därför uppnås med relativt små medel. / Bodin, A. (2013) Elderly informal caregivers perception about support and other relieving factors. Bachelor’s thesis in public health. The faculty of health and occupational studies, University of Gävle, Sweden.   Abstract The purpose of this study was to describe widow’s/widower’s perception of the support they had been offered or missing from society and relatives/friends during their time as informal caregiver to their spouse. The purpose was also to describe other possible relieving factors.   The method used was qualitative semi structured interviews that were held with 4 women and 2 men. Data was analyzed according to Graneheim &amp; Lundman (2004). Two themes were identified; “Experiences of support from society, relatives and family” and “Other relieving factors”.   The main results showed that the way information is given is important both when it comes to approach and procedure. A contact person is desirable. Support that benefits the informal caregiver’s social life is highly appreciated by the informants.   The conclusion is that the feeling of support is crucial and is connected to the way personnel is treating the informal caregiver. The ideal solution could proposedly be for the society to introduce a long-term course, giving adequate information and discussing the majority of aspects of being an informal caregiver, such as care, the spouse’s state of ill-health and how to preserve your own quality of life.

Bakgrund: Enligt WHO drabbas ungefär tio miljoner människor av demens varje år varav 60 till 70 procent av Alzheimers sjukdom. I Sverige är upp emot var femte vuxen en regelbunden informell vårdgivare till någon i sin omgivning. Informell vård innebär den omsorg som närstående ger till vårdtagaren. Behovet av närståendes närhet ökar ofta under insjuknandet i Alzheimers sjukdom. Sjuksköterskan har en hälsofrämjande och sjukdomsförebyggande funktion och har en roll som rådgivare där denne vägleder vårdtagare och deras närstående. Syfte: Syftet var att belysa närståendes upplevelser kring vårdandet av familjemedlemmar med Alzheimers sjukdom. Metod: En litteraturöversikt genomfördes där tio artiklar med kvalitativ design granskades och analyserades enligt Friberg. Dessa artiklar framkom ur databaserna Cinahl Complete, Pubmed, Medline och PsykINFO. Sökord som användes var ”Alzheimers disease”, ”experience”, ”relatives” och ”family”. Resultat: Fyra huvudteman konstruerades. Transitionen från närstående till att bli vårdgivare, här framkom det att närstående upplevde maktlöshet, tvivel och en förlust av autonomi. Älta det förflutna och känna oro för framtiden, närstående upplevde en känsla av oro inför framtiden både för vårdtagaren och dem själva. Upplevelsen av stigmatisering och isolering, närstående upplevde att de blev isolerade och kände av en stigmatisering i samhället. Att förlora samhörigheten och stärka den, närstående belyste att relationen med vårdtagaren förändrades till följd av sjukdomens inverkan.  Diskussion: Resultatet diskuterades utifrån Callista Roys teori om adaption. Diskussionen fördes kring hur upplevelserna hos närstående kan förstås utifrån denna teori och det som framkom i resultatet. Närstående genomgår en övergång till att bli en vårdgivare och befinner sig i en föränderlig miljö där adaption eftersträvas för att finna en balans i livet. En diskussion fördes kring sjuksköterskans roll i samspelet med närstående. / Background: According to WHO, approximately ten million people are affected by dementia each year, of which 60 to 70 percent are suffering from Alzheimer's disease. In Sweden, every fifth adult is an informal caregiver to someone in their environment. Informal care involves the care that relatives give to their care recipient. At the onset of Alzheimer's disease, the need of closeness to the relatives often increases. The nurse has a health promoting and disease preventing function and has a role as an adviser in which he/she guides the care recipient and their relatives. Aim: The aim was to illustrate the experiences of relatives in caring for family members with Alzheimer´s Disease.  Method: A literature review was conducted where ten articles of qualitative design were examined and analyzed according to Friberg. These articles came from the databases Cinahl Complete, Pubmed, Medline and PsychInFO. Keywords used were "Alzheimers Disease", "Experience," "Relatives," and "Family." Results: Four main themes were constructed. The transition from relative to becoming a caregiver, here it emerged that relatives experienced powerlessness, doubt and a loss of autonomy. Dwelling on the past and Feeling worried about the future, relatives experienced a sense of concern for the future both for the care recipient and for themselves. The experience of stigmatization and isolation, relatives felt that they were isolated and felt stigma in society. The loss of togetherness and strengthen it, relatives explained that the relationship with the care recipient changed as a result of the effect of the disease.  Discussion: The results was discussed based on Callista Roys theory of adaptation. The discussion was conducted in relation to how the experiences of relatives can be understood based on this theory, and other findings that emerged from the results. Relatives undergo a transition to becoming a caregiver and are in a changing environment where adaptation is sought to find a balance in life. A discussion was held about the nurse's role in the interaction with relatives.

Ser cuidador informal de pacientes com doenças crônicas pode implicar em sobrecarga e sofrimento psicológico significativo, potencialmente prejudiciais para a própria saúde física e mental e para a recuperação do paciente. Pouco se sabe sobre as experiências e características psicossociais dos cuidadores de pacientes portadores de Cardioversor Desfibrilador Implantável (CDI), principalmente na população brasileira, de forma que o presente estudo (quantitativo descritivo transversal) teve por objetivos caracterizar demográfica e psicossocialmente uma amostra não probabilística de cuidadores informais de pacientes portadores de CDI que se encontravam em tratamento médico em um hospital-escola do interior do Estado de São Paulo. As variáveis estudadas incluíram: características sóciodemográficas, qualidade de vida, ansiedade, depressão e percepção de sobrecarga. Participaram da pesquisa 60 cuidadores, entrevistados entre setembro de 2010 a maio de 2011. Para a coleta dos dados foram usados: Roteiro de Entrevista Semiestruturada, elaborado para esta pesquisa, Questionário de Avaliação de Saúde SF-36, Escala Hospitalar de Ansiedade e Depressão e a Zarit Burden Interview. Os dados foram analisados quantitativamente de forma descritiva. Posteriormente verificou-se associação estatisticamente significativa (p<=0,05) entre algumas variáveis de interesse, por meio do Teste Exato de Fisher. Os resultados mostraram que a média de idade dos cuidadores foi de 52,5 anos (DP=14,76), eram em sua maior parte do sexo feminino (n=45, 75%), o cônjuge do(a) paciente (n=39, 65%), com escolaridade predominante de até quatro anos (n=28, 46,67%), sendo a maioria (45, 75%) portadora de problemas de saúde. Vinte e cinco cuidadores (41,67%) apresentaram sintomas indicativos de ansiedade e 13 (21,67%) de depressão. Na avaliação da qualidade de vida, a média de escore mais elevado foi no domínio Aspectos Sociais (Média=78,12, DP=27,48) e o mais baixo em Vitalidade (Média=60,25, DP=26,03). O escore médio relacionado à percepção de sobrecarga foi de 19,93 (DP=12,51, Mediana= 18,5). Os participantes relataram alterações significativas em suas vidas após o implante do CDI, preocupações com a saúde do paciente e funcionamento do dispositivo, dificuldades relacionadas ao papel de cuidador, além de dúvidas sobre o desfibrilador implantável. Os resultados confirmaram que o implante do CDI no paciente impactou significativamente na vida de seus cuidadores informais, sendo necessário o oferecimento de apoio emocional e orientações específicas por parte dos profissionais da saúde para auxiliá-los na adaptação e enfrentamento adequado dessas situações. Dada a escassez de estudos brasileiros nesta população e alguns fatores metodológicos limitantes, é necessário que mais investigações sejam realizadas para comparar estes resultados. / Being an informal caregiver of patients with chronic diseases may imply significant psychological burden and suffering, potentially harmful to caregiver\'s own physical and mental health and patient\'s recovery. Little is known about the psychosocial experiences and characteristics of caregivers of patients with Implantable Cardioverter Defibrillator (ICD), mainly in the Brazilian population, so that the purpose of the present study (transversal descriptive quantitative) was to characterize, both demographically and psychosocially, a nonprobabilistic sample of informal caregivers of patients with ICD undergoing treatment in a university hospital in the interior of the State of São Paulo. The studied variables comprised: sociodemographic characteristics, life quality, anxiety, depression and perception of burden. Sixty caregivers took part in the survey, and they were interviewed between September, 2010 and May, 2011. Data collection used the following instruments: Semi-structured Interview Script prepared for this survey, SF-36 Health Evaluation Questionnaire, Hospital Anxiety and Depression Scale and the Zarit Burden Interview. Data was analyzed quantitatively in a descriptive way. Subsequently, statistically significant association (p<=0,05) was verified between some variables of interest through Fisher\'s Exact Test. Results describe that the average age of caregivers was 52.5 years (DP=14.76), they were mostly female (n=45, 75%), and patient\'s spouses (n=39, 65%), predominantly with up to four years of education (n=28, 46.67%), and most (45, 75%) with health problems. Twenty-five caregivers (41.67%) presented symptoms related to anxiety and 13 (21.67%) to depression. In life quality evaluation, the highest average score was in the Social Aspects dominion (Average=78.12, DP=27.48) and the lowest in Vitality (Average=60.25, DP=26.03). The average score regarding burden perception was of 19.93 (DP=12.51, Median= 18.5). Participants reported significant changes in their lives after ICD implant, concerns about patient\'s health and device operation, difficulties concerning their role as caregivers, in addition to doubts about the implantable defibrillator. Results confirm that the ICD implant had a significant impact in the life of their informal caregivers, requiring provision of emotional support by healthcare professionals in order to help them adapt and properly cope with these situations. Due to the scarcity of Brazilian studies in this population and some limiting methodological factors, further investigation is required to compare these results.