Objective: This study aims to identify the informalcaregivers’ difficulties in assisting the elderly patients of the Programa Saúde da Família [Family Health Program] in Bambuí city, Minas Gerais State, Brazil. Methods: This is a transversal research, approved by the Certificado de Apresentação para Apreciação Ética (CAAE) [Certificate of Presentation for Ethical Appreciation] No. 0146.0.213.000-11. Seventy elderly people and their informalcaregivers were interviewed and the collected data were analyzed. Results: The treatment of cognitive disorders in the elderly (32.9%) and the lack of knowledge about the health care delivered (20%) were the main difficulties stated by the caregivers. These results also showed a bivariate relationship with “difficulty during care”: the caregivers who stated that they slept less (≤ 6 hours/night) (%), “did not have a caregiver course” (%) and did not have “leisure activity” (%); regression: individuals who affirmed that they had not completed a course for caregivers of the elderly. Conclusion: It was settled that actions aiming to support the informal caregiver in face of the numerous difficulties faced in the care of the elderly are essential.
Moreover, and although research has found contra- dictory findings , a large percentage of studies found that caring for a dependent person is related to a series of burdens that often takes them to their physical, psy- chological and emotional limits [15–17], impacting the whole family system . The responsibilities imposed by the caregiving situation may interrupt social life, ac- tivities or even work, which may be challenging . For instance, some studies report that caregiving is usually associated with a deterioration in the quality of life [5, 6, 19, 20], higher levels of depression symptoms [5, 19, 21, 22], greater financial burden [19, 23, 24] and greater physical impairment [19, 25] especially when compared to non-carers. Therefore, caregiver burden is frequently defined as the emotional, social and financial stress im- posed by the illnesses of the dependent person onto the caregiver [23, 26]. Nevertheless, informalcaregivers
Despite the recognition of the value of informal caregiving, the recognition of its burden, and the recognition of the prevalence of unmet needs, little consensus exist about what are the unmet needs of dementia informalcaregivers and they should be measured within this context 1 . The assessment/recognition of (unmet) needs in informal caregiving in the context of
Apesar de os dados revelarem inúmeros desafios na prática do cuidador informal, percebe-se que ele é pouco evidenciado nas investigações e nos cuidados, sendo na maioria das vezes relegado a segundo plano em detrimento das necessidades do paciente. Além disso, nas políticas públicas não há o reconhecimento efetivo do cuidador informal, o que passa a ser uma das lacunas encontradas no plano de cuidado da equipe de saúde nos setores de internamento (ROSE, NOELKER & KAGAN, 2015; SCHULTZ et al, 2019).
Designing effective support services and interventions to alleviate loneliness in the caregiving population requires detailed understanding of the phenomenon from the perspective of caregivers themselves. Recognizing a lack of qualitative evidence in this area, the present study sought to build an in- depth, empirically-grounded picture of experiences of loneliness in informalcaregivers in a variety of caregiving situations. Consistent with findings from previous qualitative research in the phenomenon of loneliness (Dahlberg, 2007; Stanley et al., 2010; Tiilikainen and Seppänen, 2016), the results of the present study suggest that this psychological state in the caregiving population is similarly complex and multifaceted. Feelings of loneliness were seen to derive from a series of challenges to relationships that threatened caregivers’ fundamental need to belong (Baumeister and Leary, 1995). The moral character of the caregiving role that prescribed full attentiveness to the needs of the cared-for person subjected caregivers to the risk of social isolation and diminished social interactions which, at least in part, occasioned feelings of loneliness, as the need for sociability was thwarted (Brambilla and Leach, 2014). It simultaneously shrank caregivers’ personal space and time reducing their ability for self-care and leisure. The relational losses and deprivations with regard to significant “Others”—primarily the cared-for person—as well as social encounters that evoked a sense of being ignored, unappreciated, distanced, or even excluded (Williams, 2007) were also thought to generate loneliness, both emotional and social (Weiss, 1973). Lastly, a sense of lack of competence and control over the caregiving situation, of sole responsibility for the cared-for person’s welfare, as well as circumstances where the inaccessibility of help was very salient, were linked to experiences of loneliness.
Abstract This study was aimed to compare the health conditions and burden of formal and infor- mal caregivers of older adults. Cross-sectional and comparative study with a quantitative approach. The data were collected in 2014 in São Carlos/SP, using the Zarit Burden Interview and the SRQ 20 (Self Reported Questionnaire). Results: The sample included 15 formal and 35 informal care- givers. Among the formal caregivers, women were predominant (86.7%), with a mean age of 36.7, mean of 13.7 years of education, mean worklo- ad of 7.5 hours per day, 26.7% were diagnosed with emotional distress and they the majority mentioned feeling “a little overloaded” (40%). Concerning the informalcaregivers, women were predominant (85.7%), 42.9% were the children of the older adult, with a mean age of 55.2 years, mean of 7.1 years of education, length of time as caregiver of 6.5 years, mean of 19.8 hours per day taking care of the older adult, 17 (48.6%) pre- sented mild overload and 16 (45.7%) presented emotional distress. Conclusions: The results re- vealed important differences and attention is nee- ded to planning interventions to improve health and work conditions of these people.
After approval of the changes by the judges, the Brazil- ian Portuguese version of the CRA instrument (now with the modiied items) was again applied to the three infor- mal caregivers of dependent elderly included in the pre-test (10% of the total employed sample). his time, we found that none of the items aroused any doubt or diiculty in understanding the electing of responses in the opinion of the caregivers, indicating that the adjustments made were satisfactory. his eventually resulted in the Brazilian ver- sion CRA instrument for assessing the burden of informalcaregivers of dependent older adults (Table 1).
METHOD: Twenty informalcaregivers (test group) were evaluated before and after attending four sessions of psychoeducation and compared to a group of 10 caregivers (control group), who did not attend the sessions, but were also evaluated in two different equivalent time points. The quality of life was evaluated by WHOQOL-BREF questionnaire developed by the World Health Organization, which was applied by the same interviewer to all the participants. At the end of the study, a blinded interviewer who had no previous contact with the participants applied the tool again to check for any interference bias. The Cronbach’s alpha coefficient for consistent evaluation, Student’s t-test for parametric, and Wilcoxon test for non-parametric data were applied for statistical analysis.
Data was collected from informalcaregivers in the orthopaedic outpatient department during the post-operative appointment using a form de- signed by the researchers containing questions about sociodemographic characteristics (sex, age, place of residence, relationship to elderly the person) and knowledge about fall prevention and the use of preventative measures by the informalcaregivers in the daily routine of the older per- son: whether the caregiver possessed knowledge about fall prevention (yes/no); whether he or she believed it was possible to prevent falls in the el- derly (yes/no); whether he or she felt supported in their caring responsibilities (yes/no); and if the caregiver had to make any changes to his or her life style (time away from work, leisure activities, social life, etc..) (yes/no). Remunerated caregiv- ers were excluded from the study.
In this research, the percentage of patients and relatives/ caregivers who mentioned swallowing difficulties was higher in both groups when compared to the communication difficulties. Thus, according to 68.5% of the patients questioned, the swallowing difficulties were related to the fluid intake, while 71.1% affirmed difficulties to swallow solid foods. According to the relatives and/or informalcaregivers, 80.8% of the patients presented difficulties to swallow fluids and 84.6% to swallow solid foods. Research has been undertaken in this respect in other countries. One study intended to identify the most common symptoms in hospice patients in the final seven days of life. The authors concluded that 50% of the sample presented dysphagia (20) .
METHODS: Application of the general epidemiological proile questionnaire and WHOQOL-BREF translated, by telephone, to 33 informalcaregivers of patients treated at the Outpatient Clinic of Chronic Pain at the State Hospital Mário Covas. RESULTS: he general evaluation of the quality of life of the studied population was from average to good (score of 64.01 - being zero = the worst quality of life and the 100 the best). With values above 60 for the physical domain (68.07), psychological (67.04), social relations (67.42) and environment (64.58). Care lasting on average for more than 5 years, with more than 8 hours per day and mostly by women, spouses, Catholic, aged between 30 and 60 years. Approximately 88% do not want another per- son to perform their activity.
Neste comentário de Stevenson (E 11 ) ao estudo desenvolvido por Kalra, Evans, Perez et al (E não seleccionado ) são destacados os seus principais resultados e conclusões, entre outros aspectos importantes. Subordinado esse comentário ao título “Training informalcaregivers of patients with stroke improved patient and caregiver quality of life and reduced costs”, é afirmado que, aos 12 meses, os doentes do grupo de cuidadores treinados melhoraram o seu humor e qualidade de vida mas não houve diferenças, para os doentes do grupo de cuidados usuais, quanto à mortalidade, institucionalização e funcionalidade. Quanto aos cuidadores do grupo experimental, melhoraram o humor e a qualidade de vida, com diminuição da sobrecarga decorrente dos cuidados, com- parado com o grupo controlo, de cuidados habituais […]. Como síntese, poderia referir-se que proporcionar treino e formação aos cuidadores de vítimas de AVC melhora a sua qualidade de vida e humor/ ânimo, reduz custos associados aos cuidados sem, con- tudo, se repercutir na mortalidade, institucionalização ou funcionalidade dos doentes, quando comparado com o procedimento usual, do grupo de cuidadores sem treino específico.
Parece consensual a ideia de que se têm vindo a gerar, com uma tendência crescente, diferentes tipos de iniciativas no sentido da organização e representação dos operadores da economia informal. A par dos processos desencadeados no campo do movimento sindical, outras iniciativas, com carácter associativo ou cooperativo, baseadas na actuação das ONGs ou nas parcerias e redes regionais ou internacionais têm vindo a ocorrer. A percepção de que os sindicatos poderiam constituir parceiros relevantes no processo de organização e de representação dos operadores informais começou a tomar forma no projecto “Sindicatos e sector informal”, um projecto promovido entre 1998 e 2001 pelo ACTRAV-BIT 4 e pela Danida 5 , orientado para o fortalecimento da capacidade
Caregivers identified that physical appearance is the main feature that facilitates the child’s involvement as a victim of bullying, followed by shyness and unpopularity. This conception is in accordance with other studies that identify characteristics that favor victimization, including anxiety (Pabian & Vandebosch, 2016), low self-esteem (Tsaousis, 2016), loneliness, lack of close friends (Acquah, Topalli, Wilson, Junttila, & Niemi, 2016), and physical characteristics, such as appearing to be over- weight or very skinny (Reulbach et al., 2013). Another fac- tor found in the literature as a trigger of bullying is the presence of mistreatment and domestic violence (Bowes et al., 2009). The caregivers of the sample did not present these factors, not mentioning the influence of the family in the children’s experiences of victimization. This data can be justified by a possible method bias, as a self-report questionnaire was used in this research, whose responses may have been influenced by social desirability. Studies in- dicate that dissatisfaction with body image is a variable strongly associated with victimization in bullying situa- tions and is associated, albeit to a lesser extent, with ag- gression (Levandoski & Luiz Cardoso, 2013; Rech, Halpern, Tedesco, & Santos, 2013). In Levandoski and Luiz Cardoso (2013)’s study, it was identified that both vic- tims and aggressors would like to be physically “bigger,” for example, which may be related to the growing appreci- ation of a muscular type, especially during adolescence (Brixval, Rayce, Rasmussen, Holstein, & Due, 2012). The same study found, however, that the offenders are gener- ally more satisfied with their own body image than the vic- tims. Yet, overweight children are more vulnerable to bullying than their normal weight counterparts.
Muitos dos problemas físicos, emocionais e sociais dos cuidadores estão relacionados com características da pessoa em situação de dependência e com a interação que se estabelece entre ambos. Desta forma, a autora considera que existem alguns fatores determinantes na sobrecarga física, social e emocional do cuidador, como sejam, a idade e a escolaridade do cuidador informal, o sexo do cuidador, a situação de emprego, o grau de parentesco e a relação afetiva que o cuidador estabelece com a pessoa dependente, o número de horas que despende a cuidar do familiar, o estado de saúde do familiar, bem como se este tem ajuda na prestação dos cuidados.
Os autores analisam as modificações do mundo do trabalho a partir da crise do modelo fordista no final dos "trinta gloriosos" anos do pós- guerra. O uso intensivo de tecnologia, a abertura de mercados globalizados, a financeirização do capital e as modernas técnicas de gestão e planejamento do novo modo de acumulação flexível alteram a composição, a qualidade e a quantidade do emprego colocando em risco o assalariamento formal como paradigma social. A flexibilidade e a precarização dos contratos disseminam modalidades informais de trabalho, como recurso de sobrevivência para uma parcela não residual de trabalhadores. São debatidos os conceitos de "setor informal", as várias correntes que abordam o fenômeno da informalidade nos países de terceiro mundo e pesquisas de campo já realizadas sobre o segmento. Na conclusão afirmam a importância do trabalho informal para a geração de renda, empregos e para a manutenção da coesão social, principal- mente em face de sua existência subordinada intersticialmente ao modo de acumulação dominante.
Para Santos (1979, p.36), a pechincha é um expediente imprescindível no setor informal porque nele as práticas são pressionadas pela margem de lucros, pelas despesas que oscilam segundo as necessidades do fiscal corrupto, não dispõe de prazos e de créditos garantidos por papeis oficialmente reconhecidos. O setor informal, mediante a sua forma de vinculação com o mercado, é obrigado a comprar a preços relativamente altos e a vender a preços relativamente baixos afirma Cartaya (1987, p.80-81).Todas essas desvantagens para o informal se dão de forma inversa para o empresário formal.
We can conclude, then, that for this particular type of BD patient, the presence of a spouse can reduce hospitalization rates, though does not reduce the number of episodes of the disease. Future studies should investigate whether brief hospitalizations are associated with the pattern of coping skills of caregivers.