Patients on the Waiting List for Liver Transplantation: Caregiver Burden and Stress

Over the last few decades, informal caregivers of patients with chronic diseases have received more attention, and there is a growing volume of studies demonstrating high rates of burden, stress, and mental disorders in this group of individuals. The objective of this study was to evaluate the burden, stress, and psychosocial characteristics of informal caregivers of liver transplantation candidates. Participants were assessed by individual evaluations with the following instruments: a semi-structured interview, the Caregiver Burden Scale, the Inventario de Sintomas de Stress para Adultos de Lipp, and the Beck Depression Inventory. The Mann-Whitney test was used for statistical analysis with a significance level of 0.05. The characteristics of the study group (n = 61) were similar to those of groups in other studies with respect to gender (82% were women), kinship (64% were spouses), and age (the mean age was 47.6 years). The main stressors identified by the participants were as follows: doubts about ways to react in a crisis or in emergency situations (42.6%), mood swings of the patient (29.5%), and care involving food and medications (27.9%). Approximately 25% of the caregivers reported that they felt unprepared to adequately perform their roles. Data analysis indicated a greater burden overall on caregivers when the patient`s Model for End-Stage Liver Disease score was greater than or equal to 15 points (P = 0.041). Furthermore, caregivers of patients with alcoholic liver disease showed higher depression (P = 0.034) and overall burden scores (P = 0.031) versus caregivers of patients with liver disease due to other etiologies. In conclusion, the participants showed significantly high levels of burden, stress, and depression. Support measures and caregiver preparation should be implemented by health care providers. Liver Transpl 16: 1164-1168, 2010. (C) 2010 AASLD.

Pediatric pain: prevalence, assessment, and management in a teaching hospital

The goal of this study was to examine the prevalence, assessment and management of pediatric pain in a public teaching hospital. The study sample consisted of 121 inpatients (70 infants, 36 children, and 15 adolescents), their families, 40 physicians, and 43 nurses. All participants were interviewed except infants and children who could not communicate due to their clinical status. The interview included open-ended questions concerning the inpatients’ pain symptoms during the 24 h preceding data collection, as well as pain assessment and pharmacological/non-pharmacological management of pain. The data were obtained from 100% of the eligible inpatients. Thirty-four children/adolescents (28%) answered the questionnaire and for the other 72% (unable to communicate), the family/health professional caregivers reported pain. Among these 34 persons, 20 children/adolescents reported pain, 68% of whom reported that they received pharmacological intervention for pain relief. Eighty-two family caregivers were available on the day of data collection. Of these, 40 family caregivers (49%) had observed their child’s pain response. In addition, 74% reported that the inpatients received pharmacological management. Physicians reported that only 38% of the inpatients exhibited pain signs, which were predominantly acute pain detected during clinical procedures. They reported that 66% of patients received pharmacological intervention. The nurses reported pain signs in 50% of the inpatients, which were detected during clinical procedures. The nurses reported that pain was managed in 78% of inpatients by using pharmacological and/or non-pharmacological interventions. The findings provide evidence of the high prevalence of pain in pediatric inpatients and the under-recognition of pain by health professionals.

Working With Families of Impaired Elderly

In this article, several approaches to working with the complexity of family relationships in later adulthood are described. Basic information on family forms and the pattern of family support for older adults is discussed. In addition, several examples of interventions with family members of older adults are reviewed. The goal of these activities is to increase the range of options available to older adults and their family caregivers.

A quality of life subscale for terminally ill cancer patients

A subscale was developed to assess the quality of life of cancer patients with a life expectancy of six months or less. Phase I of this study identified the major concerns of 74 terminally ill cancer patients (19 with breast cancer, 19 with lung cancer, 18 with colorectal cancer, 9 with renal cell cancer, 9 with prostate cancer), 39 family caregivers, and 20 health care professionals. Patients interviewed were being treated at the University of Texas M. D. Anderson Cancer Center or at the Hospice at the Texas Medical Center in Houston. In Phase II, 120 patients (30 with breast cancer, 30 with lung cancer, 30 with colorectal cancer, 15 with prostate cancer, and 15 with renal cell cancer) rated the importance of these concerns for quality of life. Items retained for the subscale were rated as "extremely important" or "very important" by at least 60% of the sample and were reported as being applicable by at least two-thirds of the sample. The 61 concerns that were identified were formatted as a questionnaire for Phase III. In Phase III, 356 patients (89 with breast cancer, 88 with lung cancer, 88 with colorectal cancer, 44 with prostate cancer, and 47 with renal cell cancer) were interviewed to determine the subscale's reliability and sensitivity to change in clinical status. Both factor analysis and item response theory supported the inclusion of the same 35 items for the subscale. Internal consistency reliability was moderate to high for the subscale's domains: spiritual (0.87), existential (0.76), medical care (0.68), symptoms (0.67), social/family (0.66), and emotional (0.61). Test-retest correlation coefficients also were high for the domains: social/family (0.86), emotional (0.83), medical care (0.83), spiritual (0.75), existential (0.75), and symptoms (0.81).^ In addition, concurrent validity was supported by the high correlation between the subscale's symptom domain and symptom items from the European Organization for Research and Treatment of Cancer (EORTC) scale (r = 0.74). Patients' functional status was assessed with the Eastern Cooperative Oncology Group (ECOG) Performance status rating. When ECOG categories were compared to subscale domains, patients who scored lower in functional status had lower scores in the spiritual, existential, social/family, and emotional domains. Patients who scored lower in physical well-being had higher scores in the symptom domain. Patient scores in the medical care domain were similar for each ECOG category. The results of this study support the subscale's use in assessing quality of life and the outcomes of palliative treatment for cancer patients in their last six months of life. ^

Qualidade da Construção dos Vínculos entre Filhas Cuidadoras e Mães Idosas Dependentes

Este estudo teve por objetivos: - descrever as dificuldades nas relações entre as filhas-cuidadoras e suas mães idosas dependentes de cuidados, a partir de relatos das filhas; - investigar, a partir dos relatos da história familiar dessas filhas, a existência de conflitos prévios a necessidade de cuidar, relacionados à construção dos vínculos; identificar os principais desafios associados assistência ao cuidador familiar de idosos no que tange a resolução de conflitos com o idoso dependente. Método – tratou-se de um estudo qualitativo em que foram apresentados três casos clínicos de cuidadoras que haviam sido encaminhados para atendimento psicológico pela equipe multiprofissional de um Instituto de Geriatria e Gerontologia, unidade de atenção secundária da Secretaria de Estado da Saúde de S.P. Os resultados indicaram dificuldades relacionais entre ambas: cuidadoras filhas e mães idosas. As cuidadoras revelaram sobrecarga física e emocional e grande sofrimento. Todavia, a existência desses conflitos remontava às relações anteriores à atual situação de dependência; ficando bastante evidenciado, tanto pelas histórias de vida das cuidadoras, quanto pelo conteúdo trazido durante o processo terapêutico, a repetição das relações primeiras estabelecidas entre mãe-filha. O processo psicoterapêutico pôde permitir a essas cuidadoras a compreensão da necessidade em ter suas falhas ambientais supridas, na medida em que foi propiciado um ambiente favorável ao relacionamento humano. Assim, ao observarmos que ao longo do processo as pacientes apresentavam mudanças significativas, entendemos que a psicoterapia pode figurar como meio preventivo e preservação de equilíbrio psíquico.

Sobrecarga de cuidadores familiares de idosos em cuidados paliativos

O adoecimento de um membro familiar costuma acarretar inúmeras alterações em toda a estrutura e dinâmica familiar. Com a progressão e o agravamento da doença, quando a pessoa se encontra sem possibilidade de tratamento modificador da doença, aumenta o sofrimento tanto da pessoa adoecida quanto de sua família. O cuidador familiar de pessoas idosas em cuidados paliativos sofre junto ao enfermo, podendo enfrentar sobrecarga física, emocional e social decorrente da tarefa de cuidar e da possibilidade da morte. Entretanto, são escassos os estudos que avaliam a sobrecarga desta população. O objetivo deste estudo é identificar e analisar a percepção de sobrecarga por parte do cuidador familiar de idosos em cuidados paliativos. Trata-se de uma pesquisa do tipo transversal, exploratório, de metodologia quantitativa, não probabilística, com uma casuística total composta por 100 pessoas. Essa casuística foi estratificada de acordo com escore obtido por meio da aplicação do protocolo Karnofsky Performance Scale (KPS) com os idosos (com 60 anos ou acima) em cuidados paliativos oncológicos: um grupo com 25 cuidadores familiares de idosos com KPS abaixo de 40%; um grupo com 25 cuidadores de idosos em cuidados paliativos oncológicos com KPS de 70%, 60% ou 50%; um grupo controle com 50 cuidadores familiares de idosos em cuidados paliativos oncológicos, com KPS maior ou igual a 80%. Durante a coleta de dados, além do KPS, foram aplicados o questionário de caracterização clínica e sociodemográfica e os protocolos: Questionário de Classificação Socioeconômica Brasil e o Caregiver Burden Scale (CBScale), validado no Brasil. Para análise dos dados, foi realizada estatística descritiva e as comparações com os grupos foram feitas por meio do Teste Exato de Fisher e de um modelo de regressão quantílica. As análises foram feitas pelo software SAS 9.0 e Stata versão 13. Os resultados indicaram que os cuidadores familiares são, em sua maioria, mulheres, filhas ou esposas, de meia idade a idade mais avançada, predominantemente, na faixa etária de 56 a 71 anos, com baixa escolaridade, pertencentes a classes sociais C e que não realizam nenhuma atividade remunerada. Os maiores índices de sobrecarga foram percebidos em cuidadores do sexo feminino e em cuidadores de idosos os quais apresentam menores escores relativos à capacidade funcional (avaliados pelo KPS). Conclui-se que o agravamento da doença, o declínio funcional do idoso e a possibilidade da sua morte mais próxima fazem aumentar a sobrecarga dos cuidadores, com impactos na sua saúde e qualidade de vida, o que indica a necessidade de oferecimento de serviços de apoio a essa população o mais precocemente possível

Caregiver burden, time spent caring and health status in the first 12 months following stroke

Objective: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. Methods: Patients and carers prospectively interviewed 6 (n = 71) and 12 (n = 57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. Results: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. Conclusions: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.

Effectiveness of a mutual support group for families of patients with schizophrenia

Aim. This paper reports a study to examine the effectiveness of a 12-session mutual support group for Chinese families caring for a relative with schizophrenia compared with a psycho-educational group and routine family support services in Hong Kong. Background. Schizophrenia is a disruptive and distressing illness for patients and their families. With the current trend of community care for mental illness, there is evidence that family intervention reduces patient relapse and re-hospitalization, satisfies the health needs of families and enhances their coping capabilities. Methods. A randomized controlled trial was conducted from May 2002 to June 2003 with 96 Chinese families of a relative with schizophrenia selected from two psychiatric outpatient clinics in Hong Kong. Families were randomly assigned to receive mutual support (n = 32), psycho-education (n = 33) or standard care only (n = 31). The interventions were delivered at outpatient clinics over a 6-month period. Pre- and post- (1 week and 6 months) testing took place and families' functioning, mental health service utilization, patients' level of functioning and duration of re-hospitalization were measured. Results. At both post-test periods, family caregivers and patients in the mutual support group reported statistically significant improvements on family and patients' level of functioning, when compared with their counterparts in the psycho-education and standard care groups. Conclusions. The findings support the use of mutual support groups as an effective modality of family intervention in a Chinese population caring for a family member with schizophrenia to improve both family and patient functioning.

Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

Qualidade da Construção dos Vínculos entre Filhas Cuidadoras e Mães Idosas Dependentes

Este estudo teve por objetivos: - descrever as dificuldades nas relações entre as filhas-cuidadoras e suas mães idosas dependentes de cuidados, a partir de relatos das filhas; - investigar, a partir dos relatos da história familiar dessas filhas, a existência de conflitos prévios a necessidade de cuidar, relacionados à construção dos vínculos; identificar os principais desafios associados assistência ao cuidador familiar de idosos no que tange a resolução de conflitos com o idoso dependente. Método – tratou-se de um estudo qualitativo em que foram apresentados três casos clínicos de cuidadoras que haviam sido encaminhados para atendimento psicológico pela equipe multiprofissional de um Instituto de Geriatria e Gerontologia, unidade de atenção secundária da Secretaria de Estado da Saúde de S.P. Os resultados indicaram dificuldades relacionais entre ambas: cuidadoras filhas e mães idosas. As cuidadoras revelaram sobrecarga física e emocional e grande sofrimento. Todavia, a existência desses conflitos remontava às relações anteriores à atual situação de dependência; ficando bastante evidenciado, tanto pelas histórias de vida das cuidadoras, quanto pelo conteúdo trazido durante o processo terapêutico, a repetição das relações primeiras estabelecidas entre mãe-filha. O processo psicoterapêutico pôde permitir a essas cuidadoras a compreensão da necessidade em ter suas falhas ambientais supridas, na medida em que foi propiciado um ambiente favorável ao relacionamento humano. Assim, ao observarmos que ao longo do processo as pacientes apresentavam mudanças significativas, entendemos que a psicoterapia pode figurar como meio preventivo e preservação de equilíbrio psíquico.

A study of dual cultures in dyadic relations

Elderly caregiving, a fact of life for millions of Americans, has gained significance with the increase in the elderly population. Over 25 million family caregivers in the US, most of whom are women rearing their own children, care for severely ill or disabled family members. The increased flow of women into the labor force has caused this traditional role to be entrusted to hired caregivers, mainly home health aides. ^ This case study describes and explains the dyadic experiences of elderly Jewish clients and their Jamaican home health aides in a mixed-culture environment. The inquiry was conducted with a purposive sample of four dyads, their case manager, and the placement officer, all of whom were selected through a home care agency in Fort Lauderdale, Florida. Strategies of data collection including non-participant observation, interviews, document analysis, and researcher's journals. Data from verbatim transcription of interviews and field notes were coded, sorted into emic categories, and reduced as linkages were identified via cross-case comparison. Three major themes—mixed-culture experiences, relationship building and maintenance, and agency role perceptions—emerged from the interpretative analysis of the data. ^ Assertions from these findings include that dyads have established a range of relationships to meet their personal needs, expectations, and desires in these goal-driven relationships. Relationally, they have reached interactional synchrony with some achieving the ideal family-type bond. Cultural difference is but one of the many contextual variables in the home care environment, which has its own cultural norms and expectations. Conflicts transcend cultural difference and seemed more a factor of individual relational disposition. ^

Ser cuidador de paciente com acidente vascular cerebral: histórias não contadas

The present study aimed to understand the experience of being a family caregiver of a patient with Cerebrovascular Accident (CVA). The relevance of the study is to prove existence of a large number of caregivers of incapacitated patients, due to the CVA and it is not an academic research object, according to the literature. It is a qualitative research, which the guiding principle is the oral history of life, according to the theoretical foundation and operating of Meihy. Therefore, the following steps were highlighted: the target community, composed of all family caregivers of CVA patients; the colony, composed by family caregivers of CVA patients assisted by Home Care Service (HCS) of the Hospital José Pedro Bezerra (HJPB), in the city of Natal/RN; the network was composed of six caregivers who met the criteria for inclusion, and as zero point the first volunteer group. The population was composed of all family caregivers of patients attended by the HCS, of the HJPB having been addressed through interviews. For the empirical research there was the consent of that institution and approval by the Ethics Committee in Research of the Federal University of Rio Grande do Norte as CAAE 24569413.0.0000.5537 and, above all, with the acquiescence of employees in participating in the investigation, signing an informed consent. Of the empirical material, five categories of analysis were identified: the sense of being a caregiver; what has changed in the life of the caregiver; the feelings emerge in the relationship of care; the distance from family and friends; difficulties faced by the caregiver. The results show that the caregiver's life goes through profound transformations within the family as well as in all spheres of life. For the caregivers, assuming the care of a relative with CVA means renunciation and donation, compromising sometimes the individual projects and the family as a whole. In addition, they point out the confrontation of difficulties within the the assistance and humanization in healthcare, information, physical and emotional overload, as well as financial problems. Despite all the adversities that compromise the caregiver's life, it was possible to identify attitudes of resilience among caregivers, making them their daily life less strenuous and with more lightness. It is expected, therefore, that this research can contribute to a better orientation of professionals with the caregivers

Evaluación de la calidad de un servicio de voluntariado en oncología: un Análisis Importancia-Valoración (IPA)

Objective: Using an Importance-Performance Analysis (IPA), this paper examined a Radiotherapy and Oncological Patient and Non-patient perceived importance and performance of ten Humanization Volunteer Program selection factors in the General Hospital in Spain.Methods: The authors identified a list of seven items from the Health-marketing literature reviews, and each item was rated using a 5-point Likert scale. Responses were obtained of 148 usable interviews.Results: The importance-performance patient grid was corrected with literature recommendations and, in the patient sample, shows three items fall in the “Keep up the good work” quadrant, four items fall into the “Low priority” quadrant, zero items fall into the “Possible overkill” quadrant, and no items fall in the “Concentrate here” quadrant. Non-patient (n=80) factors means shows statistical differences with patient (n=68) means in catering (t=-2.38; df.=146; p<0.05), and information (t=2.16; df146; p<0,05).Conclusions: The results are useful in identifying areas for strategic focus to help Health Services managers develop humanization programs with volunteer workers and different program users. Implication to volunteer programs managers and researchers were discussed.

Arteterapia en el final de la vida

El arteterapia permite una aproximación creativa biográfica particularmente valiosa en la etapa final de la vida. La persona enferma presenta múltiples necesidades – físicas, emocionales, sociales y espirituales – que solo una atención holística puede pretender abarcar, tal como lo contempla la filosofía de los cuidados paliativos. El arteterapeuta integrado en el equipo interdisciplinar contribuye a aliviar y acompañar el sufrimiento del paciente y su familia. Se presentan aquí las bases teóricas y la metodología de la intervención, así como el marco sanitario en el cual se inscribe.

Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.