Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.

Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives' perspectives

Objectives: This study aims to determine pain frequency amongst care home residents with dementia, to investigate variables associated with pain, to explore analgesic use among residents and to seek residents' relatives' views on provision of care and management of pain by the care home. Methods: Structured face-to-face interviews were conducted with residents, nursing staff and relatives from nine dementia care homes in Northern Ireland, between May 2010 and March 2012. Demographic information was collected from participants, neuropsychiatric tests were used to assess residents' cognitive functioning, medication use was determined from care home records and residents' pain was assessed using a verbal descriptor scale. Relatives' views were sought on care provision and management of pain. Results: Forty-two residents, 16 nurses/care assistants and 35 relatives participated; the participation rate of residents was low (27.6%). Most residents were suffering moderate-severe dementia, and some residents (26.2%) were unable to provide a self-report of pain. A significantly higher proportion of relatives (57.1%) deemed residents to be experiencing pain at the time of the interview, compared with residents (23.8%, p = 0.005) and nurses/care assistants (42.9%, p = 0.035). Most residents (88.1%) were prescribed with analgesia; non-opioid analgesics were most commonly prescribed. High proportions of residents were prescribed with psychoactive medications. Antipsychotic drug use was associated with presence of pain (p = 0.046). Conclusions: This study has reinforced the challenge of assessing and managing pain in this resident population and highlighted issues to be addressed by long-term care providers and clinicians. Participation of people with dementia, and their families, in healthcare research needs to be improved.

Predictors of place of death for those in receipt of home-based palliative care services in Ontario, Canada

Many cancer patients die in institutional settings despite their preference to die at home. A longitudinal, prospective cohort study was conducted to comprehensively assess the determinants of home death for patients receiving home-based palliative care. Data collected from biweekly telephone interviews with caregivers (n=302) and program databases were entered into a multivariate logistic model. Patients with high nursing costs (odds ratio [OR]: 4.3; confidence interval [CI]: 1.8-10.2) and patients with high personal support worker costs (OR: 2.3; CI: 1.1-4.5) were more likely to die at home than those with low costs. Patients who lived alone were less likely to die at home than those who cohabitated (OR: 0.4; CI: 0.2-0.8), and those with a high propensity for a home-death preference were more likely to die at home than those with a low propensity (OR: 5.8; CI: 1.1-31.3). An understanding of the predictors of place of death may contribute to the development of effective interventions that support home death.

“CAPACITAR O DOENTE ONCOLÓGICO COM DOENÇA AVANÇADA E/OU O CUIDADOR PARA A GESTÃO DA DOR EM DOMICÍLIO” “EMPOWER THE ONCOLOGIC PATIENT WITH ADVANCED DISEASE AT HOME AND/OR THE CAREGIVER FOR THE MANAGEMENT OF PAIN”

RESUMO ABSTRACT Comunicações orais e Posters Oral communications and posters Este formulário, após preenchido, e aceites as condições descritas no regulamento das Comunicações orais e Posters deve ser enviado para isnr@porto.ucp.pt After complete this form and accept the conditions described in the oral communications and posters regulation, please sent to isnr@porto.ucp.pt Tipo de comunicação (comunicação oral ou poster): Comunicação oral Type of communication: (oral communication or poster): Oral comunication Título (Title): “CAPACITAR O DOENTE ONCOLÓGICO COM DOENÇA AVANÇADA E/OU O CUIDADOR PARA A GESTÃO DA DOR EM DOMICÍLIO” “EMPOWER THE ONCOLOGIC PATIENT WITH ADVANCED DISEASE AT HOME AND/OR THE CAREGIVER FOR THE MANAGEMENT OF PAIN” Autoria (Authors): CORREIA, Isabel* (doutoranda em Enfermagem na Universidade de Lisboa) LOPES, Manuel (orientador do projeto) Afiliação dos autores (Authors affiliation): – Professora adjunta na Universidade de Évora, Escola Superior de Enfermagem de São João de Deus de Évora, doutoranda em enfermagem Universidade de Lisboa - – Professor Doutor em Enfermagem, Diretor da Escola Superior de Enfermagem de São João de Deus de Évora, Universidade de Évora E-mail: icorreia@uevora.pt - 964078445 mjl@uevora.pt Resumo (3000 caracteres com espaços) INTRODUÇÃO Um dos sintomas mais frequentes no doente oncológico com doença avançada é a dor. Segundo Palliative Care in European, a dor oncológica, tem uma importância especial porque o cancro é a segunda causa de morte em Portugal e por existir dor moderada a intensa em mais de 90% dos doentes em situação oncológica terminal. O desenvolvimento de um programa estruturado de intervenção de enfermagem que vá de encontro às necessidades do doente oncológico com doença avançada e/ou cuidador, relativamente à gestão da dor, poderá ter um impacto muito significativo no controlo da dor e de outros sintomas. OBJETIVOS Avaliar o efeito de um programa de Intervenção de Enfermagem na capacidade de gestão da dor por parte do doente oncológico com doença avançada e/ou o cuidador em domicílio. MATERIAIS E MÉTODOS A implementação do programa tem a duração prevista para 6 semanas. Compreende duas sessões educativas, três telefonemas e uma sessão de avaliação final. O programa foi elaborado, após uma Revisão sistemática de Literatura, com base no programa “ THE PRO-SELF”, nas Orientações Genéricas preconizadas pelo Plano Nacional de Luta Contra a dor e na Intervenção de enfermagem “Controle da Dor” da Nursing Intervention Classification (NIC). RESULTADOS O projeto encontra-se na fase de implementação e avaliação do programa educativo. No início os doentes não apresentam informação relativamente à gestão da dor, no final demonstram capacidade para a monitorização da dor e de outros sintomas e para a gestão da terapêutica, realizando os registos num diário de bordo. A literacia, a situação clínica e a disponibilidade interferem na capacidade de gestão. A proximidade da morte e a alteração do estado de consciência interferem na autonomia e na tomada de decisão. CONCLUSÃO Em fase de colheita e análise de dados. REFERÊNCIAS BIBLIOGRÁFICAS 1. FREIXO, Manuel. Metodologia Cientifica - Fundamentos, Metodos e Tecnicas. s.l. : Piaget, 2011. 2. Bulechek, Gloria M. e etal. Classificaçaõ das Intervenções de Enfermagem (NIC). Rio de Janeiro : elsevier, 2010. 3. Tsigaroppoulos, T. e etal. Problems faced by relatives caring for cancer patients at home. International Journal Of Nursing Practice. 15, 2009, Vol. 1, Nursing Pratice. 4. west, C.:Dodd,M., et al. Pain Control Program-an effective approach for cancer pain management. Oncology Nursing Forum. 1, 2003, Vol. 30, Oncology Nursing. 5. NR/rdonlyres/6861126B-C57A-46E1-B065-316C0CF8DACD/0/ControlodaDor.pdf, . (2008). . Consultado em 30 de Novembro de 2012 a partir de. Direcção-Geral da Saúde . http://www.portaldasaude.pt. [Online] 2008. [Citação: 30 de Novembro de 2012.] http://www.portaldasaude.pt/NR/rdonlyres/6861126B-C57A-46E1-B065-316COCF8DACD/0/Controlodador.pdf . Abstract (3000 characters with spaces) INTRODUCTION One of the most frequent symptoms in oncological patient with advanced disease is pain. According to Palliative Care in European, oncological pain, has a special importance because the cancer is the second most common cause of death in Portugal and there is moderate to severe pain in more than 90 % of patients in oncological terminal situation. The development of a structured program of nursing intervention that will meet the needs of the oncological patient with advanced disease and/or caregiver at home on pain management, will be able to provide for the management of pain, increasing knowledge for the control of pain while minimizing the associated symptoms that influence the quality of life of the patient and the caregiver's anxiety. PURPOSE/GOAL/AIM To evaluate the effect of an educational program of Nursing Intervention on pain management by the oncological patient with advanced disease and/or caregiver. RESEARCH/PROBLEM What is the effect of a structured program of nursing intervention directed to the patient and/or oncological patient caregiver with advanced disease at home, in the management of pain? METHODOLOGY Almost experimental study, with assessment of the management capacity of the oncological patient pain with advanced disease at home and/or informal caregiver, before and after the intervention of nursing (educational program) and transverse evaluation throughout the study. Population: oncological patients with advanced disease at home, with more than 18 years, and or family caregiver, attending an Oncology Unit – Hospital during the day. RESULTS Made an application in an Oncology service in oncological patients with advanced disease at home, it was found that at the beginning the patients did not present information regarding pain management, at the end demonstrated capacity for monitoring of pain and other symptoms and therapeutic management, performing a logbook records. CONCLUSION In the process of collection and analysis of data. KEYWORDS Educational Program; oncological patient; oncological pain.

Prevention of falls in the elderly in the home: promoting active ageing

Objective: To determine the frequency of falls and identify risk factors in the homes of the elderly under the Home Care Service of a village in Alentejo (Portugal). Method: Exploratory, descriptive study. The target group were elderly persons under the Home Care Service (23). The questionnaire consists of open and closed questions, and was based on the Jefferson Area Board for Aging Safety in the Home Assessment; Instrument to Assess the Risk of Falls and Adaptations to Prevent Falls at Home. Results: Of the 23 seniors, 13 were men; the mean age was 85; 10 widowers; 11 live alone; 12 cannot read or write; 17 have experienced falls, loss of balance being the main cause. They report changes in vision (21), hearing (14) and rheumatic diseases (14); hypertension (19); they use 4 or more drugs on a daily basis (16). Conclusion: The physiological changes associated with ageing may increase the risk of falls. Due to the consequences, it is a priority field in community intervention.

Fear causes tears – perineal injuries in home birth settings : a Swedish interview study

Background: Perineal injury is a serious complication of vaginal delivery that has a severe impact on the quality of life of healthy women. The prevalence of perineal injuries among women who give birth in hospital has increased over the last decade, while it is lower among women who give birth at home. The aim of this study was to describe the practice of midwives in home birth settings with the focus on the occurrence of perineal injuries. Methods: Twenty midwives who had assisted home births for between one and 29 years were interviewed using an interview guide. The midwives also had experience of working in a hospital delivery ward. All the interviews were tape-recorded and transcribed. Content analysis was used. Results: The overall theme was "No rushing and tearing about", describing the midwives' focus on the natural process taking its time. The subcategories 1) preparing for the birth; 2) going along with the physiological process; 3) creating a sense of security; 4) the critical moment and 5) midwifery skills illuminate the management of labor as experienced by the midwives when assisting births at home. Conclusions: Midwives who assist women who give birth at home take many things into account in order to minimize the risk of complications during birth. Protection of the woman's perineum is an act of awareness that is not limited to the actual moment of the pushing phase but starts earlier, along with the communication between the midwife and the woman.

Unlicensed personnel administering medications to older persons living at home : a challenge for social and care services

BACKGROUND: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge. AIM: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care. METHODS: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis. RESULTS: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality. CONCLUSIONS: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. IMPLICATIONS FOR PRACTICE: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.

Patients' experiences of peritoneal dialysis at home: a phenomenological approach

O objetivo deste estudo foi compreender a experiência da diálise peritoneal domiciliar, a partir da narrativa dos pacientes. A abordagem do estudo inspirou-se na fenomenologia hermenêutica de Paul Ricoeur. Foram entrevistados 19 pacientes na unidade de hemodiálise de um hospital público brasileiro, de março a setembro de 2009. As entrevistas foram orientadas pela questão: descreva sua experiência na diálise peritoneal. Os resultados desvelaram a percepção dos participantes sobre o significado da doença em suas vidas e as drásticas transformações pessoais sofridas nesse processo. Sentimentos de angústia e dor física foram acompanhados por importantes limitações pessoais e sociais, impostas pelo tratamento. Eles esperam por um futuro incerto, reconhecendo sua dependência da ajuda dos familiares e dos profissionais da saúde. Os resultados desvelam as dificuldades e a falta de perspectivas vividas pelos pacientes em diálise, demonstrando o papel crucial que cabe aos profissionais que os acompanham. Ajudá-los a desenvolver o autocuidado e maximizar sua qualidade de vida é prioridade na assistência a esses pacientes.

Nurse-patient communication while performing home dialysis: The patients' perceptions

This study aimed at describing patients' perception of their communication with nurses when performing home dialysis. Data were collected from interviews guided by the question: What is communication like, between you and nurses, during home dialysis treatment? Results show participants' perception of treatment during home peritoneal dialysis [Continuous ambulatory peritoneal dialysis (CAPD)]; relationship with nurses and family and the effects of treatment on one's existence. Patients can be self-caring and they learn to value the autonomy in their own care. However, some are unable to assume the responsibility for self-care. It was discovered that the connotation of inspection that some participants attributed to the nurse's visits, led to an alienation from the education process in the CAPD education. Findings suggest that effective communication and the development of the relationship of a working partnership with patients is crucial. Improvement in the nurses' communication, aiming at adapting it to the characteristics, limitations and specific needs of each patient, is significant for achieving better outcomes. © 2010 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Potentially hazardous waste produced at home

Background: The purpose of this study was to identify the sources of waste generation household consisting of biological material and to investigate the knowledge presented by those responsible for the generation of waste in the home environment on the potential health risk human and environmental. Method. It is a quantitative survey performed in Parque Capuava, Santo André (SP). The questionnaire was administered by the community employers and nursing students during the consultation with nursing supervision through interview question/answer. The exclusion criteria were patients who were not in the area served by the Basic Health Unit which covers the area of Pq Capuava. The sample was consisted of 99 persons and the data collection a questionnaire was used. Results: We observed that 63.3% of people said to use disposables, with the majority (58.7%) of these use the public collection as the final destination of these materials. It was reported that 73.7% of those surveyed reported having knowledge about the risk of disease transmission. Public awareness of the importance of proper packaging and disposal of potentially hazardous household waste may contribute significantly to the preservation of human and environmental health and this procedure can be performed and supervised by professional nurses. Conclusion: We suggest implementation of workshops for community health workers and the general population in order to enhance their knowledge about the storage and disposal of potentially infectious waste generated at home, thereby reducing the potential risk of disease transmission by improper management. © 2013 Chaves et al.; licensee BioMed Central Ltd.

Family Management Style Framework and Its Use With Families Who Have a Child Undergoing Palliative Care at Home

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.

THE SOCIOECONOMIC AND DEMOGRAPHIC CHARACTERIZATION OF CHILDREN AND ADOLESCENTS WHO STUDY AND WORK OUTSIDE THEIR HOME

The objective of this study was to identify the socioeconomic and demographic characteristics of children and adolescents who study and work outside their home. This non-experimental, correlational, cross-sectional study was performed using questionnaires applied to primary education students, enrolled in public schools in Ribeirao Preto (Brazil). Two schools were selected through a draw. Data analysis was performed using Statistical Package for Social Sciences, version 14.0. Of the 133 students who answered the questionnaire, 36 (27.7%) reported working outside their home, 20.6% were between 11 and 13 years of age, and 66.7% were male (p=0.000) and had started working early to help with the family income (p=0.003). The salary they received helped comprise the family income, and it was found that as the family income increased, the need for the youngsters to work was reduced. It was found that many factors contribute to these subjects' early start at work, including family size, structure and poverty.

Incidence of gastric extubation of users in a home care program of a university hospital

This quantitative, prospective study, aimed to characterize the profile of users and caregivers and to measure the incidence of gastric extubation, identifying the type and the reasons for the extubation of these users in a Home Care Program of a university hospital. The population consisted of 37 subjects and the date were collected from April to August 2010. For the analysis, descriptive statistics, test of significance of 5% and calculation of indicators were adopted. It was found that 51.4% of the users were female, 67.5% in the age group >= 60 years and 67.6% presented neurological diseases. Regarding the caregivers 89.2% were female and their mean age was 50.6 years. The incidence of extubation, considering 100 days of intubation, corresponded to 1.08, with 0.26 planned and 0.82 unplanned (p=0.009). These results allowed the rates to be calculated of the extubation of patients with gastric intubation for nutritional support in domicile care, providing support in establishing care and management goals for the continuous improvement of quality.

Nursing intervention in insulin administration: telephone follow-up

OBJECTIVE: To analyze the competency of people with diabetes mellitus to perform the insulin administration process, before and after telephone monitoring. METHODS: A quantitative, observational, longitudinal, comparative study. Participants were 26 people enrolled in the at-home capillary glycemia self-monitoring program. Data collection occurred in three phases, in January and February of 2010, for a period of 30 days for each person, by means of interview guided by a data collection instrument and an intervention manual. RESULTS: Of the 38 (100%) questions referring to the insulin administration process, telephone monitoring was demonstrated to be efficient in 30 (78.9%), but in 19 (50%) the intervention was statistically significant (p<0.05), in 11 (28.9%) there were no errors in responses to the final competency evaluation, and seven (18.4%) were not amenable to intervention. CONCLUSION: Telephone mornitoring was effective, as a nursing intervention strategy for the insulin administration process in the home.