O processo de adaptação do paciente para realização da diálise peritoneal no domicílio / El proceso de adaptación del paciente para la realización de la diálisis peritoneal en el domicilio / The process of patient adaptation to perform peritoneal dialysis at home

Objetivos: identificar as estratégias de adaptação no domicílio, utilizadas pelos pacientes para início do tratamento da diálise peritoneal; descrever as principais facilidades e dificuldades encontradas pelos pacientes na realização da diálise peritoneal no domicílio; identificar o entendimento e a aceitação do paciente sobre o método de diálise peritoneal. Método: estudo descritivo, com abordagem qualitativa. Os dados foram coletados através de entrevistas semi-estruturadas, organizadas e analisadas conforme a técnica de análise de conteúdo de Bardin. Resultados: da análise das unidades de significação emergiram três categorias temáticas, sendo elas representações da DP; vivências e sentimentos frente à doença e na escolha do método; (re) conhecendo aspectos facilitadores e dificultadores diante a diálise peritoneal em casa; identificando as estratégias para adequação do cotidiano à diálise peritoneal. Conclusão: após o reconhecimento da necessidade da utilização da diálise peritoneal para manutenção da vida, o paciente desenvolve uma série de adaptações para viabilizar o tratamento diário em domicílio.

Objetivos: identificar las estrategias de adaptación en el domicilio, utilizadas por los pacientes para iniciar el tratamiento de la diálisis peritoneal; describir las principales facilidades y dificultades encontradas por los pacientes en la realización de la diálisis peritoneal en el domicilio; identificar la comprensión y aceptación del paciente sobre el método de diálisis peritoneal. Método: estudio descriptivo, con enfoque cualitativo. Los datos fueron recogidos a través de entrevistas semi-estructuradas, organizadas y analizadas conforme a la técnica de análisis de contenido de Bardin. Resultados: del análisis de las unidades de significación emergieron tres categorías temáticas, siendo ellas representaciones de la DP; vivencias y sentimientos frente a la enfermedad y en la elección del método; (re) conociendo aspectos facilitadores y dificultadores ante la diálisis peritoneal en casa; identificando las estrategias para adecuación del cotidiano a la diálisis peritoneal. Conclusión: tras el reconocimiento de la necesidad de la utilización de la diálisis peritoneal para el mantenimiento de la vida, el paciente desarrolla una serie de adaptaciones para viabilizar el tratamiento diario en domicilio.

Objectives: to identify the strategies of adaptation at home, used by patients to begin treatment of peritoneal dialysis; to describe the main facilities and difficulties encountered by patients in performing peritoneal dialysis at home; to identify the patient's understanding and acceptance of the peritoneal dialysis method. Method: descriptive study with qualitative approach. Data were collected through semi-structured interviews, organized and analyzed according to Bardin's content analysis technique. Results: three thematic categories emerged from the analysis of the units of meaning, which were representations of PD; experiences and feelings regarding the disease and the choice of method; (re)knowing aspects that facilitate and hinder peritoneal dialysis at home; strategies for the adaptation of daily life to peritoneal dialysis. Conclusion: after recognizing the need to use peritoneal dialysis for life maintenance, the patient develops a series of adaptations to enable daily treatment at home.

Relación entre competencia para el cuidado domiciliario y la presencia de infecciones respiratorias en niños con tratamiento oncológico en el contexto de la pandemia por COVID-19 / Relationship between competence for home care and the presence of respiratory infections in children with cancer treatment in the context of the COVID-19 pandemic / Relação entre a proficiência para dar os cuidados em casa e a presença de infecções respiratórias em crianças sob tratamento oncológico no contexto da pandemia de COVID-19

Introducción: Los cuidados domiciliarios para los niños con enfermedades neoplásicas, representan costos sociales y económicos, además de posibles riesgos de infección. Por lo que, la importancia del cuidado de los menores ante las infecciones respiratorias virales durante la infancia radica en asegurar las correctas medidas de prevención del contagio. El objetivo de este estudio fue determinar la relación existente entre la competencia para el cuidado domiciliario y la presencia de infecciones respiratorias en los niños con tratamiento oncológico. Método: Estudio de enfoque cuantitativo, diseño correlacional, de corte transversal y descriptivo. La muestra se compone de 75 díadas. La competencia del cuidado domiciliario se midió con el instrumento CUIDAR. El análisis estadístico se realizó con el programa estadístico SPSS versión 25, utilizando estadística descriptiva y estadística inferencial no paramétrica. Resultados: La prevalencia de infecciones respiratorias fue del 4% para los menores con cuidadores con un nivel alto de competencia para el cuidado domiciliario, 12% para el nivel medio y 21.3%para el nivel bajo, mostrando dependencia entre las variables de estudio(X2=14.4, gl= 2, p=0.001). Además, se determinó una asociación (r=-.439, p<.001)entre las mismas. Discusión: La competencia con un nivel alto en los cuidados domiciliarios, supone un adecuado desempeño del rol como cuidador familiar con efecto en calidad de vida de la díada cuidador familiar-persona con cáncer. Conclusiones: A mayor competencia para el cuidado, menor la prevalencia de infecciones respiratorias; existiendo una relación entre la competencia para el cuidado domiciliario y la presencia de infecciones respiratorias en los niños con tratamiento oncológico.

Introduction: Home care for children with neoplastic diseases represents social and economic costs, as well as possible risks of infection. Therefore, the importance of caring for minors in the face of viral respiratory infections during childhood lies in ensuring the correct measures to prevent contagion. The objectiveof this study was to determine the relationship between competence for home care and the presence of respiratory infections in children undergoing cancer treatment. Method: Study of quantitative approach, correlational, cross-sectional and descriptive design. The sample consists of 75 dyads. Home care competence was measured with the CARE instrument. Statistical analysis was performed with the statistical program SPSS version 25.0, using descriptive statistics and non-parametric inferential statistics. Results: The prevalence of respiratory infections was 4% for children with caregivers with a high level of home care competence, 12% for the medium level and 21.3% for the low level, showing dependence between the study variables (X2=14.4, gl= 2, p=0.001). In addition, an association (r=-.439, p<.001) was determined between them. Discussion: The competence with a high level in home care supposes an adequate performance of the role as family caregiver with effect on quality of life of the family caregiver-person with a cancer dyad. Conclusions:The higher the caregiving competence, the lower the prevalence of respiratory infections; there is a relationship between home caregiving competence and the presence of respiratory infections in children undergoing cancer treatment.

Introdução: Os cuidados domiciliares para as crianças com doenças neoplásicas representam custos sociais e econômicos, além dos possíveis riscos de infecção. Por isso, a importância de tomar conta delas no que diz respeito às infecções respiratórias virais durante sua meninice radica em segurar as medidas adequadas para prevenir o contágio. O objetivo deste estúdio foi determinar a relação entre as infecções respiratórias nas crianças sob tratamento contra o cancro e a habilitação para lhes fornecer os cuidados em casa. Método: Estúdio da abordagem quantitativa, desenho correlacional, de corte transversal e descritivo. A amostra se compõe de 75 díades. A habilitação dos cuidados em casa foi medida com o instrumento TOMAR CONTA. A análise estatística se realizou com o programa estatístico SPSS, versão 25. Foi utilizada a estatística descritiva e a estatística inferencial não paramétrica. Resultados: A prevalência de infecções respiratórias foi de 4% para as crianças que receberam os cuidados em casa com um alto nível de efetividade; 12%, quando a efetividade dos cuidados foi intermediária; e para a baixa chegou até 21,3%. Isto demonstra a correlação entre as variáveis de estudo (X2= 14,4; gl= 2; p= 0,001). Além disso, se determinou uma associação (r= -,439; p<,001) entre elas. Discussão:A aptidão adequada para fornecer os cuidados em casa aponta que o responsável pela família desempenhou bem seu papel, o que fez com que houvesse repercussões positivas na qualidade de vida da díade "cuidador familiar-pessoa com câncer". Conclusões: Quanto maior é a proficiência para dar os cuidados, menor é o impacto das infecções respiratórias. Existe uma relação entre a habilitação para os cuidados em casa e a presença de infecções respiratórias nas crianças que recebem tratamentos oncológicos

Doing what it takes: a qualitative study of New Zealand carers' experiences of giving home-based palliative care to loved ones.

AIM: The study explored the views of New Zealand home carers providing home-based palliative care, as little is known about this in the New Zealand context. METHODS: A qualitative interview study involving nine bereaved carers whose loved ones had received a combination of hospice, district health board, home-support and general practitioner care. Inductive thematic analysis was undertaken. RESULTS: Two main themes emerged, both with subthemes: (1) Home-a place of safety and self-determination. (2) Doing what it takes. CONCLUSIONS: The study shows that New Zealand carers' experiences of providing home-based palliative care are similar to those in international studies; country-context, ethnicity and health systems likely influence the differences. While carers are grateful for professionals and family/whanau/friend support, they experience challenges that could be addressed by the following recommendations: undertake a regular review with carers regarding the decision to provide care at home; support carers to take on a leadership role if this is what they want; ensure carers have information regarding which professional and which agency does what and who to contact for help; provide post-bereavement support to carers for longer than it is currently being given.

The experiences of family caregivers who participated in a family involvement program after cancer surgery: A qualitative study.

PURPOSE: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients' discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. METHODS: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. RESULTS: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present ('being there') which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. CONCLUSIONS: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones' wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.

Experiences on Providing Home Care for A Relative with Heart Failure: A Qualitative Study.

PURPOSE: The aim of this study was to explore and describe the lived experiences of persons providing home care for community-dwelling relative with heart failure (HF) in Jordan. Design: It was a phenomenological study. Methods: Data were collected through interviews with 29 participants and analyzed using a thematic analysis approach. Findings: Four core themes have emerged: caregiving as a mandatory responsibility, positive experiences, negative experiences, and factors influencing the quality of the experiences. Conclusion: Although the hallmark of the participants' experience was negative, they showed a strong commitment to caring for their ill relatives. Clinical Evidence: The findings underscore the need for frequent assessment and support of family caregivers.

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home.

This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

Female Pakistani carers' views on future formal and informal care for their older relatives in Norway.

BACKGROUND: The aging of Pakistani immigrants in Norway raises questions related to their increased need for care and help from relatives, as well as those concerning what future formal and informal care and healthcare accessibility for older immigrants may look like. The hidden nature of family caregiving means that the circumstances of carers, their views and their dilemmas related to future care are largely invisible. In this study, we explored female Pakistani carers' views of future care and healthcare accessibility for their older relatives in Norway. METHODS: Our data included interviews with family carers between the ages of 23 and 40 years old, living in Oslo, Norway. We recruited ten family carers, out of which eight were daughters and two were daughters-in-law. Interviews were conducted by the first author in Urdu or English and were recorded and transcribed verbatim. RESULTS: Our findings revealed several factors that influenced participants' perceptions about formal and informal caregiving, which can be organised into the following themes: 1) caring for family in Norway as in Pakistan, 2) worries about being 'dropped off' at a care home, 3) concerns about being cared for by outsiders, 4) questions about what other people might say and 5) adhering to society's expectations of a 'good' carer. CONCLUSION: Family carers' traditional views of filial piety do not entirely determine the use of or access to healthcare services of their older relatives. There is a need to develop culturally sensitive healthcare systems so that immigrant families and their carers have more options in choosing care in old age, which in turn will ease their families' care burden. Healthcare professionals and policymakers should not assume that immigrant families will take care of their own older members but should instead secure adequate support for older immigrants and their family carers.

Examining the support needs of older male spousal caregivers of people with a long-term condition: A systematic review of the literature.

AIM: The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. BACKGROUND: Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under-represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. DESIGN: A systematic literature review. METHODS: Four electronic databases and grey literature were systematically searched. RESULTS: The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. CONCLUSION: Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male-specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. IMPLICATIONS FOR PRACTICE: Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.

The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home.

Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers' level of collaboration with nurses was significantly associated with their preparedness for caregiving.

Caregiver Reward and Burden: Differing Constructs in Family Members Providing Care for Medically Ill Homebound Older Adults.

Objective: This study examined the relationship between caregiver burden and reward and how each relates to factors, such as depression, within the caregiving dyad. Method: A total of 101 older adults and their primary family caregivers were recruited upon enrolling in home health care services. Patients were assessed for sociodemographic information, depression, disability, pain, and caregiver support at baseline and at 8 weeks. Caregivers were assessed at baseline for sociodemographic information, depression, caregiver burden, caregiver reward, and caregiving tasks they provide. Results: Burden and reward were significantly inversely correlated, but differentially associated with distinct patient and caregiver variables. Patients whose caregivers reported higher baseline levels of caregiver reward were more likely to have lower depression scores at follow-up. Discussion: Given that different aspects of patients and caregivers influence reward and burden, assessing caregivers for both burden and reward may better target caregiver interventions at the individual and family levels, particularly for older adult depression.

"In the Bengali Vocabulary, There Is No Such Word as Care Home": Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home.

BACKGROUND AND OBJECTIVES: We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers' understanding of, and attitudes to dementia, we explored how carers' cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services. RESEARCH DESIGN AND METHODS: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed. RESULTS: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks. DISCUSSION AND IMPLICATIONS: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

Development of a home-visit nursing scale for helping spousal caregivers of terminal cancer patients develop positive perspectives of their caregiving experiences: a cross-sectional study.

OBJECTIVE: Home-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role. DESIGN: Cross-sectional questionnaire study. SETTING: The Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews. PARTICIPANTS: Overall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation. MAIN OUTCOME MEASURE: Planned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach's α was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity. RESULTS: Exploratory and confirmatory factor analyses identified 26 items on five factors: 'helping spouses plan their futures' 'helping caregivers alleviate any regrets regarding their care', 'understanding the bond between a couple', 'providing support for anticipatory grief', and 'addressing spousal caregivers' emotions after their spouses' deaths'. The final model showed acceptable goodness-of-fit indices. The Cronbach's α for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively. CONCLUSIONS: This scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.

Family Caregivers Are Members of Our Team.

Nurses play a critical role in providing support.

[Choosing, Challenging, Stabilizing, and Fulfilling: The Experiences of Palliative Care at Home as Perceived by Family Caregivers].

BACKGROUND: Although the Taiwan government has subsidized the provision of palliative care at home since 2000, the utilization rate of this service has been low. PURPOSE: The purpose of this research is to explore the experiences of palliative care at home as perceived by family caregivers. METHODS: This qualitative study used semi-structured interviews to collect the data. Six family caregivers who had been providing home-based palliative care services for at least 2 weeks were invited to participate. RESULTS: Four themes related to the care experiences of the participants emerged: (1) Choosing palliative care at home for the end-of-life journey: Considering the wishes of patients and the capacities of caregivers, with hospitals providing powerful support to caregivers; (2) Facing the burdens of providing palliative care in a home setting: Determining the caring skills while feeling fear and stress, and needing to resolve this stress and achieve a respite; (3) Pursuing stable home palliative care: Relying on consultations with the professional palliative care team for information, support, and insights regarding the value of home palliative care; and (4) Fulfilling the promise of a good death at home: Preparing the patient to say goodbye and to experience a peaceful death and family members to express their sadness and adapt to a new life. CONCLUSIONS / IMPLICATIONS FOR PRACTICE: Home palliative care services help provide patients and their families convenience, intimate care, and reassurance at home. However, all caregivers must be properly trained in caring skills and the skills necessary to sustain their long-term care responsibilities. Home palliative care services have been described as the internal and external needs that patients and families require to maintain a stable quality of life and as the comfort required by the bereaved family members. The findings of this study demonstrate the value of home palliative care and of promoting home palliative care at the end of life.

Having to Be the One: Mothers Providing Home Care to Infants With Complex Cardiac Needs.

BACKGROUND: Early diagnosis of complex congenital heart disease and advances in surgical interventions have resulted in remarkable improvements in prognoses and hospital survival. Although studies have provided insight into children's experiences with complex congenital heart disease after hospitalization, few have addressed parents' experiences providing care for infants with complex congenital heart disease who are discharged home with complex care needs after surgical palliation. OBJECTIVES: To describe the perceptions and lived experiences of mothers of infants who were discharged from the hospital after surgery for complex congenital heart disease but were then readmitted to the hospital. METHODS: Data collection and analysis for this pilot study were guided by grounded theory. From February through October 2017, interviews were conducted with 10 mothers about their experiences caring for their infants at home after surgery for complex congenital heart disease. RESULTS: Analyses led to development of 1 category, "having to be the one," which had 3 properties: having no choice but to provide complex care at home, handling unexpected roles, and grappling with the possibility of death. CONCLUSIONS: The category of "having to be the one" highlighted mothers' experiences providing medicalized care at home to their infants after complex cardiac surgery while managing other responsibilities, such as employment, busy households, and parenting other school-age children. The role of the caregiver is vital but demanding. Mothers' caregiving at home may be enhanced by nursing interventions such as routine screening for infant distress plus assessment for alterations in family coping or relational challenges that threaten family function.

Contenção mecânica de idosos na atenção domiciliar: revisão de literatura / Mechanical restriction of older adults in domiciliary attention: literature review

Objetivos: Identificar na literatura publicações que abordem o uso de contenção mecânica na atenção domiciliar. Métodos: Revisão integrativa da literatura realizadas nas bases de dados MEDLINE, LILACS, CINAHL e SCOPUS, no período de 2008 a 2018. Resultados: As prevalências de contenção física variavam entre 20% a 40%, a alta variação ser refere as distintas metodologias e legislações vigentes quanto à pratica de contenção física. A grade lateral é a contenção mais comum e as razões mais citadas para conter foram segurança do paciente, para evitar quedas e pedido dos familiares. Identificou- -se que 16,7% dos profissionais afirmaram ter aconselhado aos cuidadores o uso de restrições e, que 93% destes não souberam identificar alternativas para esta prática. Conclusão: Recomenda-se orientações específicas ao cuidado domiciliar centradas nas famílias, evitando a transposição inadequada do meio hospitalar para o âmbito domiciliar, e disseminar intervenções alternativas à contenção. (AU)

Objectives: To identify in the literature publications that address the use of mechanical restriction in home care. Methods: Integrative literature review carried out in the MEDLINE, LILACS, CINAHL and SCOPUS data bases from 2008 to 2018. Results: The prevalence of physical restraint ranged from 20% to 40%, the high variability refers to the different methodologies and legislation regarding the practice of physical restraint. The lateral grid is the most common containment and the most cited reasons to contain were patients afety, to avoid falls and family members' request. It was identified that 16.7% of the professionals stated that they advised caregivers to use restrictions, and that 93% of them did not know how to identify alternatives for this practice. Conclusion: Specific guidelines for household-centered care are recommended, avoiding the inadequate transposition of the hospital environment into the home, and disseminating alternative interventions to containment. (AU)