BACKGROUND: The clinical component of medical education for students and resident doctors in Japan occurs almost entirely in the hospital setting. Because of this inpatient focus, graduate medical education clinical training often fails to expose physicians-in-training to the challenges that patients may face in the outpatient or home setting. This is a descriptive study in which we explore what participating students and resident doctors learned through our brief home-based teaching experience.
METHODS: From June 2016 to December 2017, attending physicians on the internal medicine service had medical students and resident doctors accompany them on home care visits. Participants were selected by convenience sampling based on their rotation availability. After the home visit and the interactive discussion, the participants were expected to prepare a reflective journal on their experience and learning. Thematic analysis was applied, and key themes were developed based on Kolb's ELT (Experiential learning theory). Three months after completion of the experience, semi-structured interviews were individually conducted assessing participants' self-perceived changes.
RESULTS: Thirty-two medical students(10) or residents(22)participated in a home visit. Thirty of these learners were able to complete a reflective journal. Using thematic analysis, we identified 2 domains and 6 key themes from the participants' perceptions. Participants recognized the importance of patient-centered care, inter-professional collaboration of the home care team, and reconceptualized the meaning of medical practice and their professional identity as a doctor. Three month post-experience interviews were completed on 12 of the original 30 participants who completed the reflective journal. 2 domains and 6 key themes from the residents' experiences and perceptions were generated. The participants reported an increased attention to the daily lives and social situations of their hospitalized patients, and an extension of their focus beyond the clinical medical treatment of the patient.
CONCLUSION: The experience of a brief visit to a patient's home is a novel educational approach that may potentially provide medical students and resident doctors with opportunities to learn about out-of-hospital, patient-centered, home-based medical care.
Objectives: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
AIMS: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.
BACKGROUND: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.
DESIGN: A pre-experimental design with a one-group pre-test/posttests measurements.
METHODS: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.
RESULTS: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).
CONCLUSION: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.
IMPACT: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care. This article is protected by copyright. All rights reserved.
OBJECTIVE: Patients with chronic heart failure (CHF) may be insufficiently treated pharmacologically. Recently, we presented a person-centred integrated Palliative advanced homecaRE and heart FailurE caRe (PREFER) strategy and compared it with usual care (control). Patients managed according to PREFER had improved health-related quality of life and markedly reduced hospitalisations compared with the control group. We hypothesised that these improvements may have been partly due to better drug treatments within the PREFER strategy. Thus, our aim in this study was to explore the management of drug treatments in the PREFER group compared with the control group.
METHODS: Doses and numbers of drugs and the number of patients receiving the target doses based on current guidelines were measured and compared between the groups at the start and finish of the study.
RESULTS: The percentages of ACE inhibitors (ACEIs) or mineralocorticoid receptor antagonists (MRAs) increased, while loop diuretics decreased in the PREFER arm during the study, although the differences were not significant. Beta-receptor blockers (BBs) decreased somewhat in both groups. The number of patients treated with MRAs differed the most between groups, and increased from 10 (28%) to 15 (48%) in the PREFER arm compared with 13 (35%) vs 13 (39%) in the control group. The change in patients receiving full target doses (+8 vs. +1) of the ACEIs/angiotensin receptor blockers, BBs and MRAs were significantly higher (p=0009) in the PREFER arm than in the control arm.
CONCLUSIONS: Person-centred integrated care of patients with severe CHF was associated with increased evidence-based drug treatments, especially MRAs.
CLINICAL TRIAL NUMBER: NCT01304381.
Home care medicine is a platform for providing supportive care for end-stage cancers. However, for undefined reasons, patients with hematological tumors (HTs) often fail to receive opportunities for home care. We, therefore, sought to delineate the clinical differences between solid tumors (STs) and HTs and to determine whether home care is effective for patients with HTs, as well as those with STs. We retrospectively analyzed the treatments, prognosis, and places of death of patients with STs (n = 99) and HTs (n = 20) who received palliative home care in our clinic and subsequently died between May 2016 and May 2018. Patients with HTs commonly required intravenous antibiotics, platelet transfusion, and red blood cell transfusion, while patients with STs tended to more frequently require the use of opioids. Importantly, there were no significant differences between the cohorts with respect to survival time and frequency of emergent visits to patients after their referral to us. Furthermore, most patients in both groups died at home. More than 50% of patients were not admitted to hospitals during our follow-up. Collectively, while therapeutic approaches sometimes differ, this study provides clinical evidence that palliative home care can be feasible even for patients with HTs.
PURPOSE: The aim of the study was to evaluate the feasibility and the potential effects of the Haematological Home Care (HHC) programme for acute leukaemia (AL) patients, either in active chemotherapy or in the terminal phase of disease.
METHODS: We retrospectively assessed a group of AL patients assisted at home in terms of number of hospitalisations, accesses to emergency department and place of death. We also used historical data to evaluate potential effects of HHC.
RESULTS: The study group consisted of 44 patients, 36 of whom (82%) required palliative treatment, and eight (18%) had ongoing active chemotherapy. The mean number of hospitalisations was 0.64 (range 0-7) per patient, and the number of emergency department (ED) visits was 0.82 (range 0-4) per patient. Place of death was at home for 51.4% of patients and in hospital for 40.5%. Considering a historical group of 17 patients assisted at home the rate of hospitalisations and ED visits were 2.53 (range 0-9) and one (range 0-3), respectively. Place of death was home and hospital in 6% and 65%, respectively.
CONCLUSIONS: Haematological Home Care for AL patients is feasible and has potential positive effects in terms rate of hospitalisations and place of death.
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective.
AIM: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care.
DESIGN: A qualitative methodology was chosen.
SETTING: The unit of pediatric palliative care at the Hospital Niño Jesús (Madrid, Spain).
POPULATION: The inclusion criteria were: a) parents of children, irrespective of their diagnosis, b) integrated within the program of palliative care at the time of study, c) aged between 0-18 years, c) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included.
METHODS: Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed.
RESULTS: Three main themes were identified: a) The meaning of physical rehabilitation to parents, b) Physical rehabilitation as an opportunity for patients to stay in their home environment and c) Home-based physical rehabilitation as part of the families' social environment.
CONCLUSIONS: The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training.
CLINICAL REHABILITATION IMPACT: The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.
Les importantes évolutions démographiques et sociétales demandent que les soins palliatifs se développent au domicile des personnes malades. Les équipes mobiles, mal réparties sur le territoire, soutiennent la nécessité pour l'hôpital de se tourner vers la ville (HAD) et de participer à la coordination des soins. Celle-ci mobilise de nombreuses ressources et le médecin traitant y tient une place centrale. (R.A.).
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La présente évaluation, réalisée selon les principes méthodologiques de l'évaluation des technologies et des modes d'intervention en santé et en services sociaux, permet une analyse critique rigoureuse des pratiques organisationnelles et cliniques de soins palliatifs dans le but de soutenir la prise de décision. Elle vise deux grands objectifs : 1) Évaluer, sur la base des données probantes disponibles, l'efficacité et les effets négatifs des équipes interdisciplinaires sur les soins palliatifs de fin de vie comparativement à d'autres approches ; 2) Évaluer, d'après le point de vue d'acteurs clés, le contexte et le degré d'intégration du fonctionnement interdisciplinaire dans les équipes de soins offerts à domicile et en unité spécialisée du CSSS de Bordeaux-Cartierville-Saint-Laurent, centre affilié universitaire. Les soins de fin de vie ont été définis comme les soins palliatifs fournis en fin de vie à une personne dont le pronostic est d'un an ou moins. Nous avons procédé à la recherche d'essais cliniques randomisés et d'autres études avec groupe contrôle publiés entre 1995 et 2013. Pour ce faire, nous avons consulté huit bases de données électroniques, cinq conférences, 15 sites web, de la littérature grise et les listes de références des études incluses de 1995 à 2013. La qualité méthodologique des études qui ont satisfait les critères d'inclusion a été indépendamment évaluée et notée à l'aide de l'outil d'évaluation de la qualité "Quality Assessment Tool for Quantitative Studies". Les données pertinentes ont été extraites en fonction des lignes directrices recommandées et résumées de façon narrative.
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OBJECTIVE: Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.
METHOD: Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.
RESULTS: Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ ] = -0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [ß] = -0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.
SIGNIFICANCE OF RESULTS: Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.
BACKGROUND: There is a need for validated measures of cultural competency practices in home health and hospice care (HHHC).
OBJECTIVE: To establish the factor structure of the cultural competency items included in the agency-component of the 2007 public-use National Home and Hospice Care Survey file.
DATA SOURCE: We used weighted survey data from 1036 HHHC agencies.
RESEARCH DESIGN AND PARTICIPANTS: We used exploratory factor analyses to identify a preliminary factor structure, and then performed confirmatory factor analysis to provide further support for identified factor structure.
MEASURES: We examined 9 cultural competency items.
RESULTS: Exploratory factor analyses suggested an interpretable 2-factor solution: (1) the provision of mandatory cultural competency training; and (2) the provision of cultural competency communication practices. Each factor consisted of 3 items. The remaining 3 items did not load well on these factors. A similar, but more restrictive, confirmatory factor analysis model without cross-loadings supported the 2-factor model: (Equation is included in full-text article.)=9.50, P=0.30, root mean square error of approximation (RMSEA)=0.01, comparative fit index (CFI)=0.99, Tucker-Lewis Index (TLI)=0.99.
CONCLUSIONS: Two constructs with 3 items each appeared to be internally valid measures of cultural competency in this nationally representative survey of HHHC agencies: cultural competency training and cultural competency communication practices. These measures could be used by HHHC managers in quality improvement efforts and by policy makers in monitoring cultural competency practices.
The aim of this study was to gain an understanding of the experiences of families who care for older adults with non-cancer diseases at the end of their lives. The data accrued through in-depth interviews, analyzed using Giorgi's phenomenological method: caregiving burden; situational responsibility; consolation by support; and mourning for the deceased. In Korean culture, adult children had the responsibility of caring for their aged parents as a burden of caregiving and as a main motive for caregiving. Educational and psychological support programs for caregivers should aim to boost confidence, rather than merely focusing on their burden.
OBJECTIVE: The aim of this study was to enhance understanding about homecare workers providing care to people with dementia at end of life by exploring homecare workers' perceptions of challenges and the support they needed and sometimes received.
METHODS: Qualitative semi-structured interviews were conducted with 29 homecare workers and 13 homecare managers in England. Framework analysis was used to analyse the data.
FINDINGS: Four overarching challenges were identified: working with clients with dementia, including clients' sometimes unpredictable responses, communication difficulties, and mood changes; caring for the dying; conflict with family members; and working alone, which often left homecare workers at risk of exhaustion, fatigue, and a sense of isolation. When their work entailed high levels of emotion, such as a client's death or getting embroiled in a client's family conflict, they felt emotionally drained, under-prepared and overwhelmed. Supportive elements include receiving encouragement and learning from experienced peers and their feelings being acknowledged by managers at their employing homecare agency. Some workers were offered time off or encouraged to attend the client's funeral as a means of supporting the process of bereavement.
CONCLUSIONS: Peer and manager support are essential and effective in coping with work pressures. There is a need to develop models of effective support to alleviate staff's practical, emotional and interpersonal pressures. However, due to the isolating nature of homecare work, managers may not recognise early signs of their staff finding stress unmanageable and miss the opportunity to mitigate these negative effects.
BACKGROUND: Many terminally ill patients in Bosnia-Herzegovina (BiH) fail to receive needed medical attention and social support. In 2016 a primary healthcare centreer (PHCC) in Doboj (BiH) requested the methodological and technical support of a local partner (Fondacija fami) and the Geneva University Hospitals to address the needs of terminally ill patients living at home. In order to design acceptable, affordable and sustainable solutions, we involved patients and their families in exploring needs, barriers and available resources.
METHODS: We conducted interviews with 62 purposely selected patients using a semi-structured interview guide designed to elicit patients' experiences, needs and expectations. Both qualitative and quantitative analyses were conducted, using an inductive thematic approach.
RESULTS: While patients were aware that their illnesses were incurable, they were poorly informed about medical and social support resources available to them. Family members appeared to be patients' main source of support, and often suffered from exhaustion and financial strain. Patients expressed feelings of helplessness and lack of control over their health. They wanted more support from health professionals for pain and other symptom management, as well as for anxiety and depression. Patients who were bedridden or with reduced mobility expressed strong feelings of loneliness, social exclusion, and stigma from community members and - occasionally - from health workers.
CONCLUSIONS: Our findings suggest a wide gap between patients' end-of-life care needs and existing services. In order to address the medical, psychological and social needs of terminally ill patients, a multi-pronged approach is called for, including not only better symptom management through training of health professionals and improved access to medication and equipment, but also a coordinated inter-professional, inter-institutional and multi-stakeholder effort aimed at offering comprehensive medical, psycho-social, educational and spiritual support.
Background: The need for home care services for older adults is gradually increasing in many countries. In the past, Japanese older adults typically died at home, but the current trend is toward hospital death. Few studies in Japan have explored peoples' viewpoint on home care, however, especially in rural areas. Therefore, we clarified Japanese rural residents' views of terminal home care.
Methods: We conducted a qualitative study of 152 participants who are current or potential caregivers of older adults and who live in the city of Unnan, Shimane Prefecture, which has a large elderly population. An educational forum consisting of presentations and a workshop were used to provide information on terminal home care to rural citizens. A thematic analysis of the workshop's content regarding participants' perceived difficulties related to terminal home care was conducted.
Results: Participants described four themes regarding problems of terminal home care: medical aspects, care burden, health care system, and patient problems. Besides the need for more knowledge of the medical and health system, participants were anxious about the burden of care on their lives and the perceptions of others in their community.
Conclusion: This study is the first report on Japanese rural citizens' views of terminal home care. The findings suggest that the limited use of home care in Japanese rural areas might relate to a lack of understanding of terminal home care and health care systems, a substantial care burden for caregivers, and conflicts between patients and families.
BACKGROUND:: A key aspect to the provision of palliative care is maintaining the dignity of the individual being cared for. Nurses working in the community setting need knowledge and skills to meet the needs of individuals who need palliative care and their families. Dignity Care Intervention Ireland is a community-based pilot project designed to implement a dignity care intervention for individuals with a life-limiting condition living in their own home. As part of the overall intervention, an education programme was developed for nurses working in the community.
METHOD:: Completion of a locally-designed questionnaire pre- and post-education.
RESULTS:: Nurses working in the community setting welcomed and highly valued the Dignity Care Intervention Ireland education programme. There was an overall improvement in the understanding of palliative care for both groups and improved understanding of the principles of palliative care, with self-evaluated competence to apply these principles in daily clinical practice.
CONCLUSION:: The importance of education about palliative care to support the delivery of dignity-preserving care cannot be underestimated. Ensuring nurses have the requisite knowledge will enhance future practice development and subsequently improve care for patients with life-limiting conditions and their families.
Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home-based end-of-life care programme in Ontario, Canada from 2005 to 2016, we build a two-part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home-based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home-based end-of-life patients. Decision-makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.
Objective: This study identified the predictors of incident loneliness in a group of seriously ill older adults (aged 65+) receiving home care.
METHOD: Existing data collected with the Resident Assessment Instrument for Home Care (RAI-HC) were utilized. A cohort of clients (N = 2,499) with two RAI-HC assessments and no self-reported loneliness at time 1 were included. Self-reported loneliness, upon reassessment, was the outcome of interest. Clients with a prognosis of less than six months or severe health instability were included.
RESULTS: The average length of time between assessments was 5.9 months (standard deviation = 4.10). During that time, 7.8% (n = 181) of the sample developed loneliness. In a multivariate regression model, worsening symptoms of depression, a decline in social activities, and not living with a primary caregiver all increased the risk of loneliness.
SIGNIFICANCE OF RESULTS: These results highlight how changes in psychosocial factors over time can contribute to loneliness, which can inform clinicians as they seek to identify those who may be at risk for loneliness.
BACKGROUND: Studies have shown positive clinical outcomes of specialist palliative care for end-stage heart failure patients, but cost-effectiveness evaluation is lacking.
AIM: To examine the cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure patients as compared to the customary palliative care service.
DESIGN: A cost-effectiveness analysis was conducted alongside a randomized controlled trial (Trial number: NCT02086305). The costs included pre-program training, intervention, and hospital use. Quality of life was measured using SF-6D.
SETTING/PARTICIPANTS: The study took place in three hospitals in Hong Kong. The inclusion criteria were meeting clinical indicators for end-stage heart failure patients including clinician-judged last year of life, discharged to home within the service area, and palliative care referral accepted. A total of 84 subjects (study = 43, control = 41) were recruited.
RESULTS: When the study group was compared to the control group, the net incremental quality-adjusted life years gain was 0.0012 (28 days)/0.0077 (84 days) and the net incremental costs per case was -HK$7935 (28 days)/-HK$26,084 (84 days). The probability of being cost-effective was 85% (28 days)/100% (84 days) based on the cost-effectiveness thresholds recommended both by National Institute for Health and Clinical Excellence (£20,000/quality-adjusted life years) and World Health Organization (Hong Kong gross domestic product/capita in 2015, HK$328117).
CONCLUSION: Results suggest that a transitional home-based palliative care program is more cost-effective than customary palliative care service. Limitations of the study include small sample size, study confined to one city, clinic consultation costs, and societal costs including patient costs and unpaid care-giving costs were not included.