Users' views on hospital and home care for acute illness in childhood

This mainly qualitative study compared 40 families' experience of hospital and home care. This is one aspect of a randomised, controlled trial, which aimed to evaluate the clinical and cost effectiveness of a paediatric hospital at home service (HAH) for acute illness in children. This paper builds upon previous work that has aimed to examine parents' and children's views as service users. Forty families from a larger sample population took part in structured interviews. Eleven children aged 5 to 12 years took part in semistructured interviews. A drawing technique was the chosen method of augmentation in the children's interviews. Research findings showed that HAH is an acceptable alternative to hospital care where there are essentially nursing needs. Thirty-six (90%) parents and seven children stated a clear preference for HAH. The parents' preference was based on a perception that their child's illness wasn't serious or life threatening and therefore could be managed at home with appropriate support from health professionals. The social and financial costs of hospital care compared with HAH were the other main drivers, rather than a comparison of the quality of nursing care of their child.     

Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan

There is a worldwide common preference for dying at home. However, death at home does not come without significant challenges and potential consequences for families. Given the interactive nature of decisions regarding the place of death, the family's perspective is important and needs to be investigated. The purposes of this study were to compare (1) Taiwanese terminally ill cancer patients' and their family caregivers' preferences for the patient's place of death; and (2) important factors that are considered in choosing the preferred place of death from both points of view. A total of 617 dyads of terminally ill cancer patients and their family caregivers were surveyed. The majority of both terminally ill cancer patients and their family caregivers preferred to die at home (61.0% and 56.9%, respectively). A higher proportion of the family caregivers indicated a preference for hospital death for the patients. There was a moderate association between the two respondents in the preferences of place of death. Results underscore discrepancies between patients and their families in the importance given to cultural concerns, quality of health care, worries of being a burden to others, lack of availability of families, relationships with health care providers, and being surrounded by the home environment. Effective interventions need to be developed which can lighten the caregiving burden and help families retain dying patients at home, avoid unnecessary re-hospitalizations and unfavorable hospital deaths, and improve accordance with the patient's wishes.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

The home caregiver in Betim/MG

This is a qualitative study about the care provided by "caregivers" enrolled in the Home Care Program in Betim, Minas Gerais. Interviews were held during home visits in order to identify characteristics of home care providers, analyze their perception about health care, verify factors which interfere in home care and relationships which are established between caregiver/person cared for/other family members. Discourse analysis (Fiorin, 1993) was used to build the empirical categories which revealed that most of the caregivers are family members, women, average age of 42 years, limited schooling, mostly housewives. The subjects sampled reported that the act of caring involves technique, duty and dedication. They referred to financial difficulties, physical and emotional stress. The relationships established during care involved feelings of pleasure, satisfaction and helplessness in the face of the needs and sufferings of the person cared for. The authors concluded that home care fosters more humane care, but requires technical guidance and emotional training for the caregivers and support from the health institution.     

Need satisfaction in terminal care settings

Research comparing hospice and conventional programs of care for the terminally ill has identified few measurable differences in the care provided to patients and their families. Nonetheless, hospice recipients frequently express a higher level of satisfaction with their program of care. This study compared the ability of hospice and conventional care settings to meet the basic emotional needs of families during a member's dying and death from cancer. In addition, the relationship of basic needs satisfaction, perceptions about the nurse, and overall satisfaction with the program of care were explored. One hundred bereaved familial care givers completed a mail questionnaire concerning their perceptions of care at the site of a family member's death. The sites were (1) the home, with care provided by a Medicare certified, community-based hospice program: (2) a hospital affiliated with a Medicare certified, community-based hospice program; (3) a hospital with its own hospice program; and (4) a conventional (non-hospice) hospital. Analyses of quantitative data supported two hypotheses about significant differences between hospice and conventional care. The conventional care group demonstrated the lowest levels of basic needs satisfaction, satisfaction with the psycho-social support of the nurse, and overall program satisfaction. As predicted, overall satisfaction with care was consistent across hospice groups. However, home hospice care provided the highest quality of basic needs satisfaction and the highest level of satisfaction with the nurse. Significant Pearson correlations supported the hypothesis that overall satisfaction is negatively related to unmet basic needs (r = -0.69) and positively related to the psycho-social support received from nurses (r = 0.73).(ABSTRACT TRUNCATED AT 250 WORDS)     

Home care before and after hospitalization for acute myocardial infarction in Alberta, Canada

Home care services are provided to about 10% of those admitted to hospital for acute myocardial infarction and about 20% of those discharged from hospital. The use of home care in patients with an acute myocardial infarction is growing in Alberta over the brief time span of this four year study. Those that received home care prior to a hospitalization for acute myocardial infarction were "old and frail" with a high mortality rate during and after hospitalization. The provision of home care after hospitalization selected those patients that stay in hospital longer and required more hospital care. BACKGROUND: The use of home care before and after hospitalization for acute myocardial infarction is described. METHODS: Hospital discharge abstracts were used to identify patients hospitalized in alberta, canada for acute myocardial infarction which were then linked to home care administrative data. RESULTS: There were 12,648 patients with acute myocardial infarction from April 1, 1995 until March 31, 1999. Home care within 60 days prior to hospitalization was provided for 8.7% of patients with acute myocardial infarctions (n = 1097) which significantly (p = 0.023) increased from 7.6% in the fiscal year 1995/6 to 9.5% in the fiscal year 1998/9. Home care within 60 days after hospitalization was provided to 16.4% of patients with acute myocardial infarctions (n = 2076) which significantly (p < 0.000) increased from 14.1% in the fiscal year 1995/6 to 18.1% in fiscal year 1998/9. Recipients of home care were significantly older, had more comorbidities, and greater severity of illness, but were less likely to undergo coronary artery revascularization during hospitalization. After multivariate adjustment, length of hospital stay, 60 day re-admissions, and mortality were higher in those receiving home care post hospitalization. Nearly half of those receiving home care prior to hospitalization died within one year. 80% of those receiving home care prior to admission also received home care services after hospitalization. CONCLUSION: Those patients who received home care prior to a hospitalization for acute myocardial infarction were "old and frail" with a high mortality rate during and after hospitalization. The provision of home care after hospitalization selected those patients that stay in hospital longer and required more hospital care.     

Confronting death: perceptions of a good death in adults with lung cancer

Investigations regarding patients' concerns about death have focused on the importance of autonomy, resolution of concerns, family relationships, and religiosity, and relied on data from physicians, nurses, family members, and healthy older adults. Few studies have focused on patients with diseases that have short-term survival rates. This study examined lung cancer patients' perceptions of a good death. One hundred lung cancer patients answered open-ended questions about what a good death was and completed measures assessing coping, spirituality, religious coping, and life satisfaction. Content analysis revealed 4 themes describing a good death: (a) during sleep, (b) pain-free, (c) peaceful, and (d) quick. These findings have implications for those caring for terminally ill patients as the 4 themes differ from those derived from studies of more heterogeneous patients, their families, and health care providers.     

Paediatric spinal fusion surgery and the transition to home‐based care: provider expectations and carer experiences

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health‐care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at‐home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi‐structured in‐depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at‐home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home‐based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at‐home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post‐discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre‐surgical, surgical and at‐home recovery phases.     

Themes and trends in nursing research on cancer patients' families

The purpose of this study was to identify trends in nursing research on cancer patients' families published within the past 12 years (1996-September 2007, present) and examine their research themes. Five core categories were identified: 1) cancer nursing at home, 2) terminal care in a general ward, 3) family's experience in a terminal period and after bereavement, 4) family's experience and care during treatment, and 5) family systems. Findings showed that the following areas of research are being conducted: nursing research on a variety of therapies and care environments, research on nurses' awareness of the families of cancer patients and how this affects treatment, interventional research on how to implement study findings, and research activities based on family nursing.     

The use of home care in terminal cancer

In order to identify factors associated with the use of home care services and satisfaction with those services, interviews were conducted with 72 percent of the surviving relatives and 92 percent of the physicians of a random sample of 133 patients from the Rochester, New York, area who had died of cancer and who had been diagnosed at least two weeks before death. These interviews included a self-administered attitude questionnaire from which ten attitude-scale scores were derived. Forty-one percent of the sample had used organized home care services, almost all under a home-hospice program. In comparison with nonusers, home care users tended to be younger, married, to have a longer terminal care period, and to spend more of it at home. Relatives of patients who had used home care services, in comparison with relatives of nonusers, were less satisfied with the availability of care and reported that the patient had experienced more pain. This study also highlights problems in communication, particularly between the physician and the patients and their families, and the effects of home care on the families, especially the primary care-giver. In order for home care and home death to be viable options for a larger number of terminal cancer patients, family members need to be assured of around-the-clock availability of care, adequate pain control, and respite care to provide temporary relief from the burden of home care.     

"We don't have a back-up plan": an exploration of family contingency planning for emergencies following stroke

Little research has explored emergency preparedness among families coping with stroke. In this longitudinal qualitative study, we explored contingency caregiving planning by interviewing (N?=?18) family caregivers providing care for a stroke survivor at home during the first 6 months post-discharge from the hospital. Emergent themes showed most families did not have a concrete "back-up plan" for a crisis or disaster situation involving the primary caregiver being unable to provide care. Furthermore, they assumed formal respite services or long-term care would be available should the need arise. Despite increased awareness over time, most caregivers had not devised contingency plans at 6 months.     

Transitions of older adults to home care

To discover the process of admission and transition of older adults to home care following hospital discharge, or during periods of illness, ethnographic methodology was used to explore the experience of 65 participants in the "culture" of home care: patients, families, nurses, home care staff, and discharge planners. Two themes resulting from ethnographic analysis are presented: identification of patients and needs, and transfer of information. Support from family and friends was an essential addition to referral by discharge planners, physicians, and casefinding in facilitating transition to home care. Accurate, timely patient information was found to expedite home nursing assessment and insure continuity of care.     

Deaths in France: Characteristics,place of death,hospitalisations and use of palliative care during the year before death

Aim

Only limited data are available concerning the diseases managed and the hospital pathway before death. The aim of this study was to describe diseases, hospitalisations, and use of palliative care one year before death as well as place of death in France.

Moving from place to place in the last year of life: A qualitative study identifying care setting transition issues and solutions in Ontario

Moving from one care setting to another is common as death nears. Many concerns exist over these end‐of‐life (EOL) care setting transitions, including low‐quality moves as mistakes and other mishaps can occur. Delayed or denied moves are also problematic, such as a move out of hospital for dying inpatients who want to spend their last hours or days at home. The aim of the study was to identify current issues or problems with care setting transitions during the last year of life as well as potential or actual solutions for these problems. A grounded theory analysis approach was used based on interviews with 38 key informants who represent a wide range of healthcare providers, healthcare managers, government representatives, lawyers, healthcare recipients and their family/friends across Ontario in 2016. Three interrelated themes were revealed: (a) communication complexities, (b) care planning and coordination gaps and (c) health system reform needs. Six solutions were highlighted, with these designed to prevent care setting transition issues and monitor care setting transitions for continued improvements.     

Critical elements of transition from NICU to home and follow-up.

The continued expansion of NICU's and the subsequent increase in the survival rate of infants and children with special health care needs warrants an examination of the variables that contribute to a successful transition from hospital to home. While best practices have been identified for both families and professionals, many of the 1150 NICU's across the country are not in a position to implement such practices, primarily because of fiscal and time constraints. This article presents an overview of a project designed to identify and facilitate critical elements of transition that can be implemented at minimum cost for all families transitioning from hospital to home care in Connecticut. The identified elements include: (a) the use of a parent to parent support network, (b) the use of a standard discharge summary form to enhance communication among family and care providers, (c) the use of a continuing care plan to facilitate the accessibility of community services, and (d), the identification of on-going training activities for both families and providers.     

Health policy in transition: terminal care and site of death in Japan

OBJECTIVES: In Japan, hospitals have replaced homes as the predominant site of death, especially for the elderly. Site of death is a reliable indicator of where older people receive care before they die. We conducted a population-based study to identify the factors that determine site of death in a typical rural area in Japan. METHODS: Study subjects were residents of Kawakami town, aged 70 years or older, who died during 1981 and 1990. Death certificates provided information on age, gender, cause of death, duration of illness before death, family members, family occupation, and site of death. RESULTS: Among 455 subjects, 52.7% died at home, while 47.3% died in hospital. Multiple logistic regression analyses indicated that subjects with cancer were 6.1 times more likely to die in hospitals than those with other diseases. Subjects who died in their seventies were 2.3 times more likely to die in hospital than older subjects. Members of non-farming families were 1.7 times more likely to die in hospital than members of farming families. Gender, duration of illness, and the presence of spouse or children in the household were not significantly related to site of death according to multivariate analyses, although trends did exist. CONCLUSION: This case study illustrates the importance of developing geriatric care systems in Japan, utilizing alternatives to hospitals, such as nursing homes and formal home care. This is particularly true for patients with cancer. As the older population rapidly increases in Japan, the need for alternatives in geriatric care grows more critical.     

Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for children

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.     

<Emphasis Type="Italic">Care Coordination: Empowering Families</Emphasis>, a Promising Practice to Facilitate Medical Home Use Among Children and Youth with Special Health Care Needs

Introduction This paper describes the care coordination training program and results of an evaluation from its pilot in seven states. Despite the importance of practice-based care coordination, only 42.3% of children with special health care needs (CYSHCN) met all needed components of care coordination as defined by the Maternal Child Health Bureau. Recognizing that children with medically complex conditions often have lower rates of achieving care coordination within a medical home, the Region 4 Midwest Genetics Collaborative worked with families to develop a training to empower families in care coordination. The Care Coordination: Empowering Families(CCEF) training provides families with the knowledge, tools, and resources to engage with health, education and family support systems. This article gives an overview of the training and comprehensive evaluation. Methods Participants were family caregivers of children with genetic conditions and other special health care needs recruited in one of seven pilot states. Evaluation data were collected from 190 participants prior to and immediately following the training. An additional follow-up assessment one full year post training was completed by 80 participants (a response rate of 42%). Results Families who attended the training report being the primary source of care coordination for their children and 83.7% see their role in their child’s healthcare changing as a result of the training. The findings suggest that peer support and communication with providers increased as a result of the training over the course of the study. The data suggest that the training impacted how the family interacts with the child’s doctor, including initiating conversations to prepare their child for transition to adult health care. Further, families report system-level improvements 1 year later compared to the pre-training assessment. Discussion CCEF training is a promising practice for facilitating medical home use among CYSHCN.     

Family food practices: relationships,materiality and the everyday at the end of life

This article draws on data from a research project that combined participant observation with in‐depth interviews to explore family relationships and experiences of everyday life during life‐threatening illness. In it I suggest that death has often been theorised in ways that make its ‘mundane’ practices less discernible. As a means to foreground the everyday, and to demonstrate its importance to the study of dying, this article explores the (re)negotiation of food and eating in families facing the end of life. Three themes that emerged from the study's broader focus on family life are discussed: ‘food talk’ and making sense of illness; food, family and identity; and food ‘fights’. Together the findings illustrate the material, social and symbolic ways in which food acts relationally in the context of dying, extending conceptual work on materiality in death studies in novel directions. The article also contributes new empirical insights to a limited sociological literature on food, families and terminal illness, building on work that theorises the entanglements of materiality, food, bodies and care. The article concludes by highlighting the analytical value of everyday materialities such as food practices for future research on dying as a relational experience.