Home Care Family Research Articles

Rational quality and cost of critical care systems are more important than individual considerations: a view from India.

Critical or Intensive Care Units (CCU/ICUs) play a crucial role in treating critically ill patients, but they contribute significantly to healthcare costs. In India and many other resource-limited countries, private ICU treatment is largely unaffordable for the poor and even a section of the middle class, who are not substantially insured. It is essential for all stakeholders involved in critical care to prioritize quality and cost-effectiveness. To ensure quality assurance, legally binding quality standards must be developed collaboratively by the government, professional bodies, hospital administrators, and domain experts. Regulatory benchmarks relevant to different types of ICUs can enforce adherence and transparency. Telemedicine, referral systems, and interhospital transport need improvement. Addressing attrition rates among staff and greater empowerment of formally qualified registered intensivists in the private hospitals can enhance outcomes and cost control. Long-term post-ICU recovery care is often unaffordable or unavailable in many parts of the world. Engaging families in home care and providing training in basic caregiving tasks can improve outcomes and reduce costs. In areas with limited access to qualified professionals, training of lay community caregivers and practitioners can be beneficial. Multidisciplinary post-ICU clinics and necessary telephonic handholding can support home-based patients and their families. Standardizing prices of essential necessities and promoting rational practices are crucial. System-wide efforts and novel approaches like decentralization of critical care services are necessary to ensure holistic quality and cost-effectiveness, particularly in densely populated countries with resource limitations. These innovations will not only improve care but also enhance preparedness for future pandemics.

Health education as a strategy to promote the development of the prematurely born child: perception of caregivers

The birth of a premature baby can cause impairment in the child's development, requiring a critical analysis from the health professional of their performance in the care directed to this public and their family. There is lack of scientific literature focused on the promotion of functional development of premature infants, making necessary the use of technologies that help the family in home care. Objective: To understand the knowledge and practices of caregivers of prematurely children, about the functional development mediated by an intervention with an educational technology. This was a qualitative, descriptive, exploratory and intervention research, with 11 mothers of prematurely born children, followed up by a service in a city of Minas Gerais. Performed in three steps. The first still in the follow up service, the second and third consisted of home visits. The analysis originated the categories “Expectations related to the educational material”, “Experiences with the educational material” and “Changes in care aroused by the appropriation of the educational material”. The work of the health educator articulated with an educational technology focused on promoting the child development of premature children contributes to the resignification of knowledge and everyday practices of care directed to this public.

Is telemonitoring useful for supporting persons with consciousness disorders and caregivers? A preliminary observational study in a real-life population

Introduction Preliminary evidences showed that telemedicine may allow a reduction of costs and an enhancement of patients’ satisfaction and quality of life (QoL), with the same effectiveness of conventional methods of healthcare delivery. Literature is quite absent in relation to the use of telemedicine for patients with disorders of consciousness (DoC) whose management is delegated almost entirely to the family. In order to promote an alternative setting to manage persons affected by DoC, also supporting their families, a pilot project was designed to test the feasibility of home-care assistance based on a system of telemonitoring. Methods In total, 11 patients were supported by a telemonitoring system via a workstation installed at the patients’ homes. All patients underwent a clinical and functional evaluation at enrolment, after two months, after six months and at the end of the project, after 12 months by means of clinical scales (Glasgow Coma Scale, Rancho Los Amigos Levels of Cognitive Functioning Scale, Glasgow Outcome Scale, Disability Rating Scale), while the World Health Organization (WHO) QoL, the Hamilton Depression Rating Scale, the Hamilton Anxiety Rating Scale and a satisfaction score were completed by caregivers. Results Patients’ scores at the clinical scales did not show statistically significant differences from T0 to T3. A trend toward the improvement of caregivers’ QoL, anxiety and depression, as well as a high degree of satisfaction with regard to the intervention, were reported. The economic evaluation showed an average cost/day for a patient of about €70. Discussion Preliminary data suggest that the use of telemonitoring services in the management of persons affected by DoC is feasible and well accepted by caregivers, with a potential positive effect on their mood and QoL. Therefore, telemonitoring should be considered in the management of DoC patients to favour discharge from acute care and to support families in home care.

Zaitakukaigo ni okeru Koreisha to Kazoku: Toshi to Chiho no Hikakubunseki (Elderly People and Families in Home Care: A Comparative Analysis of Cities and Provincial Areas in Japan)

In the ten years following the introduction of the Long-term Care Insurance (LTCI) system (kaigo hoken seido), the amount of elderly care services within Japan has increased dramatically. For example, the number of users of home-help services (hōmon kaigo) increased from 518,000 in 2001 to 1,154,000 in 2009, and in Japan, we are living in an age in which 4.1% of those aged 65 years or over are using home-help services. Japan has been called a conservative regime, a mixture of liberal, conservative and social democratic regimes, or an East Asian regime in international comparative studies on welfare states. Whatever the case, the fact that the family plays a major role in providing welfare in Japan is undeniable (Saito et al. 2010: 43–45). The introduction of the LTCI system is highly significant for Japanese society, which did not have universal elderly care until the 21st century. How have the conditions of elderly care changed? How have people’s awareness changed? How has the role of the family changed? An analysis of elderly care conditions provides us with an important benchmark when seeking to understand the characteristics and recent trends of the welfare state in Japan.

A experiência da família no cuidado domiciliário ao doente com câncer: uma revisão integrativa

A inserção da família na assistência é um desafio, com o aumento da cronicidade é uma realidade observada especialmente nos cuidados domiciliários. Este estudo objetivou buscar e avaliar evidências científicas sobre a experiência da família no cuidado domiciliário ao adulto com câncer. Revisão integrativa de literatura, realizada nas bases LILACS, BDENF, SciELO, MEDLINE utilizando as palavras-chave “família”, “neoplasia“ OR “câncer” e “cuidado domiciliar” OR “assistência domiciliar”. Critérios para seleção: publicações indexadas nas bases de dados escolhidas e palavras-chave selecionadas, publicadas até dezembro 2010, com textos completos disponíveis. Foram identificadas 16 publicações e possibilitaram analisar a experiência da família no cuidado domiciliário, mostrando sua crescente inclusão e busca por apoio. A família encara o câncer como ameaça a vida, o impacto do cuidado e a importância da espiritualidade no enfrentamento foram apontados. Portanto, prover suporte a família é fundamental para melhorar a qualidade de vida dos pacientes com câncer. Descritores: Assistência domiciliar; Neoplasias; Família; Enfermagem familiar.

Needs for Home Care Nursing in the Vulnerable Elderly

The purpose of this study was to determine the subjects' health status according to the needs of visiting health and the function of the family in home care nursing. The data collection period was from 07/01/04 to 10/31/04 and the subjects were 488 of those above 60 years of age staying at home or living alone who registered at a visiting health service of public health center at an urban area in Korea. This survey was carried out by visiting health nurses and participation was agreed on by the elderly people. The extent of the subjects' total health status to the general characteristics had differences according to the age, sex, monthly income, perceived health status, known functional disorder, and yes-or-no for disease. At all health status domains, visiting health need care in the group I was very lower than one in II, III, or IV groups. Also the severe dysfunctional family was lower than lightly dysfunctional family and normal functional family in all health status domains. Nurses must provide their characteristics considered nursing intervention for the elderly who have high visiting health needs and severe dysfunctional family with vulnerable health care.

Families in home care--a resource or a burden? District nurses' beliefs.

Caring for families in home care is a growing part of Swedish district nurses' professional work. District nurses' facilitative and constraining beliefs about families guide the extent to which families are acknowledged and engaged in the care. The aim of the study was to explore district nurses' beliefs about families in home care. Explorative, descriptive. Five district nurses participated in focus group interviews on three separate occasions. Each interview lasted approximately 90 minutes, was audio taped and transcribed verbatim. A thematic content analysis was used for analyses of the data. The result revealed two underpinning beliefs held by the district nurses towards families in home care: families are a resource and Families are a burden. Families could be a resource for the patient, for the other family members as well as for the district nurses themselves. Families could be a resource for the patient both practically and emotionally by e.g. being present and listening. Being open in communication with other family members and district nurses was also considered as a resource. The district nurses considered families as a burden when they were experienced as demanding in various ways, for example, when family members did not act in a way that pleased the district nurses or when family members showed their suffering. This study highlight some facilitating and constraining beliefs held by district nurses: families can be both a resource and a burden. It is important that district nurses are aware of what beliefs they hold as their beliefs guide their actions towards the families.

Quality management and quality assurance in haemophilia care: a model at the Bonn haemophilia centre.

The severe clotting defects associated with the diagnosis of severe haemophilia A and B require a quality management and quality assurance system designed to avoid both bleeding sequelae (such as damaged joints) through early on-demand or prophylactic treatment in a home-care setting, and side-effects such as infectious diseases (hepatitis A-G and human immunodeficiency virus), allergic reactions, haemolysis and if possible inhibitor formation, by using highly purified, virus-inactivated or recombinant products in which the factor VIII and IX proteins are as natural as possible. As the intravenous injection of the required clotting factor is entrusted to the patients in home treatment, the haemophilia centre has to check treatment protocols and, when necessary, joint and muscle status. In addition, it is imperative to ensure the safety of the product, and checks must be carried out to make sure that batch numbers are recalled as soon as possible if side-effects are observed. These are the reasons for several Acts of Parliament in Germany requiring special treatments and regular checks (the Disabled Act, recommendations by the German Medical Council, the Transfusion Act). Thus, at the haemophilia centre in Bonn we have established a special quality management and quality assurance system taking into account the great number of patients (> 800), the often considerable distance between the centre and the patient, and the aforementioned regulations and laws. Quality management involves dealing with daily practicalities such as 24-h availability of a physician, medical technologist and nurse, careful instruction of patient and family in home care, genetic counselling, regular laboratory tests (especially recovery time, half-life, inhibitors and gene defects, clinical chemistry and serology) and clinical investigations (especially joint and muscle status). It also includes co-operation with family doctors and different departments at our university hospital (e.g. orthopaedic, microbiology), daily conferences with staff, information for nursery schools, schools, training institutions and/or the workplace in case of emergency, and cooperation with German haemophilia foundations. For quality assurance, several self-controlling systems are in place, such as distribution of concentrate, laboratory data, treatment protocols, joint and muscle status and bleeding tendencies. All these and more are double-checked and interactive, controlling data and activities with the help of EDP. Exceptional staff motivation and patient compliance are important for this quality system.

Childhood Hospitalization for Psychosocial Reasons: The Case of Gastroenteritis

Nonmedical factors are often important considerations when choosing treatment options for illness. High levels of childhood hospitalization are of concern for psychological as well as medical and economic reasons. This study compared medical and psychosocial attributes of children managed at home or in hospital for childhood gastroenteritis to identify factors differentiating type of care. Parents of children under two years with gastroenteritis managed at home (n = 76) or in hospital (n = 76) were interviewed. Medical details and a range of intra-family factors (e.g., parenting skills, marriage) and extra-family factors (e.g., neighborhood, social contacts) were queried. Doctors (n = 6) rated the severity of symptomatology of each case based only on medical details. There was no difference in the medical severity of the gastroenteritis episodes for hospital and home care groups. Instead families were most clearly differentiated using discriminant analysis by social variables; specifically hospital care families had poorer scores than home care families on social contact indices. This highlights the necessity for focusing on the wider social context in efforts at decreasing the incidence of childhood hospitalization.

Do Not Resuscitate Policies

To the Editor.—Recently I completed a literature search on Do Not Resuscitate policies in home care agencies in the United States. During that search I read with interest an article that appeared in the January 1989 edition of the Journal of the American Geriatrics Society. The article, “Do Not Resuscitate Discussions in a Hospital-Based Home Care Program” by Havlir et al, makes many good points about the need for discussion of DNR options with home care clients. I would, however, like to recommend that the authors consider that home care nurses, as well as physicians, are appropriate professionals to initiate such discussions. Nurses are the health professionals who have the most frequent contact with patients and families in home care. They are well equipped to assess the psychosocial and emotional needs of patients and families. Nurses are skilled at helping patients and families set realistic goals for home care. If only physicians initiate such discussions with home care clients, many patients will be effectively denied access to the opportunity to consider this option since few physicians make home visits, and the vast majority of home care patients are effectively homebound. In agencies that have a policy that discussions of DNR options can be initiated either by home care nurses, patients, family members, or physicians, good results have been reported when nurses initiate such discussions.1

The mutual-participation relationship: key to facilitating self-care practices in clients and families.

The relationship among formal providers, clients, and families in home care is critical. If clients and family care givers are to develop adequate and safe self-care practices, they must be involved in mutual decision making concerning issues related to the illness and the care to be given. A relationship of mutual participation involves facilitating and negotiating goals with clients and their family members.

Evaluation of Psychosocial Problemsof the Home-bound Cancer Patient

The records kept by home health agencies on 447 homebound married cancer patients were evaluated to determine the types of psychosocial problems experienced by the families in home care. Results showed that families of older male patients with lung cancer felt more overwhelmed and depressed than other families, and families of younger female patients with cervical cancer were more likely to have interpersonal frictions and difficulties in the role shifts mandated by the illness.