Paediatric palliative home care with Internet-based video-phones: lessons learnt

We have designed and tested an Internet-based video-phone suitable for use in the homes of families in need of paediatric palliative care services. The equipment uses an ordinary telephone line and includes a PC, Web camera and modem housed in a custom-made box. In initial field testing, six clinical consultations were conducted in a one-month trial of the videophone with a family in receipt of palliative care services who were living in the outer suburbs of Brisbane. Problems with variability in call quality--namely audio and video freezing, and audio break-up--prompted further laboratory testing. We completed a programme of over 250 test calls. Fixing modem connection parameters to use the V.34 modulation protocol at a set bandwidth of 24 kbit/s improved connection stability and the reliability of the video-phone. In subsequent field testing 47 of 50 calls (94%) connected without problems. The freezes that did occur were brief (with greatly reduced packet loss) and had little effect on the ability to communicate, unlike the problems arising in the home testing. The low-bandwidth Internet-based video-phone we have developed provides a feasible means of doing telemedicine in the home.     

Perception of clients when receiving home care

This qualitative and exploratory study analyzed the perception of users of the Home Care Program (SSS-GHC) in Porto Alegre, Rio Grande do Sul state regarding the assistance provided by its interdisciplinary team and caretakers. Among the 17 clients interviewed, there was a prevalence of women, elderly people and chronic degenerative disease patients. As a result of the analysis it was possible to identify five categories which were related to family, professional care and experiences of the subjects in relation to life circumstances. Results showed that, according to the client's point of view, the care received was viewed as humanized and favorable to the evaluative strategy of the Program.     

Use of home telehealth in palliative cancer care: a case study

We conducted a mixed-methods case study to explore the perceptions of family caregivers and palliative cancer patients of home telehealth, and their experience with it. The intervention in the randomized controlled trial from which study participants were selected consisted of specialist nurses available 24 hours per day who communicated with patients and families using videophones, with optional remote monitoring. Qualitative data were collected from interviews with five patient/caregiver dyads and seven bereaved family caregivers, direct observation and nursing documentation. Quantitative data were collected from computerized nursing documentation and analyzed for patterns of use. During the study there were 255 contacts, including videophone, telephone or face-to-face visits, between tele-nurses and families. Overall the patients, family caregivers and tele-nurses felt that home telehealth enabled family caregiving, citing increased access to care, and patient and family caregiver reassurance. Pain management was the most common reason for initiating contact with the nurse, followed by emotional support. Concerns included lack of integration of services, inappropriate timing of the intervention and technical problems. The case study confirmed the importance of timely and accessible care for a group of clinically vulnerable, dying cancer patients and their family caregivers.     

Determinants of home death in palliative home care: using the interRAI palliative care to assess end-of-life care

Many terminally ill patients are given the choice to die at home. This study identified determinants of home death among patients receiving palliative home care. Health information was collected using the interRAI palliative care assessment tool. The sample included health information from 536 patients receiving home health care from one community care access centre in Ontario, Canada. Patients who died at home were more likely to be functionally impaired and less likely to live alone. The patients' wish to die at home and the family's ability to cope were strong determinants of home death. This study suggests that the presence of a supportive family that is able to work with the health care team to implement a plan of care is important to the patients' ability to die at home. This study highlights the need to treat the patient and the caregiver(s) as a unit of care.     

Coping with troublesome clients in home care

I describe methods used by home carers to cope with troublesome clients and analyze how the organizational context affects their use. Empirical data consist of participant observation and field interviews with 14 home carers in three municipalities in southern Sweden. Home carers might try to avoid working with troublesome clients, prepare themselves mentally before visiting them, try to withhold them psychologically, try to understand them and explain their behavior, try to change their behavior, and vent experiences with colleagues. Although some of these methods are practiced frontstage, in interactions with clients, others take place backstage, only involving staff. Their use is influenced both by properties of frontstage work, for instance, the intimate nature of many tasks and the experienced need to keep up a "good" relationship with clients, and by the organization of backstage work, for instance, the organization of staff meetings and supervisors' understanding of coping processes.     

Program evaluation of hospital-based antenatal home care for high-risk women

In light of the emphasis on increased efficiency in the delivery of hospital-based healthcare services in Canada, healthcare administrators need to advocate for greater care in the community. The implementation of an antenatal home-care program for women with high-risk pregnancies at the Ottawa Hospital presented the opportunity to develop a comprehensive framework to evaluate the value and outcomes of the new community-based program.     

Informal helpers of elderly home care clients.

Most functionally impaired elderly people rely exclusively on family and other informal helpers. This article examines whether elderly people who turn to formal service providers also receive help from informal sources. A sample of 100 clients of a statewide home care program were interviewed about the informal help they received. Most had family, friends, or neighbors who helped. However, the helping networks were fragile. Only 18 percent of clients had a helping spouse. Only half had more than one helper. Several had only nonkin helpers. Few had a helper living with them. The fragility of these helping networks, compared with those identified in other studies, may explain why these elderly people applied for services. Implications for the respective roles of social services programs and natural support networks are discussed.     

Acute health care service use among elderly home care clients

Utilization of acute health care services accounts for a substantial proportion of health expenditures in Canada, and is associated with compromised health and autonomy for older persons. Using the Resident Assessment Instrument for Home Care (RAI-HC), this cross-sectional study of 683 elderly home care recipients sought to distinguish clients who were more likely to use acute health care services; i.e., hospital admissions, emergency room visits. Clients with nutritional problems were 2.58 times more likely to have used acute health care services than clients without nutritional problems. Among clients with a poor social support system, those with nutrition problems were 5.95 times as likely to have used acute health care services. Poor self-rated health, and greater functional dependency were also signif- icantly associated with acute health care use. This study provides a profile of elderly home care clients who are at risk of using acute health care services, which may facilitate targeted efforts to prevent unplanned acute health care use.     

Consultative palliative care for nausea and vomiting in the home setting

Two patients with terminal cancer, a 46-year-old man with intestinal obstruction and a 12-year-old boy with a brain tumour, were suffering from vomiting and from headaches and nausea, respectively. Their general practitioners consulted the general-practitioner adviser about palliative treatment. After the recommended changes in medication the symptoms decreased in both patients. They died some weeks later. Nausea and vomiting may be treated when one takes into account which centres in the brain and neurotransmitters are involved, together with the site of action of the medication. The medication may be administered by subcutaneous infusion.     

Abuse and neglect of clients in agency-based and consumer-directed home care

Because a growing number of Americans receive long-term care at home, social workers face new challenges in referring clients to either agency-based or consumer-directed care models. Traditional agency-based home care often is considered safer for disabled clients because workers are professionally trained and monitored; newer, client-directed home care models offer more autonomy and flexibility. This study examined differences in worker abuse and neglect of clients across agency and consumer-directed models. Analyses showed that family ties, race or ethnicity, social supports, language compatibility, and provider turnover were more relevant than model of care to understanding worker abuse and neglect of clients. These findings suggest that clients in consumer-directed models are at no higher risk than agency clients. Implications are considered for social work practicitioners.     

Predictors of influenza immunization among home care clients in Ontario

BACKGROUND: This study examined factors associated with the receipt of influenza vaccination among Ontario home care clients. METHODS: Home care clients were assessed, as part of a routine home visit, during a pilot study of the Resident Assessment Instrument - Home Care (RAI-HC) in 12 Ontario Community Care Access Centres (CCACs). The RAI-HC is a multidimensional assessment that identifies clients' needs and level of functional ability. Multiple logistic regression was used to identify factors associated with influenza immunization in the two years prior to assessment. RESULTS: The overall rate of immunization reached about 80% by 2002. Factors such as age, respiratory problems, diabetes and congestive heart failure were associated with greater uptake, but overall rates of influenza immunization were lower than expected. Low education, smoking and poor medication adherence were negatively associated with influenza immunization. In addition, there was considerable variation in uptake among CCACs after adjusting for other significant individual-level independent variables. INTERPRETATION: Comprehensive assessments like the RAI-HC can be used to help identify and respond to health promotion and disease prevention issues in this population, and to compare rates across Canada.     

Using caregivers-as-proxies to retrospectively assess and measure quality of dying of palliative care clients

This study evaluated two quality-of-life assessment and measurement tools, the Client Generated Index and the McGill Quality of Life questionnaire, within palliative care nursing. Primarily tested was the feasibility of the tools to assess clients' QOL at admission and, if necessary, when their condition altered. The reliability of the tools has previously been ascertained Additionally, quality of dying during the last two days of life for 14 participants who died during the study was assessed and measured retrospectively by these tools, using the client's nominated caregiver as proxy for the client. It is this second focus that we report on here. The reasons why proxy assessment and measurement of client QOD was not useful or feasible are discussed.     

Design and development of a mobile exercise application for home care aides and older adult medicaid home and community-based clients

ABSTRACT

We describe a community-engaged approach with Medicaid home and community-based services (HCBS), home care aide (HCA), client, and physical therapist stakeholders to develop a mobile application (app) exercise intervention through focus groups and interviews. Participants desired a short exercise program with modification capabilities, goal setting, and mechanisms to track progress. Concerns regarding participation were training needs and feasibility within usual care services. Technological preferences were for simple, easy-to-use, and engaging content. The app was piloted with HCA-client dyads (n = 5) to refine the intervention and evaluate content. Engaging stakeholders in intervention development provides valuable user-feedback on both desired exercise program contents and mobile technology preferences for HCBS recipients.     

Analysis of the suitability of 'video-visits' for palliative home care: implications for practice

We conducted a retrospective chart review to estimate the extent to which palliative home care visits could be carried out using videophones and to explore factors that might inform the eligibility criteria for video-visits. Four hundred palliative home care health records of deceased clients from 2002 were randomly selected from the Health Records Office in one Canadian health region. One visit was randomly selected from each of these health records. Three hundred and fifty-four visits were coded, and based on professional nursing judgment, the coder estimated whether video-visits could have been carried out. Approximately 43% of the visits were considered appropriate for video-visits. The results suggest that four factors may inform eligibility and decisions about a client's suitability for video-visits: diagnosis (cancer versus non-cancer), low Edmonton Symptom Assessment System (ESAS) score, no care-giver present, number and types of interventions required. Patients with a cancer diagnosis were more likely to be suitable for video-visits, which suggests that disease trajectory, rather than diagnosis of 'palliative', may be more influential in determining the care required and appropriateness of videophone use.     

The home care allowance program: a change in policy and implications for elder clients

This paper reports the findings of a study exploring the effects of cutbacks in Colorado Home Care programs on frail elderly. Results indicate that these cutbacks put the respondents, who live in their own homes but are dependent on relatives, friends, or strangers for assistance in activities of daily living, at risk for long term institutionalization. These households are precursors of a growing healthcare crisis in aging populations where homecare assistance programs must supplement or supplant the resources of a thinning network of kin and friends.     

Communication patterns between health care providers and their clients at an antenatal clinic in Zimbabwe

We conducted this study to explore communication between pregnant women and health care providers at an antenatal clinic in Zimbabwe. We adopted a field research approach using qualitative strategies for data collection and analysis. Using content analysis, we identified impersonal communication, nonprivate communication, rigid communication, uninformed communication, and authoritative communication as characteristic components of the interaction between the pregnant women and the health care providers. The attitudes reflected by the communication styles at the antenatal clinic must be viewed in relationship to the culture and tradition of Zimbabwe. With further research, we may identify obstacles to communication that are not related to culture. This knowledge may lead to a better understanding of appropriate communication strategies to promote healthy pregnancy.     

Developing a health interview tool for Medicaid home and community-based services clients and home care aides through a community-engaged approach

We describe a community-engaged approach to develop and pilot a home care aide (HCA) administered health interview with Medicaid Home and Community-based Services clients. Stakeholders identified five priority health topics and selected a card sorting methodology for interviews. A barrier to interviewing clients was decreased communication skills among HCAs, and we modified health interview training to include communication training. Stakeholders reported the interview methodology was feasible within usual care, acceptable to clients, and contributed to increased knowledge on providing person-centered care. Stakeholder engagement resulted in valuable insights regarding the health interview methodology and relevant training needs.