Adapting to the burdens of care: a telehealth program for cancer survivors with ostomies.

PURPOSE: An ostomy introduces to cancer survivors new demands for self-care and healthcare resource use. A curriculum that teaches ostomates self-management skills may affect survivors' use of resources. METHODS: A prospective randomized trial comparing usual care (UC) with an Ostomy Self-Management Training (OSMT) program delivered by telehealth was conducted in patients with ostomies due to cancer. The intervention occurred over 5 weeks with survey administration at baseline, program completion, and 6 months after completion. Quantitative data were analyzed using a mixed-effects logistic model to predict mean values of resource and service use. Responses to the open-ended question were coded and analyzed with directed content analysis. RESULTS: One hundred and sixty-seven subjects (89 in the OSMT arm and 78 in the UC arm) completed the questionnaire at all time points. The changes in likelihoods of emptying one's ostomy bag > 8 times/week and of incurring any out-of-pocket costs on accessories were 14% greater for the intervention group (p = .029 and p = .063, respectively). Qualitative analysis reveals among the OSMT arm an increase in the proportion of ostomy-specific comments and a decrease in the same metric among the UC arm. Common themes included learning to work with equipment, dealing with gas build-up and finding well-fitting clothing. CONCLUSIONS: There are some indications that participants in this structured telehealth program are more active in ostomy self-care. The reported ostomy self-care activities, healthcare consumables, and healthcare services reported by both groups illustrate the complexity of survivorship care following ostomy surgery. National Clinical Trial Identifier: NCT02974634.

A proposal for a novel approach to reduce burdens of care for people with dementia: A hypothesis.

Cognitive impairment of dementia patients affects their ability to communicate and cooperate with care. Dementia patients need a specialized communication to increase their cooperation during daily care and a scale to measure cooperation with care. To improve communication, we created and applied a digital communication platform (DCP) in an observational study. To measure cooperation with care, we created and tested psychometric properties of the Cooperation with Care Scale-Revised (CWCS-R) in an institutional review board-approved 6-week prospective study. DCP intervention was associated with decreased agitation and use of psychotropic medications for nursing home (NH) dementia patients. CWCS-R is both a reliable and valid tool to measure cooperation with care in NH dementia patients. Innovations in communication with dementia patients and a scale to measure cooperation with care could reduce burdens of care and improve quality of life for patients, their family members, and staff. It may potentially help decrease cost of dementia care.

Relieving one's relatives from the burdens of care.

It has been proposed that an old and ill person may have a 'duty to die', i.e. to refuse life-saving treatment or to end her own life, when she is dependent on the care of intimates and the burdens of care are becoming too heavy for them. In this paper I argue for three contentions: (1) You cannot have a strict duty to die, correlating to a claim-right of your relatives, because if they reach the point at which the burdens of care are larger than you can reasonably expect them to take, the natural conclusion is that their duty ends. (2) They may be prepared, however, to go on caring for you beyond that point. In that case your responsibility for their wellbeing may require you to refuse this care, even if this results in a situation for you in which death will be preferable to continued life. (3) If this is the correct understanding of your responsibilities, the objection that in the context of family life the burdens of care attached to one family member's valued existence can never be 'too heavy', fails. It postulates unlimited concern on one side and a total lack of concern on the other.