BackgroundOptimal dosing of oral tyrosine kinase inhibitor therapy is critical to treatment success and survival of patients with chronic myeloid leukemia (CML). Drug intolerance secondary to toxicities and nonadherence are significant factors in treatment failure.ObjectiveThe objective of this study was to develop and pilot-test the clinical feasibility and acceptability of a mobile health system (REMIND) to increase oral drug adherence and patient symptom self-management among people with CML (chronic phase).MethodsA multifaceted intervention was iteratively developed using the intervention development framework by Schofield and Chambers, consisting of defining the patient problem and iteratively refining the intervention. The clinical feasibility and acceptability were examined via patient and intervention nurse interviews, which were audiotaped, transcribed, and deductively content analyzed.ResultsThe intervention comprised 2 synergistically operating elements: (1) daily medication reminders and routine assessment of side effects with evidence-based self-care advice delivered in real time and (2) question prompt list (QPL) questions and routinely collected individual patient adherence and side effect profile data used to shape nurses’ consultations, which employed motivational interviewing to support adoption of self-management behaviors. A total of 4 consultations and daily alerts and advice were delivered over 10 weeks. In total, 58% (10/17) of patients and 2 nurses participated in the pilot study. Patients reported several benefits of the intervention: help in establishing medication routines, resolution of symptom uncertainty, increased awareness of self-care, and informed decision making. Nurses also endorsed the intervention: it assisted in establishing pill-taking routines and patients developing effective solutions to adherence challenges.ConclusionsThe REMIND system with nurse support was usable and acceptable to both patients and nurses. It has the potential to improve adherence and side-effect management and should be further evaluated.
BackgroundInternational guidance for advance care planning (ACP) supports the integration of spiritual and religious aspects of care within the planning process. Religious leaders’ perspectives could improve how ACP programs respect patients’ faith backgrounds. This study aimed to examine: (i) how religious leaders understand and consider ACP and its implications, including (ii) how religion affects followers’ approaches to end-of-life care and ACP, and (iii) their implications for healthcare.MethodsInterview transcripts from a primary qualitative study conducted with religious leaders to inform an ACP website, ACPTalk, were used as data in this study. ACPTalk aims to assist health professionals conduct sensitive conversations with people from different religious backgrounds. A qualitative secondary analysis conducted on the interview transcripts focussed on religious leaders’ statements related to this study’s aims. Interview transcripts were thematically analysed using an inductive, comparative, and cyclical procedure informed by grounded theory.ResultsThirty-five religious leaders (26 male; mean 58.6-years-old), from eight Christian and six non-Christian (Jewish, Buddhist, Islamic, Hindu, Sikh, Bahá’í) backgrounds were included. Three themes emerged which focussed on: religious leaders’ ACP understanding and experiences; explanations for religious followers’ approaches towards end-of-life care; and health professionals’ need to enquire about how religion matters. Most leaders had some understanding of ACP and, once fully comprehended, most held ACP in positive regard. Religious followers’ preferences for end-of-life care reflected family and geographical origins, cultural traditions, personal attitudes, and religiosity and faith interpretations. Implications for healthcare included the importance of avoiding generalisations and openness to individualised and/ or standardised religious expressions of one’s religion.ConclusionsKnowledge of religious beliefs and values around death and dying could be useful in preparing health professionals for ACP with patients from different religions but equally important is avoidance of assumptions. Community-based initiatives, programs and faith settings are an avenue that could be used to increase awareness of ACP among religious followers’ communities.
Objectives. Culture and religion are important in advance care planning (ACP), yet it is not well understood how this is represented in ACP online resources. The aim of the present study was to identify the availability of Australian-based ACP websites and online informational booklets containing cultural and religious information.Methods. An environmental scanning framework was used with a Google search conducted from 30 June 2015 to 5 July 2015. Eligible Australian-based ACP websites and online informational booklets were reviewed by two analysts (APS & PM) for information pertaining to at least one culture or religion. Common characteristics were agreed upon and tabulated with narrative description.Results. Seven Australian-based ACP websites were identified with varying degrees of cultural and religious information. Seven Australian-based ACP informational booklets were identified addressing culture or religion, namely of Aboriginal and Torres Strait Islander (n = 5), Sikh (n = 1) and Italian (n = 1) communities. Twenty-one other online resources with cultural and religious information were identified, developed within the context of health and palliative care.Conclusions. There is no comprehensive Australian-based ACP website or informational booklet supporting ACP across several cultural and religious contexts. Considering Australia's multicultural and multifaith population, such a resource may be beneficial in increasing awareness and uptake of ACP.What is known about the topic? Health professionals and consumers frequently use the Internet to find information. Nonregulation has resulted in the proliferation of ACP online resources (i.e. ACP websites and online informational booklets). Although this has contributed to raising awareness of ACP, the availability of Australian-based ACP online resources with cultural and religious information is not well known. What does this paper add? This paper is the first to use an environmental scanning methodology to identify Australianbased ACP websites and online informational booklets with cultural and religious information. What are the implications for practitioners? The results of this environmental scan present the availability of Australianbased ACP websites and online informational booklets containing cultural and religious information. A thorough understanding may assist in identifying gaps for future ACP project planning and policy objectives, consistent with meeting cultural and religious needs. This may be beneficial for health professionals, consumers, health associations, organisations and government policy makers concerned with ACP.
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