Deidre D. Morgan

Implementation of a pilot telehealth programme in community palliative care: A qualitative study of clinicians’ perspectives

Background: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems’ imperatives for improved service delivery within current budgets. Clinicians’ experiences and attitudes play a key role in the implementation of any innovation in service delivery. Aim: To explore clinicians’ perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. Design: Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. Setting/participants: The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. Results: Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. Conclusion: Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.

Designing Clinically Valuable Telehealth Resources: Processes to Develop a Community-Based Palliative Care Prototype

Background Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. Objective This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. Methods The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model’s first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. Results Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. Conclusions The CeHRes model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype.

Occupational therapy interventions for breathlessness at the end of life.

Purpose of reviewThis review aims to define and explore the contribution of occupational therapy in end-of-life care, with a particular focus on breathlessness. It examines occupational therapy interventions for the management of breathlessness and makes recommendations for future research. Recent findingsAn emerging body of research demonstrates people with advanced disease continue to strive for active participation in everyday activities in the face of debilitating symptoms such as breathlessness. It is through active participation that people adjust to bodily decline. When specific everyday activities are targeted for intervention, implantation of strategies to manage breathlessness within the context of these activities has been found to optimize function and well being for those with chronic obstructive pulmonary disease. Evidence examining the efficacy of energy conservation and relaxation is limited and requires more robust examination. SummarySymptoms such as dyspnoea need to be considered within the contexts in which they exist – that is, the bodily experience of breathlessness and its impact on everyday activities or occupations. The clinical and theoretical focus of occupational therapy supports the enablement of continued participation in valued and essential activities and offers a unique focal point for research. Emerging research demonstrates the importance of translating the benefits of effective symptom management into everyday activities and informs a future research agenda.

The Convergent Validity of the Developmental Test of Visual Perception-Adolescent and Adult, Motor-Free Visual Perception Test-Third Edition and Test of Visual Perceptual Skills (Non-Motor)-Third Edition When Used with Adults

Objective: The objective of the study was to investigate the convergent validity of the Developmental Test of Visual Perception — Adolescent and Adult (DTVP-A), the Motor-Free Visual Perception Test — third edition (MVPT-3) and the Test of Visual Perceptual Skills (non-motor) — third edition (TVPS-3) when used with adults. Method: Two hundred and twenty-one participants aged 20+ years (49 with and 172 without neurological impairment) completed the DTVP-A, MVPT-3 and TVPS-3. Spearman rho correlation coefficients were used to analyse the convergent validity of the three tests. Results: The DTVP-A (non-motor) total score was significantly correlated (p<0.01) with the MVPT-3 and the TVPS-3 total scores (rho = 0.73 and rho = 0.75 respectively). The MVPT-3 total score was also significantly correlated (p<0.01) with the TVPS-3 total score (rho = 0.79). The DTVP-A figure-ground subscale was found to be significantly correlated (p<0.01) with TVPS-3 subscales 1 to 7 with rho coefficients ranging from 0.36 to 0.56, as was the DTVP-A visual closure subscale (rho coefficients ranging from 0.43 to 0.64) and the DTVP-A form constancy subscale (rho coefficients ranging from 0.51 to 0.64). The DTVP-A total score was also significantly correlated (p<0.01) with subscales 1 to 7 of the TVPS-3 (rho coefficients ranging from 0.48 to 0.68). Moreover, the TVPS-3 total score was significantly correlated (p<0.01) with the figure-ground, visual closure and form constancy subscales of the DTVP-A (rho = 0.62, rho = 0.65 and rho = 0.68). Furthermore, the MVPT-3 total score was significantly correlated (p<0.01) with the figure-ground, visual closure and form constancy subscales of DTVP-A (rho = 0.59, rho = 0.68 and rho = 0.65 respectively) and with subscales 1 to 7 of the TVPS-3 (rho coefficients ranging from 0.53 to 0.70). Conclusion: The DTVP-A, MVPT-3 and TVPS-3 exhibited moderate to high levels of convergent validity. The clinical implications of the findings of the study are that the DTVP-A, MVPT-3 and TVPS-3 appear to be measuring similar visual perceptual skills, but it is also important to note that the three tests all assess the visual perceptual skills in different ways.

Living actively in the face of impending death: constantly adjusting to bodily decline at the end-of-life

Context People with advanced cancer experience bodily change resulting in debilitating functional decline. Although inability to participate in everyday activities (occupation) contributes to profound suffering, limited research has examined the relationship between altered bodily experience (embodiment) and functional ability. Objectives The purpose of this study was to better understand the lived experience of functional decline for people with advanced cancer living at home. Methods Indepth interviews were conducted with 10 community dwelling people with advanced cancer about their bodily experiences of functional decline. This study employed a pragmatic qualitative approach, informed by hermeneutic phenomenology. Results People described living with rapidly disintegrating bodies and how this affected their ability to participate in everyday activities. Analysis identified themes which were evaluated against conceptual frameworks of ‘occupation’ and ‘embodiment’. People experienced a shifting sense of self. They had to continuously reinterpret changing bodies. Previously automatic movements became disjointed and effortful. Simple actions like standing or getting out of bed required increasing concentration. Relentless bodily breakdown disrupted peoples’ relationship with time, hindering their ability, but not their desire, to participate in everyday activities. Contending with this deterioration is the work of adaptation to functional decline at the end-of-life. Conclusions This study highlights the role active participation in everyday activities plays in mediating adjustment to functional decline. These findings challenge us to look beyond palliation of physical symptoms and psychospiritual care as ends in themselves. Symptom control and palliation should be viewed as mechanisms to optimise active participation in essential and valued activities.

Falls in Palliative Care

Dear Editor: People with advanced disease will experience functional decline as disease progresses and many will have physical falls. Sequelae of falls can be catastrophic and fractures are not uncommon. Patients can also experience decreased confidence and anxiety if they have experienced a fall. Such anxiety often extends to family and health professionals. Risk aversive responses by health professionals and carers that demand patients reduce physical activity can have the negative consequence of hastening deconditioning and, perversely, increasing risk of falling. Falls etiology is underresearched in people with advanced disease and frailty, especially in younger patients. One prospective study of 185 patients with advanced cancer found 50% of patients fell, irrespective of age. Strong falls predictors in palliative care include previous history of falls; use of psychoactive medications; and difficulties with balance, strength, or ambulation. Factors associated with falls in a group of 200 cognitively intact hospice inpatients (age range 45 to 94) included reluctance to or decision not to ask for assistance and a higher functional ability as measured by the Palliative Performance Scale and the activities of daily living (ADL) Index. Preliminary analysis of an ethics-approved retrospective case series of 100 community-dwelling hospice patients found 32% had recorded falls (see Fig. 1), yet only 4% had a falls risk identified in routine risk assessment. Of those who fell, 13% sustained lacerations and bruising, 5% fractures, and 5% other injuries. Eight percent were admitted to hospital after their fall. No stated action about the fall was recorded for 30% of patients. We need to ask, if only 4% had an identified falls risk yet 32% experienced falls, why was this risk not detected? Further, 72% of patients were noted to have mobility issues known to contribute to falls. Yet none were referred to physiotherapy for gait and balance assessment and only 3% were referred to occupational therapy for home assessment and environmental modification. The drive to be active for as long as possible remains strong for people at the end of life, irrespective of functional decline. Given that evidence suggests people who fall are reluctant to ask for help but are the more physically active of the patients we serve, our remit as health clinicians, is not to discourage activity, which hastens deconditioning, but rather enable people with life-limiting illnesses to be active in the safest possible way. However, it is imperative we know who is falling and why. What informs our decision about when to assess falls risk, and if identified, what actions do we take? The most effective falls intervention strategies include a combination of systematic risk screening, medication reviews, and follow-up on identified risks. What are the most effective interventions that will best optimize function for people with worsening frailty and those who care for them? Interventions that will

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey:

Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists’ perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.

Subacute Rehabilitation Does Have Benefits for Patients With Advanced Cancer

© 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. This manuscript version is made available under the CC-BY-NC-ND 4.0 license: http://creativecommons.org/licenses/by-nc-nd/4.0/ This author accepted manuscript is made available following 12 month embargo from date of publication (Oct 2017) in accordance with the publisher’s archiving policy

Telemonitoring via Self-Report and Video Review in Community Palliative Care: A Case Report

Continuous monitoring and management of a person’s symptoms and performance status are critical for the delivery of effective palliative care. This monitoring occurs routinely in inpatient settings; however, such close evaluation in the community has remained elusive. Patient self-reporting using telehealth offers opportunities to identify symptom escalation and functional decline in real time, and facilitate timely proactive management. We report the case of a 57-year-old man with advanced non-small cell lung cancer who participated in a telehealth trial run by a community palliative care service. This gentleman was able to complete self-reporting of function and symptoms via iPad although at times he was reticent to do so. Self-reporting was perceived as a means to communicate his clinical needs without being a bother to the community palliative care team. He also participated in a videoconference with clinical staff from the community palliative care service and his General Practitioner. Videoconferencing with the nurse and GP was highly valued as an effective way to communicate and also because it eliminated the need for travel. This case report provides important information about the feasibility and acceptability of palliative care telehealth as a way to better manage clinical care in a community setting.

Enabling Participation in Meaningful and Essential Occupations in End-of-Life Care

People receiving palliative care are living while they die. Evidence demonstrates that they strive to continue participation in valued and essential occupations at this time of life for as long as possible. Further, emerging research suggests that it is through the process of occupational engagement that people adjust to functional decline at the end of life. Occupational therapists (OTs) play a significant role in optimizing a person’s occupational performance in order to enable participation during this time. Management of symptoms such as refractory breathlessness needs to occur within the context of valued and essential occupational activities.