Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: Systematic Mixed Studies Review.

BACKGROUND: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth in home-based palliative care. OBJECTIVE: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients' use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients. METHODS: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis. RESULTS: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth. CONCLUSIONS: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.

Registered nurses' experiences of caring for patients in hospitals transitioning from curative to palliative care: A qualitative study.

The aim of this study was twofold: to illuminate registered nurses' experiences of palliative care and of caring for patients transitioning from curative to palliative care in hospitals. A qualitative descriptive design was used. Group interviews were conducted with 11 registered nurses in three different hospital settings. Content analysis was performed. The results are presented in four themes: "Understanding palliative care in a hospital setting"; "Involving, supporting, and caring for patients and families"; "Striving for consensus and common goals of care"; and "Struggling with the hospital environment." The registered nurses described struggling with the interpretation of palliative care and with how to transfer it into clinical practice in their specific care settings. Teamwork and collaboration were challenging and goals of care incongruent within the team. Further implementation of a palliative care approach, with core components symptom relief, teamwork, communication and relationship, and family support, is crucial to improve both patient care and the conditions enabling registered nurses to provide good care for the patients and their families in hospital settings.

Caring for patients with eating deficiencies in palliative care-Registered nurses' experiences: A qualitative study.

AIMS AND OBJECTIVES: The aim was to explore RNs' experiences of caring for patients with eating deficiencies in palliative care. BACKGROUND: Food and mealtimes are fundamental aspects for wellbeing and social interactions. The worldwide trajectory of ageing populations may result in increased need for palliative care. Everyday life with chronic life limiting illness and eating deficiencies is challenging for patients and families. RNs are key care providers at end-of-life. DESIGN: A qualitative study with an inductive approach was used. METHODS: Nineteen experienced RNs in palliative care were interviewed through telephone; interviews were audio recorded and transcribed verbatim. Inductive qualitative content analysis was performed, and the COREQ checklist was used to guide proceedings. RESULTS: The overarching theme, Supporting persons with eating deficiencies in-between palliative care and end-of-life care, is represented by three sub-themes: Easy to stick with doing, Just being, without doing, is hard and Letting go. Near end-of-life, eating symbolized social belonging and quality of life for RNs, whereas for patients and families, eating symbolized life. RNs tried practical solutions, however, not always according to patients' and families' preferences. CONCLUSIONS: RNs were well prepared to tackle physical inconveniences and provide support, however, less prepared to encounter existential, psychological and social issues in relation to eating deficiencies. Although RNs stated that human beings stop eating when they are about to die, letting nature run its' course and facilitating patients' transition to end-of-life care was challenging. RELEVANCE TO CLINICAL PRACTICE: Food and mealtimes represent fundamental aspects of human life and denote central parts in RNs clinical practice in palliative care. The findings can inspire development of a comprehensive palliative care approach to support patients and families. Structured reflection in relation to clinical practice may support and encourage RNs, caring for patients with eating deficiencies, in mastering both doing and being.

Homecoming-Dignity Through Movement at the End of Life: A Qualitative Interview Study With Healthcare Professionals.

AIM: To describe healthcare professionals' and volunteers' experiences of a pathway for movement on a hospice ward. METHOD: This was a qualitative study with an inductive approach. Data were collected in a hospice setting through 4 focus group interviews with healthcare professionals and volunteers (n = 12). The focus group participants varied in age, profession, and length of experience in palliative care. The interviews were audio recorded, transcribed and analyzed with qualitative content analysis. RESULTS: Dignity through movement at the end of life was the main theme, complemented by 4 sub-themes. Two descriptive sub-themes: "A practical tool to facilitate physical activity" and "Companionship and goals give meaning to the day," and 2 interpretative sub-themes: "Regaining control and having a choice" and "Feeling normal and alive" based on participants' views of patient experiences. SIGNIFICANCE OF RESULTS: Indications are that the pathway for movement addresses a wide range of experiences related to different aspects of being human in a difficult situation. Experiences of movement and physical activity can promote wellbeing, dignity, and a sense of feeling "at home" for patients within hospice care. The pathway for movement is simple to set up, offers access to appropriate physical activity and seems to benefit patients both in the early and later phases of palliative care.

Hospital nurses' experiences of assessing health status changes in stem-cell transplanted patients in home care: A qualitative study.

AIMS AND OBJECTIVES: To explore hospital nurses' experience assessing changes in the health status of stem-cell transplanted patients in home care (HC). BACKGROUND: Stem-cell transplanted patients in HC are treated at home instead of in hospital wards. Hospital nurses visit patients daily and play a key role in assessing the patients' health status. Previous studies on HC for stem-cell transplanted patients focus mainly on safety in HC versus hospital care. No studies regarding nurses' experience assessing patients' health status at home when patients undergo stem-cell transplantation were found. DESIGN: Qualitative study with an explorative design. METHODS: Data were collected via 14 individual semi-structured interviews with hospital nurses working with stem-cell transplanted patients in HC. Data were analysed using systematic text condensation. The reporting of the study was guided by the COREQ checklist. RESULTS: Three categories emerged from the data analysis: 1) Effective communication and clinical intuition enhances the assessment of patients' general health condition; 2) It is challenging to rely on one's own judgment in remote assessment; and 3) There are key facilitators in performing remote clinical assessments. CONCLUSIONS: Effective communication and clinical intuition enhanced the assessment of patients' general health conditions. The lack of physical presence during remote assessments made using clinical intuition in the assessment process difficult. Experience with hematopoietic stem-cell transplantation was seen as important to facilitate accurate remote clinical assessments. RELEVANCE TO CLINICAL PRACTICE: Nurses with responsibility for hospital at-home telephone care should receive training in remote communication and should shadow hospital at-home nurses during in home visits to gain experience assessing patients' health status. Telehealth aspects such as videoconferencing and remote patient monitoring should be considered for more accurate remote assessment. This could potentially result in more effective assessments and reduced readmissions and could promote nurses' confidence in their assessments.

Patients' experiences of eHealth in palliative care: an integrative review.

BACKGROUND: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care. METHODS: The aim of this study was to describe patients' experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014-2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies. RESULTS: The findings are synthesized in the main theme: E-health applications - promoting communication on patients' and families' terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients' experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology. CONCLUSIONS: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources.

Patients' Experiences of Telehealth in Palliative Home Care: Scoping Review.

BACKGROUND: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care. OBJECTIVE: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care. METHODS: A scoping review was conducted using the methodological framework of Arksey and O'Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data. RESULTS: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home. CONCLUSIONS: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

Leadership in specialist palliative home care teams: A qualitative study.

AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams. BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs. METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis. RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities. CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size. IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

Team type, team maturity and team effectiveness in specialist palliative home care: an exploratory questionnaire study.

To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff.

BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context. METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care. RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important. CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams.

BACKGROUND: Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. OBJECTIVE: Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). METHOD: A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. RESULTS: Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. SIGNIFICANCE OF RESULTS: Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

Team interactions in specialized palliative care teams: a qualitative study.

BACKGROUND: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned. AIM: The aim was to explore team interaction among team members in specialized palliative care teams. DESIGN: Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. SETTING/PARTICIPANTS: Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included. RESULTS: Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care. CONCLUSION: Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers.