scholarly journals Exploring rural palliative care patients’ experiences of accessing psychosocial support through telehealth: A longitudinal approach

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Rachel J. Rahman ◽  
Joseph R. Keenan ◽  
Joanne Hudson
Keyword(s):  
Palliative Care ◽  
Interpretative Phenomenological Analysis ◽  
Psychosocial Support ◽  
Quality Of Healthcare ◽  
Structured Interviews ◽  
Palliative Care Setting ◽  
Longitudinal Approach ◽  
Mindful Engagement ◽  
Meaningful Relationships

In this research, we explore the experiences of rural palliative care patients receiving psychosocial support through telehealth. A longitudinal approach considered how experiences vary over time. Three patients with a terminal cancer diagnosis were given a laptop to access psychosocial support via telehealth over three months. Semi-structured interviews were conducted at monthly intervals. Interpretative phenomenological analysis identified four themes: Deepening understanding through unburdened and continuous connections; the ever-present paradox of visible and invisible telehealth; insight into the holistic self: from barrier to facilitator; and, the immediate change from unnecessary distraction to mindful engagement. Findings challenge previous conclusions regarding the inability of telehealth to support meaningful relationships, and instead provide novel insights to explain why enabling rural palliative care patients to access support from home is supportive for their wellbeing and the quality of healthcare relationships. Our conclusions question whether the indirect benefits of telehealth could also offer a valuable way of accessing health services beyond a palliative care setting.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

scholarly journals Development of a modular Decubitus Prophylaxis System: DekuProSys

2019 ◽  
Vol 5 (1) ◽  
pp. 277-279
Author(s):  
Simon Gallinger ◽  
Natalie Jankowski ◽  
Milena Bister ◽  
Sandra Korge ◽  
Astrid Trachterna ◽  
...  
Keyword(s):  
Risk Factors ◽  
Decision Making ◽  
Palliative Care ◽  
Pressure Ulcers ◽  
Interdisciplinary Approach ◽  
Skin Lesions ◽  
Difficult Decision ◽  
Palliative Care Setting ◽  
Care Information

AbstractPressure ulcers (decubiti) are one of the most frequent side effects in the palliative care setting. Terminally ill and dying people have multiple comorbidities resulting in a high risk to develop pressure ulcers. These skin lesions are caused by pressure, friction and shearing forces in combination with several risk factors (e.g. moisture, tissue condition). People of all ages with reduced activity can suffer from decubitus ulcers. In palliative care, the treatment of symptoms to ensure the highest possible quality of life is of primary importance. Ethical controversies and difficult decision-making often lead to uncertainties and burdens for caregivers, patients and relatives. In the DekuProSys project, a decubitus prophylaxis system for inpatient and outpatient palliative care of people of all ages is being developed. The system will assist caregivers in patient care in multiple ways. It will capture and report risk factors for decubitus, assist at decision making and documentation. Furthermore, it will provide care information and instruction if needed. Aiming for an innovative and useful solution, the project follows a user-centered and interdisciplinary approach.

scholarly journals Current dilemmas in the assessment of suffering in palliative care

2014 ◽  
Vol 13 (4) ◽  
pp. 1093-1101 ◽  
Author(s):  
Alicia Krikorian ◽  
Juan Pablo Román
Keyword(s):  
Palliative Care ◽  
Care Setting ◽  
Theoretical Background ◽  
Chronic Illnesses ◽  
General Description ◽  
Palliative Care Setting ◽  
Different Populations ◽  
Assessment Measures ◽  
Quality Tools

AbstractObjective:Although relief from suffering is essential in healthcare and palliative care, few efforts have aimed at defining, operationalizing, and developing standards for its detection, assessment, and relief. In order to accurately explore and identify factors that contribute to suffering, more attention needs to be focused on quality assessment and measurement, not only for assessment purposes but also to test the effectiveness of interventions in relieving suffering. The scope of the present paper is to discuss the strategies that aid in the detection and assessment of the suffering experience in patients with chronic illnesses and/or in palliative care settings, and the dilemmas commonly encountered regarding the quality of available assessment measures.Method:A general description of instruments available for suffering assessment is provided. Matters regarding the accuracy of the measures are discussed. Finally, some dilemmas regarding the quality of the measures to screen for and assess suffering are presented.Results:There have been some achievements toward adequate suffering assessment. However, a more robust theoretical background is needed, and empirical evidence aimed at supporting it is required. In addition, further examination of the psychometric characteristics of instruments in different populations and cultural contexts is needed.Significance of results:An interesting number of assessment measures are now available for use in the palliative care setting, employing innovative approaches. However, further examination and validation in different contexts is required to find high-quality tools for detection of suffering and assessment of the results of intervention.

Training Otolaryngologists in Palliative Care Delivery: An Underutilized Opportunity

2017 ◽  
Vol 158 (1) ◽  
pp. 24-26 ◽  
Author(s):  
Yemeng Lu-Myers
Keyword(s):  
Palliative Care ◽  
Head And Neck Cancer ◽  
Head And Neck ◽  
Neck Cancer ◽  
Psychosocial Support ◽  
Care Delivery ◽  
Care Providers ◽  
Treatment Paradigm ◽  
Positive Effect

Palliative care is an underutilized and often misunderstood discipline in the treatment of patients with head and neck cancer. The key components of palliative care include symptoms management, psychosocial support, and enhanced communications. Abundant evidence has demonstrated the beneficial effect for the early incorporation of palliative care in the treatment paradigm for patients with chronic diseases and malignancies, with findings supporting its positive effect on patients’ quality of life as well their survival. Particularly for otolaryngologists, the unique morbidities of head and neck cancer make our patients especially vulnerable and even more in need of the support and benefits that can come from palliative care. While increased consultation with palliative care providers for patients with head and neck cancer is a good first step, training otolaryngologists to develop their own “primary palliative care competencies” is key for improving our patients’ outcomes.

scholarly journals Diet and Nutrition in Cancer Survivorship and Palliative Care

2013 ◽  
Vol 2013 ◽  
pp. 1-12 ◽  
Author(s):  
Anthony J. Bazzan ◽  
Andrew B. Newberg ◽  
William C. Cho ◽  
Daniel A. Monti
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Survivorship ◽  
End Of Life Care ◽  
Care Setting ◽  
Cancer Recurrence ◽  
Current Data ◽  
Wide Range ◽  
Palliative Care Setting

The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting.

scholarly journals Exploring the Competencies of Japanese Expert Nurse Practitioners: A Thematic Analysis

Healthcare ◽  
2021 ◽  
Vol 9 (12) ◽  
pp. 1674
Author(s):  
Mari Igarashi ◽  
Ryuichi Ohta ◽  
Yasuo Kurita ◽  
Akinori Nakata ◽  
Tsutomu Yamazaki ◽  
...  
Keyword(s):  
Medical Care ◽  
Nurse Practitioners ◽  
Thematic Analysis ◽  
Interprofessional Collaboration ◽  
Quality Of Healthcare ◽  
Medical Professionals ◽  
Clinical Settings ◽  
Structured Interviews ◽  
Personal Qualities

Nurse practitioners (NPs) provide medical care equivalent to that of physicians and facilitate access to healthcare. Although Japan’s first NP graduated in 2010, how Japanese expert NPs work effectively in clinical contexts is yet to be investigated. We aimed to identify the competencies that make expert NPs in Japan effective. Twelve Japanese expert NPs were purposely selected. The average age of the participants was 44.8 years, average NP experience was 7.5 years, and eight participants were women. Semi-structured interviews were conducted online from March to May 2021. Interviews were recorded, transcribed verbatim, and analyzed using thematic analysis. Thematic analysis revealed five themes: working in physicians’ contexts, interprofessional collaboration, involvement in nurses’ work, contribution to healthcare, and personal qualities for effective working. Japanese expert NPs can function effectively in clinical settings by flexibly and humbly collaborating with other medical professionals who have autonomous positions. They can improve the quality of healthcare by proposing practical solutions to problems faced by patients and medical organizations. These explored competencies can be applied to other aging and more complex societal contexts, and in updating the required competencies of Japanese NPs.

scholarly journals Brief Engagement and Acceptance Coaching for Hospice Settings (the BEACHeS study): results from a Phase I study of acceptability and initial effectiveness in people with non-curative cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicholas J. Hulbert-Williams ◽  
Sabrina F. Norwood ◽  
David Gillanders ◽  
Anne M. Finucane ◽  
Juliet Spiller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Focus Groups ◽  
Advanced Cancer ◽  
Psychological Intervention ◽  
Qualitative Interviews ◽  
Future Research ◽  
Study Results ◽  
Palliative Care Setting

Abstract Objectives Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. Methods Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. Results At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. Conclusions This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations—including recruiting non-cancer diagnoses, and earlier in the treatment trajectory—likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).

scholarly journals Cultural health literacy: the experiences of Māori in palliative care

2018 ◽  
Vol 25 (4) ◽  
pp. 15-23 ◽  
Author(s):  
Jacquie Kidd ◽  
Stella Black ◽  
Rawiri Blundell ◽  
Tamati Peni
Keyword(s):  
Palliative Care ◽  
New Zealand ◽  
Health Literacy ◽  
Health Information ◽  
Health Professionals ◽  
Health Resources ◽  
Structured Interviews ◽  
Aotearoa New Zealand ◽  
Palliative Care Setting ◽  
Maori Health

Abstract: Health literacy is a concept that is frequently applied to the patient’s ability to find and comprehend health information. However, recent literature has included the skill of the health professional and the accessibility of health resources as important factors in the level of health literacy achieved by individuals and populations. In 2014 a qualitative study undertaken in Aotearoa New Zealand, investigated the context of health literacy for Māori in a palliative care setting (Māori are the indigenous people of Aotearoa New Zealand). The study included the experiences of patients, whānau (families), and health professionals. Method: Individual semi-structured interviews were held with 21 patients, whānau and six key informants: a medical specialist, a service leader involved in developing culturally specific responses to patients, two Māori service managers, and two Māori health team leaders. Focus groups were held with a total of 54 health professionals providing palliative care services. Data analysis: A thematic analysis was undertaken using a general inductive approach. The trustworthiness and reliability of the analysis was supported by sharing analysis of the transcripts among the research team. Member checking or respondent validation was used in seeking confirmation of the interim findings at five hui (meetings) with the research communities involved. Findings: This study found that the shock and grief that attends a life-limiting illness made hearing and processing health information very difficult for patients and whānau. Further, ‘hard conversations’ about moving from active treatment to palliative care were often avoided by health professionals, leaving patients and whānau distressed and confused about their choices and prognosis. Finally, poor cultural health literacy on the part of organisations has likely impacted on late access to or avoidance of palliative care for Māori.

scholarly journals Assisted Living Administrators' Views of Palliative Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 906-906
Author(s):  
Elise Abken ◽  
Molly Perkins ◽  
Alexis Bender
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Assisted Living ◽  
Spiritual Needs ◽  
Structured Interviews ◽  
Age In Place ◽  
Care Access ◽  
Access And Quality ◽  
Using Data

Abstract As many older adults with progressive chronic conditions choose to age-in-place in assisted living (AL) communities, external healthcare workers (e.g., those who provide palliative care) increasingly support AL staff in caring for residents with complex health needs. Palliative care is a branch of healthcare dedicated to preserving quality of life by attending to the physical, mental, and spiritual needs of individuals with chronic, life-threatening diseases and is well suited to manage AL residents’ progressive medical conditions. However, AL residents and their care partners often face barriers to accessing palliative care. Using data from a larger 5-year NIA-funded study, we examined AL administrator knowledge and use of palliative care in seven AL communities around the Atlanta metropolitan area that were racially, ethnically, and socioeconomically diverse. Findings from thematic analysis of semi-structured interviews with 16 administrators indicated that 15 of 16 administrators were familiar with palliative care. A minority of administrators clearly distinguished palliative care from hospice services and conceptualized it as a “bridge” to hospice services. Administrators emphasized how palliative care assists communities in caring for health concerns in-house rather than having to send residents to the hospital. Despite their positive view of palliative care, administrators described infrequent use of palliative services in their communities. Findings show that although none of the AL communities integrate palliative care with their service offerings, AL administrators see value in palliative care for their residents. We provide recommendations for improving palliative care access and quality of life for AL residents at end of life.

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