3 Let it all out: a scoping review of emotional disclosure-based psychological interventions in palliative care

Background: Emotional disclosure is the therapeutic expression of emotion. It holds potential as a means of providing psychological support. However, evidence of its efficacy in palliative settings is mixed. This may be due to variation in intervention characteristics. Aim: To derive a greater understanding of the characteristics of potentially effective emotional disclosure-based interventions in palliative care by: (1) Developing a taxonomy of emotional disclosure-based interventions tested in people with advanced disease and (2) Mapping and linking objectives, outcomes, underlying mechanisms, and implementation factors. Design: A scoping review drawing on Intervention Component Analysis to combine evidence from studies’ methods, results, and discussion sections. Data sources: Six databases were searched to May 2020 including CINAHL, PsycINFO, and MEDLINE. Studies of emotional disclosure in adults with advanced disease were included. Study quality was appraised using an established tool. Results: Seven thousand seven hundred ninety-two unique records were screened, of which 25 primary studies were included. Intervention characteristics were grouped into classes within three domains: topic of disclosure, format, and dose. Evidence was not available to determine which, if any, of the characteristics is most effective. Thematic synthesis of evidence from methods and discussion sections identified factors to consider in tailoring an emotional disclosure-based intervention to this setting, including: population characteristics (e.g. time since diagnosis), providing a safe environment, and flexibility in format. Conclusions: This review approach facilitated a clearer understanding of factors that may be key in developing emotional disclosure-based interventions for palliative populations. Intervention Component Analysis has potential for application elsewhere to help develop evidence-based interventions.

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Emotional disclosure as a therapeutic intervention in palliative care: a scoping review protocol

BMJ Open ◽

10.1136/bmjopen-2019-031046 ◽

2019 ◽

Vol 9 (8) ◽

pp. e031046

Author(s):

Daisy McInnerney ◽

Nuriye Kupeli ◽

Patrick Stone ◽

Kanthee Anantapong ◽

Justin Chan ◽

...

Keyword(s):

Palliative Care ◽

Outcome Measures ◽

Scoping Review ◽

Expressive Writing ◽

Care Setting ◽

Well Being ◽

Emotional Disclosure ◽

Published Data ◽

Palliative Care Setting ◽

Review Protocol

IntroductionEmotional disclosure (ED) is a term used to describe the therapeutic expression of emotion. ED underlies a variety of therapies aimed at improving well-being for various populations, including people with palliative-stage disease and their family carers. Systematic reviews of ED-based psychotherapy have largely focused on expressive writing as a way of generating ED. However, heterogeneity in intervention format and outcome measures has made it difficult to analyse efficacy. There is also debate about the mechanisms proposed to explain the potential effects of ED.We present a scoping review protocol to develop a taxonomy of ED-based interventions to identify and categorise the spectrum of interventions that could be classified under the umbrella term of ‘emotional disclosure’ in the palliative care setting. By mapping these to associated treatment objectives, outcome measures and explanatory frameworks, the review will inform future efforts to design and evaluate ED-based therapies in this population.Methods and analysisThe review will be guided by Arksey and O’Malley’s five-stage scoping review framework and Levac’s extension. The following electronic databases will be searched from database inception: CENTRAL, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Scopus, Web of Science and MEDLINE. We will include peer-reviewed studies and reviews. We will also check grey literature, including clinical trial registers, conference proceedings and reference lists, as well as contacting researchers. Articles will be screened by at least two independent reviewers and data charted using an extraction form developed for this review. Results will be analysed thematically to create a taxonomy of interventions, outcome measures and theoretical frameworks.Ethics and disseminationThis review does not require ethical approval as it is a secondary analysis of pre-existing, published data. The results will inform future research in the development of ED-based interventions and evaluation of their efficacy in the palliative care setting. We will disseminate findings through peer-reviewed journals.

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The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

Palliative Medicine ◽

10.1177/0269216320967593 ◽

2020 ◽

pp. 026921632096759

Author(s):

Fenella J Gill ◽

Zahraa Hashem ◽

Roswitha Stegmann ◽

Samar M Aoun

Keyword(s):

Palliative Care ◽

Scoping Review ◽

English Language ◽

Support Needs ◽

Care Needs ◽

Caregiver Support ◽

Paediatric Palliative Care ◽

Heterogenous Population ◽

Parent Caregivers ◽

The Individual

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

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Opioid-Induced Respiratory Depression in Pediatric Palliative Care Patients with Severe Neurological Impairment—A Scoping Literature Review and Case Reports

Children ◽

10.3390/children7120312 ◽

2020 ◽

Vol 7 (12) ◽

pp. 312

Author(s):

Maximilian David Mauritz ◽

Carola Hasan ◽

Larissa Alice Dreier ◽

Pia Schmidt ◽

Boris Zernikow

Keyword(s):

Risk Factors ◽

Palliative Care ◽

Young Adults ◽

Scoping Review ◽

Pediatric Patients ◽

Case Reports ◽

Neurological Impairment ◽

Opioid Therapy ◽

Pediatric Palliative Care ◽

Severe Neurological Impairment

Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely used in PPC. Nonetheless, there is considerable uncertainty regarding the opioid-related side effects in pediatric patients with SNI, particularly concerning Opioid-Induced Respiratory Depression (OIRD). Research on pain and OIRD in pediatric patients with SNI is limited. Using scoping review methodology, we performed a systematic literature search for OIRD in pediatric patients with SNI. Out of n = 521 identified articles, n = 6 studies were included in the review. Most studies examined the effects of short-term intravenous opioid therapy. The incidence of OIRD varied between 0.13% and 4.6%; besides SNI, comorbidities, and polypharmacy were the most relevant risk factors. Additionally, three clinical cases of OIRD in PPC patients receiving oral or transdermal opioids are presented and discussed. The case reports indicate that the risk factors identified in the scoping review also apply to adolescents and young adults with SNI receiving low-dose oral or transdermal opioid therapy. However, the risk of OIRD should never be a barrier to adequate symptom relief. We recommend careful consideration and systematic observation of opioid therapy in this population of patients.

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Cancer patients’ participation and commitment to psychological interventions: a scoping review

Psychology and Health ◽

10.1080/08870446.2021.1916494 ◽

2021 ◽

pp. 1-34

Author(s):

Lucrezia Savioni ◽

Stefano Triberti ◽

Ilaria Durosini ◽

Valeria Sebri ◽

Gabriella Pravettoni

Keyword(s):

Cancer Patients ◽

Scoping Review ◽

Psychological Interventions

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Nurse Burnout in Hospice and Palliative Care: A Scoping Review

Illness Crisis & Loss ◽

10.1177/10541373211039825 ◽

2021 ◽

pp. 105413732110398

Author(s):

Erica Frechman ◽

Patricia M. Wright

Keyword(s):

Professional Development ◽

Palliative Care ◽

Scoping Review ◽

Future Research ◽

Self Awareness ◽

Personal Factors ◽

Workplace Issues ◽

Mitigating Factors ◽

Hospice And Palliative Care ◽

Nursing Professional

Burnout in hospice and palliative care nurses is a growing issue, especially in light of the COVID-19 pandemic. However, few studies have focused specifically on burnout in this population. A scoping review was undertaken to identify what is known about burnout among hospice and palliative care nurses, and to unify disparate findings. Analysis of eight articles revealed three overarching categories: personal factors, organizational/workplace factors, and nursing professional development factors. Each category was then divided into three cross-cutting subcategories: contributory and noncontributory factors, mitigating factors, and workplace issues. Recommendations for individuals include self-care as well as self-awareness of intrinsic characteristics that can predispose one to burnout. Within the workplace, leaders are challenged to support evidence-based practice and ongoing education. Role modeling positive communication skills, effective conflict mitigation, responsiveness, promotion of equity, and workplace commitment also help to create a culture of wellness. Nursing professional development may aid in resilience-building, and promotion of self-efficacy, self-confidence, and assertiveness. Although all identified recommendations were derived from the literature, no interventional studies have been conducted to test the effects of suggested interventions. Future research should include interventional studies as well as qualitative research to capture nuanced experiences of burnout in hospice and palliative care nurses.

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The use of telemedicine for home-based palliative care for children with serious illness: a scoping review

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2020.12.004 ◽

2020 ◽

Author(s):

Kimberly A. Miller ◽

Jennifer Baird ◽

Jessica Lira ◽

Josseline Herrera Eguizabal ◽

Shangnon Fei ◽

...

Keyword(s):

Palliative Care ◽

Scoping Review ◽

Serious Illness ◽

Home Based

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On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

Journal of Palliative Care ◽

10.1177/0825859718804108 ◽

2018 ◽

Vol 34 (1) ◽

pp. 62-69 ◽

Cited By ~ 7

Author(s):

Erin Relyea ◽

Brooke MacDonald ◽

Christina Cattaruzza ◽

Denise Marshall

Keyword(s):

Health Care ◽

Palliative Care ◽

Access To Care ◽

End Of Life ◽

Health Care Providers ◽

Scoping Review ◽

End Of Life Care ◽

Psychosocial Interventions ◽

Life Care ◽

Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

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Elements of Social Convoy Theory in Mobile Health for Palliative Care: Scoping Review

JMIR mhealth and uhealth ◽

10.2196/16060 ◽

2020 ◽

Vol 8 (1) ◽

pp. e16060 ◽

Cited By ~ 1

Author(s):

Jennifer D Portz ◽

Kira Elsbernd ◽

Evan Plys ◽

Kelsey Lynett Ford ◽

Xuhong Zhang ◽

...

Keyword(s):

Palliative Care ◽

Family Support ◽

Mobile Health ◽

Scoping Review ◽

Family Caregiving ◽

Mobile Apps ◽

Team Approach ◽

Diverse Backgrounds ◽

Meta Analyses ◽

Patient Use

Background Mobile health (mHealth) provides a unique modality for improving access to and awareness of palliative care among patients, families, and caregivers from diverse backgrounds. Some mHealth palliative care apps exist, both commercially available and established by academic researchers. However, the elements of family support and family caregiving tools offered by these early apps is unknown. Objective The objective of this scoping review was to use social convoy theory to describe the inclusion and functionality of family, social relationships, and caregivers in palliative care mobile apps. Methods Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines, a systematic search of palliative care mHealth included (1) research-based mobile apps identified from academic searches published between January 1, 2010, and March 31, 2019 and (2) commercially available apps for app stores in April 2019. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria. Abstracted data covered app name, research team or developer, palliative care element, target audience, and features for family support and caregiving functionality as defined by social convoy theory. Results Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified. Commercially available apps were most commonly designed for both patients and social convoys, whereas the majority of research apps were designed for patient use only. Conclusions Results suggest there is an emerging presence of apps for patients and social convoys receiving palliative care; however, there are many needs for developers and researchers to address in the future. Although palliative care mHealth is a growing field, additional research is needed for apps that embrace a team approach to information sharing, target family- and caregiver-specific issues, promote access to palliative care, and are comprehensive of palliative needs.

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Complexity In The Context of Palliative Care: A Scoping Review

10.21203/rs.3.rs-969011/v1 ◽

2021 ◽

Author(s):

Hironori Ohinata ◽

Maho Aoyama ◽

Mitsunori Miyashita

Keyword(s):

Palliative Care ◽

Scoping Review ◽

Healthcare Providers ◽

The United States ◽

Patient Specific ◽

Future Research ◽

Care Needs ◽

Living Situation ◽

Research Activities ◽

Specific Factors

Abstract Background: Understanding the factors of complexity of patients in palliative care is very important for healthcare providers in addressing the care needs of their patients. However, the healthcare providers’ perception of the factors of complexity in palliative care lacks a common understanding. This study aimed to determine the scope of research activities and specific factors of complexity in the context of palliative care.Methods: A scoping literature review was performed, following the methods described by the Joanna Briggs Institute. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO, Web of Science Core Collection, and CINAHL, examining literature from May 1972 to 2020.Results: We identified 32 peer-reviewed articles published in English before 2020. The target literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We reviewed 32 studies and summarized the factors of complexity into three levels: the patient’s level, the healthcare setting level, and the socio-cultural landscape level. We identified factors affecting patient-specific complexity, including sex, race, age, living situation, family burden, resources, treatment, decision-making, communication, prognosis, disease, and comorbidity/complexity. Other factors identified as contributing to patient complexity were the interaction of physical, psychological, social, and spiritual categories, as well as the healthcare providers’ confidence and skills, and the socio-cultural components.Conclusions: This scoping review shows specific factors of complexity and future challenges in the context of palliative care. Future research should include the factors of complexity identified in this review and conduct longitudinal studies on the interactions among them. In addition, it is necessary to examine specific complexity factors in patients from various social and ethnic backgrounds.

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