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Original Article
The perceptions of cancer health-care practitioners in New Zealand and the USA toward psychedelic-assisted therapy with cancer patients: A cross-sectional survey
- Lisa M. Reynolds, Brian Barnett, Jeremy Weleff, Eva Morunga, Alesha Wells, Aideen Stack, Amelia Akroyd, Nicholas Hoeh, Frederick Sundram, Suresh Muthukumaraswamy, Nicola Lawrence, William J. Evans
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- Published online by Cambridge University Press:
- 03 November 2022, pp. 1-10
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Objectives
A resurgence of research investigating the administration of psychedelic compounds alongside psychotherapy suggests that this treatment is a promising intervention for anxiety, depression, and existential distress in people with cancer. However, psychedelic treatment that induces a mind-altering experience potentially poses barriers to vulnerable cancer patients, and health-care practitioners may have concerns about referring their patients to trials investigating this approach. The aim of the current study was to investigate the perceptions of cancer health-care practitioners based in New Zealand and the USA related to psychedelic-assisted therapy.
MethodsThis study utilized a cross-sectional survey of cancer health-care practitioners in New Zealand and the USA via convenience sampling to identify their perceptions about the concept of conducting psychedelic-assisted therapy with cancer patients.
ResultsParticipants perceived that (1) psychedelic-assisted therapy has the potential to provide benefit for cancer patients, (2) research in this area across a variety of domains is important, (3) work should consider spiritual and indigenous perspectives of health, and (4) there was willingness to refer patients to trials in this area, especially patients with advanced disease who were no longer going through curative treatment. Participants in the USA had greater awareness of psychedelics than the New Zealand sample; however, New Zealand participants more strongly believed that spiritual/indigenous factors should be considered in psychedelic-assisted therapy.
Significance of resultsCancer health-care practitioners in our sample considered research investigating the potential for psychedelic-assisted therapies to be important and may be more open to studies that start in palliative and end-of-life contexts.
Self-compassion training in palliative care during COVID-19: A pilot study
- Margaret O’Connor, Kaori Shimoinaba, Yaping Zhong, Suzanne Peyton
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- Published online by Cambridge University Press:
- 13 October 2022, pp. 1-6
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Objectives
This pilot project replicated a self-compassion program to support health-care professionals in palliative care settings. We anticipated that undertaking this program would enhance participants’ psychological well-being.
MethodsParticipants were recruited by convenience sampling from palliative care services in an area of Melbourne, Australia. Because of the COVID-19 pandemic, the program was offered online and comprised six once-weekly gatherings. Three survey rounds with identical questions were conducted prior to, immediately after, and 3 months after the training. The surveys consisted of 6 scales: the Self-Compassion Scale, the Santa Clara Brief Compassion Scale, the Cognitive and Affective Mindfulness Scale, the Depression Anxiety Stress Scale, the Professional Quality of Life Scale, and the Interpersonal Reactivity Index Scale. Paired-sample t-test and repeated measures analysis of variance analyses were used to compare participant responses.
ResultsNine participants working in palliative care completed the training and 3 surveys and included qualitative responses. The experience was overwhelmingly positive. Self-compassion (F = 14.44; p < 0.05) and mindfulness (F = 18.44; p < 0.05) scores significantly increased post-training, were picked up in a short time and endured. The emotional state improved by compassion satisfaction, showing a positive improvement 3 months post-training, along with there being no changes in compassion satisfaction, burnout, and dispositional empathy.
Significance of resultsParticipants all worked in a supportive environment, which encouraged self-care. Even against the pandemic difficulties, a short online program was effective, assisting participants to cultivate their inner resources in mindfulness and self-compassion. While a small sample size, expansion of the training may benefit the wider palliative care workforce.
Spiritual needs, spiritual well-being, and Buddhist practices of patients with terminal illness, Thailand
- Piyawan Pokpalagon, Suchira Chaiviboontham, Noppawan Phinitkhajorndech
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- Published online by Cambridge University Press:
- 30 September 2022, pp. 1-8
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Objectives
The purposes of this study were to describe and compare the spiritual needs and spiritual well-being among terminally ill patients receiving care in different palliative care settings and to investigate the differences in spiritual well-being in relation to the level of Buddhist practices.
MethodsA cross-sectional multicenter study was carried out that included community/home-based care (Home), a faith-based organization for patients with AIDS (FB_AIDS), a faith-based organization for patients with cancer (FB_CA), and a hospice ward (Hospice). Descriptive statistics were used to analyze the participants’ demographics, Buddhist practices, spiritual needs, and spiritual well-being. The analysis was performed using analysis of variance and Kruskal–Wallis tests to compare the spiritual needs and the spiritual well-being in the different settings. The Kruskal–Wallis test was used to investigate the differences in spiritual well-being in relation to the level of Buddhist practices.
ResultsA total of 170 patients with a terminal illness (30 Home, 33 FB_AIDS, 64 FB_CA, and 43 Hospice) participated. Patients with a terminal illness receiving care at the FB_CA and Home had significantly higher mean scores for spiritual needs than those in the other settings. Patients with a terminal illness receiving care at the FB_CA had a significantly higher mean score for spiritual well-being than those receiving care in the other settings. Participants having a higher frequency of Buddhist practice had significantly higher mean scores for spiritual well-being.
Significance of resultsSpiritual needs and spiritual well-being differed significantly among participants in different palliative care settings. The more the patients engaged in Buddhist practices, the higher their scores were for spiritual well-being. Thus, religious-based strategies should be integrated into palliative care and should be more emphasized.
Prevalence and factors associated with demoralization in palliative care patients: A cross-sectional study from Hong Kong
- Wallace Chi Ho Chan, Clare Tsz Kiu Yu, Denis Ka Shaw Kwok, Jamie Kit Ming Wan
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- Published online by Cambridge University Press:
- 02 September 2022, pp. 1-9
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Objectives
Although demoralization is common among palliative care patients, it has not yet been examined empirically in the Hong Kong Chinese context. This study aims to examine (1) the prevalence of demoralization among community-dwelling palliative care patients in Hong Kong; (2) the percentage of palliative care patients who are demoralized but not depressed and vice versa; and (3) the association of socio-demographic factors, particularly family support, with demoralization.
MethodA cross-sectional study targeting community-living palliative care patients in Hong Kong was conducted. A total of 54 patients were recruited by a local hospice and interviewed for completing a questionnaire which included measures of demoralization, depression, perceived family support, and demographic information.
ResultsThe prevalence of demoralization was 64.8%. Although there was overlap between demoralization and depression (52.8% meeting the criteria of both), 7.5% of depressed patients were not demoralized, and 13.2% of demoralized patients were not depressed. Participants who were not single and had more depressive symptoms and less family support had a significantly higher demoralization level.
Significance of resultsThis is the first study which reports the prevalence of demoralization in Hong Kong. Demoralization was found common in community-living palliative care patients receiving medical social work services in Hong Kong. This study provides evidence of the importance of differentiating the constructs between demoralization and depression. It also provides an implication that those who are married, more depressed, and have the least family support could be the most vulnerable group at risk of demoralization. We recommend that early assessment of demoralization among palliative care patients be considered.
Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?
- Savithri Nageswaran, William A. Gower, Nancy M. P. King, Shannon L. Golden
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- Published online by Cambridge University Press:
- 24 August 2022, pp. 1-7
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Objectives
Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.
MethodsThis qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes.
ResultsCaregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers.
Significance of resultsCaregivers’ need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.
The WHOQOL-BREF instrument: Psychometric evaluation of the Greek version in patients with advanced cancer and pain and associations with psychological distress
- Vassiliki Siafaka, Dimitris Mavridis, Orestis Tsonis, Eleftheria Tzamakou, Christos Christogiannis, Louiza Tefa, Eleni Arnaoutoglou, Petros Tzimas, George Pentheroudakis
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- Published online by Cambridge University Press:
- 19 August 2022, pp. 1-11
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Objectives
Assessment of the psychometric characteristics of the Greek version of the brief World Health Organization Quality of Life Instrument (WHOQOL-BREF) in patients with advanced cancer and pain, and exploration of the association between psychological distress and quality of life (QoL).
MethodThe sample consisted of 145 patients with advanced cancer and pain who completed the WHOQOL-BREF, the Symptom Checklist-90 (SCL-90), and the Pain Visual Analogue Scale (VAS). In analysis, the following methods were used: Cronbach's alpha, Item Response Theory (IRT), polychoric, Pearson and polyserial correlation, t-test, and Linear regression.
ResultsThe internal consistency was high for all domains of the WHOQOL-BREF (Cronbach's α ≥ 0.731). Similarly, with the exception of three items, the WHOQOL-BREF items has large discrimination parameters suggesting that they have a high ability in differentiating subjects. On SCL-90, the three dimensions with the highest scores were Depression, Somatization, and Anxiety. The overall score for psychological distress, the Global Severity Index (GSI), showed significant negative association with all the WHOQOL-BREF factor scores (Physical Health: B = −1.488, p < 0.001, Psychological Health: B = −1.688, p < 0.001, Social Relationships: B = −0.910, p < 0.001, Environment: B = −1.064, p < 0.001). Male gender was associated with lower scores for Social Relationships (B = −0.358, p = 0.007) and Environment (B = −0.293, p = 0.026).
Significance of resultsThe Greek version of the WHOQOL-BREF showed good psychometric properties in patients with advanced cancer and can be used as a reliable instrument in clinical practice. The level of psychological distress can be considered a determinant of QoL in patients with advanced cancer and pain, independently of pain intensity or other clinical characteristics. In cancer, the disease process can activate multiple physiological and psychological mechanisms that lead to a wide range of symptoms of psychological distress. To improve their QoL, psychological intervention focused on the identification and alleviation of psychological distress in patients with advanced cancer, and help in finding meaning in their experience, should be provided.
Cervical cancer survivors: The experiences of the journey
- Shiri Shinan-Altman, Inbar Levkovich, Yaira Hamama-Raz
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- Published online by Cambridge University Press:
- 17 August 2022, pp. 1-8
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Objective
Cervical cancer affects survivors’ overall coping. Yet, specifically emotional and behavioral expression patterns among cervical cancer survivors have barely been examined. In addition, no study has focused on survivors’ experiences of sequences related to coping. Understanding these perceptions can help provide a tailored response and improve psycho-social interventions. The aim of this study was to gain a better understanding of the emotional and behavioral motives involved in coping with cervical cancer recovery.
MethodsQualitative interviews were conducted with 15 survivors of cervical cancer (stages I and II), using a semi-structured in-depth questionnaire. The interviews were recorded, transcribed, and analyzed by three researchers using thematic analysis.
ResultsSix main themes emerged: (i) Reasons and benefits for keeping the disease a secret or sharing it with others; (ii) “When you get used to despair, there's also room for hope”: Despair alongside hope; (iii) Self-guilt following the disease, but also knowing how to forgive yourself; (iv) Deep loneliness alongside a significant need for support; (v) Finding the way from passivity to activity; and (vi) When meaning in life is missing, and the importance of meaning when it is present. There was a balance between negative emotions and behaviors (despair, confidentiality, guilt, loneliness, passivity, lack of meaning) and positive emotions and behaviors (hope, openness, forgiveness, significant support, activity, meaning).
Significance of the resultsThe study revealed that in some cases cervical cancer coping during the recovery period moves across sequences. The women's narratives portray past difficulties as the reason for present psychological health, and their experience of a healthy present is intensified by their past difficulties. Implications for practice are discussed.
How do trained palliative care providers experience open desire to die-conversations? An explorative thematic analysis
- Kathleen Boström, Thomas Dojan, Carolin Rosendahl, Leonie Gehrke, Raymond Voltz, Kerstin Kremeike
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- Published online by Cambridge University Press:
- 09 August 2022, pp. 1-9
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Objectives
Despite the potential benefits of open communication about possible desires to die for patients receiving palliative care, health professionals tend to avoid such conversations and often interpret desires to die as requests for medical aid in dying. After implementing trainings to foster an open, proactive approach toward desire to die, we requested trained health professionals to lead and document desire to die-conversations with their patients. In this article, we explore how trained health professionals experience an open (proactive) approach to desire to die-conversations with their patients.
MethodsBetween April 2018 and March 2020, health professionals recorded their conversation-experiences on documentation sheets by answering seven open questions. A subsample was invited to offer deeper insights through semi-structured qualitative interviews. Interviews and documentation sheets were transcribed verbatim and analyzed thematically, then findings from both sources were compared and synthesized.
ResultsOverall, N = 29 trained health professionals documented N = 81 open desire to die-conversations. A subsample of n = 13 health professionals participated in qualitative interviews. Desire to die-conversations after the training were reported as a complex but overall enriching experience, illustrated in seven themes: (1) beneficial (e.g., establishing good rapport) and (2) hindering aspects (e.g., patients’ emotional barriers) of desire to die-conversations, (3) follow-up measures, (4) ways of addressing desire to die, as well as (5) patient reactions to it. The interviews offered space for health professionals to talk about (6) content of desire to die-conversation and (7) (self-)reflection (e.g., on patients’ biographies or own performance).
Significance of resultsAs part of an open (proactive) approach, desire to die-conversations hold potential for health professionals’ (self-)reflection and a deeper understanding of patient background and needs. They may lead to a strengthened health professional–patient relationship and potentially prevent suicide.
Creation of a tool to evaluate supportive care
- Damien Giacchero, Guillaume Buiret, Cécile Bartolini-Grosjean, Charles Taieb, Mahasti Saghatchian, Ivan Krakowski
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- Published online by Cambridge University Press:
- 01 August 2022, pp. 1-8
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Rational
The absence of a specific tool to evaluate the impact of supportive care in general and socioesthetics (SE) in particular is undoubtedly at the origin of the lack of published research based on scientific standards.
ObjectiveWe developed a supportive-care, patient-reported outcome questionnaire using the multistep methods, following COSMIN recommendations.
MethodsThe Patient Centricity Questionnaire (PCQ) was developed using the standardized methodology for designing patient-reported outcome (PRO) questionnaires according to the following steps: elaboration of the questionnaire, measurement properties of the questionnaire, internal and external validation, test–retest validation and translation, cross-cultural adaptation, and cognitive debriefing. A multidisciplinary work group was designed including professionals, such as physicians, public health experts, sociologists, supportive-care experts, and socioestheticians.
ResultsOur questionnaire includes 11 items. It is scored by adding each Visual Analogue Scale [VAS], making it range from 0 to 110, with a higher benefit when the score is higher. The Cronbach's α coefficient is 0.88 for the entire questionnaire. As the questionnaire is a reflection of the patient's feelings, it is quite natural that the name “Patient Centricity Questionnaire” (PCQ) was retained and validated by the Scientific Committee. The PCQ correlated negatively and moderately with the Perceived Stress Scale [PSS], positively and moderately with the mental dimension of the Short Form-12, and poorly with the Well Beng 12 [WB12], the physical dimension of the SF-12, and the satisfaction VAS.
ConclusionConstructed according to the recommendations, the PCQ meets the prerequisite for this type of questionnaire. Its short format and simplicity of use allow it to be used by a large number of people. The PCQ is a simple, reliable, easy-to-use, and validated tool for research teams, making it possible for randomized studies to prove the impact of supportive care in general and SE in particular, on the patient's quality of life.
What does the word healing mean to you? Perceptions of patients with life-limiting illness
- Danetta Hendricks Sloan, Karlynn BrintzenhofeSzoc, Erin Mistretta, Justin Cova, Lingsheng Li, Gordon Willis, Meaghann S. Weaver, Ann Berger
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- Published online by Cambridge University Press:
- 01 August 2022, pp. 1-5
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Introduction
There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes.
ObjectivesThe current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words.
MethodsAs a part of a larger study that included cognitive interviewing, we asked the question “what does the word healing mean to you?” Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities.
ResultsThirty participants responded to the question “what does healing mean to you?” Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes.
Significance of resultsProbing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients’ definitions provide greater insight into perceptions and expectations regarding the healing process.
A cross-sectional study of the first two years of mandatory training for doctors participating in voluntary assisted dying
- Lindy Willmott, Rachel Feeney, Patsy Yates, A.M., Malcolm Parker, Katherine Waller, Ben P. White
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- Published online by Cambridge University Press:
- 28 July 2022, pp. 1-7
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Objectives
Voluntary assisted dying (VAD) was legalized in Victoria, Australia, in June 2019. Victoria was the first jurisdiction in the world to require doctors to undertake training before providing VAD. This study examines data from doctors who completed the mandatory training in the first 2 years of the VAD system's operation (up to 30 June 2021). It describes the doctors who are undertaking VAD training, their post-training attitudes toward VAD participation, and their experiences of the mandatory training.
MethodsThrough the online training, doctors completed a short demographic survey and undertook formal assessment of knowledge (90% pass mark). They also were invited to complete an optional survey evaluating the training.
ResultsIn total, 289 doctors passed the training, most commonly males (56%) aged 36–65 years (82%) from an urban location (72%). Most were more than 10 years post fellowship (68%) and practising as general practitioners (51%) or medical oncologists (16%). The training most commonly took 6 h (range 2 h to over 9 h). Most doctors passed the assessment at the first (65%) or second (19%) attempt. Almost all participants (97%) found the training helpful or very helpful and most reported being confident or very confident in their knowledge (93%) and application (88%) of the VAD legislation.
Significance of resultsDoctors reported the training was helpful and improved their confidence in knowing the law and applying it in clinical practice. The profile of trained doctors (particularly their location and specialty) suggests continued growth of participating doctors is needed to facilitate patient access to VAD. It is important that this safeguard does not discourage doctors’ participation.
The Neonatal Palliative Care Attitude Scale: Psychometric properties for Portuguese neonatal nurses
- Fátima Pacheco Sousa, Maria Graça Roldão, Ana Marisa Rebotim, Ana Rita Figueira, Joana Barbosa, Emília Fradique, Maria Alice Santos Curado
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- Published online by Cambridge University Press:
- 12 July 2022, pp. 1-6
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Background
This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses.
MethodsThe research started with a scoping review that allowed the identification of the NiPCAS. It was a methodological study with a quantitative approach. The semantic equivalence of the items was adjusted with the participation of 20 neonatal nurse experts. They performed facial and quantitative content validation. Psychometric validation of the NiPCAS was performed on a nonprobability nurses sample (n = 283) in 13 level 3 neonatal units between July 2021 and February 2022. Confirmatory factor analysis using the polychoric correlation matrix was performed to estimate factor validity using the “lavaan” package for R statistical software. Internal consistency was estimated using Cronbach's alpha coefficient, and item sensitivity was assessed using the asymmetry and kurtosis coefficients. Empirical indices were considered: chi-square over degrees of freedom; comparative fit index; normed fit index; Tucker–Lewis index, and root mean square error of approximation; average extracted variance and composite reliability were used to assess convergent validity.
ResultsAsymmetry and kurtosis were <|3| and <|7|, respectively, suggesting psychometric sensitivity. The convergent validity of the factors was: F1, FCF1 = 0.90 and for F2, FCF2 = 0.80, and a lower value for F3, FCF3 = 0.40. According to the squared correlation criterion average variance extracted (AVE) between the factors, there was no discriminant validity for F1 and F2, but there was discriminant validity for F1, F3, F2, and F3.
Significance of resultsThis instrument has implications for providing end-of-life care to newborns and their families. The use of this instrument reveals several barriers and facilitating elements inherent in the organization and culture of the facility and nursing education.