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Background: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. Aim: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. Design: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). Data sources: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). Results: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. Conclusion: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes. [ABSTRACT FROM AUTHOR]

Background: Several clinician training interventions have been developed in the past decade to address serious illness communication. While numerous studies report on clinician attitudes and confidence, little is reported on individual education modalities and their impact on actual behavior change and patient outcomes. Aim: To examine what is known about the education modalities used in serious illness communication training and their impact on clinician behaviors and patient outcomes. Design: A scoping review using the Joanna Briggs Methods Manual for Scoping Reviews was conducted to examine studies measuring clinician behaviors or patient outcomes. Data sources: Ovid MEDLINE and EMBASE databases were searched for English-language studies published between January 2011 and March 2023. Results: The search identified 1317 articles: 76 met inclusion criteria describing 64 unique interventions. Common education modalities used were: single workshop (n = 29), multiple workshops (n = 11), single workshop with coaching (n = 7), and multiple workshops with coaching (n = 5); though they were inconsistently structured. Studies reporting improved clinician skills tended to be in simulation settings with neither clinical practice nor patient outcomes explored. While some studies reported behavior changes or improved patient outcomes, they did not necessarily confirm improvements in clinician skills. As multiple modalities were commonly used and often embedded within quality improvement initiatives, the impact of individual modalities could not be determined. Conclusion: This scoping review of serious illness communication interventions found heterogeneity among education modalities used and limited evidence supporting their effectiveness in impacting patient-centered outcomes and long-term clinician skill acquisition. Well-defined educational modalities and consistent measures of behavior change and standard patient-centered outcomes are needed. [ABSTRACT FROM AUTHOR]

Background: The impact of assisted hydration on symptoms and survival at the end of life is unclear. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration near end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting these should occur with all dying people. Aim: To explore the views and experiences of doctors experienced in end-of-life care regarding communicating with patients and families and making decisions about assisted hydration at the end of life. Design: Qualitative study involving framework analysis of data from semi-structured interviews. Setting/participants: Sixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from hospitals, hospices and community services from October 2019 to October 2020. Results: Participants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides barriers to high-quality communication with dying patients and their families about assisted hydration, which may contribute to the low incidence of documented assisted hydration-related conversations. Workplace culture in some hospices may make truly individualised decision-making about this topic more difficult. Lack of inclusion of patients in decision-making about assisted hydration appears to be common practice. Conclusions: Proactive, routine discussion with dying people about hydration-related issues is indicated in all cases. There is room for debate regarding the limits of shared decision-making and the benefits of routine discussion of assisted hydration with all dying people. Clinicians have to navigate multiple barriers as they strive to provide individualised care. [ABSTRACT FROM AUTHOR]

Background: Palliative care professionals have had to adapt to rapidly changing COVID-19 restrictions with personal protective equipment and physical distancing measures impacting face-to-face communication with patients and relatives. Aim: To explore the narratives of palliative care doctors working during the pandemic to understand their experiences at a personal and professional level. Design: In-depth narrative interviews were carried out via video call. Interviews were transcribed verbatim and analysed using a joint paradigmatic and narrative approach to elucidate common themes and closely explore individual narratives. Setting/participants: Eight palliative care doctors who had worked on a hospice inpatient unit in the UK before and during the pandemic were recruited from two hospices in Scotland. Results: Three intersecting themes are described, the most significant being moral distress. Participants articulated a struggle to reconcile their moral convictions with the restrictions enforced, for example, wanting to provide support to patients through physical proximity but being unable to. To differing degrees, this resulted in internal conflict and emotional distress. Two further themes arose: the first concerned a loss of humanity in interaction and a striving to re-humanise communication through alternative means; the second being a change in staff morale as the pandemic progressed. Conclusions: Restrictions had a considerable impact on palliative care doctors' ability to communicate with and comfort patients which led to moral distress and contributed to decreasing morale. Future research could explore moral distress in palliative care settings internationally during the pandemic with a view to compare the factors affecting how moral distress was experienced. [ABSTRACT FROM AUTHOR]

Background: Lesbian, gay, and bisexual (LGB) older women have unmet communication needs around palliative and end-of-life care. Past research has found communication differences for LGB women patients. Consequently, older LGB women may experience healthcare communication barriers around advance care planning. Aim: To explore experiences of bereaved LGB older women to understand perspectives regarding advance care planning communication between clinicians, patients, and dyads. Design: Guided by queer gerontology as a theoretical framework, this qualitative descriptive study employed individual interviews with purposively recruited participants. Interviews were conducted in person using a semi structured protocol and analyzed using inductive thematic analysis. Setting/participants: Sixteen LGB women, age 60 years or older from across the United States who had lost a spouse/partner within the past 5 years. Results: Four main themes emerged from the transcripts, LGB older women: (1) experience unclear advance care planning communication and end-of-life care support from clinicians, (2) often avoid advance care planning discussions with spouse or partners, (3) lack of knowledge about palliative or end-of-life care, and (4) have more positive experiences when there is consistent communication with spouse or partner and clinicians during a spouse/partner's illness and end-of-life. Discussion: While certain experiences and opinions may reflect those of non-LGB older adults, novel advance care planning barriers exist for LGB older women. Greater understanding among clinicians is needed regarding advance care planning conversations with LGB dyads. We recommend four improvements in training, recognition, acceptance, and dyad-based communication interventions. [ABSTRACT FROM AUTHOR]

Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. Aim: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care. Design: Exploratory inductive thematic analysis of 101 audio-recorded conversations. Setting/participants: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated. Results: We identified eight relevant and distinct communicative behaviors. Doctors' sequential communicative behaviors either reflected consistent approaches—a shared approach or a physician-driven approach—or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families' decision-making preferences. Conclusions: Even though tailoring doctors' communication to families' preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors' awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors' skills in tactfully exploring families' decision-making preferences and in mutually sharing knowledge, values, and treatment preferences. [ABSTRACT FROM AUTHOR]

Background: In 2020, the COVID-19 pandemic caused an acute risk of deterioration and dying for many, and an urgent need to start advance care planning. Aim: To explore how general practitioners (GPs) experienced discussing values, goals and preferences with patients during COVID-19. Design and setting: Qualitative research in general practice. Methods: Semi-structured interviews for which Dutch GPs were recruited via purposive sampling. Content analysis was used. Results: Fifteen GPs were interviewed. Six themes were identified: (i) urge of advance care planning, (ii) the GP's perceived role in it, (iii) preparations for it, (iv) (proactively) discussing it, (v) essentials for good communication and (vi) advance care planning in the (near) future. Calls for proactively discussing advance care planning in the media and in COVID-guidelines caused awareness of it's importance. GPs envisaged an important role for themselves in initiating it, especially with patients at risk to deteriorate or die from COVID-19. Timing advance care planning appeared difficult but crucial. The recommended digital way of communication was considered problematic due to missing nonverbal communication and difficulties in involving relatives. It was noted that admission to the ICU, which was hardly discussed before the COVID-19 pandemic, should remain a topic during advance care planning. Conclusion: The COVID-19 pandemic brought advance care planning into a new light, GPs were more experienced with discussing it and patients were more aware of their frailty. Because of the nearing 'grey wave', advance care planning should remain top priority. Therefore, it should be central in GP and post-academic training. [ABSTRACT FROM AUTHOR]