Palliative MedicinePub Date : 2024-07-01Epub Date: 2024-06-04DOI: 10.1177/02692163241257583
Ross Walker-Pow, Andrea Bruun, Nuriye Kupeli, Alessandro Bosco, Nicola White
{"title":"A systematic review on the impact of financial insecurity on the physical and psychological well-being for people living with terminal illness.","authors":"Ross Walker-Pow, Andrea Bruun, Nuriye Kupeli, Alessandro Bosco, Nicola White","doi":"10.1177/02692163241257583","DOIUrl":"10.1177/02692163241257583","url":null,"abstract":"<p><strong>Background: </strong>People living with terminal illness are at higher risk of experiencing financial insecurity. The variance in definitions of financial insecurity, in addition to its impact on the well-being of this population has not yet been systematically analysed.</p><p><strong>Aim: </strong>To understand the definition, prevalence and impact of financial insecurity on the physical and psychological well-being of people living with terminal illness.</p><p><strong>Design: </strong>A systematic review with a narrative synthesis (prospectively registered; CRD42023404516).</p><p><strong>Data sources: </strong>Medline, Embase, CINAHL, AMED, PsycINFO, ProQuest Central and Cochrane Central Register of Controlled Trials, from inception to May 2023. Included studies had to measure or describe the impact of financial insecurity on an aspect of participants' physical or mental well-being. Study quality was assessed using the Hawker tool.</p><p><strong>Results: </strong>A total of 26 studies were included in the review. Financial insecurity was defined using many different definitions and terminology. Out of 4824 participants, 1126 (23%) reported experiencing high levels of financial insecurity. Nine studies reported 21 unique analyses across three domains of physical well-being. Out of those 21 analyses, 10 (48%) reported a negative result (an increase in financial insecurity was reported with a decrease in physical well-being). Twenty-one studies reported 51 unique analyses across nine domains of psychological well-being. Out of these analyses, 35 (69%) reported a negative result (an increase in financial insecurity was reported with a decrease in psychological well-being).</p><p><strong>Conclusions: </strong>People living with terminal illness require support with their financial situation to ensure their well-being is not negatively impacted by financial insecurity.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"692-710"},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11290032/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141248330","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-07-01Epub Date: 2024-06-04DOI: 10.1177/02692163241257580
Greg Barclay, Michael Barbato, Rachel Yerbury, Laura Harnish, Nilda Miranda
{"title":"Bispectral Index monitoring of palliative sedation for home withdrawal of tracheostomy ventilation: A case report.","authors":"Greg Barclay, Michael Barbato, Rachel Yerbury, Laura Harnish, Nilda Miranda","doi":"10.1177/02692163241257580","DOIUrl":"10.1177/02692163241257580","url":null,"abstract":"<p><strong>Background: </strong>Tracheostomy ventilation in motor neurone disease is an uncommon life-sustaining treatment. Best practice is having a plan for ventilation withdrawal, but the literature to guide practice is limited. Case reports have documented standard doses of opioids and benzodiazepines used for sedation in such cases.</p><p><strong>Case: </strong>A 49-year-old man was diagnosed with motor neurone disease in 2016. He commenced tracheostomy ventilation in 2018. In 2022 and 2023, planning was undertaken, at the patient's request, for withdrawal of tracheostomy ventilation at home, when he was no longer able to communicate with technology.</p><p><strong>Case planning: </strong>Planning included Bispectral Index monitoring prior to cessation of ventilation, ensuring this only occurred when deep sedation was achieved. After ventilation withdrawal in 2023, a retrospective review of medications given and his level of sedation on monitoring was undertaken, with family consent.</p><p><strong>Outcome: </strong>Ventilation withdrawal was initiated after deep sedation was achieved, 6 h after commencing subcutaneous infusions of morphine, midazolam, clonazepam and phenobarbital.</p><p><strong>Lessons: </strong>Doses required to achieve acceptable sedation exceeded literature reports. Achieving deep sedation was a longer than expected process.</p><p><strong>Conclusion: </strong>More research using an objective measure of sedation is required, as clinical assessment of sedation in this context is compromised.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"755-758"},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141248234","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-07-01Epub Date: 2024-06-19DOI: 10.1177/02692163241259667
Jodie Crooks, Kate Flemming, Caroline Shulman, Emma Casey, Briony Hudson
{"title":"Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.","authors":"Jodie Crooks, Kate Flemming, Caroline Shulman, Emma Casey, Briony Hudson","doi":"10.1177/02692163241259667","DOIUrl":"10.1177/02692163241259667","url":null,"abstract":"<p><strong>Background: </strong>Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed.</p><p><strong>Aim: </strong>To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness.</p><p><strong>Design: </strong>A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis.</p><p><strong>Setting/participants: </strong>Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness.</p><p><strong>Results: </strong>Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations).</p><p><strong>Conclusions: </strong>Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"746-754"},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11290014/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141427389","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-07-01Epub Date: 2024-06-22DOI: 10.1177/02692163241259649
Miriam J Johnson, David C Currow, Jade Chynoweth, Helen Weatherly, Gamze Keser, Ann Hutchinson, Annie Jones, Laurie Dunn, Victoria Allgar
{"title":"The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.","authors":"Miriam J Johnson, David C Currow, Jade Chynoweth, Helen Weatherly, Gamze Keser, Ann Hutchinson, Annie Jones, Laurie Dunn, Victoria Allgar","doi":"10.1177/02692163241259649","DOIUrl":"10.1177/02692163241259649","url":null,"abstract":"<p><strong>Introduction: </strong>Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases.</p><p><strong>Aim: </strong>To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics.</p><p><strong>Design: </strong>National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs.</p><p><strong>Setting/participants: </strong>Adult national survey respondents - England.</p><p><strong>Results: </strong>A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of <i>personal care</i> and <i>other help</i> were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for <i>other help</i> only.</p><p><strong>Conclusion: </strong>We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"725-736"},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141440777","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-07-01Epub Date: 2024-05-30DOI: 10.1177/02692163241255511
Jacqueline Birtwistle, Matthew J Allsop, Andy Bradshaw, Pablo Millares Martin, Katherine E Sleeman, Maureen Twiddy, Catherine J Evans
{"title":"Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.","authors":"Jacqueline Birtwistle, Matthew J Allsop, Andy Bradshaw, Pablo Millares Martin, Katherine E Sleeman, Maureen Twiddy, Catherine J Evans","doi":"10.1177/02692163241255511","DOIUrl":"10.1177/02692163241255511","url":null,"abstract":"<p><strong>Background: </strong>Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care.</p><p><strong>Aim: </strong>To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development.</p><p><strong>Design: </strong>A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews.</p><p><strong>Setting/participants: </strong>Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents.</p><p><strong>Results: </strong>Four generated themes included: 1. '<i>Why haven't you read what's wrong with me?</i>'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having '<i>a say in matters</i>': control and responsibility; 4. Enabling patient and carer control of their records: '<i>custodianship is key</i>'.</p><p><strong>Conclusions: </strong>Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"711-724"},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11290031/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141174472","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Psychological health in <i>Palliative Care</i>: Thematic analysis of a psychiatrist's and an art therapist's clinical reflexive journals.","authors":"Wen Phei Lim, Roxanne Jia Yu Chew, Clare O'Callaghan","doi":"10.1177/02692163241259632","DOIUrl":"10.1177/02692163241259632","url":null,"abstract":"<p><strong>Background: </strong>Patients receiving palliative care often face psychological distress, which can be challenging for clinicians to manage. Therefore, reflexive and visual journaling can be used as powerful techniques for clinician selfreflection and personal development. These journals are a form of practice wisdom, providing insights into psychological health in palliative care.</p><p><strong>Aim: </strong>This study aims to describe how patients receiving palliative care experience psychological health, explore the meaning of a palliative care clinician's work and contribute to the understanding of psychological health in palliative care through the reflexive and visual journals of clinicians.</p><p><strong>Design: </strong>Using Gibb's reflective cycle as a framework for journaling, this study employs reflexive and visual journaling through the lenses of a psychiatrist and an art therapist. Journal data were analysed using a thematic analysis approach.</p><p><strong>Setting/participants: </strong>The two first authors journaled 107 clinical encounters and created 36 pieces of response art detailing encounters with patients and their families, and clinical conversations in two palliative care centres.</p><p><strong>Results: </strong>Patient attributes and the clinical environment were observed to influence psychological health in palliative care. The patient's ability to navigate dying, maintain personhood, exert resilience and experience satisfying relationships contribute to psychological health. A clinical environment comprising clinicians with holistic competencies, systems promoting interdisciplinary collaborations and a values-based culture that promotes patient centricity strengthens the delivery of psychological care.</p><p><strong>Conclusions: </strong>Good psychological health in palliative care extends beyond psychopathology and is influenced by the cardinal elements of being human, value systems and systemic elements in the therapeutic environment.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"737-745"},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141427390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Andrea Bruun, Amanda Cresswell, Leon Jordan, Richard Keagan-Bull, Jo Giles, Sarah L Gibson, Rebecca Anderson-Kittow, Irene Tuffrey-Wijne
{"title":"What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.","authors":"Andrea Bruun, Amanda Cresswell, Leon Jordan, Richard Keagan-Bull, Jo Giles, Sarah L Gibson, Rebecca Anderson-Kittow, Irene Tuffrey-Wijne","doi":"10.1177/02692163241250218","DOIUrl":"10.1177/02692163241250218","url":null,"abstract":"<p><strong>Background: </strong>Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning.</p><p><strong>Aim: </strong>To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services.</p><p><strong>Design: </strong>A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities.</p><p><strong>Setting/participants: </strong>A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK.</p><p><strong>Results: </strong>There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying.</p><p><strong>Conclusions: </strong>To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":"38 6","pages":"669-678"},"PeriodicalIF":4.4,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11157974/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141262580","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-06-01Epub Date: 2024-05-09DOI: 10.1177/02692163241248725
Rinat Nissim, Paige Chu, Alison Stere, Eryn Tong, Ekaterina An, Debbie Selby, Sally Bean, Elie Isenberg-Grzeda, Gary Rodin, Madeline Li, Sarah Hales
{"title":"\"Walk me through the final day\": A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day.","authors":"Rinat Nissim, Paige Chu, Alison Stere, Eryn Tong, Ekaterina An, Debbie Selby, Sally Bean, Elie Isenberg-Grzeda, Gary Rodin, Madeline Li, Sarah Hales","doi":"10.1177/02692163241248725","DOIUrl":"10.1177/02692163241248725","url":null,"abstract":"<p><strong>Background: </strong>Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training.</p><p><strong>Aim: </strong>The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day.</p><p><strong>Design: </strong>Qualitative, thematic analysis, research using semi-structured interviews.</p><p><strong>Setting/participants: </strong>Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews.</p><p><strong>Results: </strong>While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day.</p><p><strong>Conclusions: </strong>This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"660-668"},"PeriodicalIF":4.4,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11158002/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140892228","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-06-01Epub Date: 2024-05-06DOI: 10.1177/02692163241248735
Lucy Coombes, Debbie Braybrook, Daney Harðardóttir, Hannah May Scott, Katherine Bristowe, Clare Ellis-Smith, Lorna K Fraser, Julia Downing, Myra Bluebond-Langner, Fliss Em Murtagh, Richard Harding
{"title":"Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.","authors":"Lucy Coombes, Debbie Braybrook, Daney Harðardóttir, Hannah May Scott, Katherine Bristowe, Clare Ellis-Smith, Lorna K Fraser, Julia Downing, Myra Bluebond-Langner, Fliss Em Murtagh, Richard Harding","doi":"10.1177/02692163241248735","DOIUrl":"10.1177/02692163241248735","url":null,"abstract":"<p><strong>Background: </strong>The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing.</p><p><strong>Aim: </strong>To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability.</p><p><strong>Design: </strong>Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques.</p><p><strong>Setting/participants: </strong>Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites.</p><p><strong>Results: </strong>Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important.</p><p><strong>Conclusion: </strong>Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"644-659"},"PeriodicalIF":4.4,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11158001/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140865413","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-06-01Epub Date: 2024-03-07DOI: 10.1177/02692163241234227
Slavica Kochovska, Fliss Em Murtagh, Meera Agar, Jane L Phillips, Deborah Dudgeon, Sanja Lujic, Miriam J Johnson, David C Currow
{"title":"Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research.","authors":"Slavica Kochovska, Fliss Em Murtagh, Meera Agar, Jane L Phillips, Deborah Dudgeon, Sanja Lujic, Miriam J Johnson, David C Currow","doi":"10.1177/02692163241234227","DOIUrl":"10.1177/02692163241234227","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice.</p><p><strong>Proposal: </strong>Based on an informal consensus process by active palliative care researchers challenged by this problem and a review of the current evidence, we propose an approach to creating more comparable cohorts in observational (non-randomised) palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built ('anchoring'). In addition to providing a detailed and complete description of the study population, anchoring is <i>the</i> critical step in creating more comparable cohorts in observational palliative care studies. Anchoring can be done with respect to a single or multiple data points, and can support both prospective and retrospective data collection and analysis.</p><p><strong>Discussion: </strong>Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"617-624"},"PeriodicalIF":4.4,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11157983/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140060095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}