Palliative MedicinePub Date : 2025-06-01Epub Date: 2025-04-22DOI: 10.1177/02692163251331167
Mostyn Gooley, Belinda Delardes, Sarah Hopkins, James Oswald, Cheryl Cameron, Emily Nehme
{"title":"Palliative paramedicine: An interrupted time series analysis of pre-hospital guideline efficacy.","authors":"Mostyn Gooley, Belinda Delardes, Sarah Hopkins, James Oswald, Cheryl Cameron, Emily Nehme","doi":"10.1177/02692163251331167","DOIUrl":"10.1177/02692163251331167","url":null,"abstract":"<p><strong>Background: </strong>Paramedics are increasingly involved in palliative care and often support community-based palliative care service delivery to facilitate integrated practice. However, the impact of specific palliative care guidelines on clinical practice remains unknown.</p><p><strong>Aim: </strong>To determine the impact of an ambulance service palliative care guideline on rates of supportive medication administration and non-transport.</p><p><strong>Design: </strong>A retrospective cohort study of electronic patient care records from January 2014 to June 2023. Baseline characteristics were compared pre- and post-guideline introduction. Interrupted time series analysis was performed to examine guideline efficacy.</p><p><strong>Setting/participants: </strong>Patients of all ages receiving palliative care who were attended by paramedics in Victoria, Australia.</p><p><strong>Results: </strong>A total of 31,579 patients were included. The median age was 75 years (IQR = 64-84 years), and 56.4% were men. Overall, 25.8% of patients were not transported to hospital. Following guideline introduction, there were no significant trend changes in administration of supportive medications. However, the non-transport rate increased significantly per month (0.2%, <i>p</i> = 0.007), amounting to a 9.9% (<i>p</i> = 0.020) total increase by the end of the study period compared to a scenario in which the guideline had not been introduced. Subgroup analysis of patients diagnosed with 'pain' or attended after-hours also showed significant increases in non-transport (monthly increase: pain 0.3%, <i>p</i> = 0.003; after-hours 0.3%, <i>p</i> < 0.001; total increase: pain 29.7%, <i>p</i> < 0.001, after-hours 22.6%, <i>p</i> = 0.001).</p><p><strong>Conclusions: </strong>Introduction of a palliative care guideline was associated with a decrease in ambulance transport to emergency departments, allowing more patients continuity of care in the community.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"689-699"},"PeriodicalIF":3.6,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12102507/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143993683","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 : 2025-06-01Epub Date: 2025-04-17DOI: 10.1177/02692163251331165
Hannah May Scott, Inez Gaczkowska, Debbie Braybrook, Daney Harðardóttir, Lorna K Fraser, Clare Ellis-Smith, Richard Harding
{"title":"Developing a Theory of Change and Implementation Plan to implement a novel child- and family-centred outcome measure in paediatric palliative care.","authors":"Hannah May Scott, Inez Gaczkowska, Debbie Braybrook, Daney Harðardóttir, Lorna K Fraser, Clare Ellis-Smith, Richard Harding","doi":"10.1177/02692163251331165","DOIUrl":"10.1177/02692163251331165","url":null,"abstract":"<p><strong>Background: </strong>To achieve benefits of person-centred outcome measures within routine children's palliative care, implementation plans and the intended pathways to impact must be established.</p><p><strong>Aim: </strong>To develop a Theory of Change and Implementation Plan for sustained implementation of a novel person-centred outcome measure into routine hospital care for children with life-limiting conditions and to identify potential causal mechanisms.</p><p><strong>Design: </strong>Participatory workshops and a directed content analysis developed a Theory of Change. Framework analysis of workshop qualitative workshop data, supported by Normalisation Process Theory Informed an implementation plan.</p><p><strong>Setting/participants: </strong>Health and social care professionals and parent/carers were recruited to six online workshops through social media and networks.</p><p><strong>Results: </strong>Eight health and social care professionals and eight parents participated. The Theory of Change identified overall impact of improved care and quality of life, through improved identification of symptoms and concerns and improved communication between healthcare teams. However, for this to happen, education and training on the outcome measure, anticipated benefits, how to implement and use it are required. Logistical, resource and staffing barriers must be addressed, alongside the development of a detailed implementation plan. Analysis of workshop transcripts identified seven themes relating to the domains of Normalisation Process Theory: education and information needs, the importance of a tailored approach, stakeholder engagement and the role of champions, healthcare records and IT system support requirements, improved health outcomes, improved experience of care and evidence for service provision, development, evaluation and expansionConclusion:Future work should pilot test the Theory of Change and Implementation Plan.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"709-723"},"PeriodicalIF":3.6,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12102518/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144039922","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 : 2025-06-01Epub Date: 2025-05-10DOI: 10.1177/02692163251341116
Yakubu Salifu, Olufikayo Bamidele
{"title":"Masculinity and ethnicity in intersection: Implications for men's health and palliative care services.","authors":"Yakubu Salifu, Olufikayo Bamidele","doi":"10.1177/02692163251341116","DOIUrl":"10.1177/02692163251341116","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"640-643"},"PeriodicalIF":3.6,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144037283","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 : 2025-06-01Epub Date: 2025-04-25DOI: 10.1177/02692163251331161
Lucy Robinson, Felicity Dewhurst, Amy Huggin, Daniel Stow, Charlotte Stenson, Elizabeth Westhead, Katie Frew, Barbara Hanratty, Paul Paes
{"title":"Exploring older people's end-of-life care preferences over time: A scoping review.","authors":"Lucy Robinson, Felicity Dewhurst, Amy Huggin, Daniel Stow, Charlotte Stenson, Elizabeth Westhead, Katie Frew, Barbara Hanratty, Paul Paes","doi":"10.1177/02692163251331161","DOIUrl":"10.1177/02692163251331161","url":null,"abstract":"<p><strong>Background: </strong>Understanding the evolution of end-of-life preferences over time is important for dynamic, person-centred palliative care. This is particularly relevant for older people whose preferences can be incompletely expressed and subject to change.</p><p><strong>Aim: </strong>To summarise the nature of the current evidence about how and why the end-of-life preferences of older people change over time.</p><p><strong>Design: </strong>A scoping review was performed, using a predefined protocol and following the JBI manual for evidence synthesis.</p><p><strong>Data sources: </strong>Final searches of Medline, Embase, PsycINFO and Web of Science were carried out in October 2023. Reference lists were also reviewed. Eligibility criteria included studies recruiting people over the age of 60 that explored how or why end-of-life preferences developed over time.</p><p><strong>Results: </strong>Screening identified 52 articles, reporting on 40 studies. A majority were longitudinal studies collecting quantitative data about treatment preferences. Other preference categories included euthanasia, balancing quality and length of life, goals of care, preferred place of death, decision-making and spiritual preferences. Studies explored a variety of factors that may influence preference change or stability. There was a lack of research with ethnic minority groups and people aged over 80.</p><p><strong>Conclusions: </strong>Existing research has focused on preferences about specific therapies, at the expense of understanding what matters most to older people. Synthesis of the available evidence about why preferences change will guide reviews of patients' advance care plans. To inform dynamic, person-centred end-of-life care we need studies prospectively exploring how older people construct a broader range of preferences, and negotiate these over time.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"665-677"},"PeriodicalIF":3.6,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12102515/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144025832","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}
Tamsin McGlinchey, Stephen Mason, Grethe Skorpen Iversen, Dagny Faksvåg Haugen, Inmaculada Ruiz Torreras, Pilar Barnestein Fonseca, Miša Bakan, Berivan Yildiz, Ruthmarijke Smeding, Anne Goossensen, Agnes van der Heide, John Ellershaw
{"title":"iLIVE volunteer study: Volunteer and healthcare professional perceptions of newly developed hospital end-of-life-care volunteer services, in five countries.","authors":"Tamsin McGlinchey, Stephen Mason, Grethe Skorpen Iversen, Dagny Faksvåg Haugen, Inmaculada Ruiz Torreras, Pilar Barnestein Fonseca, Miša Bakan, Berivan Yildiz, Ruthmarijke Smeding, Anne Goossensen, Agnes van der Heide, John Ellershaw","doi":"10.1177/02692163251328197","DOIUrl":"https://doi.org/10.1177/02692163251328197","url":null,"abstract":"<p><strong>Background: </strong>Volunteer services that provide direct support to patients receiving palliative and end-of-life care in hospitals are new and developing, but little is known about the use and experience of such services from key stakeholders.</p><p><strong>Aim: </strong>Explore the perceptions of volunteers, and healthcare professionals, towards newly established hospital end-of-life-care volunteer services, in five countries.</p><p><strong>Design: </strong>A phenomenological approach was adopted, using focus group interviews. Data were analysed using an adapted framework analysis.</p><p><strong>Setting/participants: </strong>Acute hospital in-patient units, in five European countries. Participants were recruited if they were: Volunteers from the end-of-life-care volunteer service, or Healthcare professionals working within the wards that the volunteer service is operational.</p><p><strong>Results: </strong>20 Volunteers and 20 healthcare professionals were recruited. Most participants were female (70%, <i>n</i> = 14/65%, <i>n</i> = 13). The healthcare professionals included a majority nurses (60%). Three overall themes were generated: (1) Volunteers provided 'unique, distinct, 'community' support' bringing familiarity to an unfamiliar, medically focussed environment. (2) Volunteers were able to 'establish a connection centred on 'being there' within the acute hospital environment' despite the fast paced and highly changeable environment. (3) Through 'relational interactions adapted to the individual person' volunteers attended to patients' existential and emotional needs.</p><p><strong>Conclusion: </strong>These services confer benefits that are transferrable across cultures and countries, 'fusing' formal care with the informal visiting of family or friends, attending to patients' existential needs. Recommendations include exploring ways to embed the end-of-life care volunteer service into this unique environment, alongside continuing research to explore cultural differences across different countries.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251328197"},"PeriodicalIF":3.6,"publicationDate":"2025-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144174318","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 : 2025-05-01Epub Date: 2025-04-01DOI: 10.1177/02692163251327900
Anna Robinson-Barella, Charlotte Lucy Richardson, Zana Bayley, Andy Husband, Rona Bojke, Andy Bojke, Rachel Quibell, Lisa Baker, Emma McDougall, Catherine Exley, Barbara Hanratty, Joanna Elverson, Jesse Jansen, Adam Todd
{"title":"'Do I actually even need all these tablets?' A qualitative study exploring deprescribing decision-making for people in receipt of palliative care and their family members.","authors":"Anna Robinson-Barella, Charlotte Lucy Richardson, Zana Bayley, Andy Husband, Rona Bojke, Andy Bojke, Rachel Quibell, Lisa Baker, Emma McDougall, Catherine Exley, Barbara Hanratty, Joanna Elverson, Jesse Jansen, Adam Todd","doi":"10.1177/02692163251327900","DOIUrl":"10.1177/02692163251327900","url":null,"abstract":"<p><strong>Background: </strong>For people in receipt of palliative care, where polypharmacy is common and medication burden is high, there remains limited knowledge around the decision-making processes that underpin deprescribing; for example, recent deprescribing studies have focused on wider issues of identifying polypharmacy in palliative care contexts. However, little is known about the specific challenges of, and preferences towards, decision-making to support the deprescribing for people in receipt of palliative care.</p><p><strong>Aim: </strong>To explore decision-making processes that underpin deprescribing approaches, based on the experiences of people in receipt of palliative care, and their family member(s).</p><p><strong>Design: </strong>An explorative qualitative study involving in-person semi-structured interviews, analysed using reflexive thematic analysis.</p><p><strong>Setting/participants: </strong>Twenty-five semi-structured interviews were conducted with people in receipt of palliative care (<i>n</i> = 25), where 12 of these interviews were undertaken as dyads, with both the patient and a family member together. Interviews were undertaken across a range of settings, spanning: hospice outpatient day units (<i>n</i> = 11), hospice inpatient wards (<i>n</i> = 4), care home (<i>n</i> = 1) and patients' own homes (<i>n</i> = 9), and involved people with diverse diagnoses (including: cancer 52%, heart failure 20%, motor neurone disease 12%, pulmonary fibrosis 4% and chronic obstructive pulmonary disease 4%).</p><p><strong>Results: </strong>Two overarching themes were developed - the first reflected the need to address patient understanding by 'laying the foundations of deprescribing decision-making'. The second theme, 'having a voice in deprescribing decision-making', reflected desires to (pro)-actively involve patients and their family member(s) within these processes.</p><p><strong>Conclusion: </strong>There is a need to take a balanced, person-centred and shared approach to deprescribing decision-making for people receiving palliative care. Co-design strategies offer one approach to further explore this.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"543-552"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033382/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143754010","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":"Changes and predictors of resilience among wife and husband caregivers of patients with advanced cancer: A longitudinal study.","authors":"Haiyan Sun, Chintana Wacharasin, Pornpat Hengudomsub, Ayano Nagai","doi":"10.1177/02692163251323118","DOIUrl":"10.1177/02692163251323118","url":null,"abstract":"<p><strong>Background: </strong>Resilience as a dynamic process plays a significant role in caregivers' mental health. Little is known about gender differences in the resilience process and predictors of resilience in spousal caregivers.</p><p><strong>Aim: </strong>To investigate changes in resilience among wives and husbands of patients with advanced cancer over a 6-month posttreatment period, and identify different predictors of resilience between females and males.</p><p><strong>Design: </strong>This longitudinal, observational study was conducted from January to December 2022.</p><p><strong>Setting/participants: </strong>Spousal caregivers of patients with newly diagnosed advanced cancer were recruited from five regional tertiary hospitals in China. There were three assessment points at 1, 3, and 6 months post-initial treatment. The dependent variable was resilience, and five independent repeated variables were investigated.</p><p><strong>Results: </strong>Totally, 179 wife caregivers and 133 husband caregivers were included. Resilience in both wife caregivers and husband caregivers increased over time (Wald χ<sup>2</sup> = 29.83, <i>p</i> < 0.001) but husbands had higher levels of resilience than wives (Wald χ<sup>2</sup> = 35.59, <i>p</i> < 0.001). However, there was no interaction between time and gender (Wald χ<sup>2</sup> = 5.25, <i>p</i> > 0.05). Patient functional status, caregiver burden, social support, coping self-efficacy, and mutuality were predictors of resilience for wife caregivers. Meanwhile, patient functional status, caregiver burden and coping self-efficacy could predict resilience for husband caregivers.</p><p><strong>Conclusions: </strong>Healthcare providers may develop gender-specific interventions to promote resilience in spousal caregivers of patients with advanced cancer. This would improve mental health for caregivers in the process of palliative care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"594-603"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524064","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 : 2025-05-01Epub Date: 2025-03-22DOI: 10.1177/02692163251327866
Eleanor Wilson, Jonathan Palmer, Georgios Kaltsakas, Jeong-Su Lee, Christina Faull
{"title":"Providing life-sustaining treatments at home for those with Motor Neurone Disease: A qualitative study of bereaved family members' experiences of responsibility.","authors":"Eleanor Wilson, Jonathan Palmer, Georgios Kaltsakas, Jeong-Su Lee, Christina Faull","doi":"10.1177/02692163251327866","DOIUrl":"10.1177/02692163251327866","url":null,"abstract":"<p><strong>Background: </strong>Motor neurone disease is an incurable neurodegenerative condition that progressively impairs motor function. It affects mobility, speech, swallowing and breathing, leading to significant dependence on others. Home mechanical ventilation can alleviate respiratory symptoms and improve survival.</p><p><strong>Aim: </strong>To examine the experiences of bereaved family members involved in the care of someone with motor neurone disease who had died with home mechanical ventilation in place, or following its withdrawal.</p><p><strong>Design: </strong>An interpretive constructivist approach was used to carry out qualitative interviews.</p><p><strong>Setting/participants: </strong>Bereaved family members from England and Wales whose relative had died with ventilation in place, or after withdrawal.</p><p><strong>Results: </strong>Thirty-six bereaved family members took part. Their experiences highlight the extensive responsibilities and emotional burdens of managing home mechanical ventilation. Family members reported feelings of heightened responsibility, distrust in the abilities of professional caregivers, significant impacts on their mental and physical well-being and the ways in which knowledgeable care providers could lift such responsibilities.</p><p><strong>Conclusions: </strong>As the use of technology to sustain life increases, we need to question how much we expect of family members in providing care for those with complex interventions, such as ventilation, at home. This research underscores the critical role family members' play in home care for people with motor neurone disease and calls for a greater understanding of the impacts of maintaining responsibility for life-sustaining treatments. There is a need for better support and training for both family and professional caregivers to alleviate some of the responsibility placed upon family members.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"584-593"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033379/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143676904","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 : 2025-05-01Epub Date: 2025-03-29DOI: 10.1177/02692163251326164
Naa-Dromoh Quarshie, Matthew Wells, Giles Dixon, Sarah Mulholland, Sarah Rudd, Anne-Marie Russell, Shaney L Barratt
{"title":"Interventions to address supportive care needs of people with pulmonary fibrosis and/or their caregivers: A scoping review.","authors":"Naa-Dromoh Quarshie, Matthew Wells, Giles Dixon, Sarah Mulholland, Sarah Rudd, Anne-Marie Russell, Shaney L Barratt","doi":"10.1177/02692163251326164","DOIUrl":"10.1177/02692163251326164","url":null,"abstract":"<p><strong>Background: </strong>Pulmonary fibrosis is often accompanied by high levels of unmet supportive care needs that impact psycho-social well-being and overall quality of life for both the person with pulmonary fibrosis and their family. The provision of appropriate services to reduce unmet supportive care needs represents a key health care priority.</p><p><strong>Aim: </strong>To provide the first broad-level overview of the available evidence of the characteristics and impact of interventions developed to address unmet supportive care needs in people with pulmonary fibrosis and/or their caregivers.</p><p><strong>Design: </strong>Scoping review. The protocol was registered with Figshare.com (protocol number 25452100).</p><p><strong>Data sources: </strong>Systematic electronic searches were performed in Cochrane Central, EMBASE, Medline, PsysINFO and CINAHL from inception to March 2024 to identify all studies describing interventions to address supportive care needs of people with pulmonary fibrosis and/or their carers.</p><p><strong>Results: </strong>A total of 24 studies (1 abstract and 23 full text studies) met inclusion criteria. There was considerable heterogeneity in interventions described and outcome measures used. Multimodal interventions with a focus on symptom control, quality of life, peer support and psychosocial input appear to be crucial to integrated, effective and patient led supportive care. The generalisability of interventions is limited by small sample size, the use of inconsistent and/or non-validated evaluation measures and study attrition.</p><p><strong>Conclusions: </strong>Further research with greater involvement of key stakeholders is urgently required. Future directions should also assess barriers to supportive care and investigate other avenues such as telehealth or remote delivery to improve access and acceptability.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"604-621"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143743556","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 : 2025-05-01Epub Date: 2025-04-12DOI: 10.1177/02692163251327893
Cecilia Bauman, Viktoria Wallin, Sandra Doveson, Per Fürst, Peter Hudson, Ulrika Kreicbergs, Anette Alvariza
{"title":"The family caregiver-targeted web-based intervention \"narstaende.se\" facilitated everyday life for couples facing life-threatening illness: A qualitative study.","authors":"Cecilia Bauman, Viktoria Wallin, Sandra Doveson, Per Fürst, Peter Hudson, Ulrika Kreicbergs, Anette Alvariza","doi":"10.1177/02692163251327893","DOIUrl":"10.1177/02692163251327893","url":null,"abstract":"<p><strong>Background: </strong>Life-threatening illness affects both patients and spouses, and spousal caregivers report high levels of distress. Web-based interventions could benefit spouses' and patients' needs and shared everyday life.</p><p><strong>Aim: </strong>To explore how a family caregiver-targeted web-based psychoeducational intervention influences couples' experiences of sharing everyday life at home while facing life-threatening illness.</p><p><strong>Design: </strong>This qualitative sub-study involved dyadic interviews with couples (spouse-patient) where the spouse was allocated to the intervention arm of a randomized controlled trial evaluating a web-based family caregiver-targeted intervention. Data were analyzed using Interpretive description.</p><p><strong>Setting/participants: </strong>Participants were recruited from five specialized home care services in Sweden. In total, 32 participants, spouses (n = 16) and patients (n = 16) were interviewed as couples after the spouse had accessed the intervention for 4 weeks.</p><p><strong>Results: </strong>Couples described how the spouses' access to the intervention had provided knowledge that enhanced the couple's understanding of each other's strategies for managing the impacts of the illness. The topics covered in the intervention prompted the spouses to initiate conversations that helped couples maintain a sense of mutuality. The intervention provided support to balance the tension between previous and new relational roles, which had changed due to the patient's illness.</p><p><strong>Conclusions: </strong>Altogether, the results show that the benefits of family caregiver-targeted interventions may extend from spouse to patient, facilitating their everyday life. Our findings complement previous intervention evaluations by providing insights into how they may be effective. The goal should be that interventions potentially benefit patients and family caregivers.</p><p><strong>Trial registry: </strong>The randomized controlled trial is registered at ClinicalTrials.gov, ID NCT05785494.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":"39 5","pages":"574-583"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033377/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144041361","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}