Bakgrund

I detta paper presenteras ett pågående forskningsprojekt med syfte att undersöka hur professionella inom hälso- och sjukvården identifierar och stödjer barn vars förälder diagnostiserats med cancer. Projektet har artikelgranskat möjliga modeller att använda för detta arbete samt genomfört intervjuer med hälso- och sjukvårdskuratorer samt sjuksköterskor om deras arbete med frågan. Detta paper fokuserar främst på kuratorernas erfarenheter och villkor att stödja barnen.

Syfte och frågeställning 

Forskningsprojekt syftar till att studera barns behov när dess vårdnadshavare diagnostiserats med cancer och hur behoven utvecklas över tid. Centrala frågeställningar är:

- Hur stödjer hälso- och sjukvårdskuratorer barn vars förälder diagnostiserats med cancer inom hälso- och sjukvården?

- Vilka hinder finns det för hälso- och sjukvårdskuratorernas arbete att stödja barnen?

Metod 

I forskningsprojektet genomförs intervjuer med både hälso- och sjukvårdskuratorer och sjuksköterskor verksamma vid olika sjukhus i Sverige. De flesta av intervjuerna har av denna anledning genomförs över telefon. Intervjuerna spelas in och transkriberas, för att därefter tematiseras.  

Resultat 

Ett centralt tema som framkommer i intervjuerna är det praktiska arbetet som kuratorerna idag gör för att uppmärksamma och stödja barn när deras förälder insjuknar i cancer. Många gånger är detta kopplat till lokala rutiner och arbetssätt, som att till exempel stödja vårdnadshavaren eller ge direkt stöd till barnen. Ett annat centralt tema rör begränsningar och hinder i professionens förutsättningar för att ge detta stöd. Det kan handla om organisatoriska, utbildningsmässiga och praktiska hinder som kuratorerna möter i arbetet med barnen.

Diskussion/konklusion

I en preliminär analys utifrån de intervjuer som genomförts framkommer ett mönster där kuratorernas arbete många gånger bygger på lokala rutiner och arbetssätt och mindre på formaliserade modeller. Vi frågar oss om detta kan förklara de organisatoriska hinder som verkar finns för att stödja barn. 

Family caregivers play a critical role in chronic conditions care, yet digital support for their well-being remains limited. While prior HCI work has focused on task coordination, value elicitation, and information management, this project supports family caregivers in identifying and making sense of their own needs. Building on a clinical screening instrument in colorectal cancer care, we explore how such a tool can be adapted through an iterative, HCI-led process to provide value in everyday life. Through informed internal design sessions with Care Science, Computer Science, and HCI researchers, and a workshop and prototype testing with family caregivers, we integrate the screening instrument into a family caregiver-oriented self-care platform. This process addresses framing, data representation, and interaction flow, acknowledging family caregivers' demands and needs. As work in progress, we indicate how formative HCI evaluation can be combined with health-oriented outcome assessment to adapt clinical instruments into caregiver-centered digital health interventions.

Nurse managers' role in providing high-quality palliative care is crucial for addressing the increasing demand in municipal care. This study aims to compile existing evidence on nurse managers' awareness of and competence in palliative care in municipal care settings. The systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses recommendations and was registered in PROSPERO (CRD42024559183). In total, 6289 articles were initially retrieved, and 489 additional articles were identified in the updated searches. A narrative synthesis was conducted. Eight studies met the inclusion criteria and three themes emerged from the narrative synthesis: (1) Conceptual grasp of palliative care, (2) Recognition of gaps and needs, and (3) Competence in fulfilling complex responsibilities. Nurse managers' understanding of palliative care along with identified gaps and priorities shaped their competence in managing complex responsibilities related to palliative care, where confidence influenced how they performed the responsibilities. The results pointed to a knowledge gap in the explored area. Future research is needed to explore nurse managers' perspectives on how they understand and perform their leadership role in relation to palliative care.

BACKGROUND: In Sweden, approximately half of all individuals who die receive municipal care prior to death. Access to high-quality palliative care remains unequal, with known disparities between both care settings and diagnostic groups. Individuals receiving municipal home care are at higher risk of acute hospital admissions and in hospital death than those in long-term care facilities. However, the impact of municipal care setting on the quality of end-of-life care is largely unknown. The aim of this study was to describe the impact of care setting on the quality of end-of-life care among patients receiving municipal healthcare services.

METHOD: This population-based cohort study included all individuals reported during 2023-2024 in the Swedish Register for Palliative Care as recipients municipal palliative care during the last week of life (n = 50,219). Associations between care setting (ordinary housing, and long- and short-term care facilities) and end-of-life quality indicators were analyzed using modified Poisson regression to estimate risk ratios (RR) with 95% confidence intervals. Analyses were adjusted for age, sex, and cause of death.

RESULTS: Compared to individuals receiving care in ordinary housing, those in long- and short-term care were more likely to receive symptom assessments ([RR; 95% CI] 1.14; 1.09-1.19 vs. 1.08; 1.03-1.13). However, they were less likely to receive end-of-life information ([RR; 95% CI] 0.92; 0.91-0.94 vs. 0.98; 0.97-0.99), bereavement support for relatives ([RR; 95% CI] 0.98; 0.97-0.99 vs. 0.95; 0.94-0.96), and external pain consultations ([RR; 95% CI] 0.52; 0.49-0.57 vs. 0.81; 0.76-0.88).

CONCLUSIONS: Care setting influences the quality of municipal end-of-life care. Strengths and weaknesses vary across settings, highlighting the need for targeted quality improvement efforts.

BACKGROUND: Timely, individually tailored support for family caregivers of cancer patients is stressed, reinforcing the importance of implementing screening tools in clinical practice.

AIM: This study aims to evaluate the validity and reliability of the Swedish CancerSupportSource-Caregiver among 145 Swedish family caregivers of persons diagnosed with cancer.

METHODS: We evaluated the validity and reliability of the Swedish CancerSupportSource-Caregiver among 145 Swedish family caregivers of persons diagnosed with cancer who responded to the Swedish CancerSupportSource-Caregiver, sociodemographic questions, and the Hospital Anxiety and Depression Scale. Psychometric analyses were performed using descriptive statistics and classical test theory to evaluate data quality, targeting, scaling assumptions, and internal validity. Construct validity was assessed through confirmatory factor analysis; criterion validity through concurrent validity; and reliability through internal consistency.

RESULT: Overall, in the sample, evaluations demonstrated generally satisfactory psychometric properties with respect to data quality, targeting, and scaling assumptions. The hypothesized five-domain model showed an acceptable fit to the data, although there were indices that it could be improved. Item loadings were generally high, supporting the proposed construct structure. Further, assessments of the criterion validity were satisfactory. However, the evaluations of internal validity and internal consistency indicated redundancy, mainly within the emotional well-being domain.

CONCLUSION: The Swedish CancerSupportSource-Caregiver demonstrated preliminary satisfactory abilities to screen for support needs and psychological distress among Swedish family caregivers of persons diagnosed with cancer. Further evaluations in larger samples, using Rasch measurement theory, could provide a deeper understanding of the functioning of items and response options.

Objective: This study aimed to translate the CancerSupportSource-Caregiver (CSS-C), culturally adapt it, and conduct a descriptive pilot evaluation of the psychometric properties of the Swedish version in a sample of Swedish family members of persons diagnosed with cancer. Method: Translation and cultural adaptation involved forward-backward translation by professional translators in collaboration with the research team and assessments of comprehensibility and face and content validity by two expert panels comprising family members of persons diagnosed with cancer and healthcare professionals, respectively. The psychometric properties, validity, and reliability of the Swedish version were pilot evaluated using classical test theory among a sample of 30 adult Swedish family members of persons diagnosed with cancer. Results: Based on requests from the expert panels, and supported by empiricism, the CancerSupportSource-Caregiver was adapted to the Swedish context, and five items were added. Thus, the Swedish version comprises 24 items. The face and content validity of the Swedish CancerSupportSource-Caregiver were satisfactory, and the convergent validity was promising. Moreover, the psychometric pilot evaluations indicated high data quality, overall satisfactory targeting, and internal consistency. However, two items were right-skewed, and there were indices of redundancy. Conclusion: The Swedish CancerSupportSource-Caregiver appears to have the potential to identify unmet needs and symptoms of anxiety and depression among Swedish family members of persons diagnosed with cancer. Since the focus of this study was on translating and adapting the tool, further studies in larger samples are warranted to determine the psychometric properties, factor structure, validity, and reliability.

There is a growing interest in assessing well-being and quality of life (QoL) among older people. To ensure that evidence-based scales are used for this purpose, comprehensive and transparent reporting of measurement properties is an essential first step. This study aimed to evaluate the reporting quality of studies that used Rasch analysis to assess scales designed to measure well-being or QoL in older persons. Articles employing Rasch analysis were identified through a previous broader systematic review of psychometric studies. The findings demonstrate notable deficiencies in the reporting of measurement properties, indicating substantial room for improvement. While detailed reporting alone cannot guarantee that scales possess satisfactory measurement quality, it constitutes a prerequisite for drawing evidence-based conclusions about their measurement quality. Improved reporting practices are essential not only for enhancing the interpretability and replicability of individual studies but also for enabling informed decisions in clinical and policy contexts regarding the use of well-being and QoL scales for older populations. 

Background: As the global population ages, the demand for palliative care is expected to increase. However, studies show that older patients often receive inadequate palliative care, partly due to healthcare professionals lacking sufficient training and tools to identify and address palliative care needs effectively. This study aims to explore healthcare professionals’ experiences regarding facilitators and barriers to integrating a palliative care approach in a geriatric setting by implementing the Swedish Palliative Care Guide.

Methods: This qualitative study employed a design consisting of four small-group interviews (with three participants each) and one individual interview, involving a total of 13 healthcare professionals working in a geriatric setting. The aim was to explore their experiences with integrating the Swedish Palliative Care Guide. Data were analyzed using the rapid identification of themes method and inductive content analysis.

Results: The analysis revealed four interrelated themes—organizational prerequisites, knowledge of palliative care, teamwork, and communication—that acted as both facilitators and barriers to integrating the Swedish Palliative Care Guide in a geriatric setting. While structured tools and shared goals supported implementation, challenges such as unclear responsibilities, knowledge gaps, and discomfort discussing end-of-life issues hindered consistent application. Participants emphasized that continuity in care and a shared understanding among team members enhanced the use of the guide. In contrast, short-term admissions and a lack of systemic integration of the Swedish Palliative Care Guide into routine practice pose significant challenges to its long-term sustainability.

Conclusions: Successful implementation of the Swedish Palliative Care Guide in geriatric settings requires clear professional responsibilities, integration into existing digital documentation systems, and targeted training to support staff in initiating end-of-life conversations. Tailoring implementation strategies for local conditions, such as short-term admissions and high staff turnover, can enhance sustainability. These findings provide practical guidance for improving the integration of palliative care approaches into everyday geriatric practice.

Background: Family sense of coherence (FSOC) seems to reduce distress in the family and promote the well-being of the family. Therefore, getting accurate measurements for families with long-term illnesses is of particular interest. This study explores dyadic data analysis from the dyadic- and single-informant perspectives, and the measurement properties of the FSOC-S12 according to the Rasch model.

Methods: Racked and stacked data from 151 dyads were analyzed according to the polytomous Rasch model.

Results: Notably, both the dyadic- and single-informant perspectives (i.e., racked and stacked data set-ups) showed measurement properties with minor deviations from the Rasch model according to fit statistics. However, most items had disordered thresholds and some problems with local dependency. Item hierarchies were similar in both set-ups and there was no differential item functioning (DIF) by role from the dyadic informant perspective. Four items showed DIF by informant role in the single-informant perspective.

Conclusions: Our approach to handling dyadic data has shown both strengths and limitations in the evaluation of FSOC-S12, and the understanding of FSOC as a construct from the family's view of the family's ability as a whole (dyadic-informant perspective) and patient's and family member's separate views of the family's ability as a whole (single-informant perspective).

BACKGROUND: Successful complex healthcare interventions require evaluations of acceptability. Acceptability is suggested to impact intervention implementation, uptake, adherence, intended outcomes, and overall effectiveness. Namely, interventions that are not acceptable to those delivering or receiving them may hinder the key components from being delivered as intended or the recipients from engaging with the interventions as required. However, no validated questionnaire that evaluates acceptability was found in Swedish.

METHODS: We translated the generic Theoretical Framework of Acceptability questionnaire into Swedish, culturally adapted it, and conducted a descriptive pilot evaluation of its psychometric properties. The process involved iterative translation and cultural adaptation following the COSMIN checklist. The questionnaire underwent a forward-backwards translation and an evaluation of face and content validity by an expert panel of researchers. Thereafter, the face validity and comprehensibility of the translated version were evaluated using cognitive interviews and the think-aloud technique; this process was carried out in two rounds of interviews, each with a lay panel of healthcare professionals comprising intervention deliverers and receivers. Lastly, the Swedish version was piloted on 16 Swedish healthcare professionals who had received an educational intervention.

RESULTS: The evaluations of face validity, comprehensibility, and the descriptive pilot evaluation indicate a successful translation, cultural adoption, and usability of the Theoretical Framework of Acceptability questionnaire. The evaluation of content validity showed some problems with the validity of the scale and 7 out of 10 items was below threshold values.

CONCLUSIONS: Overall, the Swedish Theoretical Framework of Acceptability questionnaire seems like a useful brief screening tool for the acceptability of healthcare interventions. The translation process revealed unresolved issues with content validity, possibly explained by the previously reported lack of consensus on the meaning of 'acceptability'. Complementing free text answers or interviews could strengthen the understanding of any unclear questionnaire elements. Our findings support the generic Theoretical Framework of Acceptability questionnaire developers' recommendations of continued cognitive interviewing and psychometric evaluations in any new setting. In addition, we recommend cross-measure validation between the existing acceptability questionnaires to help further refining the measurement of acceptability.