BACKGROUND: Timely identification of patients with palliative care needs is a prerequisite for being able to carry out effective and equal palliative care. The Supportive and Palliative Care Indicators Tool (SPICT) identifies patients likely to benefit from a palliative approach.
AIM: The main objective was to describe the translation, cross-cultural adaptation and content validation process of the SPICT-SE. In this process, the prefinal SPICT-SE was tested in focus group interviews to explore how the tool was perceived and interpreted by healthcare professionals in a Swedish healthcare context.
METHODS: In this qualitative descriptive study, the translation, cross-cultural adaptation and content validation process of the SPICT-SE was based on a recommended method for cross-cultural adaptation of self-report measures. The process included two independent forward translations, a synthesis, and one independent back-translation. An expert committee consolidated all the versions and developed the prefinal version of the SPICT-SE. The prefinal version of the SPICT-SE was tested in four focus group interviews with physicians and nurses engaged in inpatient or outpatient care in south-west Sweden. A thematic analysis of the transcribed interviews was performed. The SPICT-SE was then revised to the final version.
RESULTS: In the thematic analysis, four themes were constructed that together described how the SPICT-SE was perceived and interpreted by healthcare professionals: The mindset is familiar and relevant; the tool needs to be adjusted in order to be clearer; the purpose and consequences of the tool are ambiguous; and the tool supports a palliative approach.
CONCLUSION: The SPICT-SE has now been successfully translated, culturally adapted and content validated in a Swedish healthcare context.
PURPOSE: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context.
METHODS: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated.
RESULTS: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability ( w=0.45-0.75).
CONCLUSIONS: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.
OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population.
DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis.
SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region.
RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers.
CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public = 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.
Le groupe de travail de l'EAPC (Association européenne pour les soins palliatifs) sur la prise en charge du deuil a mené une étude sur le soutien du deuil au sein des services de soins palliatifs dans les pays membres de l'EAPC. Parmi les 370 services qui ont participé, 302 services apportent un soutien au deuil. Dans les services de soins palliatifs, la nécessité d'apporter un soutien au deuil n'est pas perçue comme une priorité, et, dans une part non négligeable de ces centres (18%), il n'est prévu aucun soutien du deuil. Les services ont peu de personnel dédié : moins des deux-tiers y ont formé leur personnel, et seulement un tiers applique les politiques officielles ou les directives. Afin d'optimiser le soutien aux familles endeuillées, il serait opportun que l'EAPC et les services de soins palliatifs en Europe formalisent l'organisation du soutien du deuil. La prochaine étape, pour le groupe de travail sur la prise en charge du deuil, consistera à élaborer une déclaration de bonnes pratiques.
[D'après résumé revue]