Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient:a survey

BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences. METHODS: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers. RESULTS: A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found. CONCLUSIONS: Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/1471-2407-14-541) contains supplementary material, which is available to authorized users

Sampling for wood decay analyses of cable car trestles and houses at Svalbard. Field report

This report is a documentation of the field data collection and sampling at Svalbard in 2022 within the project ArcticAlpineDecay. The sampling methods are described and for each object sampling was performed documentation is provided, incl. location, Askeladden ID, map coordinate, photo documentation and illustration of sampling. Compilation of the results from the project will be published in peer review journals and in a final report from the project.Sampling for wood decay analyses of cable car trestles and houses at Svalbard. Field reportpublishedVersio

Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up

Purpose: The aim of this study was to develop and ensure the content validity of a new patient-reported outcome measure, the Cancer Patient Empowerment Questionnaire (CPEQ), to measure the level of, desire for, and enablement of empowerment among cancer patients in follow-up. Methods: An iterative process based on: (i) empowerment theories by Zimmerman and Tengland, (ii) a systematic review of questionnaires measuring empowerment or related concepts among cancer patients, (iii) qualitative data from 18 semi-structured interviews with Danish cancer patients in follow-up, (iv) input from a group of eight cancer patients involved as co-researchers and from an expert steering group, and (v) cognitive interviews with 15 cancer patients in follow-up. Results: The items for the CPEQ were developed and revised and 12 versions of the questionnaire were evaluated. The final version consists of 67 items, covering three different dimensions of empowerment: (A) empowerment outcomes consisting of three components: (A1) the intrapersonal-, (A2) interactional-, and (A3) behavioral component, (B) empowerment facilitators (enablement), and (C) the value of empowerment. Conclusions: This study documents the theoretical and empirical basis for the development of the CPEQ and its content validity. The CPEQ provides a tool for researchers to assess the level of, desire for, and enablement of empowerment among cancer patients. The next steps will be to use the CPEQ in a nationwide study of empowerment in cancer follow-up and subsequently shorten the CPEQ based on psychometric methods in order to make it more relevant in clinical studies

PBL hybrid: An exploration of the concept of hybrid learning in a resource-constrained university context

In this paper, we explore the concept of hybrid learning in the context of a project aiming to transform the master programmes at Gulu University in Uganda by incorporating problem- and project-based learning (PBL) and the use of digital technologies to prepare graduates to lead community transformation and improve employability. Teachers are experimenting and piloting PBL and digital technologies. Based on the teachers' experiences this paper provides insights into how PBL and hybrid learning are being enacted by teachers and learners in the context of a resource-constrained university environment. What are the challenges of bringing these principles of hybrid learning and PBL together in a resource-constrained environment? The paper understands hybrid learning as the development of a new quality of learning environments that goes beyond a mere mixture of elements, e.g. digital and analogue, on-site and off-site. In this paper we are particularly concerned with exploring how the new PBL hybrid practices are developing, with a interest in how digital tools are integrated into teaching and learning. This paper is based on the results of a co-construction workshop with teachers and researchers based on their experiences from the first pilot phase. The results of the study suggest that flexibility is a core concept in relation to PBL-hybrid.  Hybrid learning involves flexibility in terms of how learners carry out educational activities, how PBL is implemented, the use of many different technologies and the use of both analogue and digital learning tools and spaces. Moreover, to achieve hybrid learning, the types of flexibility and technologies, as well as the mix of digital and analogue tools, depend on the specific context of the educational activities, as well as on the competences of learners and teachers. As such, hybrid learning needs to be seen as a concept in relation to the contexts in which it unfolds. This insight is important for networked learning, which cuts across contexts, actors, materials/spaces and digital/analogue modalities.

Children in care: Where do children entering care at different ages end up? An analysis of local authority administrative data

Local authorities in England are required to routinely collect administrative data on children in care and cross-sectional analyses of national data are published by central government. This paper explores the usefulness of undertaking a longitudinal analysis of these data at local authority level to determine the care pathways for children entering care, differentiating by age at entry. The sample consisted of 2208 children who entered care in one English local authority over a six-year period, and who were followed up for at least 2 years. A logistic regression model was fitted to explore factors associated with children staying long term in care. Age at entry was a key determinant of where children ended up (return to a parent, special guardianship or residence order, adoption or staying long term in care). Only a minority of entrants (mainly those entering care in their middle years) remained in longer term care. For the vast majority of children, the ‘pre-care family context’ remains important as children will either return to parents or relatives or stay in touch with them. The findings are used to urge service planners to make full use of data on care entrants, especially age at entry, when deciding on the balance between the different placement options needed, and the social work service delivery models