The literature on pain management for people with dementia in nursing homes places significant emphasis on the limitations dementia imposes on their ability to describe and express their pain. Little is known about how healthcare personnel can support and use the individual resources people with dementia have in pain management. Thus, this study aimed to explore pain management in people with dementia in nursing homes, focusing on the resources people with dementia have and how healthcare personnel can support and integrate these resources into their clinical practice. We applied an exploratory design with a focused ethnographic approach and collected data through participatory observations and field conversations, as well as notes from residents' medical charts. The study setting was a nursing home unit specializing in dementia care in a larger city in Norway. The study included residents with moderate- to severe stage dementia (n = 18) and nurses caring for them (n = 12). The data were analysed in line with qualitative content analysis. The analysis identified two categories: (a) Residents' pain narratives and (b) Nurses' interpretation and support. Within each category, several subcategories were identified. The categories are linked together in one overarching, latent theme describing how people with dementia express themselves in the moment and nurses integrate these moments into a coherent whole. Findings also indicate that people with dementia have individual resources and strengths that are important for pain management. With support from healthcare personnel, they can be active participants in pain management processes, in accordance with their individual abilities.

AimTo map and summarise research literature describing patient participation in hospital care for frail older persons and their next of kin.BackgroundPatient participation refers to the active involvement of patients in healthcare decision-making processes. An aging population and increased life expectancy have led to a growing number of older adults requiring hospital care, and engaging older patients in decision-making can be challenging due to the complexities of their health conditions. Thus, there is a need to deepen our understanding of patient participation, concerning frail older persons and their next of kin.DesignScoping review.MethodsA systematic search was conducted across four databases. Abstracts and titles were evaluated for relevance according to predetermined inclusion criteria. A total of 140 studies were read in full text, and 17 quality-appraised studies were selected for analysis.ResultsFive instruments for measuring participation were identified. Patient participation was mainly characterised as being informed, understanding provided information, conducting good communication and being given the opportunity to make decisions. Patients could adopt different participation strategies. Next of kin participation is characterised as being informed, communicating with healthcare staff and being involved in decision-making. Conditions facilitating participation are dependent on healthcare staff, environmental conditions and written information. Barriers to participation stem from staff attitudes, their lack of availability and approachability, unsatisfactory communication, patient shortcomings, substandard continuity of care, organisational routines and unsatisfactory physical environments.ConclusionOlder persons and their next of kin have reasonable demands for them to experience participation. Therefore, it should not be difficult for healthcare staff to meet patient expectations by ensuring patients and their next of kin receive understandable information and are given the opportunity to make their own decisions, and for organisations to create a climate where staff are available, approachable and empathetic so patients feel that they are participating in the planning and delivery of their care-in summary, to keep them in the loop.

Background Providing quality palliative care during a pandemic was challenging. Both specialist and communityhealthcare services cared for patients that faced life-threatening illness and who were influenced by the restrictionsof the COVID-19 pandemic. Little knowledge has yet been provided on how registered nurses (RNs) experiencedthe palliative care quality during the COVID-19 pandemic. The aim of this study was to explore RN’s experiences ofproviding palliative care quality during the COVID-19 pandemic. Methods This qualitative study had a descriptive design. Semi-structured individual interviews were conductedbetween November 2021 and January 2022 with 18 RNs who worked in intensive care units in hospitals, dementiacare or palliative care units in nursing homes in Norway during the pandemic. Data were analysed by using qualitativecontent analysis. The study was conducted and reported according to the COREQ’s checklist. Results Analysis of the data resulted in an overall theme: ‘Striving to achieve control’. This theme comprised sixcategories: (1) when the toolbox does not fit; (2) protective equipment—social distance and opportunities forcloseness; (3) unpredictable workday; (4) the right person to the right assignment at the right time; (5) presence andabsence of relatives and friends; and (6) situations that required creativity. RNs had various experiences regarding howthe quality of care was perceived; being worse, preserved, or in some cases even better than before the pandemic. Conclusions The provision of quality palliative care was experienced by RNs as challenging during the pandemic.The pandemic forced them to be creative and to strive for control to provide the best palliative care possible giventhe situation. The results of this study may contribute to important knowledge for leaders, policy makers and RNsto learn from the COVID-19 pandemic and planning for future pandemics or crises. Especially to optimise factorsperceived by RNs to be important for the palliative care quality, related to the specific situation and care context, toinclude the perspectives of those involved and take into consideration the time perspective of the pandemic.

Background: Pain is a common symptom in people with dementia living in nursing homes, but cognitive impairment, including language and communication difficulties, challenges pain assessment and the ability to self-report pain.Objectives: This study aimed to identify and summarize patterns, advances, and gaps in research literature describing pain assessment in people with dementia living in nursing homes.Design: We conducted a scoping review following Arksey and O'Malley's methodological framework.Methods: Systematic searches were conducted in CINAHL, Embase, MEDLINE, and PsycINFO. We included studies describing pain expressions in people with dementia and/or healthcare personnel assessment of pain in people with dementia, in a nursing home context. Charted data included demographics, methodological descriptions, ethical and quality assessment and relevant findings. Relevant findings were summarized using thematic analysis, and an overview of patterns, advances, and gaps in the research literature is presented.Results: Thirty-nine studies were included. The results describe three patterns: (1) pain awareness; (2) suspected pain and (3) pain mapping. Collectively, these patterns constitute a process of pain assessment, integrating pain expressions of people with dementia. Important perspectives on self-reporting are touched upon in several of the included studies, though direct descriptions of attempts to capture the residents' own experience of pain are sparse.Conclusion: This scoping review provides a comprehensive description of pain assessment in people with dementia living in nursing homes as a process in three steps. We identified several knowledge gaps in the understanding of this process and provide concrete recommendations for further research. The results underpin the importance of pain assessment approaches that incorporate the flexibility to meet residents' varying and potentially fluctuating ways of communicating pain.Trial registration: This scoping review is registered in the Open Science Framework (https://osf.io/8kaf5/).

Purpose: To explore the symptom cluster management process from the perspective of patients with lung cancer within the oncological care context. Methods: We used a constructivist grounded theory methodology to collect and analyze rich data from 15 patients with lung cancer via individual interviews and a two-dimensional symptom assessment scale. Results: A situational theoretical model describes the symptom cluster management process through the main category ‘To get through to survive’, with the category ‘Handling symptom clusters’ together with six sub-categories concerning the patients' management strategies and the category ‘Living with symptom clusters,’ together with two sub-categories describing the outcome in their daily life. Impacting conditions are incorporated in the model. Conclusions: Patients often feel left to their own devices to deal with symptom clusters and may not understand or foresee problematic circumstances as they manage their situations on a day-to-day basis. When symptoms are normalized and accepted, patients do not ask for support, or support is not being offered to them. Healthcare professionals should consider the peril of normalizing symptoms and the patients’ altered time perspective that stems from their approach of living one day at a time, in further development of nursing interventions and person-centered care for this population.

Purpose: Sexuality and body image are closely related to health-related quality of life (HRQoL), but these factors are less investigated in patients treated for lymphoma. Therefore, the aim of this study was to describe and explore the associations between sexuality, body image, comorbidities and HRQoL in patients treated for diffuse large B-cell lymphoma. Methods: A cross-sectional study with 257 patients (25% response rate) was conducted in 2019 using measures for sexuality, HRQoL and body image and data from the Swedish National Quality Registry for Leukemia–Subregistry for Lymphoma. Results: The participants had a mean HRQoL of 69.75 on a 1 to 100 scale, and the functional scales ranged from 68.50 for Role to 80.82 for Social functioning. The symptoms ranged from 5.56 for nausea and vomiting to 37.73 for fatigue. Regarding body image, the participants scored a total of 14.47 (reference values 10–40). The total score for Sexual adjustment was 3.02 (fair), and for the subscales Sexual Interest 2.63 (low), Sexual Relation 2.72 (low), Sexual Function 3.62 (high) and Sexual Satisfaction 3.50 (high). HRQoL was positively associated with Sexual Relation; however, negative body image and comorbidities showed negative associations. The model explains 39.6% of the variation in HRQoL. Conclusion: The positive impact of sexual relationships on HRQoL was highlighted, which emphasised the unfavourable effect of negative body image and comorbidities on HRQoL for lymphoma patients. Cancer nurses should address these topics with patients to improve their long-term well-being.

Background

While patient perspectives in healthcare are recognized, endometrial cancer (EC) care quality and patient experiences remain understudied. The aim of this nationwide cross-sectional study was to explore how women treated for EC perceived the quality of care during treatment and waiting times until diagnosis and surgery.

Methods

EC patients (n=684) diagnosed January 2017 to March 2018, participated in the study six to eight months after diagnosis. Data were collected digitally by means of the Quality from the Patient’s Perspective – Gynecological Cancer instrument. Each item (n=27) was answered in two ways: both as actual care received and perceived importance of different aspects of care.

Results

The highest levels of perceived quality of actual received care and the corresponding subjective importance were reported related to physical-technical conditions comprising the items “Acceptable waiting times”, “Access to necessary equipment” and for the factor “Respect and empathy from healthcare personnel”. The lowest levels were reported regarding information related to self-care and aspects of sexuality. Most of the women (79%) reported less than one month waiting time until diagnosis and

Conclusions

This study contributes to a better understanding of the quality of care among women with endometrial cancer during illness, treatment and early cancer rehabilitation. Women perceived the quality of endometrial cancer care mostly as good or high and age had limited impact. Particularly identified areas for improvement were information on self-care and aspects of sexuality, along with reducing waiting times, all important for reducing patient distress.