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Objectives: (1) To describe existing tools to assess the burden of informal caregivers of people with cancer, (2) to describe how these tools have been validated and (3) to describe the areas of interest of existing assessment tool entries. Background: The caregiver burden of informal caregivers of people with cancer greatly affects their lives. There is a wide variety of relevant assessment tools available, but there are no studies to help researchers to select tools. Methods: A search was conducted using the keywords 'cancer', 'caregiver', 'burden' and 'scale' in Medline (PubMed), CINAHL and EMBASE to include articles that developed or applied tools to assess the burden on informal caregivers of cancer patients. Once eligible tools were identified, we searched their 'primary reference' studies. If the original scale was assessed in a population other than informal caregivers of cancer patients, we again searched for psychometric measures in the population of caregivers of cancer patients. Results: This study retrieved 938 articles on developing or applying the informal caregiver burden instrument for cancer patients, including 42 scales. Internal consistency of the original scales ranged from 0.53 to 0.96. Nineteen scales initially developed to assess caregiver burden for patients with dementia, stroke and other disorders were later used for caregivers of cancer patients, eight of which have not yet been validated. Reclassifying all scale domains of concern revealed that scale assessments focused more on caregivers' physical health, emotional state and caregiving tasks. Conclusion: This review identifies many scales for assessing informal caregiver burden in cancer patients and gives scales recommended. However, a portion still needs to be validated. The development of a new scale proposes to be based on a theoretical framework and to consider dimensions for assessing support resources. Impact: What problem did the study address?: This paper collates assessment tools on the burden of informal carers of people with cancer. It also provides information on the applicable population, reliability and validity. What were the main findings?: 41 scales could be considered for use, eight of which have not been validated. The scales focus more on assessing caregivers' physical health, emotional state and caregiving tasks, and less on the dimension of support resources. Where and on whom will the research have an impact?: There are implications for informal carers of cancer patients in hospitals or in the community, as well as for relevant researchers. Reporting Method: Retrieved with reference to systematic evaluation. Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Aim: To synthesize evidence regarding the effectiveness of technology‐based psychosocial interventions in improving health‐related outcomes among family caregivers of stroke survivors. Design: A systematic review and meta‐analysis was reported by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Methods: Randomized controlled trials that investigated the effects of psychosocial interventions delivered through information and communication technologies on self‐efficacy, caregiving competence, caregiver burden, perceived social support, anxiety, depression, health‐related quality of life and cost‐effectiveness were included. Two researchers independently selected studies, extracted data, and appraised the quality of the included studies. Subgroup analysis, sensitivity analysis, and narrative synthesis were conducted. Data Sources: Ten electronic databases (PubMed, CENTRAL, Web of Science, Scopus, CINHAL, Embase, Institution of Electrical Engineers Xplore, Ovid Medline, PsycINFO, ProQuest Dissertations and Thesis) were searched up to February 2023. Results: Nineteen studies involving 1717 participants fulfilled the eligibility criteria. Technology‐based psychosocial interventions significantly improved self‐efficacy (SMD =.62), caregiving competence (SMD =.55), depression (SMD = −.25) and anxiety (SMD = −.35). However, perceived social support, caregiver burden, and health‐related quality of life did not show significant improvements. Subgroup analyses revealed that the interventions, lasting from 4 to 6 weeks and encompassing comprehensive contents, exhibited larger effect sizes. None of the studies measured cost‐effectiveness. Conclusion: The technology‐based psychosocial interventions are effective in enhancing self‐efficacy and caregiving competence, as well as alleviating anxiety, and depression among family caregivers of stroke survivors. Future research should investigate interventions delivered through various digital platforms using well‐designed RCTs with in‐depth qualitative data collection and measurement of health and cost‐effectiveness outcomes. Impact: Through psychosocial interventions, healthcare providers in clinical and community settings, particularly nurses, could incorporate technologies into current stroke care practices. Patient or Public Contribution: It is not applicable as this is a systematic review. Registration: The protocol was registered on PROSPERO (CRD42023402871). [ABSTRACT FROM AUTHOR]

Background: The family caregivers as primary caregivers play a crucial role regarding the care of cancer patients. As defined in the literature, the care burden encompasses the negative objective and subjective outcomes including psychological and physical health problems, economic and social issues, deterioration of family relationships and feelings of loss of control that arise from caregiving responsibilities. Aims: This study aims to assess the care burden and to evaluate the associated factors among family caregivers of cancer patients receiving treatment at a state hospital in Türkiye. Methods: This cross‐sectional study was conducted with the family caregivers of patients undergoing treatment in the radiation oncology department of a state hospital in Türkiye. The study population consisted of 350 individuals, with a participation rate of 80%. Participants were administered a questionnaire concerning determining daily living activities and identifying the caregiving burden through their socio‐demographic characteristics. Results: The care burden among primary family caregivers while the delivery of health services was severe for 85.1% of them. The average ZBI score of caregivers was 55.92 ± 14.58. It was clarified that family caregivers' burden was influenced by several factors, including the duration of caregiving, difficulties experienced while caring for the patient, and the negative impact on their daily roles. Conclusion: Our study's findings indicate the need for health professionals to support caregivers of cancer patients while over half of the caregivers were identified as having a severe level of caregiving burden. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs. Impact: This study's findings highlight the need to identify and problems faced by family members during caregiving. This is important for sustainable and cost‐effective holistic care. Reporting Method: The results of this study are reported based on the guidelines of The Strengthening the Reporting of Observational Studies (cohort, case–control studies, cross‐sectional studies) in Epidemiology (STROBE). Implications for practice: Our study's findings indicate the need for health professionals to support caregivers of cancer patients. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs. [ABSTRACT FROM AUTHOR]

Aim: To examine the effects of spousal support and parent–nurse partnership on caregiver burden of parents of children with chronic disease. Background: With the trend of increasing the global number of children with chronic diseases, the parental caregiver burden has become increasingly prevalent. Design: Cross‐sectional study. Methods: The study participants included 115 parents of children diagnosed with chronic disease at a general hospital in South Korea. The study duration was 4 June 2021–30 April 2022. Self‐reported measures included the parent–nurse partnership scale, the Korean version of the Parenting Alliance Inventory and the family caregiver burden scale. T‐tests, ANOVA, Pearson's correlation coefficients and hierarchical linear multiple regression were conducted using IBM SPSS version 26.0. This study followed STROBE guideline. Results: Parental caregiver burden was significantly negatively associated with spousal support and parent–nurse partnership. Factors significantly influencing caregiver burden were parental alcohol consumption; child's inherited metabolic disease, cardiovascular disease, disease relating to haematological tumours or kidney disease diagnosis; child's health perceived as poor by parents; child's dependency perceived as high by parents; hospitalization recency; and low spousal support. These factors accounted for 65% of caregiver burden. Conclusion: Parental caregiver burden was related to spousal support and parent–nurse partnership, but the primary factor affecting caregiver burden was spousal support. Relevance to clinical practice: The results highlighted the role of healthcare professionals in educating parents of children with chronic diseases to facilitate spousal support and have implications for nursing and community‐based interventions to reduce parental caregiver burden. Furthermore, they underlined that policymakers and other stakeholders should pay attention to the parental caregiver burden through government‐based, family‐centered strategies. Patient or public contribution: Parents of children with chronic disease were recruited to perform the self‐administered survey in the phase of data collection. [ABSTRACT FROM AUTHOR]

Background: While previous research has established that resilience is affected by various factors, these studies have primarily focussed on individual variables associated with resilience, without providing insights into how to influence the rate of change in resilience. Aim: To examine the trajectory of resilience and identify the factors associated with changes in resilience among spousal caregivers of patients with newly diagnosed advanced cancer receiving treatment during the first 6 months. Design: An observational longitudinal study. Methods: A total of 312 spousal caregivers of patients with newly diagnosed advanced cancer were recruited from January 2022 to December 2022 in Yancheng, China. Three data collection points were established, spanning from the first month to 6 months after initial cancer treatment. A latent growth model was employed to depict the resilience trajectory at various time points. A latent growth model with time‐invariant covariates was adopted to determine the factors influencing resilience trajectory. The study adhered to the STROBE checklist for proper reporting. Results: Throughout the follow‐up period, the participants experienced a significant increase in resilience. Gender, family income, the patient's health status, spirituality and belief in familism were significantly associated with the baseline resilience level. Moreover, family income, the patient's health status, spirituality, caregiver burden and belief in familism were significantly associated with the rate of resilience change over time. Conclusions: Spousal caregivers demonstrated a linear increase in resilience during the first 6 months after initial treatment. Meanwhile, changes in resilience were influenced by multiple factors during the early phase of cancer treatment. Thus, more attention should be paid to early identification and implementation of targeted interventions. Relevance to Clinical Practice: Healthcare professionals should understand the change in resilience among spousal caregivers and conduct timely mental health interventions to enhance the resilience of families affected by cancer. Patient or Public Contribution: The Guidance for Reporting Involvement of Patients and the Public‐Short Form reporting checklists were used to improve patient and public involvement. [ABSTRACT FROM AUTHOR]

Aims and objectives: To examine the effectiveness of family‐centred interventions among family caregivers. Background: Family‐centred interventions are an emerging form of intervention that can be effective at improving physical and mental health outcomes for patients and family caregivers. To date, no reviews have examined the effectiveness of family‐centred interventions for family caregivers. Design: A systematic review, including a meta‐analysis, was conducted according to the Preferred Reporting Items for Systematic reviews and Meta‐Analyses (PRISMA 2020) checklist. Methods: Seven English and two Chinese electronic databases were compressively searched from the outset to March 2023. Two researchers independently reviewed the abstracts and full texts, extracted the data and assessed the risk of bias independently by using the Cochrane 'Risk of bias assessment tool'. Results: This systematic review and meta‐analysis included 20 articles. The results of the meta‐analysis showed that family‐centred interventions could significantly improve caregiver burden (p=0.003), quality of life (p = 0.007), depression (p = 0.0002), and stress (p < 0.0001) but not anxiety or family functioning. According to our subgroup analysis, the family‐centred empowerment model (p = 0.009) was superior to the other family intervention (p=0.004) in reducing caregiver burden. Family‐centred interventions are more effective at reducing the burden of caregiving on family caregivers of adolescent patients (SMD=−0.79, 95% CI[−1.22,−0.36], p = 0.0003) than on adult patients (SMD=−0.37, 95% CI [−0.61,−0.12], p = 0.004). Conclusions: Family‐centred interventions could enhance family caregivers' burden, quality of life, stress and depression but had no significant impact on anxiety or family functioning. Relevance to Clinical Practice: Family‐centred interventions have the potential to improve the health status and caregiving burden of family caregivers. Rigorous and high‐quality evidence is needed to confirm the long‐term effects of these interventions on family caregivers. Trial Registration Details: The protocol has been registered in the PROSPERO international prospective register of systematic reviews (Protocol registration ID: CRD42023453607). [ABSTRACT FROM AUTHOR]

Background: Caregivers of children with chronic diseases suffer from great parenting pressure, which directly affects the treatment and rehabilitation of children, reduces the quality of life of caregivers and damages family functioning. Existing reviews have not systematically summarized and evaluated interventions for parenting stress in caregivers of children with chronic diseases. Data Sources: Embase, PubMed, Web of Science, OVID, CNKI, CBM, Wan Fang and Cochrane Library were searched for eligible reviews in November 2021 and October 2022. Methods: Two reviewers independently screened titles and abstracts, reviewed full texts of articles for eligibility, and appraised the quality of reviews using JBI. The quality of the evidence was assessed using GRADE. Findings are reported in accordance with PRISMA checklist. Narrative summaries grouped findings by intervention types. Results: Out of 2632 records, we included 21 systematic reviews for a synthesis. Interventions for parenting stress in children with chronic diseases were divided into seven categories. Cognitive behavioural interventions, psychosocial interventions, child behavioural and/or developmental parent interventions and synthesized interventions have shown high‐level evidence in reducing parenting stress for caregivers of children with chronic diseases. Furthermore, outcome measures and intervention protocols were highly heterogeneous across interventions. Conclusions: This umbrella review suggest that reducing the parenting stress of caregivers of children with chronic diseases can directly target caregivers' parenting stress through cognitive behavioural interventions/psychosocial interventions and/or provide guidance to parents on the behavioural and developmental problems of children with chronic diseases. A more standardized approach to outcome measures is essential to assess efficacy and compare interventions across studies. Relevance to Clinical Practice: The findings provide information and evidence for reducing parenting stress among caregivers of children with chronic diseases to guide the development of comprehensive intervention strategies. Patient or Public Contribution: Patient or public contribution does not apply to this study. [ABSTRACT FROM AUTHOR]

Aim: To examine the multidimensional properties of caregiver burden among family caregivers of patients with advanced cancer in a palliative context. Design: A sequential, explanatory, mixed‐method study was performed. Methods: Family caregivers of patients diagnosed with advanced cancer were recruited from a palliative care department of a third‐level hospital in Sichuan Province, China. The Caregiver Burden Inventory, Social Support Rating Scale and Connor–Davidson Resilience Scale were used to collect quantitative data, and a total of 150 caregivers were recruited from January 2022 to September 2022. Qualitative data were collected through semi‐structured interviews, and a total of 22 caregivers were interviewed from October 2022 to November 2022. Survey data were analysed using descriptive statistics, and the factors of caregiver burden were identified using the Mann–Whitney U test, Kruskal–Wallis H test and Spearman correlations. Interpretative phenomenological analysis was performed to analyse the interview data to initially explore the multidimensions of caregiver burden. The following‐a‐thread method and convergence coding matrix were used for triangulation to examine the multidimensional properties of caregiver burden. Results: The participants experienced a moderate level of caregiver burden (32.97 ± 13.09). Through triangulation, six meta‐themes and nine meta‐subthemes were identified as multidimensional properties of caregiver burden, including physical (too many caring tasks and poor health condition), emotional (strong negative emotions resulting from patients' suffering and insufficient and ineffective family communication), social (less social interaction and social role conflict) and economic burdens, factors that aggravate burden (prevention and control of COVID‐19 and spousal relationship with patients) and factors that mitigate burden (social support). Conclusion: Multiple dimensions of caregiver burden were experienced by family caregivers of patients with advanced cancer in the palliative context. Family‐centred palliative care must be further developed. Implications for the profession: It is important to develop family‐centred palliative care. Therefore, the focus must be on developing a rational understanding of palliative care in public and a culture‐oriented death education in palliative units. Impact: This study adopted a mixed‐method approach to comprehensively understand the phenomenon of and factors in caregiver burden in the Chinese palliative oncology context.Our findings suggest that family caregivers in palliative oncology experience a moderate level of caregiver burden, with dimensions including physical, emotional, social and economic burdens, among which emotional burden is the most prominent.The findings of this study provide policy makers and nurse practitioners with targets to be addressed in family‐centred care in Chinese palliative units. Reporting Method: The results of this study are reported based on the guidelines of the Mixed‐Methods Article Reporting Standards. Patient or Public Contribution: Eligible caregivers were invited to participate in the study and semi‐structured interviews. Nurse managers of the palliative unit helped us access the patient‐management system. [ABSTRACT FROM AUTHOR]

Aims and Objectives: This study aimed to assess the perceived caregiver burden among parents of chronically ill children in Jordan. Background: Although there are few studies on the accurate prevalence of chronic diseases among Jordanian children, there are a few on the burden of caregiving, which is important because most children with chronic illness rely on their caregivers to perform their daily tasks. In Jordan, little is known about the caregiver burden associated with caring for children with chronic diseases. Design: A cross‐sectional design was reported in line with the STROBE guidelines. Methods: The Katz Index of Independence was used to determine the children's level of dependence, and the Burden Scale for Family Caregivers was used to measure the caregivers' level of burden. Results: Nearly, 49.3% of caregivers had a very severe burden, 31.2% of children had a severe functional impairment, 19.6% had a moderate impairment, and 49.3% had full functionality. Based on their children's dependency, caregivers' subjective burden varied greatly (p <.001). Fully functional children had a far lower disease burden than severely and moderately disabled children (p <.001). The caregiver burden score differed significantly across chronic disease categories (p <.001). Unemployed caregivers had a far higher subjective burden than working caregivers (p =.009), and single (divorced/widowed) caregivers had higher burdens than married caregivers. Conclusions: Various factors can increase caregiver burden. Therefore, healthcare providers must plan holistic and family‐centred interventions to reduce the caregiving burden. Relevance to Clinical Practice: There is a need to establish support programs to help reduce the level of burden among caregivers of children with chronic diseases. [ABSTRACT FROM AUTHOR]

Aims and objectives: To reduce the likelihood of preventable readmissions, the aim was to investigate how older people (with their family members) managed their chronic health conditions at home following hospital discharge. The objectives explored older people and their family members' perspectives on how discharge plans assisted self‐management of their chronic conditions, their recognition of deterioration and when to seek treatment/re‐attend hospital. Background: Chronic conditions have challenged older adults' self‐management, particularly after hospital discharge and can impact on preventable readmission. Few studies have examined patients' and their family members' perspectives on the management of their conditions at home after hospitalisation. Design: A qualitative exploratory design known as Interpretive Description was utilised. Methods: Purposeful sampling involved 27 community‐dwelling older adults; nineteen were discharged patients with one or more chronic health conditions. Eight nominated family members were also recruited to enhance understanding of the older persons' self‐management at home. Interviews were undertaken and thematic data analysis followed the COREQ guidelines. Results: Five themes emerged: (1) Post‐Discharge Advice; (2) Managing at Home; (3) Recognition and Response to Deterioration; (4) Community Care and Support; and (5) The "Burden" on Others of Post‐Discharge Care. Conclusion: Older people sought a clear plan for self‐management at home prior to discharge. This plan should contain potential signs of deterioration and guidance on future action. We found that support given to older people from family and friends was critical to prevent readmission. In addition, their local General Practitioner and Pharmacist played an essential part in the support of their care. For some, social support services were also important. Nurse telephone follow‐up in the week following discharge was mostly absent. However, this strategy would be strongly recommended. Relevance to clinical practice: To mitigate against preventable readmission, we recommend the above strategies to assist the older person at home with self‐management of their chronic conditions. [ABSTRACT FROM AUTHOR]

Aims and Objectives: The aim of this study was to evaluate the clinical features of children with tracheostomy and the predictors of psychological status of their primary caregivers in order to determine the associations between the children's clinical course with their caregivers' psychological status. Background: The caregivers of children with tracheostomy are responsible for providing basic tracheostomy care at home. All these responsibilities may be associated with significant changes in family members' lifestyles, daily routines and family dynamics. Design: This study is a cross sectional study. Methods: Data of the family's socioeconomic status and clinical status of children with tracheostomy were noted in four paediatric pulmonology centers. The Beck Depression Inventory, Maslach Burnout Inventory, Zarit Caregiver Burden Scale, and Rosenberg Self‐esteem Scale were used for psychological measurements of the caregivers. The STROBE checklist was used for this study. Results: Eighty‐five children and their primary caregivers were enrolled in the study. The children's median age was 4.1 years. Thirty‐eight of them were dependent on home ventilators. Twenty‐one had bacterial colonisation. All children's primary caregivers were their mothers. Beck Depression Inventory scores of mothers of children with colonisation were higher. Number of hospitalizations in previous 6 months was related to mothers' emotional exhaustion and depersonalization scores. Duration of children's hospitalizations in previous 6 months was positively correlated to mothers' emotional exhaustion, depersonalization, and Beck Depression Inventory scores. Conclusions: Mothers of children with tracheostomy may experience psychological conditions, such as high levels of depression, burnout, burden and low levels of self‐esteem. Frequent and long‐term hospitalizations of children correlated with mother's depression and burnout. Therefore, primary caregivers should be evaluated and supported psychologically. Relevance to Clinical Practice: Preventing mothers of children with tracheostomy from experiencing psychological conditions such as depression, burnout, burden and low self‐esteem can also increase the quality of care for children. [ABSTRACT FROM AUTHOR]

Background: Caregivers of lung cancer patients frequently experience psychological distress and high caregiver burden. Previous studies have focused on caregiver burden for patients with advanced lung cancer, while few studies focused on the caregiver burden among informal caregivers of postoperative patients with early‐stage non‐small cell lung cancer (NSCLC). Objectives: This study aimed to (a) examine caregiver burden for caregivers of patients with early‐stage NSCLC after surgical treatment and (b) identify predictive factors related to caregiver burden of patients with early‐stage NSCLC. Methods: A cross‐sectional study was conducted in a university‐affiliated hospital in Changsha, China. A total of 385 patients with early‐stage NSCLC and postsurgical treatment and their caregivers were included in this study. Caregiver burden was evaluated using the Zarit caregiver burden interview (ZBI). A set of questionnaires was used to assess psychosocial characteristics of participants, including simplified coping style questionnaire, social support rate scale, and hospital anxiety and depression scale. Hierarchical regression analysis was applied to identify factors associated with caregiver burden. We followed STROBE checklist for reporting the study. Results: The average ZBI score was 29.1 ± 11.4. Most caregivers (62.6%) demonstrated mild to moderate caregiving burden. The duration of caregiving (β = 0.18, p <.001), passive coping of caregiver (β = 0.17, p =.001) and anxiety (β = 0.13, p =.007) were significant predictors of caregiving burden. A variance of 17.6% in caregiving burden was explained by these identified factors. Conclusions: Caregivers of early‐stage NSCLC patients experience a mild to moderate level of caregiver burden. The duration of caregiving, passive coping and anxiety are factors associated with caregiver burden. Relevance to clinical practice: Clinicians should provide early care to support new roles of family members as caregivers. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To (i) determine prevalence of distress among caregivers of people living with cancer, (ii) describe caregivers' most commonly reported problems and (iii) investigate which factors were associated with caregivers' distress. Background: The psychological distress associated with a cancer diagnosis jointly impacts those living with cancer and their caregivers(s). As the provision of clinical support moves towards a dyadic model, understanding the factors associated with caregivers' distress is increasingly important. Design: Cross‐sectional study. Methods: Distress screening data were analysed for 956 caregivers (family and friends) of cancer patients accessing the Cancer Council Western Australia information and support line between 1 January 2016 and 31 December 2018. These data included caregivers' demographics and reported problems and their level of distress. Information related to their care recipient's cancer diagnosis was also captured. Caregivers' reported problems and levels of distress were measured using the distress thermometer and accompanying problem list (PL) developed by the National Comprehensive Cancer Network. A partial‐proportional logistic regression model was used to investigate which demographic factors and PL items were associated with increasing levels of caregiver distress. Pearlin's model of caregiving and stress process was used as a framework for discussion. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist was followed. Results: Nearly all caregivers (96.24%) recorded a clinically significant level of distress (≥4/10) and two thirds (66.74%) as severely distressed (≥7/10). Being female, self‐reporting sadness, a loss of interest in usual activities, sleep problems or problems with a partner or children were all significantly associated with increased levels of distress. Conclusions: Caregivers of people with cancer reporting emotional or familial problems may be at greater risk of moderate and severe distress. Relevance to Clinical Practice: Awareness and recognition of caregiver distress are vital, and referral pathways for caregivers are the important area of development. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to evaluate the usability of the COPE Index in the assessment of subjective caregiving burden of family caregivers providing care for older people in their home environment. Methods: A cross‐sectional study was conducted among 110 family caregivers. The criterion of including caregivers in the study was their provision of care at home for an older person who needed and received regular long‐term nursing care in their home environment. The study was carried out using the COPE Index questionnaire in assessing the situation of family caregivers. The study was reported according to the STROBE checklist. Results: The mean result of assessment of negative impact of care in the studied group of caregivers was 16.5 ± SD 3.0, positive impact of care – 10.4 ± SD 2.8 and the quality of support – 9.2 ± SD 1.8. A higher level of caregiving burden was found in 58.2% caregivers. The vast majority of the caregivers were women (83.6%). The care was most often provided by the elderly people's children (51.0%), less often by spouses (17.0%), siblings (10.0%), grandchildren (10.0%) and paid caregivers (10.0%). Conclusion: The COPE Index proved to be a useful instrument for routine application in home environment to identify care deficits. Greater caregiving burden of family caregivers of disabled older persons was associated with a higher number of nights devoted to care, growing limitations on professional life, choice to provide care, the caregiver's emotional state, the lack of support in the caregiving role, support from family members and the state of cognitive functions of the care recipient. Relevance to clinical practice: This study may help identify and characterise the profile of family caregivers who are at risk of caregiving burden, and can be used to apply well‐designed activities aimed at reducing their suffering and providing them support. [ABSTRACT FROM AUTHOR]

Aim and objectives: To explore the experiences of caregivers of persons with dementia and dementia coordinators regarding their collaboration in care for a person with dementia and the feasibility of using technology in this collaboration. Background: Caregivers of persons with dementia have a significant risk of developing physical strain and psychological stress due to caregiver burden. Internationally, the use of technology is rapidly evolving in health care. Dementia coordinators employed in municipalities in Denmark support caregivers of persons with dementia, thus helping management of life with dementia. The cooperation between dementia coordinators and caregivers is essential, and the use of technology in everyday life is inevitable. Methods: A qualitative, exploratory, descriptive design was used. Data were derived from five focus group interviews in which 13 caregivers and 14 dementia coordinators participated. The participants' narratives were used to elucidate their experiences and attitudes, and data were analysed using thematic analysis. The study reports according to the COREQ checklist. Results: The analysis revealed three themes: the need for creating a safety net in everyday life, the need for moving together in the right direction and the need for handling technology while preserving relational interaction. Conclusions: Technology might be used as a mediator to help ease some caregiving tasks or the burden of caregiving. However, technology is an area in which the caregivers must rely on their competences and initiatives. Even though the collaboration between caregivers and dementia coordinators was beneficial and supportive, dementia coordinators experienced technology as outside the core elements of their daily work. Relevance to clinical practice: We suggest further discussion regarding who is best suited to support caregivers in making choices regarding which technologies to implement in caring for a person with dementia. If this discussion is not taken seriously, there is a risk of leaving caregivers in a technological quagmire. [ABSTRACT FROM AUTHOR]

Background: Older people with cognitive impairment may have lack of understanding of their health and ability to co‐ordinate care needs. Family carers play a key role in supporting older people but the role of family carers in emergency discharge has not been explored well. Objective: To explore and describe the role and contribution of family carers accompanying the older person with cognitive impairment to the emergency department. Design: A exploratory descriptive study was conducted in which telephone interviews were performed. Setting: Three emergency departments located in metropolitan Sydney, Australia; two major tertiary referral centres and one district hospital. The EQUATOR research checklist (COnsolidated criteria for REporting Qualitative research) (COREQ) was used to report the qualitative study. Subjects: Participants were family carers accompanying people aged ≥64 years with cognitive impairment; with non‐urgent triage classifications; English speaking and eligible for discharge home. Semi‐structured telephone interviews were conducted 2 to 4 weeks after the older person was discharged. Data were reflexively thematically analysed in NVIVO independently by three researchers. Results: Twenty‐eight interviews were conducted. Three key themes were evident: (1) 'communicating knowledge of the older person's health status and usual behaviour'; (2) 'providing advocacy, translation, surrogacy and care co‐ordination'; and (3) 'ensuring safe transition from the emergency department to home'. Conclusions: Study findings detailed how family carers created an important safety net while the older person was in emergency, through advocacy and the communication of vital health information. More importantly, their knowledge influenced the healthcare management of the older person and ensured safe discharge and co‐ordination of care in the community. Relevance to clinical practice: The study identified for older persons with cognitive impairment a safe stay in the ED and transition home from hospital was supported by family carers and assisted to ensure that discharge information was understood and adhered to optimise wellbeing and prevent adverse outcomes. The findings of this study can inform discharge processes for nurses, nurse practitioners and doctors. Additionally, processes to support family carer engagement would optimise older person compliance and better inform healthcare decision‐making and choice for older peoples, family carers. The findings of the study should inform discharge processes to minimise risk of readmission, financial burden and harm. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To explore experiences of daily living and identify rehabilitation needs in patients and caregivers living with myeloproliferative neoplasms. Background: Myeloproliferative neoplasms are chronic haematological cancers. Studies report a high symptom burden but little is known about supportive care and rehabilitation for this patient group. Design: Qualitative study with a phenomenological approach using focus group interviews to gather knowledge about the participants' lived experiences. Methods: Forty‐eight patients and seven caregivers attending a 5‐day rehabilitation course were interviewed in 12 focus groups. Systematic Text Condensation was used to analyse the interviews. Reporting adhered to COREQ. Results: Two main themes for patients were found: The loss of choice and identity due to the need to prioritise energy and The schism of being a person but also a patient. Patients described how living with myeloproliferative neoplasms meant having to prioritise energy and, therefore, losing freedom to choose activities. This changed their identity and impaired their quality of life. Patients of working age seemed to struggle the most in balancing the disease, family, social relationships and work. One main theme was found for caregivers: Influence of the disease. Caregivers reported how the disease limited their social lives, that the disease brought psychological strain, extra work, and that communication between couples was impaired. When both patients and caregivers participated in rehabilitation courses, they reported better understanding between couples and more open conversations. Rehabilitation needs identified were mainly in relation to psychosocial support and patient education, although needs varied across patients and caregivers. Conclusions: Patients and caregivers expressed difficulties in adjusting to the lives the disease enforced upon them. Our findings indicate that myeloproliferative neoplasms patients and their caregivers would benefit from a combined model of psychosocial support, patient education, peer support and rehabilitation interventions based on an individual needs assessment. Relevance to clinical practice: Nurses can be responsible for individual needs assessments and refer patients and caregivers to suitable supportive care and rehabilitation interventions. Trial registration details: The study was approved by the Danish Data Protection agency (J.nr. 2008‐58‐0035). [ABSTRACT FROM AUTHOR]