Experiences of healthcare providers and caregivers regarding health system bottlenecks affecting child healthcare service delivery in a rural district: Empirical qualitative study.

AIM: To explore the experiences of nurses and caregivers about the health system bottlenecks to the delivery of child healthcare services in a rural district in Ghana. DESIGN: The study employed a qualitative approach using an exploratory, descriptive design. METHODS: Collection of data was through semi-structured, face-to-face interviews with 26 participants in the Nkwanta South Municipality, Ghana. Audio recordings of interviews were transcribed verbatim and analysed qualitatively. Inductive codes generated were organised into themes and sub-themes. RESULTS: The main health system bottlenecks that emerged were the poor state of in-patient facilities, inadequate basic logistics and persistent shortage of essential medicines needed for child healthcare delivery. CONCLUSIONS: Health system bottlenecks have the tendency to affect the treatment and hospitalisation outcomes of sick children and eventually impact the state of child healthcare negatively. Concerted efforts by government and local authorities to remove these barriers will help to improve child health and child health outcomes. PUBLIC CONTRIBUTION: A total of 26 participants comprising nurses and caregivers, agreed and participated in this study. Interviews with these participants were conducts either in the health facilities or in the communities where they live. Their responses contributed significantly to the content of this article.

Impact of the COVID-19 pandemic on the self-care and health condition of the older adults. CUIDAMOS+75. A mixed methods study protocol.

Aims: To assess the impact of the COVID-19 pandemic on the health condition of people ≥75 years of age and on their family caregivers in Spain. Design: Multicentric, mixed method concurrent study. Methods: This work, which will be conducted within the primary care setting in 11 administrative regions of Spain, will include three coordinated studies with different methodologies. The first is a population-based cohort study that will use real-life data to analyze the rates and evolution of health needs, care provision, and services utilization before, during, and after the pandemic. The second is a prospective cohort study with 18 months of follow-up that will evaluate the impact of COVID-19 disease on mortality, frailty, functional and cognitive capacity, and quality of life of the participants. Finally, the third will be a qualitative study with a critical social approach to understand and interpret the social, political, and economic dimensions associated with the use of health services during the pandemic. We have followed the SPIRIT Checklist to address trial protocol and related documents. This research is being funded by the Instituto de Salud Carlos III since 2021 and was approved by its ethics committee (June 2022). Discussion: The study findings will reveal the long-term impact of the COVID-19 pandemic on the older adults and their caregivers. This information will serve policymakers to adapt health policies to the needs of this population in situations of maximum stress, such as that produced by the COVID-19 pandemic. Trial Registration: Identifier: NCT05249868 [ClinicalTrials.gov].

A qualitative study of maternal and paternal parenting knowledge and practices in rural Mozambique.

BACKGROUND: Providing nurturing care for young children is essential for promoting early child development (ECD). However, there is limited knowledge about how mothers and fathers across diverse contexts in sub-Saharan Africa care for their children and from whom they receive guidance and support in their caregiving roles. We aimed to examine caregivers' nurturing care practices and sources of parenting knowledge in rural Mozambique. METHODS: This is a secondary analysis using data from a qualitative evaluation of a pilot intervention to improve nurturing care for early child health and development within existing health systems. The evaluation was conducted across three primary care health facilities and their catchment areas in Nampula province, Mozambique. For this study, we analyzed data from in-depth interviews conducted with 36 caregivers (32 mothers and 4 fathers) to investigate mothers' and fathers' daily caregiving experiences. Data were analyzed using thematic content analysis. RESULTS: Caregivers described various caregiving roles relating to general caregiving of young children (e.g., feeding, bathing, caring for child's health) and stimulation (e.g., play and communication) activities. Mothers more commonly engaged in general caregiving activities than fathers, whereas both mothers and fathers engaged in stimulation activities. Other family members, including siblings, grandparents, and aunts/uncles, were also actively engaged in general caregiving activities. With respect to sources of parenting knowledge, caregivers received parenting guidance and support primarily from their own mothers/parents and facility-based health providers. CONCLUSIONS: These findings highlight the importance of adopting a holistic approach involving caregivers and their context and reveal potential strategies to promote caregiving and ECD in rural Mozambique and similar contexts.

Psychosocial outcomes following emergency laparotomy (POLO) study: a study protocol for a multicentre mixed-methods prospective cohort study assessing the psycho-social outcomes following emergency laparotomy in adults.

INTRODUCTION: Morbidity from an emergency laparotomy (EmLap) is difficult to define and poorly understood. Morbidity is a holistic concept, reliant upon an interplay of bio-psychosocial outcomes that evolve long after discharge. To date, no previous study has explored the psychosocial outcomes following EmLap as a collective, nor their change over time. This study aims to describe the holistic morbidity following EmLap within the first year following surgery. METHODS AND ANALYSIS: This is a multicentre, mixed-methods prospective 12-month cohort study with two participant populations: patient participants and family caregivers (FCGs). A target of 160 adult patients who undergo EmLap and can give informed consent will be included in the patient participant group. Patient participants will be asked to complete three patient surveys, incorporating validated patient-reported outcome measures (PROMs) to assess bio-psychosocial outcomes (EuroQol five-dimension five-level (EQ5D-5L), Gastrointestinal Quality Life Index-36, Patient Health Questionnaire-9, Generalised Anxiety Disorder 7, International Trauma Questionnaire, Caregiver Interaction Scale and Fatigue Severity Scale) in the 12 months following surgery. A subgroup of 15 patient participants will be asked to take part in two semistructured interviews at 6 and 12 months. A target of 15 associated family caregivers will be included in the FCG group. FCGs will be asked to take part in a semi-structured interview at 6 months to assess the EmLap impact on the wider support network. The primary outcome will be a change in quality of life (EQ5D-5L) at 12 months. Secondary outcomes will be changes in bio-psychosocial status at 3 and 12 months. Qualitative analysis will allow contextualisation of PROMS and further explore themes of EmLap morbidity. It is anticipated that the results of this study will help inform and develop standards of aftercare for future EmLap patients. ETHICS AND DISSEMINATION: This study has received ethical approval (Wales REC7;12/WA/0297) and will be undertaken in accordance with the principles of Good Clinical Practice. We intend to disseminate study results in peer-reviewed journals and medical conferences, as well as a lay report to study participants. TRIAL REGISTRATION NUMBER: Clinical Trials.gov NCT05281627.

Assessing LLIN distribution implementation using evidence-informed intervention core elements: a qualitative study in a resource-constrained setting.

BACKGROUND: The National Malaria Elimination Programme implements the mass LLIN Distribution Campaigns in Ghana. Implementation science promotes the systematic study of social contexts, individual experiences, real-world environments, partnerships, and stakeholder consultations regarding the implementation of evidence-informed interventions. In this paper, we assess the core elements of the mass LLIN distribution campaign in a resource constrained setting to learn best implementation practices. Three core domains were assessed through the application of Galbraith's taxonomy (i.e., implementation, content, and pedagogy) for evidence-informed intervention implementation. METHODS: Six districts in two regions (Eastern and Volta) in Ghana participated in this study. Fourteen Focus Group Discussions (FGDs) were conducted across these communities. Eligible participants were purposively sampled considering age, occupation, gender, and care giving for children under 5 years and household head roles. All audio-recorded FGDs were transcribed verbatim, data was assessed and coded through deductive and inductive processes. NVivo software version 13 was used for the coding process. Themes were refined, legitimized, and the most compelling extracts selected to produce the results. RESULTS: Sixty-nine (69) caregivers of children under 5 years and sixty (60) household heads participated in the FGDs. All caregivers were females (69), whilst household heads included more males (41). Core elements identified under implementation domain of the LLIN distribution campaign in Ghana include the registration and distribution processes, preceded by engagement with traditional authorities and continuous involvement of community health volunteers during implementation. For pedagogy domain, core elements include delivery of intervention through outreaches, illustrations, demonstrations, and the use of multiple communication channels. Core elements realized within the content domain include information on effective malaria prevention, and provision of information to enhance their self-efficacy. Yet, participants noted gaps (e.g., misuse) in the desired behavioural outcome of LLIN use and a heavy campaign focus on women. CONCLUSION AND RECOMMENDATIONS: Although the implementation of the mass LLIN distribution campaigns exhibit components of core elements of evidence informed interventions (implementation, content and pedagogy), it has not achieved its desired behavioural change intentions (i.e. continuous LLIN use). Future campaigns may consider use of continuous innovative pedagogical approaches at the community level and lessons learnt from this study to strengthen the implementation process of evidence-based health interventions. There is also the need for standardization of core elements to identify the number of core elements required within each domain to achieve efficacy. ETHICAL APPROVAL: Ethical clearance was obtained from the Ghana Health Service Ethics Review Committee (GHS-ERC: 002/06/21) before the commencement of all data collection.

'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.

BACKGROUND: To explore carers' experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel internet-based psychoeducational intervention to support management of behavioural symptoms (BehSymp) in MND. The study also investigated carers' views and acceptability of MiNDToolkit. METHODS: A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n = 11). All interviews were audio-recorded, professionally transcribed verbatim and analysed thematically. RESULTS: Five themes were identified: (1) In the dark: carers' experiences and reactions to BehSymp; (2) Others can see: the role of HCPs in identifying symptoms - and perceived opportunities for carers to receive support; (3) Shedding light: carers implementation and perceived impact of the MiNDToolkit content; (4) Acceptability and carers' engagement with MiNDToolkit; (5) Future implementation. Carers' experience of BehSymp was particularly distressing when symptoms were apparently out of context. MiNDToolkit appeared to support learning that BehSymp were part of MND. Content resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good, with varied input from HCPs. Greater and nuanced involvement from HCPs seem important to support management of BehSymp. Recommendations for a full-scale trial emerged, including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home. CONCLUSIONS: MiNDToolkit was acceptable to carers overall. Recommended improvements should be actioned in a full-scale trial.

[Home support for vulnerable older people: from shared decision-making to negotiation : A qualitative pilot study]. / L'accompagnement à domicile de personnes âgées vulnérables : de la prise de décision partagée à la négociation : Une étude qualitative pilote.

Shared decision-making allows older people to discuss and change their care with informal caregivers and healthcare professionals. When opinions differ, an older person's decision-making ability can be compromised by many factors. The objective of this qualitative pilot study was to study the dynamics of shared decision-making in home care support for vulnerable older people. Observations were carried out at the older people's homes during appointments with the network's healthcare professionals. Semi structured interviews were then conducted with older people, caregivers and healthcare professionals observed. When opinions differ, negotiation dynamics then develop between older people, caregivers and healthcare professionals. Using a dedicated negotiation framework, we identified four types of negotiation between the stakeholders in home care decision-making, influenced by various articulations of individual, collective and environmental factors.

Dehumanization and Minimization of Informal Caregivers Suffering: The Legitimizing Role of Justice Perceptions.

Informal caregivers, who provide unpaid care work to individuals with disabilities, are devalued despite their important contributions to society. Identifying the factors contributing to their devaluation is crucial for recognizing and valuing their work. In two experimental studies, we examined (a) whether informal caregivers are dehumanized; (b) the moderating impact of belief in a just world (BJW) on this process; and (c) the predictive impact of BJW and the dehumanization of informal caregivers on the perception of informal caregivers' suffering. In Study 1 (N = 180), a 2 (informal caregiver vs. non-caregiver) X 2 (female vs. male) between-participants design was used; in Study 2 (N = 205), there were two experimental conditions: female informal caregiver vs. male informal caregiver. Participants were randomly assigned to one description of a target and were asked to complete measures assessing the dehumanization of the target (Studies 1 and 2), the perception of the suffering of the target (Study 2), and a measure of BJW referring to themselves (Study 2). Results showed the expected dehumanization effect, such that participants attributed fewer uniquely human emotions to informal caregivers compared to non-caregivers, regardless of their gender (Studies 1 and 2). However, this effect was observed only among participants with higher BJW (Study 2). Furthermore, BJW and the dehumanization of informal caregivers predicted the minimization of the perception of informal caregivers' suffering (Study 2). These results establish a theoretical relationship between these research areas and offer insights for practical implications and future research.

A sequential multiple assignment randomized trial of symptom management for cancer survivors during treatment and their informal caregivers.

CONTEXT: Many cancer survivors and their informal caregivers experience multiple symptoms during the survivor's treatment. OBJECTIVE: Test relative effectiveness and optimal sequencing of two evidence-based interventions for symptom management. METHODS: In this sequential multiple assignment randomized trial (SMART), survivors of solid tumors with elevated depression or anxiety and their caregivers as dyads were initially randomized after baseline assessment in a 3:1 ratio to the Symptom Management and Survivorship Handbook (SMSH, N = 277 dyads) intervention or SMSH plus 8 weeks of telephone interpersonal counseling (TIPC, N = 97 dyads). After 4 weeks, survivors who were not responding (no improvement or worsening score on depression and/or anxiety item) to SMSH only and their caregivers were re-randomized to continue with SMSH alone (N = 44 dyads) to give it more time or to SMSH + TIPC (N = 44 dyads). Mixed effects and generalized linear models compared severity of depression, anxiety, and a summed index of 16 other symptoms over weeks 1-13 and week 17 between randomized groups and among three dynamic treatment regimes (DTRs). Dyads received SMSH only for 12 weeks (DTR1); SMSH for 12 weeks with 8 weeks of TIPC added from week 1 (DTR2); and SMSH for 4 weeks followed by the combined SMSH + TIPC for 8 weeks if no response at 4 weeks (DTR3). RESULTS: Survivors randomized initially to SMSH alone had significantly lower anxiety over weeks 1-13 compared to those randomized to the combined SMSH + TIPC. In comparing DTRs, survivor's anxiety was significantly lower at week 13 for DTR1 compared to DTR2 with no other main effects for survivors or caregivers. Exploratory moderation analyses indicated a potential benefit of adding TIPC for caregivers of non-responders with elevated baseline symptoms. CONCLUSION: SMSH + TIPC did not result in better symptom outcomes at week 17 than SMSH alone. Lower intensity SMSH may improve depression and anxiety symptoms for most survivors and their caregivers. TRIAL REGISTRATION: Clinicaltrails.gov ID number, NCT03743415; approved and posted on 11/16/2018.

Examining predictors of loneliness among Older Americans Act National Family Caregiver Support Program participants.

Family caregivers may be at particular risk for social isolation and loneliness. Multiple factors can impact caregivers' health and well-being outcomes, including loneliness. Guided by an adaptation of the Stress Process Model of Caregiving, this study uses the 2019 National Survey of Older Americans Act Participants (NSOAAP)-Family Caregiver Support module to inform efforts to reduce loneliness through family caregiver support programs. A hierarchical multiple regression model reveals that caregivers who report more loneliness are more likely to be female, Hispanic, living alone, not a child or other caregiver of the care recipient, have a care recipient with 3+ ADL needs, experience more social life conflict related to caregiving, experience less joy in caregiving, feel less appreciated by the care recipient, feel less support in caregiving, and attend counseling. This study helps advance the goals of the National Strategy to Support Family Caregivers, and the findings underscore the importance of continuing and expanding efforts to address loneliness and related well-being outcomes among family caregivers.

Endogenous Control and Reward-based Mechanisms Shape Infants' Attention Biases to Caregiver Faces.

Infants rely on developing attention skills to identify relevant stimuli in their environments. Although caregivers are socially rewarding and a critical source of information, they are also one of many stimuli that compete for infants' attention. Young infants preferentially hold attention on caregiver faces, but it is unknown whether they also preferentially orient to caregivers and the extent to which these attention biases reflect reward-based attention mechanisms. To address these questions, we measured 4- to 10-month-old infants' (N = 64) frequency of orienting and duration of looking to caregiver and stranger faces within multi-item arrays. We also assessed whether infants' attention to these faces related to individual differences in Surgency, an indirect index of reward sensitivity. Although infants did not show biased attention to caregiver versus stranger faces at the group level, infants were increasingly biased to orient to stranger faces with age and infants with higher Surgency scores showed more robust attention orienting and attention holding biases to caregiver faces. These effects varied based on the selective attention demands of the task, suggesting that infants' attention biases to caregiver faces may reflect both developing attention control skills and reward-based attention mechanisms.

Efficacy of COMPAs, an App Designed to Support Communication Between Persons Living With Dementia in Long-Term Care Settings and Their Caregivers: Mixed Methods Implementation Study.

BACKGROUND: Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout. OBJECTIVE: This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden. METHODS: In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs. RESULTS: Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65%; t15=2.430; P=.03; d=0.61 [medium effect size]). CONCLUSIONS: COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions.

Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers.

OBJECTIVES: Mesothelioma is an aggressive cancer predominantly affecting the lung and abdominal linings. It can have a unique impact on mental health and well-being (MHWB) due to its incurability, poor prognosis and asbestos-exposure causation. This review's aims were to identify/synthesise international evidence on mesothelioma's MHWB impacts; explore MHWB interventions used by patients and carers; and identify evidence of their effectiveness. DESIGN: Systematic review. DATA SOURCES: Databases, searched March 2022 and March 2024, were MEDLINE; CINAHL; PsycINFO; Cochrane Library; ASSIA. ELIGIBILITY CRITERIA: We included study designs focusing on psychological impacts of living with mesothelioma and MHWB interventions used by patients and informal carers, published in English since January 2002. DATA EXTRACTION AND SYNTHESIS: A team of reviewers screened included studies using standardised methods. Quality was assessed using validated tools: Mixed-Methods Appraisal tool for primary research and Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews. RESULTS: Forty-eight studies met the inclusion criteria: 20 qualitative, 16 quantitative, nine reviews, two mixed-methods, one combined systematic review/qualitative study. UK studies predominated. Many MHWB impacts were reported, including traumatic stress, depression, anxiety and guilt. These were influenced by mesothelioma's causation, communication issues and carer-patient relational interactions. Participants used wide-ranging MHWB interventions, including religious/spiritual practice; talking to mental-health professionals; meaning-making. Some strategies were presented as unhelpful, for example, denial. Participants reported lack of access to support. CONCLUSIONS: Most qualitative studies were rated high quality. The quality of the quantitative studies and reviews varied. The sparse literature regarding MHWB in mesothelioma means more research is needed into impacts on patients and carers, including trauma. To enable access to evidence-based support, research is recommended concerning MHWB interventions' effectiveness in mesothelioma. PROSPERO REGISTRATION NUMBER: CRD42022302187.

What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums.

OBJECTIVES: As part of a wider study, our aim was to elicit perspectives of people with congenital heart disease (CHD) and/or their parents/carers about their experiences of healthcare and what is important to them when receiving care. DESIGN AND SETTING: A qualitative study involving a series of closed, asynchronous, online discussion forums underpinned by an interpretivist framework and set up and moderated by three patient charities via their Facebook pages. PARTICIPANTS: People with CHD and parents/carers of people with CHD from the UK. RESULTS: Five forums were run for 12-24 weeks across the three charities, and 343 participants signed up to the forums. Four linked themes related to processes of care were identified following thematic analysis of the transcripts: relationships and communication; access and coordination; experience of discrete episodes of care and psychological support. These impacted how care was experienced and, for some patients, outcomes of CHD and its treatment as well as broader health outcomes. In addition, context relating to stages of the patient journey was described, together with patient-related factors such as patients' knowledge and expertise in their own condition. CONCLUSIONS: People with CHD and their parents/carers want individualised, person-centred care delivered within an appropriately resourced, multidisciplinary service. Although examples of excellent care were provided it is evident that, from the perspective of patients and parents/carers, some National Health Service Standards for people with CHD were not being met.

Is palliative care a utopia for older patients with organ failure, dementia or frailty? A qualitative study through the prism of emergency department admission.

BACKGROUND: Nearly three out of four older people will use the emergency department (ED) during their last year of life. However, most of them do not benefit from palliative care. Providing palliative care is a real challenge for ED clinicians who are trained in acute, life-saving medicine. Our aim is to understand the ED's role in providing palliative care for this population. METHODS: We designed a qualitative study based on 1) interviews - conducted with older patients (≥ 75 years) with a palliative profile and their informal caregivers - and 2) focus groups - conducted with ED and primary care nurses and physicians. Palliative profiles were defined by the Supportive and Palliative Indicators tool (SPICT). Qualitative data was collected in French-speaking Belgium between July 2021 and July 2022. We used a constant inductive and comparative analysis. RESULTS: Five older patients with a palliative profile, four informal caregivers, 55 primary and ED caregivers participated in this study. A priori, the participants did not perceive any role for the ED in palliative care. In fact, there is widespread discomfort with caring for older patients and providing palliative care. This is explained by multiple areas of tensions. Palliative care is an approach fraught with pitfalls, i.e.: knowledge and know-how gaps, their implementation depends on patients'(co)morbidity profile and professional values, experiences and type of practice. In ED, there are constant tensions between emergency and palliative care requirements, i.e.: performance, clockwork and needs for standardised procedures versus relational care, time and diversity of palliative care projects. However, even though the ED's role in palliative care is not recognised at first sight, we highlighted four roles assumed by ED caregivers: 1) Investigator, 2) Objectifier, 3) Palliative care provider, and 4) Decision-maker on the intensity of care. A common perception among participants was that ED caregivers can assist in the early identification of patients with a palliative profile. CONCLUSIONS: Currently, there is widespread discomfort regarding ED caregivers caring for older patients and providing palliative care. Nonetheless, ED caregivers play four roles in palliative care for older patients. In the future, ED caregivers might also perform the role of early identifier.

Death anxiety among caregivers of patients with advanced cancer: a cross-sectional survey.

PURPOSE: This study aimed to investigate death anxiety (DA) in caregivers of patients with advanced cancer and identify associated factors in the context of Chinese culture. METHODS: Caregivers (N = 588) of advanced cancer patients in a tertiary cancer hospital completed anonymous questionnaire surveys. Measures included the Chinese version of the Templer Death Anxiety Scale (C-T-DAS), the Quality-of-Life Scale, the State-Trait Anxiety Scale, and the Social Support Rating Scale. Data were analyzed in SPSS (IBM Corp, Armonk, NY, USA) using descriptive statistics, Pearson's correlation test, and linear regression. RESULTS: Respondents returned 588 (93.03%) of the 632 questionnaires. The total C-T-DAS score was 7.92 ± 2.68 points. The top-scoring dimension was "Stress and pain" (3.19 ± 1.29 points), followed by "Emotion" (2.28 ± 1.31 points) and "Cognition" (1.40 ± 0.94 points). In contrast, the lowest-scoring dimension was "Time" (1.06 ± 0.77 points). Factors associated with DA (R2 = 0.274, F = 13.348, p < 0.001) included quality of life (QoL), trait anxious personality, social support, caregiver length of care, caregiver gender, and patients' level of activities of daily living (ADL). CONCLUSIONS: Our results demonstrated high levels of DA in caregivers of patients with advanced cancer. Generally, female caregivers and those with low social support had high DA. Caregivers caring for patients with low ADL levels or with a low QoL and trait anxious personality reported high DA. Certain associated factors help to reduce caregivers DA. Social interventions are recommended to improve the end-of-life transition and trait anxious personality as well as quality of life for caregivers.

EPIC-CP pilot trial study protocol: a multicentre, randomised controlled trial investigating the feasibility and acceptability of social prescribing for Australian children with cerebral palsy.

INTRODUCTION: The social determinants of health contribute to poorer health outcomes for children with cerebral palsy (CP) and are barriers to families accessing health services. At an individual level, social determinants of health are experienced as unmet social needs, for example, unsafe housing conditions. There is emerging evidence that clinical pathways for the systematic identification and referral to services for unmet social needs can support families to address these needs. These clinical pathways have not been implemented for children with CP. The objectives are to investigate the feasibility and acceptability of two co-designed social needs clinical pathways for parents/caregivers of children with CP-social prescribing (ie, Community Linker plus resource pack) compared with resource pack only. METHODS AND ANALYSIS: This pilot randomised controlled trial will run at the three tertiary paediatric rehabilitation services in New South Wales, Australia. A total of 120 participants will be recruited, with randomisation stratified by study site. A survey tool will be used to identify families experiencing unmet social needs. Parents/caregivers who report one or more unmet social need/s and consent will be eligible. The active control group will receive a resource pack containing information on community services to support unmet social needs. The social prescribing intervention group will receive one-on-one Community Linker support, in addition to the resource pack. The survey tool, intervention, logic model, and resource pack were co-designed with patient families and their healthcare workers. Feasibility of the research design and the clinical pathways will be evaluated using the number/proportion of parents/caregivers who complete the survey tool, consent, engage with the intervention, and complete research measures. Acceptability will be evaluated using questionnaires and qualitative interviews. ETHICS AND DISSEMINATION: Human research ethics approval was granted by the Sydney Children's Hospitals Network Human Research Ethics Committee (2022/ETH01688). Participants and stakeholders will receive updates and findings via regular communication channels including meetings, presentations, and publications. TRIAL REGISTRATION NUMBER: Australia New Zealand Clinical Trials Registry: 12622001459718.

Assessment of perceived patient comfort and ease of bedpan handling by caregivers, a cross-sectional survey.

INTRODUCTION: Since its creation in the 18th century, bedpan has remained more or less the same. Its unique material composition varies from one model to another, but its shape remains relatively similar. The environment is one of the four pillars of the nursing paradigm. It is therefore essential to question this device in the nursing discipline. AIM: To assess perceived patient comfort and ease of bedpan handling by nurses and their assistants. METHOD: A cross-sectional survey via an online questionnaire was conducted among nurses and nursing assistants, nursing students, and health executives using the bedpan for their patients to assess their feelings and their level of satisfaction. The questionnaire asks professionals about the ease of handling the bedpan and the patient's perceived comfort. RESULTS: 431 responses were obtained out of 3007 persons interviewed (14.3%). 83.0% believe that the cause of poor elimination by the patient is often or very often due to physical discomfort on the bedpan. 62.6% find the installation of the bedpan rather tough or very difficult. 59.2% find the removal of the bedpan rather tough or very difficult. DISCUSSION: Our study confirms our hypothesis and highlights a lack of comfort in the bedpan as perceived by professionals. This analysis is the first step in enabling the nurse researcher to support change in the transformation paradigm.

Outcomes of prognostication in people living with advanced cancer: A qualitative study to inform a Core Outcome Set.

BACKGROUND: Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study, the second step in a wider study developing such a Core Outcome Set, aimed to explore the perceptions and experiences of patients with advanced cancer, informal caregivers, and clinicians regarding the potential outcomes to assess the impact of prognostication. METHODS: We conducted semi-structured interviews with patients living with advanced cancer (n = 8), informal caregivers (n = 10), and clinicians (n = 10) recruited from palliative care services across three sites in London, United Kingdom. Interviews were conducted in-person, via telephone, or video conferencing, and were audio-recorded. Data were analysed using framework analysis. Findings were compared with outcomes identified in a previously published systematic review. RESULTS: We identified 33 outcomes, 16 of which were not previously reported in the literature. We grouped these outcomes into 10 domains, nine from the COMET taxonomy, plus a tenth domain (spiritual/religious/existential functioning/wellbeing) which we added further to the previous systematic review. These findings highlighted discrepancies between the priorities of existing research and those of stakeholders. Novel outcomes highlight the more personal and emotional impacts of prognostication, whilst other outcomes confirm the relevance of survival length, depression, anxiety, pain, hope dynamics, emotional distress, and the quality of patient-clinician relationships for assessing the impact of prognostication. CONCLUSIONS: This study offers valuable insights into outcomes which matter to key stakeholders, particularly patients and informal caregivers, highlights discrepancies between their priorities and those identified in previous studies, and underscores the need for a patient-centred approach in research and clinical practice in prognostication in advanced cancer. This work will contribute to developing a Core Outcome Set for assessing the impact of prognostication in advanced cancer.