UNASSIGNED: Family interventions (FI) are recommended as part of the treatment for psychotic disorders, but the implementation in mental health services is generally poor. Recently, The Implementation of guidelines on Family Involvement for persons with Psychotic disorders (IFIP) trial, demonstrated significant improvements in implementation outcomes at cluster-level. This sub-study aims to examine the effectiveness of the IFIP intervention on relatives\' outcomes and received FI.
UNASSIGNED: A cluster randomized controlled trial, was conducted in 15 Norwegian Community Mental Health Center (CMHC) units that were randomized to either the IFIP intervention, including implementation interventions and clinical interventions, or treatment as usual (TAU). The clinical interventions consisted of FI: basic family involvement and support (BFIS) to all patients and family psychoeducation (FPE) to as many as possible. Patients with psychotic disorders and their closest relative were invited to fill in questionnaires at inclusion and 6 months and 12 months follow-up. Received FI was reported by both relatives and clinicians. The relatives\' primary outcome was satisfaction with health service support, measured by the Carer well-being and support questionnaire part B (CWS-B). The relatives\' secondary outcomes were caregiver experiences, expressed emotions and quality of life. Patients\' outcomes will be reported elsewhere.
UNASSIGNED: In total 231 patient/relative pairs from the CMHC units were included (135 intervention; 96 control).The relatives in the intervention arm received an increased level of BFIS (p=.007) and FPE (p < 0.05) compared to the relatives in the control arm, including involvement in crisis planning. The primary outcome for relatives\' satisfaction with health service support, showed a non-significant improvement (Cohen\'s d = 0.22, p = 0.08). Relatives experienced a significant reduced level of patient dependency (Cohen\'s d = -0.23, p = 0.03).
UNASSIGNED: The increased support from clinicians throughout FI reduced the relatives\' perceived level of patient dependency, and may have relieved the experience of responsibility and caregiver burden. The COVID-19 pandemic and the complex and pioneering study design have weakened the effectiveness of the IFIP intervention, underscoring possible potentials for further improvement in relatives\' outcomes.
UNASSIGNED: ClinicalTrials.gov, identifier NCT03869177.

Food allergies severely impact the health-related quality of life (HRQoL) of patients and their caregivers (family or informal caregivers). Currently there is no comprehensive review to provide an overview and critical assessment of the instruments in the field. Six databases were searched from inception until 10 August 2023, and a combination of subject terms and free words was used to search the literature. We used the COnsensus-based Standards for the selection of health Measurement INstruments methodology (COSMIN) to evaluate the measurement properties of the instruments. Forty-one studies reported on ten eligible instruments. Based on COSMIN guidelines, one instrument was recommended for Grade A, and the remaining nine instruments were recommended for Grade B. The Grade A instrument identified, the Food Allergy Quality of Life Questionnaire-Parent Form (FAQLQ-PF), can help researchers assess the effectiveness of treatment for patients with food allergy and to understand the psychosocial impact of the disease on patients.

BACKGROUND: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives.
METHODS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies.
BACKGROUND: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives.
BACKGROUND: https://osf.io/beqjr.

UNASSIGNED: To identify the nursing guidelines for caregivers of children with congenital heart disease (CHD) after hospital discharge.
UNASSIGNED: This is an integrative literature review of articles published between 2016 and 2022. In order to select the studies, the controlled descriptors \"Nursing Care\", \"Nursing\", \"Heart Defects, Congenital\", \"Caregivers\" and \"Child\" were used in four scientific databases - LILACS, SCIELO, PUBMED and BDENF.
UNASSIGNED: The current integrative literature review analyzed 11 articles from the original sample. The main nursing care issues are those related to nutrition, oral health, leisure and physical activity, care with medication and the surgical wound, as well as the need to offer support to these children\'s families. The authors emphasize that nurses are present at various moments in a child\'s life, including at birth, but the approach to CHD is scarce in their basic training as nurses, as well as in their professional practice, and there is a shortage of continuing education proposals for the care of children with CHD.
UNASSIGNED: The study showed that nursing guidelines are focused on basic care and family support for these children. Lastly, this study highlighted the important role of nurses in terms of consolidating guidelines on the care needs of these children.

BACKGROUND: Dementia disproportionately affects women including persons living with dementia and caregivers. Person-centered care, rather than disease-focused, is recommended to improve care for affected persons including caregivers. General practitioners play a central role in dementia care but find it challenging due to inadequate training. The study aimed to assess if and how dementia guidelines provide clinicians with guidance on person-centred care for women affected by dementia.
METHODS: We searched for publicly available English-language guidelines on the overall management of dementia in MEDLINE, EMBASE and the Guidelines International Network repository. We employed deductive and summative content analysis, and categorized person-centered care guideline content based on established frameworks, and conveyed our results using summary statistics, text, and tables.
RESULTS: We reviewed 15 guidelines published from 2006 to 2020 in eight countries. Few (4, 23%) involved persons living with dementia or caregivers in guideline development. Regarding general person-centred care, guidelines mostly addressed the domains of exchange information (93%), share decisions (93%), enable self-management (93%) and address emotions (87%), while few offered content on manage uncertainty (33%) or foster a healing relationship (13%). Regarding dementia-specific person-centred care, most guidelines addressed intersectionality (tailoring care for diverse characteristics) (80%), but few included content on the domains of quality of life (67%), dignity (53%) or sex/gender issues (20%). Even when mentioned, the guidance was typically brief. We identified 32 general and 18 dementia-specific strategies to achieve person-centered care by compiling information from these guidelines.
CONCLUSIONS: This study identified inconsistent and insufficient guideline content on person-centred care for women with dementia. Compiled strategies for achieving person-centred care could be used by developers to enhance existing and future dementia guidelines; and inform the development of policies or programs, education, tools for clinicians, and quality improvement measures for evaluating dementia care. Future research is crucial for promoting person-centred dementia care for women living with dementia.

BACKGROUND:  Enhanced Milieu Teaching (EMT) is an evidence-based naturalistic developmental behavioural intervention (NDBI) for children with developmental disabilities. Little is known about the EMT\'s fit or what adaptations might be needed to improve its applicability within a resource-constrained setting.
OBJECTIVE:  To explore stakeholders\' perceptions of the contextual fit of EMT for young children with developmental disabilities in a resource-constrained context and to identify adaptations to improve EMT\'s contextual fit.
METHODS:  We conducted a descriptive qualitative study using semi-structured interviews and focus groups. Participants included 5 speech and language therapists and 11 caregivers of children with developmental disabilities who speak English and Afrikaans or isiXhosa. Using thematic analysis, data were coded into 10 subthemes and grouped according to the Adaptome framework components.
RESULTS:  Overall, stakeholders view EMT as an appropriate intervention in the South African context. They indicated that certain intervention components may need to be modified. Specifically, clinicians may need to adapt intervention materials and activities to be sensitive to families\' available resources, preferred activity routines and priorities. From these data, we provide guidelines to improve the fit of EMT in South Africa.
CONCLUSIONS:  Enhanced Milieu Teaching is an appropriate intervention in the South African context, although some adaptations can enhance its fit.Contribution: This article highlights the importance of engaging with stakeholders to determine the fit of NDBIs, like EMT, as they are implemented in new contexts. Based on these insights, stakeholder-informed adaptation guidelines are provided for improving the contextual fit of EMT in resource-constrained settings.

The Core Outcome Measures for Improving Care (COM-IC) project aims to deliver practical recommendations on the selection and implementation of a suite of core outcomes to measure the effectiveness of interventions for dementia care.
COM-IC embeds a participatory action approach to using the Alignment-Harmonisation-Results framework for measuring dementia care in Australia. Using this framework, suitable core outcome measures will be identified, analysed, implemented and audited. The methods for analysing each stage will be codesigned with stakeholders, through the conduit of a Stakeholder Reference Group including people living with dementia, formal and informal carers, aged care industry representatives, researchers, clinicians and policy actors. The codesigned evaluation methods consider two key factors: feasibility and acceptability. These considerations will be tested during a 6-month feasibility study embedded in aged care industry partner organisations.
COM-IC has received ethical approval from The University of Queensland (HREC 2021/HE001932). Results will be disseminated through networks established over the project, and in accordance with both the publication schedule and requests from the Stakeholder Reference Group. Full access to publications and reports will be made available through UQ eSpace (https://espace.library.uq.edu.au/), an open access repository hosted by The University of Queensland.

Hispanic cancer survivors face unique barriers to meeting American Cancer Society (ACS) nutrition and physical activity guidelines, which reduce the risk of cancer recurrence and mortality and improve quality of life. This pilot intervention trial evaluated the feasibility and acceptability of a two-week ACS guideline-based nutrition and physical activity text message intervention in a predominantly Hispanic sample of cancer survivors and their informal caregivers. A mixed methods approach was used to assess feasibility and acceptability of the intervention. Feasibility and acceptability were measured by meeting a-priori cut-offs of >80% for recruitment, retention, and text message response rate. Participants also completed a semi-structured exit interview by telephone that assessed intervention components. Thirteen cancer survivors and six caregivers (n = 19) participated in this pilot study; 78% self-identified as Hispanic. Mean time since treatment completion for survivors was 11.9 years (SD 8.4), and 67% had breast cancer. Cancer survivors had a higher acceptability rate for physical activity (94%) compared to nutrition messages (86%), whereas equal acceptability rates were observed for both types of messages among caregivers (91%). Texting interventions are a feasible, acceptable, and a cost-effective strategy that have the potential to promote lifestyle behavior change among Hispanic cancer survivors and caregivers.

BACKGROUND: There is evidence that patients with spasticity are not receiving adequate care. Identifying the unmet needs of patients with spasticity is essential to develop services and treatment strategies to better support this population This is an effort to identify challenges related to treatment of spasticity and provide the springboard for the implementation of identified solutions.
OBJECTIVE: To identify the main barriers to spasticity care and identify potential solutions.
METHODS: Delphi process.
METHODS: Expert panel.
METHODS: A total of 35 participants with diverse experience and knowledge related to spasticity care were invited and 29 attended an in-person 2022 Spasticity Summit hosted by the American Academy of Physical Medicine and Rehabilitation.
METHODS: The expert panel participated in a presummit survey to identify the main potential barriers to spasticity care. During the in-person meeting the panel initially worked in small groups and then as whole to reach consensus through the Delphi process. The panel also completed a postsummit survey.
RESULTS: Several barriers to spasticity care and potentials solutions were identified. Consensus was reached for the top three barriers and potential solutions (>50% and >75%, respectively). Top barriers included the need for a document listing all the challenges related to access of care for spasticity, increased caregiver and community awareness of spasticity, and education of clinicians regarding patient needs. Top solutions to barriers included increasing the number of providers who treat spasticity, enhancing patient and caregiver education, and developing and publishing a consensus guidance statement.
CONCLUSIONS: Consensus was achieved on the top three barriers to spasticity care and potential solutions. The purpose of this analysis is to pave the way for further development of solutions to improve the care of patients with spasticity.

To update on and describe the role of Disease Specific Programmes (DSPs), a multi-perspective real-world data (RWD) source, in the context of the evolution of the value and acceptance of real-world evidence (RWE) in clinical, regulatory and guideline decision-making.
DSPs are multi-national, multi-subscriber, multi-therapy cross-sectional surveys incorporating retrospective data collection from patient, caregiver and physician perspectives. Information collected covers the patient journey, including treatment/prescribing patterns and rationale, patient-reported outcomes, impact on work and everyday activities, attitudes towards and perceptions of the condition, adherence to treatment and burden of illness. Published peer-reviewed DSP papers were aligned with current key RWE themes identified in the literature, alongside their contribution to RWE.
RWE themes examined were: using RWE to inform clinical practice, patient and caregiver engagement, RWE role in supporting health technology assessments and regulatory submissions, informing value-driven healthcare decisions, real-world patient subgroup differences and therapeutic inertia/unmet needs; highlighting patients\' and caregivers\' experience of living with a disease, disconnect from their physicians, unmet needs and educational gaps.
DSPs provide a wealth of RWD in addition to evidence generated by registries, clinical trials and observational research, with wide use for the pharmaceutical industry, government, funding/regulatory bodies, clinical practice guideline insights and, most importantly, informing improvements in people\'s lives. The depth, breadth and heritage of information collected via DSPs since 1995 is unparalleled, extending understanding of how diseases are managed by physicians in routine clinical practice and why treatment choices are made, patients\' perceptions of their disease management, and caregiver burden.