Family self-care emphasizes a family's role in health promotion and protection, reflecting society's views on health, illness, and human relationships. In families with children with an intellectual disability, where the child may lack self-care abilities, family self-care becomes crucial, highlighting that self-care needs exceed individual capacity and require family cooperation. Background/Objectives: This pilot study aims to explore the factors influencing family self-care and define attributes of its cognitive, psychosocial, physical, and behavioral domains in families with children with intellectual disabilities. Methods: A descriptive and correlational study with forty-four families was conducted. Exploratory analysis and linear regression analysis were estimated through the assumptions of the Gauss-Markov theorem (specifically homoscedasticity, normality, and model specification adequacy). Multicollinearity was also evaluated. Results: The significant family conditioning factors identified were family income, education level, degree of physical and functional dependence of the child, family household size, and social support. Socioeconomic, demographic, and health-related factors shaped self-care experiences. Conclusions: Family empowerment and the impact of disability are key elements in enabling self-care. Families reporting a greater impact of their child's condition tended to feel less empowered, directly affecting their ability to perform daily self-care activities. The evidence suggests a pattern in which self-care activities might be reactive rather than proactive and focused on managing immediate challenges rather than long-term well-being. These insights can guide healthcare professionals, especially family nurses, toward a holistic, family-centered approach to supporting families with children with intellectual disabilities.

There has been an increased focus on patient involvement in health care worldwide, with studies showing that involving patients in their treatment and care is associated with positive outcomes. However, there is a dearth of knowledge about inpatient preferences and experiences of involvement in neurosurgery in Scandinavian countries. This study aimed to identify inpatients' preferences regarding their involvement in their treatment and the extent to which they experienced being involved in their treatment and care during admission.

A questionnaire survey was administered in a neurosurgical department. Patients' preferences and experiences regarding their involvement in their treatment and care were assessed using a validated questionnaire.

One hundred patients were enrolled in the study. Eighty-two percent of them preferred sharing responsibility for their treatment with their doctor; 16% preferred leaving their treatment decisions entirely up to the doctor; and 2 percent preferred making the final decision about their treatment independently. The average participation score for information, communication, and participation was 4.08, suggesting that the patients experienced a high level of involvement in their care and treatment. Thirty patients reported preferences for changes during admission, while 25 suggested ideas for improvement.

The patients mostly preferred shared decision-making about their treatment during hospitalization and generally reported high involvement in their treatment and care. The results showed a desire for improved information sharing and dialog among healthcare professionals, patients, and relatives.

Shared  decision making in healthcare is a fundamental right for patients. Healthcare professionals' perception of their own abilities to enable shared decision making is crucial for implementing shared decision making within service. IcanSDM (I can shared decision making) is a brief measure to investigate healthcare professionals' perception of shared decision making approaches to their practices. It was developed in Canada with French and English versions, and recently translated into German. This study aims to adapt the IcanSDM measure for Danish-speaking healthcare professionals, and evaluate its psychometric properties.

Cultural adaptation and translation based on Beaton et al.'s approach was applied. A forward translation by ten people and a backward translation by two people were performed. To assess comprehensibility, cognitive interviews were conducted with 24 healthcare professionals. Eighty healthcare professionals who were trained in shared decision making for either one hour (n = 65) or one day (n = 15) participated in the psychometric evaluation. The evaluation concerned acceptance, item characteristics, skewness, item difficulties, corrected item-total correlations, inter-item correlations, factorial structure, internal consistency, and responsiveness.

The forward and backward translation revealed few discrepancies, and participants understood the items well. The psychometric evaluation showed a high completion rate and acceptable item difficulties and discrimination values. Both the factor analysis and the internal consistency showed a 2-factor structure: 1) healthcare professionals' capacity to implement shared decision making; and 2) healthcare professionals' capacity to practise shared decision making. The IcanSDM_Danish obtained a Cronbach's alpha coefficient of 0.74. The evaluation of responsiveness showed improvement, but was not statistically significant.

The IcanSDM_Danish has good cross-cultural validity and internal consistency, and a 2-factor structure. The IcanSDM_Danish is capable of providing reliable and valid measurement when evaluating constructed knowledge about shared decision making, and may be able to support the implementation of shared decision making training and evaluation of its impact.

Decision-making and problem-solving processes are powerful activities occurring daily across all healthcare settings. Their empowering potential is seldom fully exploited, and they may even be perceived as disempowering. We developed the EMPOWER-UP questionnaire to enable assessment of healthcare users' perception of empowerment across health conditions, healthcare settings, and healthcare providers' professional backgrounds. This article reports the initial development of EMPOWER-UP, including face and content validation.

Four grounded theories explaining barriers and enablers to empowerment in relational decision-making and problem-solving were reviewed to generate a preliminary item pool, which was subsequently reduced using constant comparison. Preliminary items were evaluated for face and content validity using an expert panel of seven researchers and cognitive interviews in Danish and English with 29 adults diagnosed with diabetes, cancer, or schizophrenia.

A preliminary pool of 139 items was reduced to 46. Independent feedback from expert panel members resulted in further item reduction and modifications supporting content validity and strengthening the potential for generic use. Forty-one preliminary items were evaluated through 29 cognitive interviews, resulting in a 36-item draft questionnaire deemed to have good face and content validity and generic potential.

Face and content validation using an expert panel and cognitive interviews resulted in a 36-item draft questionnaire with a potential for evaluating empowerment in user-provider interactions regardless of health conditions, healthcare settings, and healthcare providers' professional backgrounds.

How patients make treatment choices in rectal cancer is poorly understood and may affect long-term regret and satisfaction. The objective of this study is to characterize decision-making preferences and their effect on decisional regret in patients undergoing restorative proctectomy for rectal cancer.

A prospective cohort study was conducted in a single academic specialist rectal cancer center from October 2018 to June 2022. Adult patients who underwent restorative proctectomy at least one year prior were recruited. Health literacy was assessed using the BRIEF instrument. Decision-making preferences regarding cancer treatment were assessed using the Control Preferences Scale. Decisional regret regarding their choice of restorative proctectomy was assessed using the Decision Regret Score. Bowel dysfunction was measured using the low anterior resection syndrome score.

Overall, 123 patients were included. Health literacy was categorized as adequate in 63%, marginal in 25%, and limited in 12%. Patients with adequate health literacy were more likely to prefer a collaborative decision-making role compared with those with low health literacy (86% vs 65%, P = .016). Patients with incongruence between preferred and actual decision-making roles were more likely to report high regret (56% vs 25%, P = .003). Patients with major low anterior resection syndrome were also more likely to experience high regret compared with patients with no/minor low anterior resection syndrome (44% vs 25%, P = .036).

A significant proportion of patients with rectal cancer undergoing restorative proctectomy do not have a decision-making role that is congruent with their preferences, and these patients experience a high degree of regret.

We still do not have comprehensive knowledge of which framework of patient-centered care (PCC) is appropriate for diabetes care, which elements of PCC are evidence-based, and the mechanism by which PCC elements are associated with outcomes through mediators. In this review, we elaborate on these issues. We found that for diabetes care, PCC elements such as autonomy support (patient individuality), cooperation and collaboration (system-level approach), com-munication and education (behavior change techniques), emotional support (biopsychosocial approach), and family/other involvement and support are critically important. All of these factors are directly associated with different patient outcomes and indirectly associated with outcomes through patient activation. We present the practical implications of these PCC elements.

People should have access to healthcare services that are effective, safe and secure, patient-centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction.

We conducted in-depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3-30 years), and severity.

Four main themes were developed: (1) 'Nonexistent services' cover patients' experience that healthcare services had nothing to offer them after receiving their ME/CFS-diagnosis. (2) 'Nonpersonalised services' documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient's need. (3) 'Slow services' address patients' experience of getting services too late (or too little) to be useful. (4) 'Wrong services' comprise patients' experiences of being offered and/or 'forced' to accept services that they felt were inappropriate for their health problems.

Providers' lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers' belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users' unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers' perspectives on caregiving and the barriers they experience for providing high-quality care.

The ME-patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.

An often-hidden element in healthcare students' education is the pedagogy of public involvement, yet public participation can result in deep learning for students with positive impacts on the public who participate.

This article aimed to synthesize published literature reviews that described the impact of public participation in healthcare students' education.

We searched MEDLINE, EMBASE, ERIC, PsychINFO, CINAHL, PubMed, JBI Database of Systematic Reviews and Implementation Reports, the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects and the PROSPERO register for literature reviews on public participation in healthcare students' education.

Reviews published in the last 10 years were included if they described patient or public participation in healthcare students' education and reported the impacts on students, the public, curricula or healthcare systems.

Data were extracted using a predesigned data extraction form and narratively synthesized.

Twenty reviews met our inclusion criteria reporting on outcomes related to students, the public, curriculum and future professional practice.

Our findings raise awareness of the benefits and challenges of public participation in healthcare students' education and may inform future research exploring how public participation can best be utilized in higher education.

This review was inspired by conversations with public healthcare consumers who saw value in public participation in healthcare students' education. Studies included involved public participants, providing a deeper understanding of the impacts of public participation in healthcare students' education.

Woman-centred care is a collaborative approach to care management, where the woman and her health provider recognise one another's expertise and interact based on mutual respect to provide adequate information and individualised care. However, woman-centred care has not been fully achieved, particularly for women who have experienced female genital mutilation in high-income countries. A lack of clear guidelines defining how to implement woman-centred care may negatively impact care provision. This study sought to explore the quality of point-of-care experiences and needs of pregnant women with female genital mutilation in Australia to identify elements of woman-centred care important to women and how woman-centred care can be strengthened during consultations with health professionals. This multi-method qualitative study comprised two phases. In phase one, we conducted interviews with women with female genital mutilation to explore their positive experiences during their last pregnancy, and in phase two, a workshop was held where the findings were presented and discussed to develop recommendations for guidelines to support woman-centred care. The findings of the first phase were presented under three distinct categories of principles, enablers, and activities following a framework from the literature. In phase two, narrative storytelling allowed women to share their stories of care, their preferences, and how they believe health providers could better support them. Their stories were recorded visually. This study highlights the importance of a comprehensive approach to woman-centred care involving experts, clinicians, community members, and women in designing education, tools, and guidelines.

Self-care emerges in the family context, despite being seen as an individual determinant of health. The family, understood as a system and social unit, converges to a pattern of self-care and not to a sum of it, assuming relevance at certain moments of the life cycle, particularly in the management of chronic disease.

To perform the transposition of individual self-care to the family self-care, considering the current family's needs and characteristics, by adopting family self-care as the core concept of a care pattern as a determinant of family health.

The family unit is the most influential factor in the health status of individuals, and it will be through family self-care behaviors that families can be healthier by managing their diseases more effectively. They seek to achieve family health, maintaining health through health promotion and disease management practices, always mediated by family self-care behaviors.

Implementation of woman-centred care in evidence-based maternity practice requires clinicians to be skilled in shared decision-making, yet there is limited training or research into such interventions.

Shared decision-making enables women to make informed decisions in partnership with clinicians where there are varied clinical options in relation to indications for and timing of planned birth.

We aimed to develop a shared decision-making training intervention and evaluate its feasibility and acceptability to midwives and obstetricians.

The intervention was co-designed by midwifery and medical clinician-researchers, and a consumer representative. Online training and demonstration videos were distributed to midwives and obstetricians in three Sydney hospitals, followed by two online workshops in 2021 and 2022 where participants practised shared decision-making in roleplaying scenarios tailored to timing of birth. Training was evaluated using post-workshop and post-training surveys and semi-structured qualitative interviews.

The training workshop format, duration and content were well received. Barriers to the uptake of shared decision-making were time, paternalistic practices and fear of repercussions of centring women in the decision-making process.

The intervention enabled midwifery and medical colleagues to learn communication repertoires from each other in woman-centred discussions around timing of birth. Roleplay scenarios enabled participants to observe and provide feedback on their colleagues' shared decision-making practices, while providing a space for collective reflection on ways to promote, and mitigate barriers to, its implementation in practice.

Shared decision-making training supports maternity clinicians in developing skills that implement woman-centred care in the timing of planned birth.