OBJECTIVE: The aim of this study was to explore patients\' experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy.
BACKGROUND: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals\' preferences. There is a knowledge gap of successful approaches to support patients\' participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes.
METHODS: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT.
RESULTS: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors\' choice, and feeling selected for treatment.
CONCLUSIONS: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients\' preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients\' voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide the right basis for the decision-making process.

BACKGROUND: Participation in care is considered to promote safe and qualitative care. Care-dependent older persons ageing in place have increased emergency care needs, which initiate inter-organisational collaboration involving municipal home care and ambulance services. Previous research concludes that uncertainties exist regarding what participation in care means in clinical practice, which necessitates the need to illuminate the phenomenon for older persons in critical life situations.
OBJECTIVE: This study aimed to illuminate meanings of participation in prehospital emergency care from the perspective of care-dependent older persons experiencing acute illness at home.
METHODS: This study has a qualitative design with a lifeworld approach.
METHODS: A phenomenological hermeneutical method was used to analyse transcribed telephone interviews with eleven care-dependent persons aged 70-93 years.
RESULTS: Care-dependent older persons\' participation in prehospital emergency care means \'Entrusting life to professional caregivers\' when being in helpless solitude and existentially unsafe, which emphasises a deepened interpersonal dependence. Meanings of participation in care from the perspective of older persons involve Being reassured in togetherness, Being pliant in trust of emergency expertise, Being enabled through the agency of professional caregivers, and Encountering readiness in the emergency care chain.
CONCLUSIONS: Care-dependent older persons\' participation in prehospital emergency care is existential and involves interpersonal dependence. Togetherness brings reassurance, safety and opportunity for emotional rest while accessing the professional caregivers\' power, competence and abilities which provide opportunities for existence and movement towards well-being and continued living.
CONCLUSIONS: Prehospital emergency care from the perspective of care-dependent older persons transcends organisational boundaries and includes the municipal mobile safety alarm service. The involved municipal and regional organisations need to provide support by implementing lifeworld-led care models and care alternatives that enable professionals to recognise the existential dimension of participation in care.

BACKGROUND: There is growing evidence that parental participation in the care of small and sick newborns benefits both babies and parents. While studies have investigated the roles that mothers play in newborn units in high income contexts (HIC), there is little exploration of how contextual factors interplay to influence the ways in which mothers participate in the care of their small and sick newborn babies in very resource constrained settings such as those found in many countries in sub-Saharan Africa.
METHODS: Ethnographic methods (observations, informal conversations and formal interviews) were used to collect data during 627 h of fieldwork between March 2017 and August 2018 in the neonatal units of one government and one faith-based hospital in Kenya. Data were analysed using a modified grounded theory approach.
RESULTS: There were marked differences between the hospitals in the participation by mothers in the care of their sick newborn babies. The timing and types of caring task that the mothers undertook were shaped by the structural, economic and social context of the hospitals. In the resource constrained government funded hospital, the immediate informal and unplanned delegation of care to mothers was routine. In the faith-based hospital mothers were initially separated from their babies and introduced to bathing and diaper change tasks slowly under the close supervision of nurses. In both hospitals appropriate breast-feeding support was lacking, and the needs of the mothers were largely ignored.
CONCLUSIONS: In highly resource constrained hospitals with low nurse to baby ratios, mothers are required to provide primary and some specialised care to their sick newborns with little information or support on how undertake the necessary tasks. In better resourced hospital settings, most caring tasks are initially performed by nurses leaving mothers feeling powerless and worried about their capacity to care for their babies after discharge. Interventions need to focus on how to better equip hospitals and nurses to support mothers in caring for their sick newborns, promoting family centred care.

BACKGROUND: Patient participation is considered to promote well-being and is, therefore, central in care contexts. Care-dependent older persons living at home constitute a vulnerable population with increased ambulance care needs. Care transfers risk challenging participation in care, a challenge that can be accentuated in situations involving acute illness.
OBJECTIVE: To illuminate meanings of older persons\' participation in ambulance care in the presence of municipal care personnel from the perspective of ambulance personnel.
METHODS: A phenomenological hermeneutical method was used to analyse transcripts of narrative interviews with 11 ambulance personnel.
RESULTS: The ambulance personnel\'s lived experience of older persons\' participation includes passive and active dimensions and involves a balancing act between an exercise of power that impedes participation and equalisation of power that empowers participation. The main theme \'Balancing dignity in relation to manipulating the body\' included the themes Providing a safe haven and Complying with bodily expressions, which means shouldering responsibility for existential well-being and being guided by reactions. The main theme \'Balancing influence in relation to perceived health risks\' included the themes Agreeing on a common perspective, Directing decision-making mandate, and Sharing responsibility for well-being, which means shouldering responsibility for health focusing on risks. Influence is conditional and includes performance requirements for both the older person and municipal care personnel.
CONCLUSIONS: Care-dependent older persons\' participation in care from the perspective of ambulance personnel means recognising passive and active dimensions involving human dignity, the ability to influence care, and optimising care efforts through collaboration. This study provides a deepened understanding of the balancing of power involved in ambulance care determining participation, where power is equalised or exercised depending on personal engagement, health risks, and available care options. The knowledge provided holds the potential to improve ambulance care to benefit older persons in critical life situations.

In South Korea, approximately 40% of older adults are reported to have low health literacy. The purpose of this study was to evaluate the relationship between health literacy and patient participation among Korean older adults with heart failure.
This cross-sectional descriptive study involved 145 Korean patients at one prominent medical center in South Korea. The Korean Health Literacy Scale short form and the 13-item Perceived Involvement in Care Scale were administered between June and September, 2016.
Among participants (mean age = 71.30 years; 26.9% female), approximately 30% had poor health literacy. A significant correlation was observed between health literacy and participation scores ( r = .538, p < .01). Health literacy was the most important predictor of patient participation (β = .488, p < .001).
The results imply that effective knowledge acquisition may encourage greater patient participation. By identifying health literacy in Korean older adults, we can provide more culturally congruent health care by improving participation between providers and patients.

OBJECTIVE: To explore the experiences of patients with chronic obstructive pulmonary disease and their family members relating both to participation in care during hospitalisation for an acute exacerbation in chronic obstructive pulmonary disease, and to the subsequent day-to-day care at home.
BACKGROUND: When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited.
METHODS: This study adopted a longitudinal design informed by ethnographic fieldwork principles.
METHODS: Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants\' homes. A phenomenological-hermeneutic approach inspired by Ricoeur\'s theory of interpretation guided the data analysis.
RESULTS: Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterised by navigating between mutual pressure and consideration within the family.
CONCLUSIONS: Family members play an important role in ensuring that patients are seen, heard and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management.
CONCLUSIONS: Knowledge of the challenges that patients with chronic obstructive pulmonary disease and their family members face in participating in care activities could inform future development of family-centred care approaches tailored to individual needs.

OBJECTIVE: To examine the correlation between mothers\' participation in infant care in the Neonatal Intensive Care Unit (NICU) and their anxiety and problem-solving skill levels in caregiving.
METHODS: The cross-sectional study was conducted with 340 mothers whose babies were in the NICU. Data were collected with a questionnaire, a Participation in Caregiving Observation Form, the State and Trait Anxiety Inventory and the Problem-solving Skills Evaluation Form. Descriptive statistics and correlation analysis were used in the evaluation of the data.
RESULTS: The mothers were with their babies an average of 6.28 ± 2.43 (range: 1-20) times a day, participating in many basic procedures of care. A negative correlation was found between the mothers\' scores on the Participation in Caregiving Observation Form and their State and Trait Anxiety Inventory scores (respectively, r = -0.48, p < 0.001 and r = -0.12, p < 0.05), but a positive correlation was observed between the Problem-solving Process (r = 0.41, p < 0.001) and the Baby Care Skills (r = 0.24, p < 0.001) Subscale scores.
CONCLUSIONS: The study revealed that mothers participated in many basic caregiving procedures in the NICU and this participation resulted in reduced state and trait anxiety levels and an improvement in the mothers\' problem-solving skills with respect to baby care and related problems.