Effectiveness of a Web-Based Individual Coping and Alcohol Intervention Program for Children of Parents With Alcohol Use Problems: Randomized Controlled Trial.

BACKGROUND: Children whose parents have alcohol use problems are at an increased risk of several negative consequences, such as poor school performance, an earlier onset of substance use, and poor mental health. Many would benefit from support programs, but the figures reveal that only a small proportion is reached by existing support. Digital interventions can provide readily accessible support and potentially reach a large number of children. Research on digital interventions aimed at this target group is scarce. We have developed a novel digital therapist-assisted self-management intervention targeting adolescents whose parents had alcohol use problems. This program aims to strengthen coping behaviors, improve mental health, and decrease alcohol consumption in adolescents. OBJECTIVE: This study aims to examine the effectiveness of a novel web-based therapist-assisted self-management intervention for adolescents whose parents have alcohol use problems. METHODS: Participants were recruited on the internet from social media and websites containing health-related information about adolescents. Possible participants were screened using the short version of the Children of Alcoholics Screening Test-6. Eligible participants were randomly allocated to either the intervention group (n=101) or the waitlist control group (n=103), and they were unblinded to the condition. The assessments, all self-assessed, consisted of a baseline and 2 follow-ups after 2 and 6 months. The primary outcome was the Coping With Parents Abuse Questionnaire (CPAQ), and secondary outcomes were the Center for Epidemiological Studies Depression Scale, Alcohol Use Disorders Identification Test (AUDIT-C), and Ladder of Life (LoL). RESULTS: For the primary outcome, CPAQ, a small but inconclusive treatment effect was observed (Cohen d=-0.05 at both follow-up time points). The intervention group scored 38% and 46% lower than the control group on the continuous part of the AUDIT-C at the 2- and 6-month follow-up, respectively. All other between-group comparisons were inconclusive at either follow-up time point. Adherence was low, as only 24% (24/101) of the participants in the intervention group completed the intervention. CONCLUSIONS: The findings were inconclusive for the primary outcome but demonstrate that a digital therapist-assisted self-management intervention may contribute to a reduction in alcohol consumption. These results highlight the potential for digital interventions to reach a vulnerable, hard-to-reach group of adolescents but underscore the need to develop more engaging support interventions to increase adherence. TRIAL REGISTRATION: ISRCTN Registry ISRCTN41545712; https://www.isrctn.com/ISRCTN41545712?q=ISRCTN41545712. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/1471-2458-12-35.

Educational programmes for paediatric healthcare professionals in patient- and family-centred care. A scoping review.

To identify and describe educational programmes in patient- and family-centred care for paediatric healthcare professionals. This scoping review was conducted and reported according to the JBI Manual for Evidence Synthesis and the PRISMA guideline. The databases searched included MEDLINE (PubMed), PsycINFO, CINAHL, Scopus, Cochrane, and Embase. Inclusion criteria were experimental, observational and qualitative studies about educational programmes on patient- and family-centred care for paediatric healthcare professionals. Exclusion criteria were reviews and non-peer-reviewed literature. Two reviewers independently screened and extracted the data using Covidence. Of the 13922 records identified, 49 articles met the inclusion criteria. There was a large variety of educational programmes, half of which were interdisciplinary, that mainly targeted nurses and doctors. The median number of participants was 51 (range 7 to 1411). The predominant target population was children with chronic disabilities and neonatal intensive care units, and only one programme specifically targeted adolescents. The median duration was one day (range 5 min to 3.5 years). Development of competencies was the most common objective. We identified 12 different educational content areas. Content mainly focused on communication and relational competencies, including partnership, which involved shared decision-making, mutual agenda setting, and negotiation of a plan. Many kinds of educational strategies were found but experiential learning through simulation and roleplay was used most.   Conclusion: A large variety of educational programmes in paediatric patient- and family-centred care exist. Educational content mainly focused on communication and relational competencies. Experiential learning including roleplay and simulation was the most used educational strategy. What is Known: • Delivery of patient- and family-centred care improves parental satisfaction of care but requires clinicians have a certain attitude towards involving the child and parents in a healthcare partnership as well as advanced triadic communication skills. Little is known about how this attitude, and more broadly, patient- and family-centred care, can be facilitated through education and training. What is New: • This scoping review found a wide array of programmes.. Workshops with simulation or roleplay was the most frequent educational strategy. The programmes, which typically targeted nurses and doctors, chiefly focused on basic and advanced communication and relational competencies, including partnership, which involved shared decision-making and negotiation of plans.

Psychological aspects of being a parent of an individual with Rett syndrome: A scoping review.

BACKGROUND: Rett syndrome (RTT) causes multiple disabilities with a lifelong need for substantial care, placing a tremendous lifelong responsibility on the parents. Parenting an individual with RTT can therefore be challenging. Research on the psychological aspects of parenting individuals with RTT is limited and unclear. We aimed to identify and map the existing literature on this subject. METHOD: A scoping review was conducted with systematic searches in PubMed, PsycINFO and CINAHL. RESULTS: Eighteen studies were included. Negative and positive psychological aspects were described with the majority focusing on the negative. Three factors seemed to especially affect the parents: severity of the diagnosis, time (increasing age of parents or individual with RTT; years of caretaking), work-status of the mother. CONCLUSIONS: Seemingly, parents are highly affected; however, the literature is scarce and has several gaps. Future research should include older parents, fathers, parents of individuals living in group homes, and positive aspects.

Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness.

AIM: To identify barriers and facilitators impacting the implementation of a comprehensive transfer program aimed at parents of adolescents with chronic illness in clinical practice. DESIGN: A real-time, qualitative process evaluation. METHODS: Individual interviews were conducted with 10 nurses and seven physicians from paediatric and adult outpatient clinics: Nephrology, hepatology, neurology, and rheumatology. Data were analysed through the lens of normalization process theory. RESULTS: Themes were framed within the theory's four components. (1) Coherence: Healthcare professionals' views on their core tasks and on the parents' role influenced their perception of the program. (2) Cognitive participation: A named key worker, autonomy, and collaboration impacted healthcare professionals' involvement in the program. (3) Collective action: Department prioritization and understanding of the program's aim were key factors in its successful delivery. (4) Reflective monitoring: Participants experienced that the program helped parents during transfer but questioned if the program was needed by all families. CONCLUSION: We identified three barriers: Healthcare professionals' lack of understanding of the parental role during transfer, top-down decisions among nurses, and physicians' uncertainty about their role in joint consultations. Facilitators: Healthcare professionals' understanding of the program's purpose and expected effect, the nurses' significant role as named keyworkers, and good collaboration across paediatric and adult departments. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation strategies should be developed before implementing a transfer program in clinical practice. IMPACT: Implementing a parental transfer program in clinical practice can be challenging. Therefore, for successful implementation, it is crucial to identify barriers and facilitators. Barriers and facilitators exist at the personal, professional, and organizational levels, and it is important to understand them. The results of this qualitative study could support the implementation of transfer programs in other settings. REPORTING METHOD: Consolidated criteria for reporting qualitative studies (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Nurses' and physicians' experiences of ownership of the transfer program is essential for successful implementation. Clinics should appoint a named keyworker, preferably a nurse, as the driving force during the implementation of a transfer program. Nurses and physicians should receive training about the purpose, justification, and expected effect of a transfer program before implementation.

Effects and Limitations of a Unique, Nationwide, Self-Exclusion Service for Gambling Disorder and Its Self-Perceived Effects and Harms in Gamblers: Protocol for a Qualitative Interview Study.

BACKGROUND: Voluntary self-exclusion from gambling is a common but underdeveloped harm reduction tool in the management of gambling problems or gambling disorders. Large-scale, multi-operator, and operator-independent self-exclusion services are needed. A recent nationwide multi-operator self-exclusion service in Sweden (Spelpaus), involving both land- and web-based gambling sites, is promising, but recent data have revealed limitations to this system and possibilities to breach one's self-exclusion through overseas web-based gambling. More knowledge is needed about the benefits and challenges of such an extensive self-exclusion service, and its effects as perceived by gamblers. OBJECTIVE: This study protocol describes the rationale and design of a qualitative interview study addressing the effects and limitations perceived by individuals with gambling problems and their concerned significant others. The study aims to provide an in-depth experience of this novel self-exclusion service and to inform stakeholders and policymakers in order to further improve harm reduction tools against gambling problems. METHODS: Individuals with gambling problems will be recruited primarily through social media and also from a treatment unit, if needed, for a qualitative interview study. Recorded interview material will be analyzed through content analysis, and recruitment will continue until saturation in the material is reached. This study will provide in-depth information about a harm reduction tool that is promising and commonly used, but which has proven to be breached by a significant number of users, potentially limiting its efficiency. The aim is to interview a sufficient number of gamblers until saturation has been obtained in the interview material. Saturation will be considered through a continuous analysis, comparing recently collected data to previously collected data. RESULTS: Results will be reported as the themes and subthemes identified after the thorough analysis and coding of the transcribed text material and will be accompanied by citations representing relevant themes and subthemes. Results are planned to be provided before the end of 2023. CONCLUSIONS: This study will likely provide new insights into user perspectives on a multi-operator self-exclusion service that involves both web- and land-based gambling operators, and which according to previous literature attracts many gamblers but also appears to have limitations and challenges in the target group of individuals with gambling problems. Policy and legislation implications, as well as clinical implications for treatment providers, will be discussed. Results and conclusions will be disseminated to policy makers in Sweden and internationally, as well as to peer organizations, treatment providers, and the research community. TRIAL REGISTRATION: ClinicalTrials.gov NCT05693155; https://clinicaltrials.gov/study/NCT05693155. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/47528.

The experiences of children, adolescents and their parents in isolation in a Danish paediatric unit: A qualitative study.

BACKGROUND: Previous studies on adult patients in hospital isolation show that it can be highly stressful, with some patients affected by depression and anxiety. This study aimed to explore how children, adolescents, and their parents perceive isolation and how it affects them physically, psychologically, and socially. METHODS: A qualitative approach was used comprising semi-structured interviews, participant observations, and field notes. FINDINGS: Two adolescents and 13 parents were selected to participate in the interviews, while three children and their parents participated in participant observation. Besides the participant observation one of the adolescents and one parent also participated in interviews. The children and adolescents were isolated at the hospital due to bacterial or viral infections or were carriers of an antibiotic resistant bacteria. After performing a thematic analysis to identify patterns in the data, four themes emerged: 1. Differing information provided about bacteria, virus, hygiene precautions, and isolation, 2. Dependence on healthcare professionals, 3. Impact of the environment, and 4. Coping and psychological reactions on isolation. DISCUSSION: The participants conveyed positive and negative experiences and emotions during isolation in relation to daily activities, psychological well-being, and social life. Adolescents and their parents requested clear comprehensible and consistent information on isolation from healthcare professionals. APPLICATION TO PRACTICE: To improve hospital isolation for children, adolescents, and their parents, well-written information on isolation and hygiene precautions is crucial, as are evolving strategies to minimise social exclusion and the emotional impact of isolation.

Development of an intravenous chemotherapy intervention for children and adolescents with cancer administered by their parents at home (INTACTatHome).

BACKGROUND: Families of children and adolescents with cancer strive to maintain routines and normalcy during the child's treatment trajectory that requires frequent hospital visits. Intravenous chemotherapy at home can reduce time spent on the frequent hospital visits and mitigate disruption in daily life. Studies on home chemotherapy for children and adolescents with cancer are limited, as is knowledge of family and health care professionals' needs, and knowledge required to inform adaptation or replication of interventions in other settings. The aim of this study was to develop and describe an evidence-based home chemotherapy intervention that is feasible and safe for children and adolescents and suitable for future feasibility testing. METHODS: The Medical Research Council's guidance for developing complex interventions in health care and the framework of action developed by O'Cathain et al. was used as theoretical frameworks to structure the development process. A literature search, an ethnographic study, and interviews with clinical nurse specialists from adult cancer departments formed the evidence base. Educational learning theory to support and understand the intervention was identified. Stakeholder perspectives were explored in workshops with health care professionals and parent-adolescent interviews. Reporting was qualified using the GUIDED checklist. RESULTS: A stepwise educational program to teach parents how to administer low-dose chemotherapy (Ara-C) to their child at home and a simple and safe administration procedure were developed. Key uncertainties were identified, including barriers and facilitators impacting future testing, evaluation, and implementation. Causal assumptions and reasoning for how the intervention leads to short-term outcomes and long-term impact were clarified in a logic model. CONCLUSIONS: The iterative and flexible framework allowed for integration of existing evidence and new data and was successfully applied to the development process. The detailed report on the development process of the home chemotherapy intervention can enhance adaptation or replication of the intervention to other settings and thereby mitigate family disruption and stress of frequent hospital visits for these treatments. The study has informed the next phase of the research project that aims to test the home chemotherapy intervention in a prospective single-arm feasibility study. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT05372536.

Personal experiences of suicidality in women with gambling disorder - A qualitative interview study.

Background: Gambling disorder is associated with increased suicidality, especially in women who also are more likely to have psychiatric comorbid disorders and more often have experiences of traumatic life events. Although suicidality is increased and several risk factors have been identified, knowledge of the suicidal process is lacking, especially for women. Aim: To explore the lived experiences of suicidality in women with gambling disorder and to investigate potential factors involved in the development of suicidality. Method: Semi-structured interviews were held with seven women with experiences of gambling disorder and suicidality in Malmö, Sweden between November 2021 and June 2022, when saturation was reached. Interviews were audio-recorded, transcribed, and coded in NVivo. Qualitative content analysis was used to build categories and themes. Results: Several women had experienced suicidality before developing gambling disorder and gambling-related suicidality. However, for some, suicidality had appeared seemingly only due to the gambling disorder. Suicidality ranged from ideation to severe suicide attempts. Three themes of factors modulating suicidality related to gambling were found; a) guilt shame and self-stigmatization, b) loss of control/chaotic life circumstances, and c) social consequences/fear of guilt and shame from others. Conclusion: More research on the experience of suicidality in women with gambling disorder is needed. Attempts to address self-stigmatization, guilt, and shame in women with gambling disorder and society at large as well as aiding women to regain a sense of control over their economy and gambling may be ways to reduce suicidality.

Usefulness of a Digitally Assisted Person-Centered Care Intervention: Qualitative Study of Patients' and Nurses' Experiences in a Long-term Perspective.

BACKGROUND: Person-centered care responsive to individual preferences, needs, and values is recognized as an important aspect of high-quality health care, and patient empowerment is increasingly viewed as a central core value of person-centered care. Web-based interventions aimed at empowerment report a beneficial effect on patient empowerment and physical activity; however, there is limited information available on barriers, facilitators, and user experiences. A recent review of the effect of digital self-management support tools suggests a beneficial effect on the quality of life in patients with cancer. On the basis of an overall philosophy of empowerment, guided self-determination is a person-centered intervention that uses preparatory reflection sheets to help achieve focused communication between patients and nurses. The intervention was adapted into a digital version called digitally assisted guided self-determination (DA-GSD) hosted by the Sundhed DK website that can be delivered face-to-face, via video, or by the combination of the 2 methods. OBJECTIVE: We aimed to investigate the experiences of nurses, nurse managers, and patients of using DA-GSD in 2 oncology departments and 1 gynecology department over a 5-year implementation period from 2018 to 2022. METHODS: This qualitative study was inspired by action research comprising the responses of 17 patients to an open-ended question on their experience of specific aspects of DA-GSD in a web questionnaire, 14 qualitative semistructured interviews with nurses and patients who initially completed the web questionnaire, and transcripts of meetings held between the researchers and nurses during the implementation of the intervention. The thematic analysis of all data was done using NVivo (QSR International). RESULTS: The analysis generated 2 main themes and 7 subthemes that reflect conflicting perspectives and greater acceptability of the intervention among the nurses over time owing to better familiarity with the increasingly mature technology. The first theme was the different experiences and perspectives of nurses and patients concerning barriers to using DA-GSD and comprised 4 subthemes: conflicting perspectives on the ability of patients to engage with DA-GSD and how to provide it, conflicting perspectives on DA-GSD as a threat to the nurse-patient relationship, functionality of DA-GSD and available technical equipment, and data security. The other theme was what influenced the increased acceptability of DA-GSD among the nurses over time and comprised 3 subthemes: a re-evaluation of the nurse-patient relationship; improved functionality of DA-GSD; and supervision, experience, patient feedback, and a global pandemic. CONCLUSIONS: The nurses experienced more barriers to DA-GSD than the patients did. Acceptance of the intervention increased over time among the nurses in keeping with the intervention's improved functionality, additional guidance, and positive experiences, combined with patients finding it useful. Our findings emphasize the importance of supporting and training nurses if new technologies are to be implemented successfully.

Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents' experiences.

Background: Studies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment. Purpose: This study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their child's treatment, side effects and participation during hospital care. Methods: A qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1-18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis. Results: Four sub-themes were identified: (1) Continuously dealing with the child's potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the child's behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception "Being the child's spokesperson to facilitate the child's participation during treatment". The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the child's right to receive optimal treatment. Conclusion: The study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present.

Dairy cow longevity: Impact of animal health and farmers' investment decisions.

A dairy farmer's decision to cull or keep dairy cows is likely a complex decision based on animal health and farm management practices. The present paper investigated the relationship between cow longevity and animal health, and between longevity and farm investments, while controlling for farm-specific characteristics and animal management practices, by using Swedish dairy farm and production data for the period 2009 to 2018. We used the ordinary least square and unconditional quantile regression model to perform mean-based and heterogeneous-based analysis, respectively. Findings from the study indicate that, on average, animal health has a negative but insignificant effect on dairy herd longevity. This implies that culling is predominantly done for other reasons than poor health status. Investment in farm infrastructure has a positive and significant effect on dairy herd longevity. The investment in farm infrastructure creates room for new or superior recruitment heifers without the need to cull existing dairy cows. Production variables that prolong dairy cow longevity include higher milk yield and an extended calving interval. Findings from this study imply that the relatively short longevity of dairy cows in Sweden compared with some dairy producing countries is not a result of problems with health and welfare. Rather, dairy cow longevity in Sweden hinges on the farmers' investment decisions, farm-specific characteristics and animal management practices.

Ambiguous Expectations of Parent Caregiving for the Child and Adolescent With Cancer at the Hospital and at Home-An Ethnographic Study.

Background: Over the past three decades, complex care and treatment have increasingly become the responsibility of parents as home-based care providers, yet little is known about parents' caregiving experiences when considering the variety of care tasks. It is imperative to gain insight into the challenges parents face when managing treatment and care of their child with cancer to ensure optimal parental support and prior to further expansion of home-based parent caregiving. This study aimed to explore the experiences of children and adolescents with cancer, who had received treatment through a portable infusion pump, and their parents in managing different care tasks. It is the first study and forms the basis of the research project INTACTatHome, that develops and tests interventions of home-based intravenous anti-cancer treatment. Methods: Ethnographic fieldwork comprising participant observation and semi-structured interviewing analyzed using qualitative thematic analysis. Thirteen families participated in the study. Results: Three main themes were identified: (1) being a "mini-nurse"; (2) dividing care; and (3) managing anxiety and fear, each based on separate sub-themes. These themes were bound together by an overarching theme: "Ambiguous expectations of parent caregiving." Discussion: This study contributes to a deeper understanding of the varying experiences of children and adolescents and their parents in managing different care tasks for a child or adolescent with cancer. It underscores the need to establish clear expectations of parents as caregivers throughout the cancer treatment trajectory. This perspective is crucial when developing and implementing future home-based care services.

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences.

BACKGROUND: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. AIM: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. DESIGN: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. SETTING/PARTICIPANTS: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. RESULTS: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." CONCLUSIONS: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.

End-of-life palliative home care for children with cancer: A qualitative study on parents' experiences.

BACKGROUND: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. METHODS: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. RESULTS: Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. CONCLUSION: End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

Parents' views on and need for an intervention during their chronically ill child's transfer to adult care.

Parents of chronically ill adolescents play a significant role during their child's transition and transfer to adult care. Parents seek help and support, but appropriate initiatives are still lacking. Thus, there is an urgent call for knowledge regarding parents' needs and views on such support. The aim of this study was to examine, in relation to parents of chronically ill adolescents: 1) views and experiences regarding their child's transfer from paediatric to adult care, and 2) which initiatives parents preferred in relation to the transfer. The study was based on the interpretive description method, and data were collected through face-to-face or telephone interviews with parents of chronically ill adolescents aged 16-19 (n = 11). We found three overall findings: 'Feeling acknowledged vs. feeling excluded', 'Perceived differences between paediatric and adult care' and 'Feeling safe vs. entering the unknown', together with three preferred initiatives: 1) Joint consultations, 2) Educational events and 3) Online support/website. In general, we found that some parents were extremely worried about the transfer, while others were not. Our results suggest that transfer initiatives targeting parents should focus on knowledge, expectations, relationships and goals in accordance with the social-ecological model of adolescent and young adult readiness to transition (SMART).

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial.

BACKGROUND: Previous research shows that adolescents with a chronic illness have more successful transfers to adult care if their parents are involved during the transition. However, there is a lack of structured and evaluated transfer programs for parents. Our aim will be to test a comprehensive transfer program for parents of adolescents with chronic illness during the transfer from pediatric to adult care and to evaluate the program's effectiveness, acceptability, and costs. METHODS: The overall design for this protocol will be a randomized controlled trial. A total of 62 dyads consisting of an adolescent (age 16.5-17.5) and at least one parent will be recruited from one of four pediatric outpatient clinics (nephrology, hepatology, neurology, or rheumatology) at Copenhagen University Hospital - Rigshospitalet, Denmark. The dyads will be randomized to receive the transfer program in addition to usual care or to receive usual care only. The program includes an informative website, bi-annual online educational events, and transfer consultations across pediatric and adult care. Outcome measures will include transition readiness, allocation of responsibility, parental uncertainty level, and transfer satisfaction. Data will be collected from participants at baseline, every 6 months until transfer, at transfer, and 3 months after transfer. The parents' acceptance of and satisfaction with the program will be explored through semi-structured interviews. Cost, barriers, and facilitators affecting future implementation will be identified in interviews with health care professionals, using the Normalization Process Theory as a framework for the process analysis. DISCUSSION: To our knowledge, this transfer program is one of the first interventions for parents of adolescents with a chronic illness during their child's transfer to adult care. Our trial will include parental and adolescent measures allowing us to examine whether a transfer program for parents will improve transfer to adult care for both parents and adolescents. We believe that results from our trial will be helpful in forming recommendations to ensure better involvement of parents in transitional care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04969328 . Retrospectively registered on 20 July 2021.

A risk-benefit approach to the purchase and consumption of conventional vegetables in wet markets.

The purchase and consumption of conventional vegetables from wet markets in Vietnam are like two sides of a coin: perceived food safety risks and perceived benefits. Drawing on a sample of 463 Hanoi consumers, this study employed a risk-benefit approach to analyze the purchase intention and consumption frequency of conventional vegetables at traditional markets. A confirmatory factor analysis examined the links among risk perception, perceived utilitarian benefits, perceived hedonic benefits, and trust. Finally, generalized ordered and Poisson regressions were performed on these psychological constructs and their identified links. We found that perceived hedonic benefits, trust in wet market actors, and the presence of homegrown vegetables determined purchase intention and consumption frequency. The joint influence of perceived hedonic and utilitarian benefits on purchase intention implies that consumers considered both benefit dimensions when thinking of their future purchase of conventional vegetables. The significant interaction between perceived risk and perceived hedonic benefits on consumption frequency supports the risk-benefit approach. The effect of perceived hedonic benefits and income on purchase intention and consumption frequency are evidence of wet markets' social and cultural relevance.

Development of a complex intervention to support parents of adolescents with chronic illness transferring from pediatrics to adult care (ParTNerSTEPs).

BACKGROUND: Transition from pediatric to adult care for adolescents with chronic illness is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a comprehensive transfer program targeted to parents of adolescents with chronic illness. METHODS: The study was based on the UK Medical Research Council's (MRC) framework on developing and testing complex interventions. To increase the program's feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, young people and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. RESULTS: Together with the collaboration group, we developed a comprehensive transfer program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops and online brainstorms. The program, called ParTNerSTEPs (Parents in Transition - a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. CONCLUSIONS: The MRC framework was successfully applied to develop a comprehensive transfer program targeting parents of adolescents with chronic ilness. By incorporating the principles of participatory design in the development phase, we ensured that both parents' and adolescents' needs were represented and addressed in the program. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04969328.

Healthcare seeking among Swedish patients in opioid substitution treatment - a mixed methods study on barriers and facilitators.

BACKGROUND: Patients in opioid substitution treatment (OST) have poorer health than the general population. Thus, they do not seek somatic health care to the extent that is medically motivated. Barriers hindering patients from seeking medical help through the conventional healthcare system result in a high degree of unmet healthcare needs. Barriers to, and facilitators of, OST patients' healthcare seeking have been sparsely examined. METHODS: Mixed methods were employed. The quantitative part consisted of a cross-sectional questionnaire covering questions on physical health, healthcare seeking, and barriers thereof, which was collected from 209 patients in OST. A sub-sample of eleven OST patients participated in semi-structured interviews, for the qualitative part of the study, covering experience of healthcare, lifestyle, and self-images, expectations, and ideals of Swedish healthcare. RESULTS: Confirmed by qualitative data, quantitative data revealed deprioritization, fear of stigma and of being treated badly, and problems in navigation throughout the healthcare system, leading to unsuccessful establishment of contact, being most common reasons for not seeking somatic healthcare. Thus, interviewees provided a deeper knowledge of the barriers stigma, lack of means to prioritize health and difficulties navigating throughout the healthcare system, leading to resignation and deprioritization. On-site primary healthcare (PHC) seemed to contribute to increased access and utilization of healthcare. CONCLUSION: Individual and structural barriers decreasing access to healthcare lead to increased inequalities in healthcare utilization, adding to an already deteriorating health of this ageing population. Integration of on-site primary healthcare and OST could provide acceptable and accessible healthcare.