The proportion of elderly people in the world is increasing, which increases the burden on the healthcare system and requires more formal and informal care. In Europe, informal care accounts for approximately 3.5% of GDP, and this is expected to increase. In Sweden, about 1.3 million people are informal caregivers (900,000 of whom are employed). Informal care is most common among people aged 45-65 years. Informal caregivers suffer from mental and physical health problems, such as depression, anxiety, and cardiovascular issues. The aim of this study was to describe informal caregivers in Sweden, their caregiver burden, psychological well-being, and their support needs. A web survey was used to collect data, and 379 informal caregivers responded to the survey. The results of this study showed that the majority of informal caregivers are women with good economic status and university education. Most care for one person, usually a spouse or a child, and balance work with caregiving tasks. Informal caregivers who provided care, help, and support to one person experienced greater burdens and higher levels of stress and depression. The impact on burden and psychological well-being becomes more pronounced when the informal caregiver has a close relationship or lives in the same household as the care recipient. These findings, and the fact that 82% of the participants use digital tools daily and are open to receiving support digitally, underscore the urgent need for digital interventions to reduce the caregiver burden and improve the psychological well-being of informal caregivers.

Background: Informal caregivers of persons with chronic conditions such as heart failure have a crucial role in providing support. They often providethis help and care without formal training orfinancial compensation. Theirsituation can be experienced as demanding and complex, and caregivers have expressed a need for support. In response to their needs, an online support program was co-designed with and for caregivers. The co-design process ensured that the content is relevant to their needs and preferences. However, relevance alone does not guarantee that the program will be feasible or perceived as helpful in caregivers' everyday lives.

Objective: This study aimed to explore the experiences of informal caregivers of persons with heart failure who had access to an online support program and to identify facilitators and barriers in order to reflect on implementation strategies for scaling up use.

Methods: Participants in this study were included from a multicenter randomized controlled trial in which the co-designed support program is being evaluated. This study used an abductive approach to explore caregivers' experiences and to identify barriers, facilitators, and implementation strategies. Fifteen informal caregivers participating in the randomized controlled trial were interviewed for this purpose. The interviews were analyzed using qualitative content analysis, and the findings were subsequently mapped onto the Digital Health Engagement Model (DIEGO).

Results: This study identified caregivers' experiences of engaging with the support program, as well as factors influencing their use of the online content. Drawing on these experiences and applying DIEGO, reflections on tailored implementation strategies were formulated. These strategies emphasizethe importance of active outreach to raise awareness of the support program, securing endorsements from relevant sources, and the continuous adaptation of the intervention to enhance its feasibility and relevance in caregivers' everyday lives.

Conclusions: A modified version of DIEGO proved valuable for identifying implementation strategies based on caregivers' experiences, with the aim of scaling up use of the support program. Furthermore, DIEGO supported the identification of factors that may provide valuable insight into the implementation process, both in clinical practice and in research.

Purpose: To describe patients' expectations prior to participating in a yoga intervention during cancer treatment and assess whether the outcomes experienced post-intervention align with these prior expectations. Method: A qualitative design was used, including participants from a quasi-experimental medical yoga intervention. Structured interviews (n = 20 in the online group yoga and n = 20 participating in the on-site group yoga) were conducted prior to and after 3-months yoga intervention, and were analyzed using thematic analysis employing a codebook approach. Results: Two themes were generated; individual holistic benefits of yoga, and collective benefits of group yoga. Participants expected yoga to be helpful in unwinding, learning breathing techniques for relaxation, gaining physical strength, feeling more energetic, and improving body control. However, emotional and mental benefits were more commonly described than the physical benefits after participating in the yoga sessions. Participants valued the sense of belonging to a group and the opportunity to exchange experiences related to practicing yoga and to their cancer diagnoses, which were often fulfilled. Additionally, participants valued guidance from instructors during group yoga sessions. Conclusions: This study adds to the growing body of evidence supporting yoga-whether on-site or online-as a valuable intervention for patients undergoing cancer treatment. While it may not fulfil all physical fitness expectations, its mental and emotional benefits (which were both expected and experienced), along with the sense of community it fosters, could make yoga a worthwhile mind and body intervention for these patients.

Background: When a parent is living with heart disease, it impacts the entire family. To fully understand the effect, the perspectives of all family members need be analysed together as a unit.

Objective: To identify what characterises family life and relationships in families with adolescents, with a parent living with heart disease.

Design: Qualitative study with an inductive approach.

Setting: In three Scandinavian countries between 2019 and 2022.

Participants: A total of 28 families with 83 family members, from three university hospitals were included. Inclusion criteria were families with a parent living with any type of heart disease, within six months and up to five years since diagnosis and having one or more adolescents living at home.

Methods: Data was collected through semi-structured individual interviews. Reflexive thematic analysis was used to identify patterns within families. This was followed by an ideal-type analysis, which resulted in a typology defining aspects of family experiences and responses of living with heart disease.

Results: A typology was developed describing four different family responses to heart disease: resilient, fragile, overwhelmed, and resigned. A family with a resilient response exhibits a collective approach, fostering solidarity and adaptability as they manage heart disease. A family with a fragile response shares a sense of belonging among family members, but struggles with concurrent stressors, navigating challenges individually without external support. A family with an overwhelmed response experience breakdowns in communication and helplessness in managing heart disease alongside various demands. A family with a resigned response relies on individual strategies leading to challenges for them to interact and understand each other.

Conclusions: Families affected by heart disease handle their new life circumstances in various ways. Strong family cohesion and supporting networks emerged as crucial elements in helping families cope with the multifaceted challenges associated with living with heart disease.

INTRODUCTION: Few studies explored healthcare needs of elderly heart failure (HF) patients with comorbidities in view of a personalized intervention conducted by Care Managers (CM) in the framework of Blended Collaborative Care (BCC). The aims of the present study were to: (1) identify perceived healthcare needs/preferences in elderly patients with HF prior to a CM intervention; (2) investigate possible associations between healthcare needs/preferences, sociodemographic variables (age; sex) and number of comorbidities.

METHOD: Patients aged 65 years or more affected by HF with at least 2 medical comorbidities were enrolled in the study. They were assessed by structured interviewing with colored cue cards that represented six main topics including education, individual tailoring of treatment, monitoring, support, coordination, and communication, related to healthcare needs and preferences.

RESULTS: Thirty-three patients (Italy = 21, Denmark = 7, Germany = 5; mean age = 75.2 ± 7.7 years; males 63.6%) were enrolled from June 2021 to February 2022. Major identified needs included: HF information (education), patients' involvement in treatment-related management (individual tailoring of treatment), regular checks of HF symptoms (monitoring), general practitioner update by a CM about progression of symptoms and health behaviors (coordination), and telephone contacts with the CM (communication). Regarding communication modalities with a CM, males preferred phone calls (χ²= 6.291, p = 0.043) and mobile messaging services (χ²= 9.647, p = 0.008), whereas females preferred in-person meetings and a patient dashboard. No differences in needs and preferences according to age and number of comorbidities were found.

DISCUSSION: The findings highlight specific healthcare needs and preferences in older HF multimorbid patients, allowing a more personalized intervention delivered by CM in the framework of BCC.

Aim: To explore adolescents' experiences of having a parent with heart disease.

Design: This qualitative study was performed with semi-structured individual interviews.

Methods: Interviews were conducted with 33 adolescents between 13 and 19 years old, who either had a mother or father with one of these diagnoses: ischemic heart disease, arrhythmia, heart failure, cardiac arrest or heart valve disease. The parent had been ill for at least 6 months and up to 5 years. The study was carried out in Denmark, Norway and Sweden between 2019 and 2022. The analysis was inspired by Reflexive Methodology.

Results: Three central themes emerged: Response to parental heart disease; Growing up ahead of time; and Strategies in a changed life situation. For the adolescents, heart disease was experienced as an acute and lethal disease that put their parents' lives in danger. New routines and roles not only changed everyday life within the family but they also enhanced maturity and appreciation of life. To maintain a balance in life, the adolescents pursued normality and sought a safe space to have a normal youthful life.

Conclusion: In a period known to be significant for development, life with parental heart disease appeared as a biographical disruption because adolescents renegotiated their identity to manage their new life situation.ImpactIt is important to help younger family members adapt to parental heart disease by informing them about possible reactions and supporting them in how to adapt to their new life by seeking breaks and normality.Patient or Public ContributionNo patient or public involvement.

AimTo describe the life situation of spouses having a partner with heart disease and adolescents living at home.DesignQualitative inductive design.MethodParticipants (n = 22) were included from three Scandinavian countries. Semi-structured interviews were analysed using thematic analysis with an inductive and latent approach.ResultsThree themes were derived. 'Being in spousal and parental role transition' described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. 'Living with unpredictability and insecurity' included how the unpredictable illness trajectory caused worries and affected the well-being of the family. 'Managing a challenging life situation' highlights how spouses coped with their partners' heart disease and adapted to a new life situation.ConclusionYoung spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life.Implications for the Profession and/or Patient CareAll family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill.Impacts This study highlights how young spouses, with adolescents living at home, experience their life situation. The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood. Research involving family members can improve person- and family-centred care and treatment outcomes in health care and society.Reporting MethodCOREQ checklist was used preparing the manuscript.Patient or Public ContributionData collection included interviews with spouse.What Does This Paper Contribute to the Wider Global Clinical Community?By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care.

Introduction: Involving patients and carers in the development of blended collaborative care (BCC) interventions for multimorbid heart failure (HF) patients is recommended but rarely practised, and research on the patient perspective is scarce. The aim of this study is to investigate patients' and carers' care-related needs and preferences to better customize a novel international BCC intervention.

Methods: A qualitative study design using framework analysis was employed. The study was performed in accordance with the EQUATOR standards for reporting qualitative research (SRQR). Patients aged at least 65 years with HF and at least two other physical diseases as well as their carers completed semistructured interviews in Germany, Italy, and Denmark. Based on these interviews, personas (prototype profiles of patients and carers) were created.

Results: Data from interviews with 25 patients and 17 carers were analysed. Initially, seven country-specific personas were identified, which were iteratively narrowed down to a final set of 3 personas: (a) the one who needs and wants support, (b) the one who has accepted their situation with HF and reaches out when necessary, and (c) the one who feels neglected by the health care system. Carers identifying with the last persona showed high levels of psychological stress and a high need for support.

Discussion: This is the first international qualitative study on patients' and carers' needs regarding a BCC intervention using the creation of personas. Across three European countries, data from interviews were used to develop three contrasting personas. Instead of providing "one size fits all" interventions, the results indicate that BCC interventions should offer different approaches based on the needs of individual patients and carers. The personas will serve as a basis for the development of a novel BCC intervention as part of the EU project ESCAPE (Evaluation of a patient-centred biopSychosocial blended collaborative CAre Pathway for the treatment of multimorbid Elderly patients).

Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan’s perspective on the doing of family life, and Hochschild’s analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants’ sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

Abstract AimTo describe the co-designing process of an online support programme with and for informal carers of people with heart failure.DesignA co-design process built on core concepts and ideas embedded in co-design methodology.Data sources Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme.Outcomes The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.Conclusion Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.Relevance to clinical practice Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel.Reporting methodsConsolidated criteria for reporting qualitative research (COREQ).Patient or public contributionBoth informal carers and content creators were involved in developing the support programme.