Conectar
A cancer diagnosis not only profoundly impacts individuals but also the very core of their families, reshaping their lives in many ways. However, there is a lack of focus on the well-being and health of the entire family across adult cancer research. This is concerning given that one-third of the Danish population will get a cancer diagnosis before the age of 75, suggesting that many Danes will become caregivers during their lifetime. In addition, identifying vulnerable families is challenging, and the determinant factors for their vulnerability are unknown.
The principal aim of this study is to investigate family health during cancer treatment. This will be done by gathering information on various parameters such as perceived support, quality of life and self-efficacy in patients with cancer and families across the cancer trajectory. Additionally, the study seeks to pinpoint particularly vulnerable families and investigate contributing factors to their vulnerability.
This mixed-methods study follows a sequential explanatory design, combining patient-reported outcomes in a longitudinal, prospective multicentre survey with interviews conducted with a nested sampling of the participants from the survey. A total of 240 patients diagnosed with prostate-, breast-, gastrointestinal- and lymphoma cancer, and designated adult family caregivers will be recruited from six different sites for the survey. Variables such as family health, needs and perceived support, quality of life, self-efficacy, depression, stress and resilience will be explored. Survey data will be collected at baseline, 3, 6, 12 and 18 months. The interviews (n=12–15) will be conducted twice with patients and caregivers jointly: once during the treatment phase (3 months) and once after completion of treatment (12 months). For the survey part, we estimated a sample size with 90% power and 5% significance to detect a minimal clinically important change in the Family Health Scale. Assuming an SD of 2x22 = 31, based on a cross-sectional SD of 22, 44 patients per group were required; to allow for dropout, 60 per group (240 total) were included. Patient and caregiver characteristics will be summarised descriptively. Longitudinal patient-reported outcomes will be analysed with linear mixed regression, separately for patients and caregivers. Changes will be reported as mean differences with 95% CIs and compared with published minimal clinically important differences or, if unavailable, 0.3xbaseline SD. For the qualitative part, thematic analysis by Braun and Clarke is chosen to extract data, identify patterns and analyse data and themes from the interviews. NVivo will be used for coding interview data.
The study will be conducted in accordance with the Helsinki Declaration. Measures will be taken to ensure confidentiality, data protection and participant safety throughout the study. The results will be published in peer-reviewed journals and conference presentations.
ClinicalTrials.gov: NCT06433349. Protocol version 2.0, June 2024.
To extract and interpret quantitative data exploring the effectiveness of family health conversations (FHCs) on family functioning, perceived support, health-related quality of life, caregiver burden and family health in families living with critical or chronic health conditions.
Addressing the health of families affected by critical or chronic illnesses requires focused attention. The effective integration of FHCs is hampered by a scarcity of rigorous quantitative studies that provide solid evidence on best practices and outcomes.
A systematic review following the Joanna Briggs Institute guidelines.
The review is reported according to the PRISMA 2020 checklist. Appropriate studies were searched in PubMed, CINAHL, PsycINFO, Scopus and Cochrane Databases. Results of the search were imported into the Covidence web-based program. Included were studies with a quantitative research design, delivered to families with critical or chronic health conditions, describing FHCs based on the Calgary Family Assessment Model and/or the Calgary Family Intervention Model, and/or the Illness Beliefs Model, using reliable and validated instruments, published between 2008 and 2023, and written in English.
In total, 24 papers met the inclusion criteria. Sixteen papers used a quasi-experimental design, eight of which included a control group. Two papers used a mixed methods design, and six papers were randomised controlled trials (RCTs). A statistically significant effect of FHCs on family functioning was reported in two RCTs and three quasi-experimental papers. We also found that a statistically significant effect of FHCs was reported on perceived support in 9 of 15 papers, quality of life in 4 of 11 papers and caregiver burden in 1 of 3 papers.
The interventions reviewed revealed variability and partial results concerning the effectiveness of FHCs on family functioning. More rigorous research about short-term, intermediate- and long-term effectiveness is needed before conclusions can be drawn.
The study is reported according to the PRISMA 2020 (Preferred Reporting Items for Systematic reviews and Meta-Analyses) (File S1).
No patient or public contribution. Data were gathered from previously published studies.
To develop an advance care planning intervention based on the needs of patients with chronic kidney disease, families and healthcare professionals.
Patients with chronic kidney disease and their families request early advance care planning that continues throughout their illness trajectory. Healthcare professionals experience barriers to initiating advance care planning. Involvement of stakeholders in development of health interventions is important, to identify priorities, understand the problem and find solutions.
The development was inspired by the Medical Research Council's framework, and codesign was applied. One future workshop and one design workshop were conducted with the consumers. The process was iterative, and data were analysed using the action research spiral. The Guidance for reporting intervention development studies in healthcare (GUIDED) was used.
Five areas were considered significant to an advance care planning intervention; a biopsychosocial approach, early palliative care, a family-focused approach, early and continuous advance care planning and a consumer-centred approach. Based on these, a conversation process with healthcare professionals was designed to give patients and families the opportunity to share values, preferences and wishes for treatment and their family and everyday life.
Codesign facilitated a collaborative process that allowed the consumers to have a significant impact on the design of an advance care planning intervention. A conversation process concerning everyday life, illness and treatment was designed for patients and families. The intervention included an advance care planning tool to guide the healthcare professionals.
The intervention has the intention to improve the communication between healthcare professionals, patients and families. The study provides important knowledge about the significance of giving the patients and their families support in sharing their values, preferences and wishes for treatment and everyday life, thus, to improve care and treatment in their illness trajectory.
What problem did the study address Patients with chronic kidney disease and their families strongly request early initiation of advance care planning that continues throughout the illness trajectory. Healthcare professionals experience barriers to the initiation of the advance care planning and request a more systematic approach. What were the main findings Development of a conversation process about everyday life, illness and treatment for patients diagnosed with chronic kidney disease and families, including an advance care planning tool to guide the healthcare professionals. Where and on whom will the research have an impact The study contributes an advance care planning intervention to patients in the early stages of chronic kidney disease and their families. We believe that the intervention could be included during consultations with healthcare professionals in other stages of chronic kidney disease as well as other chronic disease.
To strengthen the reporting of the development of the advance care planning intervention, we used the Guidance for reporting intervention development studies in healthcare (GUIDED).
The development of the intervention in this study was a collaborative process between patients, families, healthcare professionals and representatives from the Danish Kidney Association, the department's user council and the research team.
FreshRSS 