Research projects

Members of the project group: 
Dorte Jarbøl, Jens Søndergaard, Aida Andersen, Christina Prinds, Sara Voetmann, Linda Ahrenfeldt

Publications

1. Hammer, E.R. & Viftrup, D.T. (2022): ”Man skal sgu tale med børn” – samtaler med børn der er pårørende til døende. OMSORG Nordisk Tidsskrift for Palliativ Medisin

Other

https://www.sciencedirect.com/science/article/pii/S0749208123001286?via%3Dihub

https://findresearcher.sdu.dk/ws/portalfiles/portal/222126433/69_73_Omsorg_2022_3_Viftrup_mfl.pdf

European reviews. These three scoping reviews will reveal health practices for families with older patients with cancer, dementia or heart patients.

PI: the FAME-RN group from all over Europe.

Exploring family outcomes in healthcare settings – a scoping review uncovering outcome measures, patient groups and translation

The objective of this scoping review is to investigate family reported outcome measures available for investigating family outcomes in healthcare settings.

More information will soon become available.

The research group: 
Anne Møller Clausen, RN, MScN - e-mail: amclausen@health.sdu.dk
Camilla Skoc Routhausen, RN, MScN
Karin B. Dieperink, RN, Professor

Video-assisted health education: improving health outcomes for persons affected by complex cancers.

Lead: Elisabeth Coyne e.coyne@griffith.edu.au
project team: Hughes, Carlini, Robertson, Shaw, Winter, Dieperink, Halkett

PRIMARY OBJECTIVES The self-efficacy and supportive care needs of persons [patient and family] affected by complex cancer will be measured. SECONDARY OBJECTIVES The secondary outcomes are patient and family satisfaction and feasibility of the videos.

Project despriction
Co-design random control trail

Sample size
N=200 participants

Target Population
Patients with complex cancer [brain, head and neck and gastrointestinal cancer] cancers who are undergoing cancer treatment, and their family members. Recruitment via Gold Coast Hospital QLD

Method
A co-design clinical trial to develop video-assisted health education [Video-HealthEd] and determine the feasibility of Video-HealthEd to improve patients’ and family self-efficacy and ability to manage at home.

Expected study period
January 2023 to December 2024

GAIN - Gastrointestinal Diseases and Malformations in Infancy and Childhood - From fetus to infant – counseling of parents with a child suffering from gastroscisis, omphalocele or esophagus atresia

This study containes six work packets:

WP6: Patient and family involvement - Kristina Holm, Jane Clemensen

WP5: Follow-up after surgery - Mark Bremholm Ellebæk; Niels Qvist, Rikke Nees Pedersen

WP4: Inflammation - Jesper Møller, Grith Lykke Sørensen, Steffen Husby    

WP3: Surgery - Mark Bremholm Ellebæk, Niels Qvist, Grith Lykke Sørensen

WP2: Nutrition and growth - Gitte Zachariassen, Per Sangild

WP1: Epidemiology - Lene Sperling, Ellen Nøhr, Gitte Zachariassen, Kristina Garne Holm

GO EASY: Family-based prevention of diabetes through eating habits and physical activity – a feasibility study

About the project:

This project is focused on developing and testing a program that can support families with one or more parents with type 2 diabetes in the Region of Zealand. The program will encourage physical activity and healthy eating habits, aiming to reduce the risk of health complications and improve the quality of life of individuals with diabetes and their families. The project will involve 25 families from selected areas of the region and will be guided by a team of healthcare professionals for a period of six months. The program will also involve collaboration with local organizations such as schools, health centers, and sports associations to create a supportive environment for families. The goal is to enhance families' ability to adopt a more diabetes-friendly lifestyle, and the project will encourage high levels of participant involvement to maintain motivation.

Resources, such as videos and podcasts, created by researchers associated with the project will serve to impart practical knowledge and experience to other families in the Region of Zealand. The project will employ both quantitative and qualitative methods to assess the practical functioning of the program, the health improvements it engenders, and the lived experiences of the participants gathered through workshops and interviews at various project stages.

Project Manager
Svetlana Solgaard Nielsen, Ph.D., Postdoc

Research and Implementation Unit PROgrez

Department of Physiotherapy and Occupational Therapy

Næstved, Slagelse, and Ringsted Hospitals

Region Zealand

4200 Slagelse

Denmark

Contact: sveni@regionsjaelland.dk

Project Group
Charlotte Simony, RN, PhD
Søren Thorgaard Skou, Physical Therapist, PhD
Lars Hermann Tang, Physical Therapist, PhD
Trine Grønbek Hamborg, Physical Therapist, MSc
Louise Degn Kjølbo Sunddahl, Nutritionist, MSc

Steering Committee
Charlotte Simony, RN, PhD (PROgrez)
Søren Thorgaard Skou, Physical Therapist, PhD (PROgrez)
Svetlana Solgaard Nielsen, Ph.D., Postdoc (PROgrez)
Anne-Louise Bjerregaard, PhD (Steno Diabetes Center Zealand)
2 PPI representatives (in process)
1 representative from Region Zealand (in process)

Other Collaborators

 Advisory Board
Anne-Louise Bjerregaard, PhD, Senior Research Consultant, Steno Diabetes Center Zealand
Karin Brochstedt Dieperink, PhD, Professor, Family-focused Healthcare Research Center, Clinical Department, University of Southern Denmark (Odense, Denmark)
Peter Haulund Gæde, MD, PhD, Professor, Næstved, Slagelse, and Ringsted Hospitals, Medicine Department; Institute for Regional Health Research, University of Southern Denmark
Therese Lockenwitz Petersen, PhD, Postdoc, Nykøbing Hospital, Centre for Epidemiological Research, The Lolland-Falster Health Study
International advisor (in process)

Affiliated with:

1) Research and Implementation Unit PROgrez

2) Department of Physiotherapy and Occupational Therapy, Næstved, Slagelse, and Ringsted Hospitals, Region Zealand, 4200 Slagelse, Denmark

3) Face - Family health and care research Center, Department of Clinical Research, University of Southern Denmark

Mental and Occupational Health in Mothers with Children with Chronic Illness

We are thrilled to extend a warm welcome to Amalie Lyngbo Henningsen, a dedicated midwife and current Master's candidate in Midwifery Science at the Syddansk Universitet - University of Southern Denmark. 

Amalie brings a wealth of expertise to FaCe - Family Focused Healthcare Research Center, holding NBO certification and serving as an external supervisor in the midwifery program in Copenhagen. In January 2024, she embarked on a research journey under the guidance of Professor Ellen Nøhr in the nationwide Danish Birth Cohort, Better Health in Generations (BSiG). 

The project  involved studying 43,639 Danish mothers and their children. The focus? Understanding how maternal employment and mental health are affected by chronically ill children. 

Amalie's study stands out for its comprehensive approach, exploring the long-term effects on both private and professional aspects of these mothers' lives. The research was set to culminate in an article draft, constituting her master's thesis, on January 2, 2025, followed by publication. 

Additionally, Amalie will be actively involved in developing a questionnaire for the cohort's upcoming follow-up. A unique aspect is the collaborative effort of participating mothers, who actively contributed to shaping the study. 

From the project protocol, a brief introduction:
"There is a lot of literature on the burdens that mothers with chronically ill children experience, but only a few have investigated the complex connections between burdens in private and working life and the consequences for the health and labor market attachment for these women. Therefore, we found a need for a large Danish longitudinal study among a general population of mothers, which spans the entire working life. In addition, it seems of great importance to investigate the significance of whether the child suffers from a somatic or mental disease, the severity of the disease, as well as the mother’s employment industry and educational level."

Project team members: 
Professor Ellen Aagaard Nøhr, Faculty of Health, SDU, Denmark
Professor Majken K Jensen, Department of Public Health, UCPH, Denmark
Associate professor Chunsen Wu, Faculty of Health, SDU, Denmark
Undergraduate stud. MSc in Midwifery Amalie Lyngbo Henningsen, SDU, Denmark

Exploration of health interventions and care for long-term adult cancer survivors and their family.

Lead: Elisabeth Coyne e.coyne@griffith.edu.au
Project team: Barbara Voltelen, Cristina Garcia-Vivar, Karin B. Dieperink

OBJECTIVE
What is the current knowledge of research on health interventions/care for long-term adult survivors of cancer and their families?

Project design
Systematic review of literature

Method
Integrative literature review

Analysis
Thematic analysis of the included articles Descriptive demographics of included articles

Expected start and end date
Jan 2022 end date Dec 2024

Aim: This review aimed to systematically identify instruments for assessing family functioning in adults with cancer, critically appraise, and comprehensively summarize their psychometric properties.

Project group
Cristina Alfaro-Diaz1,2, Nuria Esandi1,2, Anne Møller Clausen3,4, Karin Brochstedt Dieperink3,5,6

1Department of Nursing Care for Adult Patients, School of Nursing, University of Navarra, Pamplona, Spain. 
2Navarra Institute for Health Research (IdiSNa), Pamplona, Spain. 
3FaCe Family focused healthcare research center, Department of Clinical Research, University of Southern Denmark, Odense, Denmark. 
4Department of Hematology, Odense University Hospital, Odense, Denmark. 
5Department of Oncology, Odense University Hospital, Odense, Denmark. 
6Griffith University, Brisbane, Australia

It is anticipated that the project will be completed in the spring/summer of 2024.

How do men with cancer experience the meeting with the healthcare professionals.

Stud. Cand.scient.san. Ricco Sølvberg Jørgensen

Supervisor: Professor Karin B. Dieperink

PRIMARY OBJECTIVE
To investigate how men with cancer as a group experience the meeting with the healthcare professionals.

SECONDARY OBJECTIVE
Does it make a difference how men with cancer experience the meeting with the healthcare professionals whether the men have a partner or not

Project design
A qualitative study

Sample size
N=11 men with cancer with a minimum age of 18 years

Method
Hermeneutic approach with focus group interviews.

Expected study period
Start September 2023
End Fall 2024

NADA acupuncture in specialized palliative care: Patients’ and family caregivers’ experiences

Project team: Regina Sørensen, Professor Karin B. Dieperink, RN, MScN, PhD Student Nina Ingerslev Andersen

Objective
To explore whether NADA acupuncture plays a role in relieving suffering experienced by patients hospitalized in a specialized palliative care ward and their family caregivers, and whether it contributes to their coping skills.

Project design
A qualitative study with a hermeneutic approach utilizing inductive thematic content analysis. 

Sample size
N=10 patients and n=15 family caregivers

Target population
Patients hospitalized in a specialized palliative care ward and family caregivers related to patients hospitalized in a specialized palliative care ward. 

Method
Methods applied were semi-structured interviews with patients and family caregivers as either individual or family interviews.

Endpoint
• Relief of suffering

• Extra energy and inner strength to cope

• increased feelings of fellowship and togetherness

• Strengthening the ability to communicate

• Physical and psychological effects, including improvement in sleep, calmness and mood. 

Expected study period
Januar 2023 – April 2024

Video-clinics. This study aims to replace personal consultations in the cancer nursing outpatient clinic with video-consultations to reduce the family stress and transport for patients and families. The intervention is evaluated by a mixed methods approach.

PI: Lene Vedel Vestergaard/ Karin B. Dieperink

Aim: is to gain knowledge of how the older and more independent siblings experience and deal with their sibling's cancer disease and their own role in the family during this challenging circumstances.

Project group
Helene Vasegaard Hansen stud. cand.scient.san., Anne Møller Clausen cand.cur, Maiken Kidholm cand.scient.san PhD Student, Karin B. Dieperink Professor 

The project started in the fall of 2023 and is anticipated to be concluded in the summer of 2024.

Principal investigator: Camilla Littau Nielsen, RN, MSc, PhD student
Supervisor: Jane Clemensen, Professor
Kristina Garne Holm, RN, Associate Professor (co-supervisor)
Michael Thude Callesen, MD, PhD (co-supervisor)
Claus Sixtus Jensen, RN, Associate Professor (co-supervisor)
Ditte Magnusson, Mother of a child who survived cancer (user representative)
Mette Vedtofte, Mother of a child who survived cancer (user representative)

Publications:

Nielsen, C. L., Clemensen, J., Callesen, M. T., Jensen, C. S., Smith, A. & Holm, K. G. (2023). When a child or adolescent is receiving cancer treatment, how to support the parents? A qualitative study done in the compassion paradigm. Submitted to: European Journal of Oncology Nursing

- Nielsen, C. L., Holm, K. G., Callesen, M. T., Jensen, C. S., Smith, A. & Clemensen, J. (2023). Suffering and resilience among health professionals in childhood cancer care: A qualitative study exploring relationship dynamics in a compassion paradigm. Submitted to: Journal of Pediatric Nursing

Principal investigator: Sara Stage Voetman, PhD Student

Supervisor: Dorte Toudal Viftrup

Project team:  Ricko Damberg Nissen, Jens Søndergaard

Publications

Caring Existentially and Spiritually for Young Children and Close Grandchildren of Life-threatened Cancer Patients in Secularized Denmark https://authors.elsevier.com/sd/article/S0749-2081(23)00128-6

ICi-Info: Immunotherapy and Tailored Education for Patients with Cancer and Their Caregivers

Camilla Skov Rothausen is a Master of Science in Nursing. Her Ph.D. project is affiliated with FaCe and entitled: “ICi-Info: Immunotherapy and Tailored Education for Patients with Cancer and Their Caregivers”. The project involves three sub-studies.

This project aims to tailor innovative educational material on immunotherapy with and for patients with cancer and their caregivers, taking into account their level of health literacy to increase self-efficacy and quality of life. Said material should optimize identification and reporting of immune-related adverse events, including the most vulnerable patients and their caregivers.

The first study is an integrative review elucidating how patient education on immunotherapy affects patients with cancer and their caregivers’ level of self-management and self-efficacy when dealing with immune-related adverse events. Camilla and the research team hope to gain valuable information about the effect of the current patient education on immunotherapy.

Drawing on these results, the second study is a co-design study including patients, caregivers, and clinicians in the design process of a new and innovative educational material on immunotherapy.

This innovative education material will be tested in the third study – a randomized controlled pilot trial.

The project is a collaboration between Department of Oncology, OUH, Odense University Hospital, and Clinic of Oncology, Rigshospitalet. The Ph.D. project is a work package in the Immunotox Research Center of Southern Denmark (ICiTox), Odense University Hospital.

Supervisors:
Karin B. Dieperink 1,2,3 RN, PhD, professor
Lærke K. Tolstrup 1,3, RN, PhD, postdoc
Helle Pappot, MD, PhD 4,5, professor
Christina H. Ruhlmann 1,3,6, MD, PhD, associate professor

1 Department of Oncology, Odense University Hospital, OUH

2 Family Focused healthcare research center (FaCe), University of Southern Denmark, Odense, Denmark

3 Department of Clinical Research, University of Southern Denmark, Odense, Denmark

4 Clinic of Oncology, Rigshospitalet, Denmark

5 Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

6 Immunotox Research Center of Southern Denmark (ICiTox), Odense University Hospital, OUH

Senior Consultant Henrik Schmidt, Associate Professor, DMSc, PhD (co-supervisor)

Project started in September 2022, expected to be completed by August 2025.

Method: Combination of Observational Cohort Study and Feasibility of Randomized Controlled Trial (RCT).

Polypharmacy and medication safety in vulnerable older migrants with cognitive disorders – A multi method project.

Principal investigator: Camilla Lynnerup, PhD student
Main supervisor: Dorthe S. Nielsen
Co-supervisor: Morten Sodemann, Anton Pottegård, Charlotte Rossing

Promoting hand use in infants at risk of cerebral palsy by early intervention

Principal investigator: Helle Sneftrup Poulsen
Main supervisor: Lisbeth Rosenbek Minet
Co-supervisors: Alice Ørts, Charlotte Ytterberg, Hanne Lauridsen

Telepalliative Care

Principal investigator: Eithne Hayes Bauer, PhD student
Main supervisor: Karin B. Dieperink
Co-supervisors: Georg Bollig, Frans Brandt Kristensen and Anthony Smith

Publications:

Bauer E, Schultz A, Brandt F, Smith A, Bollig G, Dieperink K. Protocol for an integrative review: patient and families' perspectives on telehealth in palliative care. BMJ Open 2022;12e062723
DOI: http://dx.doi.org/10.1136/bmjopen-2022-062723

Eithne Hayes Bauer’s is Master of Science in Nursing. Her Ph.D. project is affiliated with FaCe and entitled ‘Telemedicine inpalliative care – A model of care based on stakeholders’ perspectives and the core competencies of palliative care’, is divided into three sub-studies.

The overall aim is to develop a model of care for telemedicine in palliative care(telepalliative care), that can guide and support healthcare workers in providing tailor-made patient- and family-centered palliative care in a virtual context. The first study is a review of the evidence that takes a look at patients’ and families’ perspectives on telepalliative care over the last 10 years in high-income, middle-income, and low-income countries. Eithne and the research group hopeto gain valuable information about the needs of families, how and when telemedicine works best for them, and what barriers still exist to families’ adoption of telepalliative care. The group published a protocol for the review in2022 and expects to publish the results of the review early next year. Drawingon these results, the second study will be carried out at the Hospital of Southern Denmark, Sønderborg, and Odense University Hospital. Patients, families, and healthcare professionals will be invited to take part in interviewsand focus groups about their experiences with telepalliative care. Fieldobservations will also be performed to observe how palliative care is delivered in a virtual context. In the third study, which will combine the results of the previous studies, patients, families, and healthcare workers will be invited to participate in workshops to develop a proposal for a model of telepalliativecare.

The project is financed by Grant from University of Southern Denmark, Grantfrom Hospital of Southern Denmark, and “Knud og Edith Eriksens Mindefond”.

The FAMKO project – a collaborative intervention project between the municipality of Odense and the Family Clinic OUH to support wellbeing of vulnerable women, families and their children.

Principal investigator: Lene Nygaard
Ellen Aagaard Nøhr, Dorthe Nielsen, Deborah Davis

The multilingual encounter

Principal investigator: Lisbeth Birkelund, PhD student
Main Supervisor: Dorthe Nielsen
Co-supervisor: Morten Sodemann, Karin B. Dieperink and Johanna Lindell

Lisbeth Birkelund is Master of Arts in English and Nordic Languages and Literature and has worked as a language teacher for several years. A profound interest in language based inequality led to her PhD project in which she investigates the impact of language on encounters between healthcare professionals and patients from ethnic minority backgrounds with limited Danish proficiency and cancer. Putting patients first can be difficult without a shared language, and language barriers can have major consequences for the patient who speaks little or no Danish.

However, language barriers not only impact negatively on patients and healthcare professionals but on familymembers who often have an important role in making communication possible. Therefore, the project is affiliated to FaCe.

Language barriers not only impact negatively on patients and healthcare professionals but onfamily members who often have an important role in making communication possible.In the first study, we use participant observations to examine the communication that takesplace during consultations and chemotherapy treatments at the Department of Oncology atVejle Hospital and Odense University Hospital, Denmark. In the second study, we interview the patients and the family members who want toparticipate to provide knowledge about how they experience the communication as well as togain insight into their basic human conditions. The importance of speaking mother tongue, notleast when being seriously ill, is directly addressed in the second study in which the patientsare invited to further express themselves through diary narratives. In the final study, thehealthcare professionals will be invited for focus group interviews to get their perspective onthe impact of language barriers. Both the patient, family, and healthcare professional perspective will be used to improve the communication processes in multilingual healthcareencounters with respect to both the importance and consequences of speaking mother tongue.

The project is financed by the University of Southern Denmark, Odense University Hospital, andthe Danish foundation, Østifterne.

Timely Palliative Care, the TimePall Intervention

Principal investigator: Nina Ingerslev Andersen, PhD student
Main Supervisor: RN, Professor Karin B. Dieperink
Co-supervisors: Sabine Gill and Heidi Bergenholtz

Nina Ingerslev Andersen is Master of Science in Nursing (MScN) and has worked as a nurse for more than 20 years mainly within the field of oncology and palliative care. Her dedication to ensure the timeliness of palliative care to patients regardless of diagnosis led to her PhD project, aiming to strengthen generalist palliative care through developing, testing and evaluating a palliative care intervention, the TimePall intervention.

The focus of palliative care is to alleviate suffering and improve the quality of life of patients facing life-threatening illnesses and their families through identifying goals of care, controlling symptoms, and caring for the whole family. Families and caregivers are a pivotal part of palliative care. The study entails a strong focus on co-creation across professions, specialties and sectorals.

In the first study we develop an inter-professional, inter-specialty collaborative palliative care intervention through a retrospective medical chart review of palliative care consultations and workshops with patients, caregivers and health care professionals.

In the second study, we perform a non-randomized controlled clinical trial at the Department of Oncology and Department of Cardiology at Odense University Hospital and Zealand University Hospital to test the TimePall intervention in relation to timing of referral to specialized palliative care focusing on patients with cancer or heart failure.

In the final study, we interview patients and caregivers who have participated in the TimePall intervention. Also, we carry out focus group interviews with patients, caregivers and healthcare professionals as well as ask patients and caregivers to fill out questionnaires. This study provides knowledge about the strengthening of generalist palliative care through the TimePall intervention from the perspectives of patients, caregivers and healthcare professionals.

Experiences, coping and dynamics in families including a child with end-stage renal disease.

PI: Hanne Agerskov

Experiences, coping and dynamics in families including a child with a kidney transplant.

PI: Hanne Agerskov

How older adults who have lost a life partner identify self-care requisite and carry out self-care activities: A Systematic review and thematic analysis.

PI: Lisbeth Minet

Interpreting for the family – health care professionals perspectives. A qualitative study.

PI: Dorthe Nielsen

PTSD and depression in families affected by sudden heart death.

PI: Jens Mogensen

A project that tests the effect of the Marriage Check-up, a brief standardized relationship intervention, on interparental relationship quality, interparental conflict pattern and social-emotional child development. Collaboration with Aalborg University Hospital.

PI: RM Laura Kjær Jakobsen

Family and patient engaging health technology. An innovative study in a participatory design for patients and families affected by breast cancer. The PENTINNO study.

PI: Karin Dieperink, Malene Hildebrandt, Jane Clemensen, Annette Kodahl, Lene Vedel Vestergaard

Ph.d.-studiet er en del af frontlinjecenteret PREMIO

Der foreligger et års finansiering til studiet samt to måneders løn til udarbejdelse af protokol.

Family focused interventions for migrant families with PTSD – a project consisting of three studies using qualitative interviews and questionnaires

PI: Dorthe Nielsen/Anne Brødsgaard/Karin Dieperink

Investigating and optimizing outcomes for family caregivers following cardiac arrest

PI: RN Britt Borregaard

Living with AL Amyloidosis - Supportive and palliative care in a patient and family perspective

PI: Anne Møller Clausen RN, MsN
Main supervisor: Nana Hyldig RN, MHS, Associate Professor
Co-supervisors: Professor Karin B Dieperink, Professor Niels Abildgaard, Charlotte Toftmann Hansen MD, PhD

When caring becomes a burden: Family-work imbalances in motherhood. A follow.up study nested in the Danish National Birth Cohort.

PI: Ellen Aagaard Nøhr/ PhD-studerende NN

Danish Nurses Attitudes towards Families’ Importance in Nursing Care. A survey.

PI: Birte Østergaard

This systematic quantitative review will reveal the existing family research on families’ with an adult person with cancer. The collaboration is researchers in Denmark and Australia.

PI: Elisabeth Coyne/Karin Dieperink

Project group

Laura Kvorning, Maiken Langhoff Kidholm, Jens Søndergaard, Dorte Toudal Viftrup, Ricko Damberg Nissen and Niels Christian Hvidt

All employed at the Research Unit of General Practice, Department of Public Health, University of Southern Denmark

Poster: 

Conference The Psychology of Religion in an Entangled World, arranged by International Association for the Psychology of Religion (IAPR), The conference took place in Groningen, The Netherlands 21-24 August, 2023

European Nurses Attitudes towards Families’ Importance in Nursing Care. A survey.

PI: the FAME-RN group

The aim of this study was to explore how nurses can alleviate protective buffering between adult patients with cancer and their adult family caregivers (PROSPERO No. CRD42020207072). An integrative review was conducted. PubMed, CINAHL, Embase, and Cochrane Library were searched for primary research articles published between January 2010 and April 2022. Only research conducted in oncology, hematology, or multiple settings and investigating communication between adult patients with cancer and their adult family caregivers and/or the communication between patients, family caregivers, and nurses was included. The constant comparison method outlined the approach to the analysis and synthesis of the included studies. Titles and abstracts of 7,073 references were screened; 22 articles (19 qualitative and three quantitative studies) were included in the review. Three themes emerged during data analysis: (a) family coping, (b) an isolating journey, and (c) the nurse’s role. A study limitation was that “protective buffering” is not a common term in the nursing literature. There is a need for further research on protective buffering in families with cancer, particularly on psychosocial interventions that focus on the whole family across various cancer types.

Publication: https://doi.org/10.1177/10748407231156454

Project group: Camilla S. Rothausen, RN, MScN, Anne M. Clausen, RN, MScN, Barbara Voltelen, RN, PhD, and Karin B. Dieperink, RN, PhD

In 2022 we welcomed our first trainee: ElisabetSkaalum Mikkelsen. She is in the final year of herstudies as cand.scient.san at University of SouthernDenmark. In the practice period Elisabet conductedan integrative review to create an overview of theresearch-based knowledge on family health frompublications affiliated to FaCe.

The purpose was toidentify methods that have been used successfully aswell as possible patterns in the current literature, andthe need for future research.54 peer-reviewed articles were included in theintegrative review. 43 of the included articles werequalitative, six quantitative and five used mixedmethods. Most studies were conducted in Denmark,four originated from the Netherlands, four were basedin Europe and one was from Australia.

Five themes were identified:
- The family caring responsibility
- Communication, information and emotional support
- Understanding the importance of family involvement in patient care
- Barriers to family involvement
- Effective strategies to promote family health

The family caring responsibility
The caring responsibility that children and young adults experience can negativelyaffect their own life and their relationship to parents or family members. Theyexperience concerns, stress overload affecting their mental health, as well asbodily strains (1-4). Caregivers experience feeling emotionally burdened andscared when suddenly being responsible for the sick individual. They also feelalone and, in some cases, overlooked by healthcare professionals and family (5-7).Healthcare professionals should approach them with recognition, empathy and anopen-minded attitude. Generally, it is important for health professionalsto payattention to the family situation and support accordingly (2-4, 8). Older people who are relating on their children or family to provide care,express how the caring responsibility negatively affects their relationships indifferent ways. It is important for children and other caregivers to be involvedand acknowledged when planning care and treatment, and to perhaps togetherwith healthcare workers, make an agreement related to the caringresponsibility, to prevent any blurred lines and uncertainty, when it comes tothe shared responsibility (1, 9).

Communication, information and emotional support
Caregivers express a need for support (7, 10-13). However, the need forsupport is individual for each family and family member. Therefore, a familycenteredhealthcare approach would provide a greater understanding of theindividual caregiver and the kind of support that is needed (5, 11, 14). Somestudies refer to peer-to-peer support groups as a source to emotional supportwith the potential to improve the return to everyday life after the diseaseprocess (15, 11). Besides support, several studies emphasize the importance ofreceiving information and education, for instance through nursingconversations, to provide quality care, reduce caregiver burden and topromote everyday life within the family (5-7, 10-12). Communication andinformation regarding disease, participation in treatment and emotionalsupport is essential for both patient and caregiver (8, 11, 16-19). Broekema etal. (5) find that open and structured conversations with nurses and otherprofessionals involved in the caretaking, contribute to the feeling of anincreased overview and mutual understanding, that in the end result in areduced burden for family members and improved quality of care for thepatient.

Understanding the importance of familyinvolvement in patient care
There is a general agreement in the literature, thathealthcare professionals are responsible for assessingthe individual needs of patients as well ascaregivers, and providing suitable support (8, 16-18, 20).  The quality of care depends on the whole collaboration between healthcareprofessionals, patient and family caregiver (11, 17, 21). However, there is asignificant difference in nurses’ attitudes towards family importance in nursingcare (22-24). One study found that less than half of the nurses consideredfamily as a collaboration partner (24). Factors like age, country, level ofeducation and work setting have been found to have an impact on the attitude(23-25). As a possible respond to this tendency, several studies state the needto enhance the knowledge of family importance and family involvement inpatient care by educating healthcare professionals in a family centeredhealthcare approach (9, 23-27).

Barriers to family involvement
Some of the included articles examine which potentialbarriers can challenge or hinder the use of familyinvolvement in practice. Healthcare professionals workingwithin organizations without general approaches to familycenteredcare or organizations that do not encourage afamily-centered approach are more negative towardsincluding family in patient care (23, 28). High workload,time pressure and organizational needs of productivitywere found to be barriers for communicating to andinvolving family caregivers in patient care (29, 30). Otheridentified barriers were healthcare professional’s lack ofknowledge, competence and education (26, 28, 30).

Effective strategies to promote family health
Østergaard et al. (22) describe the effect of familynursing therapeutic conversations on patients withheart failure and their family members. Both patientsand families reported positive results following theintervention such as increased reinforcement, decisionmakingcapability and collaboration with the nurse.Broekema et al. (5) also studied the benefits of familynursing conversations and found that the nursingconversations contributed to reducing caregiver burdenand improved the quality of care. A pilot study developing video resources to reduce the burden of caring forpersons with cancer found, that the digital educational material available online,was an effective complement to evidence-based health information (31).Producing disease information and education that is available from home is highlyrelevant when considering the information need that caregivers express in severalof the included articles (5-7, 10-12).Advanced care planning can help patients to make shared decisions abouttreatment and their everyday life (21, 32). Allowing patients to participate in thedecision-making can be empowering and contribute to their feeling of autonomy(32).The multimodal rehabilitative palliative care program was found to be feasible forhigh grade glioma patients (15). The program provided patients and families withinformation and facilitated discussions among peers, as well as strategies tomanage future challenges. The results showed strengthened social well-being andthe value of individualized information (15). 

Future research
The analysis of the literature shows a general agreement among caregivers andpatients across various medical specializations and populations, about what isneeded to prevent the disease from further burdening the surrounding family andpromotes a more holistic and cooperative approach (6-8, 10, 12-14, 16-20). Also,studies have identified factors that impact nurses’ attitudes towards familyinvolvement in healthcare (3, 23, 24, 26) and potential barriers to the familycentered approach (23, 26, 28-30). However, several articles stress the need forfuture research to focus on the existing gap between the needs of patients andcaregivers and the healthcare that is actually being delivered. More specificallythey express the need for family focused research across multiple specialties, andthe development and implementation of family interventions, tailored to thefamily as a unit of care, and with focus on technical solutions to support a personcenteredand family-centered informative approach (12, 15, 26, 27, 29). Also,future studies should investigate the in-depth collaboration between patients,caregivers and healthcare professionals about treatment decisions, itsrelationship to treatment expectations, end of life discussions and other relevantsubjects (15, 20, 26).

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30. Ikander T, Dieperink KB, Hansen O, Raunkiær M. (2021a). Patient, Family
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Project group
Karin B. Dieperink  Jens-Jakob K. Møller, Tina B. Mikkelsen, Nina Konstantin Nissen, Karen La Cour, and Nina Rottmann

Publication
https://doi.org/10.1177/14034948231159464

The Cancer & Caregiver study is a participatory study with the purpose to assess informal caregivers’ supportive care needs, which have a patient in outpatients’ cancer clinics. Furthermore, based on the needs the study will develop support interventions.

PI: Nina I. Andersen/Karin B. Dieperink

Objectives
The Family Health Scale is a new instrument for evaluating family health. The instrument is reported as valid and reliable in investigating family health among different types of adult family members. This study aimed to translate the Family Health Scale into Danish and investigate its validity and reliability in families with a family member affected by chronic or serious illness.

Study group
Sharifa Alawi , Karin B. Dieperink b, Hanne Agerskov c, Jette Marcussen d, Sören Möller e, Barbara Voltelen, Nana Hyldig 

Publication
https://doi.org/10.1016/j.soncn.2023.151480

Advance Care Planing in chronic kidney care:

Principal invstigator: Christina Egmose Frandsen, PhD student
Main supervisor: Hanne Agerskov
Co-supervisors: Hans Dieperink and Bettina Trettin

Palliative Care. End-of life decisions in palliative care for lung- and pancreas cancer patients and families.

PI: Tine Ikander

Main supervisor: Karin B. Dieperink

Publications:

Ikander T, Raunkiær M, Hansen O, Dieperink KB. Nurses' involvement in end-of-life discussions with incurable cancer patients and family caregivers: An integrative review. Palliat Support Care. 2022 Aug;20(4):570-581.
DOI: https://doi.org/10.1017/S1478951521000596

Ikander T, Dieperink KB, Hansen O, Raunkiær M. Patient, Family Caregiver, and Nurse Involvement in End-of-Life Discussions During Palliative Chemotherapy: A Phenomenological Hermeneutic Study. J Fam Nurs. 2022 Feb;28(1):31-42.
DOI:  https://doi.org/10.1177/10748407211046308

Ikander T, Jeppesen SS, Hansen O, Raunkiær M, Dieperink KB. Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study. BMC Palliat Care. 2021 Feb
26;20(1):37.
DOI: Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study | BMC Palliative Care | Full Text (biomedcentral.com)

The ACE study is a participatory design study to focusing on improving outcomes by person-family centered assessment and tailored care for adults and families discharged from the Emergency Department within 24 hours.

Principal investigator: Christina Østervang, PhD student
Main supervisor: AnnMarie Lassen
Co-supervisors: Charlotte Myhre, Karin B. Dieperink and Elisabeth Coyne

Publications:
Østervang C, Lassen A, Schmidt T, Coyne E, Dieperink KB, Jensen CM. Development of a health information system to promote emergency care pathways: A participatory design study. Digit Health. 2022 Dec 26;8:20552076221145856.
DOI: https://doi.org/10.1177/20552076221145856

Østervang C, Lassen AT, Øelund K, Coyne E, Dieperink KB, Jensen CM. Health professionals' perspectives of patients' and family members' needs in emergency departments and patient pathway improvement: a qualitative study in Denmark. BMJ
Open. 2022 Feb 28;12(2):e057937.
DOI: http://dx.doi.org/10.1136/bmjopen-2021-057937

Østervang C, Lassen AT, Jensen CM, Coyne E, Dieperink KB. What are the needs and preferences of patients and family members discharged from the emergency department within 24 hours? A qualitative study towards a family-centred
approach. BMJ Open. 2021 Nov 9;11(11):e050694.
DOI: http://dx.doi.org/10.1136/bmjopen-2021-050694

Østervang C, Lassen AT, Jensen CM, Coyne E, Dieperink KB. How to improve emergency care to adults discharged within 24 hours? Acute Care planning in Emergency departments (The ACE study): a protocol of a participatory design study. BMJ Open. 2020 Dec 22;10(12):e041743.
DOI: http://dx.doi.org/10.1136/bmjopen-2020-041743