Tag: informal caregivers

Supporting Informal Caregivers of Head and Neck Cancer Patients: Understanding Their Challenges and Needs

Caring for a loved one with cancer is a deeply personal and emotionally challenging journey. For many, it’s a labour of love with a profound sense of purpose and satisfaction. However, the role of informal caregivers (ICs) is not without its unique set of challenges. In this blog post, we delve into a research paper exploring the world of informal caregivers, particularly those who support individuals battling head and neck cancer (HNC).

Paper: Langegård, U., Cajander, Å., Ahmad, A., Carlsson, M., Nevo, E. O., Johansson, B., & Ehrsson, Y. T. (2023). Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer-A basis for developing internet-based support. European Journal of Oncology Nursing, 102347.

The Struggles of Caregiving for HNC Patients

Head and neck cancer presents a unique set of challenges due to its impact on essential functions like swallowing, speaking, and breathing. Patients often undergo treatments that result in various distressing symptoms, such as dry mouth, altered facial appearance, and debilitating pain. This increased dependence on caregivers adds an extra layer of responsibility.

Studies have highlighted the significant caregiver burden experienced by ICs of HNC patients. Caregiver burden refers to the multidimensional physical, psychological, and social challenges caregivers face when caring for their loved ones. Depression, fatigue, and sleep disturbances are common among ICs in this context, emphasizing the need for support.

Preparedness for caregiving refers to an IC’s perceived ability to provide physical, emotional, or practical care while managing the associated stresses. Research has shown that well-prepared caregivers experience fewer worries and are more capable of providing care.

The Research Study and Its Objectives

The study we’re discussing is part of a broader research project aimed at developing online support for ICs of individuals with HNC. The project is called Carer eSupport and is presented in this blog post. It’s a collaborative effort involving expert caregivers, medical professionals, and human-computer interaction experts. The project focuses on addressing the unique needs of ICs to enhance their preparedness for caregiving.

Exploring ICs’ Challenges and Needs

The qualitative study conducted for this research employed thematic analysis to gain insights into the challenges and needs of ICs supporting individuals with HNC. The study involved both focus group discussions and individual interviews.

The findings revealed that being an IC for HNC patients is a multifaceted experience. ICs often felt excluded from the care process due to a lack of information about their loved one’s health status. This left them feeling unprepared and disconnected.

The impact of caregiving on daily life was significant. ICs had to adapt their routines and sometimes even sacrifice their social lives and work commitments. This shift in priorities could lead to isolation and emotional strain.

Carrying the uncertainty of the cancer journey was another emotional burden for ICs. Waiting for diagnoses or witnessing treatment’s effects generated fear and anxiety about the future.

The research also highlighted the transformation of the IC’s role and the dynamics of the caregiver-patient relationship. ICs often transitioned from being partners or family members to full-time caregivers. This shift could strain the relationship and create vulnerability.

Feeling forced into the caregiver role and dealing with practical responsibilities, such as wound care, added to the emotional burden. ICs frequently felt ill-equipped to handle these responsibilities.

Additionally, caregiving often led to a loss of the IC’s own identity as they became consumed by their relative’s needs. This loss of identity could also be linked to changes in the patient’s personality due to pain or treatment side effects.

The study also explored the sources of support for ICs. A strong social network that provided practical and emotional support was invaluable. This included understanding employers who allowed flexibility, friends and family members who offered assistance and even support from healthcare professionals.

However, not all ICs were fortunate enough to have this support network. Some felt isolated and struggled to ask for help or define their needs. The research emphasized the importance of both emotional and informational support, including education about practical aspects of care.


Understanding the challenges and needs of informal caregivers supporting individuals with head and neck cancer is a critical step toward providing them with the necessary support. This research sheds light on the emotional and practical hurdles these caregivers face and underscores the importance of preparedness for caregiving.

As the healthcare community continues developing interventions and support systems, it’s essential to consider the insights gained from studies like this. By addressing the specific needs and challenges of ICs, we can enhance their ability to provide the best possible care to their loved ones while safeguarding their own well-being.

E-Coaching for Informal Caregivers: Building Resilience and Well-being

Closeup of a support hands

As we navigate through the complex experience of caregiving, it is often the informal caregivers, such as close friends or relatives, who become the unsung heroes of caregiving at home. These caregivers are the ones who provide the much-needed support and assistance that patients require to live life with some semblance of normalcy.

For informal caregivers, providing care for a loved one can be emotionally, physically, and mentally challenging. They often have to adapt to a new role as the primary caregiver, while also managing their own lives and responsibilities. Consequently, caregiving can take a toll on these caregivers’ well-being, with many experiencing stress and burnout. Interventions designed to provide support to these caregivers are thus crucial. To this end, our recent study identified important unmet needs of informal caregivers and provided design suggestions for a persuasive e-coaching application using the persuasive system design (PSD) model. The PSD model offers a systematic approach to designing IT interventions.

Using a qualitative research approach, we interviewed 13 informal caregivers and conducted a thematic analysis of the data. From this analysis, six needs were identified: monitoring and guidance, assistance in navigating formal care services, access to practical information without feeling overwhelmed, a sense of community, access to informal support, and the ability to accept grief. These needs formed the basis for suggested design features in an e-coaching application, using the PSD model.

However, we found that some needs could not be mapped using the existing PSD model. As such, we adapted the model to better address the needs of informal caregivers.

By identifying the needs of informal caregivers and providing design suggestions for an e-coaching application, this study offers support and hope for those navigating the challenging role of caregiving. The suggestions for e-coaching applications using the PSD model have the potential to ease the caregiving burden, as well as provide caregivers access to the support and resources they need to provide better care, which is an essential factor in improving both the caregiver’s well-being and the overall quality of care provided to patients. This study highlights the importance of providing support to informal caregivers and demonstrates the potential of technology-based interventions to improve caregivers’ lives. With further development and refinement, e-coaching applications designed based on the PSD model could become valuable tools for supporting and empowering informal caregivers.

Designing Persuasive eCoaching Application for Informal Caregivers in Sweden: My work in ENTWINE

ENTWINE – Informal Care

As I sit down to reflect on my experience with ENTWINE Informal Care, I am filled with gratitude for the opportunities that this Marie Skłodowska Curie Innovative Training Network (MSCA-ITN) funded by the European Union Horizon2020 has provided me. It’s been a journey of growth, learning, and collaboration that has impacted my personal and professional life in ways I couldn’t have imagined. The program began in March 2019, but my journey with the ENTWINE project began in October 2019 when I moved to the beautiful island of Gotland in Sweden. I was thrilled to be a part of this program as informal caregiving was already interesting to me personally, given that I had been an informal caregiver for my father for over a year. So, I have a personal motivation to work in this area. I am also interested in the field of designing IT systems, and I was delighted to find that these two interests aligned so well in my project in ENTWINE.

One of the most exciting aspects of ENTWINE was the opportunity to work with other PhD students hosted across five different countries in Europe. You may read more about ENTWINE and the research done here. The cohort was diverse, and we all brought our unique experiences and perspectives to the table. The training courses offered through ENTWINE were invaluable in helping us develop the skills and knowledge needed to conduct high-quality research in the field of caregiving. We received training in areas such as caregiving, persuasive designing, positive technology research methods, entrepreneurship, and many more. The courses were rigorous and challenging, but they were also fun and engaging. It was clear that the program coordinators had put a lot of effort into designing a curriculum that would equip us with the skills and knowledge we needed to contribute positively in our respective fields. Another highlight of the program was the opportunity to work with multiple industry and academic partners. We had the chance to discuss our work and learn from them through dedicated research secondments. My secondments were at the University of Twente and the University of Oulu, where I spent three months each. These secondments helped shape my PhD and helped form good collaborations.

AnhörigCare: An eCoaching Application for Informal Caregivers in Sweden

My PhD work focuses on designing a persuasive eCoaching application (AnhörigCare) for informal caregivers in Sweden. ‘AnhörigCare’ means caring for ‘anhöriga’, the Swedish word for relatives. Informal caregivers are individuals who take care of their sick family members or friends suffering from a long-term illness. Caregiving can be difficult and can affect the well-being of the caregiver and they often experience stress and anxiety. As a result, my research focuses on designing an eCoaching application called AnhörigCare for caregivers in Sweden to support them in their caregiving activities and assist them in self-care.

‘AnhörigCare’ means caring for ‘anhöriga’, the Swedish word for relatives.

Persuasive System Design

AnhörigCare was designed using the Persuasive System Design (PSD) model. The PSD model is a comprehensive framework created to assist in designing systems that can impact users’ behavior. It offers designers a methodical approach to designing persuasive IT applications that are tailored to the specific needs of caregivers, making them more effective in assisting them to achieve their objectives. It also presents a structured design strategy for creating appealing and practical interventions. Additionally, the PSD model offers organized design principles that can be utilized by designers. This model proposes 28 design principles grouped into four dimensions: primary task support, dialogue support, credibility support, and social support. The first dimension, primary task support, aims to assist users in accomplishing their intended behavior. The second dimension, dialogue support, employs design principles that encourage users through feedback and interaction with the application. The third dimension, credibility support, employs techniques that enhance the application’s perceived credibility and trustworthiness by the user. The fourth and final dimension, social support, uses methods to leverage social influence (illustrated in the figure below).

Persuasive System Design model

The Design Process

AnhörigCare aims to provide access to practical information, access to formal services related to caregiving, and access to an online forum that can connect caregivers with each other to feel part of a community. This figure illustrates the activities in this project to design the final version of AnhörigCare. 

We started with a review of literature. The extant literature points to access to information regarding caregiving, access to formal services to assist caregivers, feeling of community, words of acknowledgment and encouragement, self-care, and informal peer support as major needs of caregivers. The descriptions of their needs were compared with the persuasive design principles from the PSD model. Based on this match, design principles was chosen to meet their needs, creating the first version of AnhörigCare. Expert evaluations were then conducted on this version and changes to navigation and presentation of content were made. In the next step, we interviewed caregivers in Sweden to elicit their needs for an eCoaching application. Based on these needs we presented some design suggestions to further update AnhörigCare. After which we conducted design workshops with caregivers as a means to involve them in the design of AnhörigCare and finally a scenario-based user testing.

Based on the design workshops and user testing, the final design of AnhörigCare will be created. Here are some initial screenshots of AnhörigCare.

Watch this space for upcoming articles on this research!

Further Readings

Oinas-Kukkonen, H., & Harjumaa, M. (2009). Persuasive systems design: Key issues, process model, and system features. Communications of the association for Information Systems24(1), 28.

Empowering Unsung Heroes: Carer-eSupport – An Online Intervention for Caregivers of Head and Neck Cancer

Cancer is a devastating disease that affects not only the patient but also their informal caregivers, who play a crucial role in caring for them, especially in the home environment. The role of a caregiver can be physically and emotionally exhausting, leading to stress, anxiety, depression, and post-traumatic stress disorder. With limited resources and information available to informal caregivers, the situation becomes even more challenging. In this context, eHealth applications might help caregivers to cope with their caregiving responsibilities and enhance their well-being.

Carer-eSupport project

The Carer-eSupport project is a commendable effort to provide support to informal caregivers of head and neck cancer patients. I am part of the Carer-eSupport project as a PhD student. The project’s overall goal is to prepare caregivers for their caregiving role and decrease their caregiving burden who often struggle to balance their caregiving responsibilities with their personal and professional lives.

In this project, we first gathered user needs and preferences from caregivers and healthcare professionals to ensure that the intervention is user-friendly, effective and acceptable. Based on these findings, the first version of Carer-eSupport is developed, followed by feasibility studies to evaluate its effectiveness and acceptability. The results from these studies will inform the design of the second version of Carer-eSupport. Thereafter, it will be tested through a randomized controlled trial, which will provide robust evidence of the intervention’s effectiveness. The project’s study protocol, “Internet-based support for informal caregivers to individuals with head and neck cancer (Carer-eSupport): a study protocol for the development and feasibility testing of a complex online intervention,” provides more detailed information. By prioritizing the needs and well-being of caregivers, the Carer-eSupport project has the potential to make a significant impact on the lives of informal caregivers of head and neck cancer patients.

An initial prototype of Carer-eSupport

User-centred Positive Design (UCPD) framework

To support informal caregivers’ subjective well-being, we proposed a User-centred Positive Design (UCPD) framework that combines User-Centred Design (UCD) and Positive Design Framework (PDF) as shown in the figure below. UCD is a systematic approach that considers users and their needs in all steps of design and development. PDF, on the other hand, describes how design can enhance the subjective well-being of users. By focusing on the subjective well-being of users, the UCPD framework aims to create eHealth applications that not only solve the user’s problem but also have a long-lasting and positive impact on their well-being.

User-centred Positive Design Framework

In conclusion, the UCPD framework provides a theoretical framework for designing internet-based support systems that have a positive, holistic impact on users’ well-being. The Carer-eSupport project serves as an excellent example of how the UCPD framework can be applied in designing eHealth applications for informal caregivers of cancer patients. With further research, the UCPD framework has the potential to enhance the subjective well-being of users across various domains of healthcare.

Research Team

Our research team comprises researchers from different disciplines, including human-computer interaction (HCI), software engineering, cancer nursing, and medical research. Following are the team members.

Further readings