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family-32

centred care and a more holistic perspective is essential for the development of high-quality survivorship care.

It is well known that oesophageal cancer patients suffer from a reduced HRQL due to treatment side-effects (74-76). However, whether the family caregivers’ HRQL is impacted by the patients’ disease and treatment has not been in focus in previous research. Results from study III showed that family caregivers’ age, sex and education level were associated with their HRQL. In addition, patients’ complications and patients’ weight loss were associated with their family caregivers’ HRQL. Patients’ complications were the exposure that had the strongest association with the family caregivers’ HRQL. Complications among patients are common after extensive surgery. Complications might increase the worry among family caregivers which could impact the HRQL. The patients’ tumour stage and comorbidity were not associated. Having knowledge in tumour histology, one would think that an

advanced tumour stage would impact family caregivers. However, all patients included in OSCAR had been selected as eligible for curatively intended treatment. Maybe, that could be seen as the most important factor for family caregivers, and therefore, the tumour stage was irrelevant. Study IV showed that a worse overall HRQL among patients was associated with reduced emotional role function for family caregivers. In addition, some of the HRQL subscales in the RAND-36 were on the border of being clinically relevant (social function, physical role and energy/fatigue).

Stress has been found to be a strong predictor of family caregivers quality of life (77). Male caregivers had a positive experience of being a caregiver, especially husbands, having less psychological distress and better mental health. While females found caregiving more stressful. The traditional role among females being more aimed to care, the men might be satisfied to take over the caring role (77). The results in study III indicated that female caregivers have a higher level of emotional role compared to men. Maybe, this could be because females traditionally have more responsibility for caring at home with daily housework. However, it would be interesting to study the psychological distress among the family caregivers included in the thesis. Females are over representative and if they

experience a higher level of distress, it is necessary to find ways to support them.

It has been indicated that the HRQL among family caregivers of patients with a cancer diagnosis varies along the disease trajectory and that there is a knowledge gap on the long-term perspective after treatment (78). An American study investigating family caregivers eight years after the patients’ initial diagnosis showed that they still suffer from mental and physical health problems compared to the US general population (79). There is a need to expand the research field within the HRQL perspective for family caregivers to better understand their need for support. In addition, such data can be useful in developing a prediction tool that can identify family caregivers who are at an increased risk of a reduced HRQL. The results from study III and IV can contribute to the development of such a tool.

The RAND-36 does not capture caregiver burden and specific caregiver HRQL. It would be preferable with studies of more detailed outcomes regarding such aspects. In addition, due to

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the long-term effect of HRQL among patients due to complications, it would be highly advisable to investigate family caregivers’ burden and specific HRQL for a longer period than one year to see whether there is an association between complications and family caregivers’ HRQL in the long term.

All four studies within the thesis together give a clearer picture of what it is like to be a family caregiver of a patient treated for oesophageal cancer. The stress process is extensive and innovative support by the healthcare is needed to release their burden. Further, they need psychosocial support to be able to control their fear of tumour recurrence. In addition, some factors impacting their HRQL are known.

How the family caregivers´ HRQL and psychosocial factors can be improved is an important aspect to consider in the research field of cancer survivorship. One, systematic review of 15 studies from 2020 about interventions among family caregivers of patients with cancer showed that psychoeducation had a positive effect on the burden, quality of life aspects and psychological symptoms. In addition, counselling among family caregivers of advanced cancer patients or family caregivers with a high symptom burden reduced psychological symptoms and benefited their quality of life (80). However, another meta-analysis that investigated interventions among family caregivers of patients with cancer highlighted that many of the 29 studies included did not have the main intention to study the family

caregivers. The studies were designed for the patients and the content regarding family caregivers was a secondary focus provided by incident or as an afterthought (81). If research among family caregivers is not conducted as the main aim and with full focus on how they can be helped, the findings might be doubtful. Several of these studies in the review and meta-analysis concluded that the family caregivers were negatively affected in psychosocial aspects which is consistent with what was also observed in the studies of this thesis. There is a need to put more focus on family caregivers’ perspectives on the research agenda in order to support them.

Considering the prediction that Europe will have 4.3 million new patients with a cancer diagnosis by 2035 (3), and more than 50% of these patients are predicted to survive (7), this will increase the challenges of cancer survivorship care. To include the people that care for the patients is fundamental to improve the survivorship of these patients. Nevertheless, more research is needed into determining what interventions are effective to support family caregivers. By strengthening supportive care and including family caregivers, the survivorship of patients and the quality of life of family caregivers will increase.

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7 CONCLUSIONS

 Family caregivers of long-term survivors after oesophageal cancer treatment are struggling with psychosocial consequences because of the patients’ cancer diagnosis and its treatments.

 Family caregivers experience that they are responsible for the patients’ care at home.

They are lacking support after the patients’ hospital discharge and express a need for more information from the healthcare.

 Family caregivers’ HRQL is impacted by the patients’ diagnosis and treatment.

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8 POINTS OF PERSPECTIVE

Family caregivers of oesophageal cancer patients have an impaired life situation as shown in the current thesis. A further step in research and a clinical context is to develop, implement and evaluate supportive care interventions. The interventions should be both for patients and family caregivers aiming at a more family-centred perspective. The interventions could benefit from adaption to the disease trajectory, from diagnosis to survivorship. One

suggestion could be to start with an educational program for patients and family caregivers at the time of diagnosis to make sure that all patients and family caregivers receive the correct and the same information. Another suggestion to help the family caregivers to reduce their feeling of loneliness could be an intervention with a digital forum. An application with information about the disease, treatment and how to handle side-effects but also the function to interact with others. This could be used to help the family caregivers to meet with other family caregivers. In this way, they could exchange experiences and information, but also feel an affinity in a context. Such interventions could relieve burden and stress and positively affect family caregivers’ HRQL.

Additionally, it is of utmost importance to identify family caregivers at risk of psychosocial consequences affecting their HRQL by conducting research with high participation and well-validated questionnaires. Such information will benefit the development of individually based care for the family caregivers.

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9 ACKNOWLEDGEMENTS

I would like to thank all the participants in OSCAR for contributing with the information used in this thesis. In addition, I would like to thank Karolinska Institutet and the Research School in Health Care Science (FiV) for an excellent doctoral education.

I would like, especially, to thank the following people for help and support during my doctoral education:

Pernilla Lagergen, my main supervisor. Thank you for giving me the opportunity to be part of your research group and in particular for believing in me. Through your curiosity and love for research, you provided me the perfect conditions to grow as a researcher. You have always been available and you have been patient with me despite my numerous questions.

Together with Jesper Lagergen, you have created an amazing environment that is enjoyable and rich in opportunities to improve a doctoral student’s research interest.

Yvonne Wengström, my co-supervisor. It has been a privilege to engage in academic discussions with you. You provided me with great knowledge, not only in qualitative methods, but also in the clinical aspects of research.

Anna Schandl, my co-supervisor. I am grateful for all the time spent together debating and considering how to improve my studies. Your pragmatic approach has helped me to develop my critical thinking, a fundamental aspect of research.

Asif Johar, my informal co-supervisor. Thank you for being so patient and tolerant when teaching me statistics.

Zhao Cheng, my collaborator and friend. It was a great experience to plan and conduct a study together. I hope there will be more opportunities in the future to meet and work together.

To all my colleagues at “SCS” and “UGIS”. Thank you for making the time at the office precious and fun. I will miss all the nice “fika”-discussions we had during these years. You have contributed to create a very positive environment and I feel like I have learnt a lot from all of you. Special thanks to Giulia Marras for being such a great help in taking care of many different tasks and arranging all administrative work during my doctoral education.

To the MMK administration. Thanks to Ann-Britt Wikström and Catharina Lavebratt for being available and helpful with administrative duties during my years as a doctoral student.

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Karin Vikström, my former colleague and now friend. You have been like a mentor during these four years. I appreciate your honesty and fairness in guiding me both in my profession and, most of all, in my personal life.

Therese Röing, my nurse-partner in crime. You have always been there to support when doubting myself. We have known each other since nursing school and, despite the long distance, we have become best friends. It was thanks to our thesis in nursing school and our supervisor, Albertine Ranheim, that my interest in research started.

Patrik, I am very lucky to have you as my love and best friend. You challenge me in a positive way and encourage me in everything I do. You are constantly there for us and I look forward to our future together full of adventures and beautiful moments.

My family, Amanda, my sister. Thank you for cheering me up even on my bad days. My mother, for being present whenever I needed her help; and to my dad, for always inspiring me to strive for more and to make a difference in the field of cancer and survivorship research.

Carla and Philippe, my two favorite persons in the whole world. Thank you for reminding me that being a mom is the most important and wonderful thing in life. The time spent together boosts my energy and it has helped me to keep on going during this time of hard work.

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I dokument THE PERSPECTIVE OF BEING A FAMILY CAREGIVER OF A PATIENT TREATED FOR OESOPHAGEAL CANCER – PROBLEMS AND NEEDS (sidor 47-62)

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