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- Bauman, Cecilia, et al.
(författare)
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Mutuality and understanding through web-based support during specialised palliative home care : Family caregivers’ and patients’ experiences
- 2024
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Konferensbidrag (refereegranskat)abstract
- Background/Aim Family caregivers and patients in palliative care are often mutually dependent, supporting each other through the impact of serious illness. The possibility to cope as a couple is of particular importance for family caregivers when providing care at home. A psycho-educational website was developed to support family caregivers in this situation. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers, for example illness-related communication and planning for the future. This study aimed to explore influences of web-based support on experiences of mutual support between family caregivers and patients with life-threatening illness.Methods This study was part of a randomised controlled trial and used a qualitative approach. In total, 8 couples were interviewed, one family caregiver and one patient together in each interview (age 46–85). Data were analysed using interpretive description.Results Both family caregivers and patients appreciated the opportunity for family caregivers to have their own private platform of support. For each of them personally, and as a couple, it was relieving that also family caregivers’ needs gained attention and were put into focus. Family caregivers expressed feelings of normalisation as their own thoughts were addressed in the videos. Recognising the situations described in the videos was empowering, helping to cope with their own stress and strain, as well as facing the patient’s similar feelings. This facilitated their everyday life as a couple supporting each other in illness. Couples described themselves as being a team.Conclusions This website, supporting family caregivers, influenced family caregivers’ and patients’ mutual life by enhancing understanding of the shared situation and how to approach it. Although only family caregivers did access the website, it was beneficial for both of them in their everyday life.
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| 2. |
- Bauman, Cecilia, et al.
(författare)
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Recognition and reassurance through web-based support for family caregivers during specialised palliative home care
- 2024
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Konferensbidrag (refereegranskat)abstract
- Background/Aims Even though in person supportive group interventions for family caregivers have been effective they can also be challenging to implement. Web-based support could be an alternative and hence we developed a website focused on a psycho-education for family caregivers. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers. Informative texts and a moderated chat forum are also included. This study aimed to explore family caregivers’ experiences of the website while caring for a patient with life-threatening illness at home.Methods The present study was a part of a randomised controlled trial and used a qualitative approach. Interviews were performed with 16 family caregivers (age 42–85); 12 partners, 2 adult children, 1 parent, and 1 sibling. Data were analysed using qualitative content analysis.Results Family caregivers appreciated the flexibility and possibility to access the website at a time and place of their own convenience when ready to do so. Having access to the website was perceived as reassuring because caregivers knew they could access support when needed throughout the illness progression. Using the website made it easier to approach and reflect upon issues related to incurable illness and death, it also facilitated addressing such issues with the patient. The videos contributed to a sense of recognition and comfort when the family caregivers’ own thoughts, concerns, and feelings were described by others. This was important to gain new insights on difficulties and challenges in their role as caregivers. Family caregivers hesitated to use the chat forum even though they wanted to. They expressed waiting for others to initiate a conversation.Conclusions Psycho-education content via a website allowed family caregivers to decide what support they wanted depending on needs, time, and situation. Future research should focus on evaluating effects of web-based support through experimental designs.
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| 6. |
- Doveson, Sandra
(författare)
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Experiences, expectations and treatment decision-making in men with metastatic prostate cancer
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Participation in treatment decision-making (TDM) is important to patients with cancer and TDM experiences and preferences for how to make treatment decisions have been extensively studied in men with localised prostate cancer. Their preferences for how to partake in TDM are diverse and influenced by several factors. A significant proportion of men with localised prostate cancer, however, develop metastatic disease (mPC), after which the disease is considered incurable. The life-prolonging treatment possibilities at the most advanced stage of mPC, metastatic castration-resistant prostate cancer (mCRPC) have increased dramatically over the past decade, and far less is known about experiences and TDM in these advanced phases of the disease.Aim: The overall aim of the thesis was to explore experiences, expectations and treatment decision-making in men with metastatic prostate cancer.Methods: Studies I and IV were prospective, longitudinal cohort studies, study II was qualitative and study III had a qualitative, serial design. In study I, two matched groups of men with mPC (n=106) and non-mPC (n=211) were followed over 5 years with repeated questionnaires. Quality of life, symptoms and functioning were compared between the groups using independent samples Mann–Whitney U tests. The samples in studies II-IV comprised men with mCRPC who underwent life-prolonging treatment. In study II, 16 men were interviewed about their perspectives when faced with a life-prolonging treatment. Data was analysed using interpretive description. In study III, 17 men partook in serial qualitative interviews about their experiences of TDM and data was analysed with qualitative content analysis. In study IV, 114 men answered repeated questionnaires about satisfaction with TDM regarding the life-prolonging treatment and treatment experiences over the course of one year. Associations between satisfaction with TDM at baseline and treatment experiences and wellbeing at six and 12 months were explored using Spearman’s rank correlation.Results: Compared to men with localised prostate cancer, men with mPC report increasing symptoms and worsening quality of life and functioning over time once they develop metastases. TDM was twofold and contained both the desired treatment outcome and aspects of the structure of how the treatment decision was made. When men with mCRPC are faced with a life-prolonging treatment, they weigh the potential treatment benefits – prolonging life – against the possible treatment side effects and their intrusion on the men’s everyday lives. Receiving personalised information was important to the men, and the treating physician was a key party in TDM to whom the men modified their TDM role and -actions. Their satisfaction with the TDM structure was also associated with their physical and emotional wellbeing over time.Conclusion: TDM regarding life-prolonging treatment was found to be a complex, balancing act in which men with mPC face and manage a number of complex situations and have diverse experiences and preferences. Given that men with mPC report declining quality of life, symptoms and functioning and had unmet needs regarding information, continuity of care, communication and TDM, early integration of a palliative approach into the care of men with mPC could work as a way to identify and manage needs that need to be addressed.
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| 7. |
- Doveson, Sandra
(författare)
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Experiences of Living with, and Undergoing Life-prolonging Treatment of, Metastatic Castration-resistant Prostate Cancer : A Qualitative Study
- 2015
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Konferensbidrag (refereegranskat)abstract
- Prostate cancer is the most common form of cancer amongst men in both Sweden and Europe. Once the disease has metastasised, and is no longer sensitive to hormonal (castration) therapy, it is considered incurable. However, since a few years back men at this stage of the disease have the opportunity to undergo different life-prolonging treatments. The knowledge about the effect of these treatments on different patient-reported outcome measures is very limited. Thus, the aim of this study was to, based on men’s experiences of living with, and undergoing life-prolonging treatment of, metastatic castration-resistant prostate cancer (mCRPC), identify issues and matters of importance and significance to this group. The study also includes an evaluation of a questionnaire intended for use in a larger prospective research project including men in the corresponding situation.The study was conducted with qualitative design. Data was collected through nine interviews; five were semistructured and four were carried out with think-aloud methodology. The content of the interviews revolved around the questionnaire, as well as the participants’ situation living with and undergoing treatment of mCRPC. Data was analysed using qualitative content analysis. In conclusion, the result indicates that living with and undergoing life-prolonging treatment of mCRPC could mean living in a world of uncertainty and change. This could be manifested in various ways, with physical, psychological, emotional, social and existential consequences. Information, knowledge and participation in decision-making appeared to be of importance. The complexity of these men’s situations puts demands on health care, where a holistic view of the patient, continuity and trust were described as essential. The result was applied in the completion of the research project questionnaire.The study was carried out with financial support from Sophiahemmet reseach fundings and County council of Sörmland.
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| 8. |
- Doveson, Sandra, et al.
(författare)
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Facing life-prolonging treatment : The perspectives of men with advanced metastatic prostate cancer - An interview study
- 2020
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 49
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Several life-prolonging treatment options have recently become available for metastatic castration-resistant prostate cancer. However, research regarding patient experiences while undergoing these treatments is scarce. The aim was to explore the perspectives of men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer.METHOD: Qualitative interviews were conducted with 16 men as they were starting, undergoing or had completed their first life-prolonging treatment. Interpretive description was used for analysis.RESULTS: The results illuminate the complexity of facing life-prolonging treatment, with interlaced dimensions beyond just the outcome, and where the men described other dimensions of their lives in relation to the treatment. The results are presented as 4 themes; Considering treatment when the remainder of life is at stake, Preparing for the life-prolonging treatment after deciding to go through with it, Considering the prospect of the life-prolonging treatment not being successful and Reflecting on death and dying in the light of a life-limiting illness.CONCLUSIONS: The quality and content of the remainder of life are central for men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer. This is important when weighing desired treatment outcomes against side effects, and when reflecting upon whether going through with treatment would be worth it or not. The results illuminate the importance of encouraging men at this stage to express expectations, hopes and fears regarding the treatment and the future when considering life-prolonging treatments. Nurses working with these patients are important in the decision-making process and in evaluating treatments, to detect needs for interventions.
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| 10. |
- Doveson, Sandra, et al.
(författare)
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Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases : a matched, prospective study
- 2023
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 21:2, s. 230-238
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Tidskriftsartikel (refereegranskat)abstract
- Objective To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases. Methods From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT. Results The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes. Significance of results The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment.
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