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1.
  • Bartuma, Katarina, et al. (författare)
  • Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
  • 2012
  • Ingår i: Hereditary Cancer in Clinical Practice. - BioMed Central. - 1731-2302. ; 10
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: A growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer. Methods: Lynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles. Results: Family members described how learning about Lynch syndrome shifted focus from daily issues to concerns about cancer. Changes in communication related to difficulties in talking to children about heredity and informing new family members and distant relatives about an increased risk of cancer. Influence on relations was exemplified by family members taking on different roles, e. g. females often being responsible for coordinating information about heredity and providing support. Families in which members had experienced cancer at young age typically informed children soon after learning about heredity and at young age, whereas families with experience of cancer at higher age postponed information and thereby also genetic counselling. Conclusions: Three major family perspectives are described in Lynch syndrome families; becoming a risk family, patterns of communication and influence on family relations. Since these issues are central, our findings suggests that such family perspectives should be considered during genetic counselling in order to contribute to information spread, help family members cope with the increased risk, and motivate family members at risk to undergo surveillance.
2.
  • Carlsson, Christina, et al. (författare)
  • Benefits from membership in cancer patient associations: relations to gender and involvement.
  • 2006
  • Ingår i: Acta oncologica. - 0284-186X. ; 45:5, s. 559-563
  • Tidskriftsartikel (refereegranskat)abstract
    • Cancer patient associations report a growing number of members and increasing possibilities to influence health care, but knowledge about the members' views on the benefit of involvement is scarce. We therefore investigated how members (n = 1742) of Swedish patient associations for breast cancer and prostate cancer rate the benefit of membership for their physical and psychological well-being and social adjustment to cancer. Using a scoring scale, 2/3 of the members reported that membership had benefit for psychological well-being, whereas half of the members reported benefit for physical well-being and social adjustment. Individuals who had been actively involved in board work and/or contact person activities within the associations reported significantly more benefit for all three parameters. Gender differences were observed with men, represented by individuals affected by prostate cancer, reporting greater benefit for all three parameters, although especially evident for psychological well-being. Individuals who obtained membership within two years of diagnosis reported greater benefit for psychological well-being and social adjustment compared to those who became members later. In conclusion, members in patient associations for cancer report benefit particularly for their psychological well-being and actively involved members and men affected by prostate cancer perceive the greatest benefit from membership.
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3.
  • Carlsson, Christina, et al. (författare)
  • Captured voices in cancer: experiences from networking between individuals with experiential and professional knowledge.
  • 2007
  • Ingår i: BMC health services research. - 1472-6963. ; 7
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Patients needs and experiences attract increasing attention within health care. In order to generate knowledge about the voices that emerge from collaborative experiences between members of patient associations for cancer patients ( PACP) and health care professionals (HCPs), we studied a permanent network aimed at improving cancer care through increased attention to the cancer patients' view and experiences. Methods: Open-ended interviews were carried out with 16 individuals; 6 PACP members and 10 HCPs, and after transcription the texts were analysed by inductive content analysis. Results: Four voices, which represent various experiences from networking, were identified; the hesitant voice, the enlightened voice, the liberated voice, and the representative voice. The hesitant voice reflects uncertainty experienced when the participants were exposed to different views and opinions within the network. The enlightened voice reflects new points of view and gain of knowledge. The liberated voice signifies trust, balance, and confidence related to individual experiences and responsibilities being viewed in a broader perspective. The representative voice is derived from the transformation of experiences and responsibilities through insight, understanding, and new perspectives. Conclusion: Networking between representatives for PACPs and HCPs may help the participants manage uncertainty, strengthen the patient's perspective and provide new views on common issues. The different voices identified in this study demonstrate that both PACP members and HCPs distanced themselves from their individual experiences in order to be perceived as unselfish and knowledgeable within the network. Although the climate was characterized by trustfulness, the members' unique positions need to be defined in order to obtain an optimal balance between the groups and prevent members' patient experiences of losing their character by learning to much from the HCPs. Increased understanding of the hesitant, the enlightened, the liberated, and the representative voices, and awareness of experiential versus professional knowledge of cancer may facilitate and probably improve future networking efforts.
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5.
  • Carlsson, Christina, et al. (författare)
  • Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing.
  • 2007
  • Ingår i: Journal of Genetic Counseling. - Springer Netherlands. - 1059-7700. ; 16:6, s. 811-20
  • Tidskriftsartikel (refereegranskat)abstract
    • Hereditary non-polyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live in families with verified hereditary cancer. We conducted an interview study to explore experiences from and perceived impact on life after genetic testing for HNPCC. Three major themes emerged: reactions and emotions, family relations and implications for life. Among the reactions described were suspecting heredity, feelings of guilt, the importance of experiential knowledge, and coping strategies. The impact on family relations was related to perceived responsibility for conveying information, encountering different reactions among family members, and difficulties in communication and relations. The implications described included uncertainty, adaptation, new choices and changes in life, family planning issues, and experiences of surveillance programs. We suggest that the themes and sub-themes identified should be taken into account during genetic counselling in order to facilitate the spread of information and to prepare family members for the impact on life that knowledge about hereditary cancer may have.
6.
  • Carlsson, Christina, et al. (författare)
  • Patients' involvement in improving cancer care: experiences in three years of collaboration between members of patient associations and health care professionals.
  • 2006
  • Ingår i: Patient education and counseling. - 0738-3991. ; 61:1, s. 65-71
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectiveThe aim of this study was to explore how members of patient associations (PACPs) and health care professionals (HCPs) experience collaboration in a network initiated by the health care system and aimed at improving cancer care.MethodsThe participants were asked to describe, after 1 and 3 years, their experiences of collaboration. Data collected were in the form of a written answer to a single, open-ended question, and the answers were analysed using inductive content analysis.ResultsThe analysis revealed four themes: the impact of processes that occur within the network, the impact of learning, the impact of innovation and development in cancer care, and the impact of PACP members’ personal cancer experience. Statements about the impact of the processes that occur within the network dominated at both occasions.ConclusionThis study of experiences of collaboration provides new data on the importance ascribed to such efforts between patients in an organised association and HCPs.Practice implicationsWe suggest that differences in perceptions and expectations should be taken into account in future collaborations between representatives of patient associations and of health care systems in order to reach out and to influence developments in cancer care.
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7.
  • Carlsson, Christina, et al. (författare)
  • Supporter or obstructer; experiences from contact person activities among Swedish women with breast cancer.
  • 2005
  • Ingår i: BMC health services research. - 1472-6963. ; 5:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Swedish patient associations for breast cancer patients (PABCPs) offer patients with breast cancer unlimited meetings with a breast cancer survivor, a contact person (CP). We applied the voluntary action perspective in this interview study with members of Swedish PABCPs in order to explore how women with breast cancer experienced their contact with a CP from a PABCP.Methods: Audio-taped narratives from 8 women were analysed using Reissman's monitoring and Gee's analysis structure.Results: Three themes appeared: 1. Shared experiences give new perspectives on having cancer, 2. Feelings of isolation are a part of the identity of the illness and 3. Relations with others enable self-help. However, the relationship with the CP is sensitive to timing, correct information and understanding.Conclusions: CPs act as sounding boards and should optimally have capacity for listening, gives support and act as partner in this conversation. On the other hand, CPs should be aware that their presence and limited general medical knowledge could at times disturb the patient's psychological recovery and strengthen feelings of isolation. Thus, PABCPs must be careful in selecting CPs and offer relevant educational activities related to the themes identified herein.
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9.
  • Carneiro, Ana, et al. (författare)
  • Ezrin expression predicts local recurrence and development of metastases in soft tissue sarcomas.
  • 2011
  • Ingår i: Journal of clinical pathology. - 1472-4146. ; 64, s. 689-694
  • Tidskriftsartikel (refereegranskat)abstract
    • Background Ezrin is a cytoskeletal protein involved in tumour growth and invasion. Ezrin expression has been suggested to play a role in metastasis in paediatricosteosarcoma and rhabdomyosarcoma. Aim To evaluate the prognostic role of ezrin in a large series of soft tissue sarcoma of the extremities and trunk wall. Methods Ezrin expression was evaluated by immunohistochemistry on tissue microarrays from a mixed series of 256 soft tissue sarcomas. The expression patterns were correlated to local recurrence and metastasis as well as to established prognostic factors in soft tissue sarcoma. Results Increased ezrin expression predicted development of metastasis (HR=1.8, 95% CI 1.1 to 2.8; p=0.007) and local recurrence, also after adjustment for surgical margin (HR=2.4, 95% CI 1.4 to 4.3; p=0.02). Correlations to established prognostic factors showed strong associations between ezrin and necrosis (OR=3.9, p<0.0001) and ezrin and growth pattern (OR=3.1, p=0.03). Conclusions Ezrin independently predicts development of local recurrences and metastases in soft tissue sarcomas. The possibility of preoperative evaluation makes ezrin a potential marker for identification of high-risk sarcoma patients who would benefit from neoadjuvant therapy.
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10.
  • Carneiro, Ana, et al. (författare)
  • Genetic profiling - implications for refined diagnosis and treatment of soft tissue sarcomas
  • 2009
  • Ingår i: Acta Orthopaedica. - Informa Healthcare. - 1745-3674. ; 80, s. 15-23
  • Tidskriftsartikel (refereegranskat)abstract
    • Soft tissue sarcomas (STS) are challenging as they represent a morphologically and genetically heterogeneous groups of tumors. A multitude of genetic changes, often in the form of fusion genes, were recognized during the 1980's and now constitute a diagnostic lexicon in several STS subtypes, whereas many of the more common subtypes are genetically complex without distinct alterations. Refined STS management requires improved diagnostic reproducibility, novel prognosticators, and introduction of targeted therapies. In recent years, a number of genetic profiling studies - analyzing copy-number alterations as well as gene expression changes - have deepened our understanding of STS development through demonstration of recurrently deregulated tumorigenic pathways. The challenge is now to bring the genetic profiles into clinical decision-making. This review, in conjunction with the Scandinavian Sarcoma Group's (SSG) 30 years jubilee, discusses how the information from genetic profiling studies may be translated into clinical practice for refined diagnostics, prognostics, and treatment of STS.
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