Anna-Lisa Thorén-Jönsson

Making Sense of Living Under the Shadow of Death: Adjusting to a Recurrent Breast Cancer Illness

Women with recurrent breast cancer face many difficulties and challenges, from clinical symptoms of disease progression and treatment to a range of emotional responses. Guided by grounded theory methodology, we explored the main concerns of women with recurrent breast cancer, and how they were dealing with their situations. Data were collected from 40 in-depth interviews with 20 women diagnosed with recurrent breast cancer. The core category illustrated the process of “making sense of living under the shadow of death,” and was based on the womens experiences of adjusting to living with a persistent life-threatening illness. Confronting a recurrence of breast cancer was a life-altering event. Moving through a difficult and challenging time, women eased their distress by letting go of losses and reassessing important values. Through a personal transition women transcended living with a life-threatening illness. These findings emphasize the importance of recognizing existential distress in clinical practice.

DISABILITY IN A 4-YEAR FOLLOW-UP STUDY OF PEOPLE WITH POST- POLIO SYNDROME*

OBJECTIVE To evaluate changes over time in a clinically based cohort of individuals with post-polio syndrome. DESIGN A prospective longitudinal study. SUBJECTS A total of 106 individuals with poliomyelitis sequelae were included in the study. They were self-referred or had been referred to the post-polio clinic. After 4 years subjects were called for a follow-up and underwent the same measurements as at the initial assessment. METHODS The following measurements were conducted at both the initial assessment, and the follow-up: questionnaires including Nottingham Health Profile, muscle strength and walking speed. RESULTS Minor changes in disability during a 4-year period were shown. A significant reduction in muscle strength was only seen for 60 degrees flexion in the left leg and for right and left dorsal flexion. No change could be seen in the total Nottingham Health Profile score. CONCLUSION The minor changes in disability found in this study are an indication that we still do not know which subjects are at risk for deterioration. It is difficult to say whether the small changes over time shown in this study are associated with support from the polio clinic or are an expression of the natural history of the syndrome. However, it is hoped that support from the polio clinic may result in self-selected lifestyle changes, which may positively influence the development of symptoms and functional capacity.

How the Conception of Occupational Self Influences Everyday Life Strategies of People with Poliomyelitis Sequelae

Objective: The purpose of this qualitative study was to examine and describe the intentions and other factors influencing the development and choice of everyday life strategies by people with poliomyelitis sequelae. Method: Interviews with 22 persons with poliomyelitis sequelae, aged 40-66 years, were content-analysed, inspired by the coding processes in grounded theory. Results: The conception of occupational self in interaction with the environment emerged as a core category, comprising the categories body image, sense of competence and values and goals. Four subsidiary categories were identified: early experiences of trauma and early behaviours of others, conception of authorities responsible for welfare, conception of disability and conception of independence. Together, these categories formed a model of the development and choice of strategies. Conclusion: Although they were unique as individuals, subjects in this study provided valuable information about the ?conception of occupational self? of peop...

The Swedish Speech Interpretation Service: an exploratory study of a new communication support provided to people with aphasia.

Until recently, people with complex communication needs have had no access to professional interpreters. The Swedish Speech Interpretation Service (SSIS) is attempting to address this problem. This qualitative study reports on how 12 persons with aphasia experienced the services of a professional interpreter from the SSIS. The results are presented in two themes: (a) The purpose of using an interpreter, which addresses issues relating to autonomy, privacy, and burden on family members; and (b) perceptions of quality of service, which addresses issues relating to the skills and professionalism of and accessibility to interpreters. Results highlight the ongoing need for the SSIS and its importance to the participants. The professional interpreter as an augmentative and alternative communication (AAC) “tool” that could be used to enhance the participation of people with aphasia in the community-at-large, is also discussed; as is whether relatives and other non-professionals or professional interpreters should interpret for people with aphasia.

Changes in ability, perceived difficulty and use of assistive devices in everyday life: a 4-year follow-up study in people with late effects of polio.

Background –  There are numbers of persons living in the community with late effects of polio, of which many develop new symptoms, but the course of progression is unclear.

Processes influencing participation in the daily lives of immigrants living with polio in Sweden: A secondary analysis

ABSTRACT This paper explores and describes conditions influencing participation in daily occupations and how these interact with each other, in the daily lives of immigrants with late effects of polio. A secondary analysis of interviews with 12 immigrants from Eastern Africa now residing in Sweden was performed, using a grounded theory approach to probe deeper into the complexity of the concept of participation. This study highlighted that participation occurs through a participation process, which was identified as the core category. It emerged that participation took place through a complex dynamic interaction of subprocesses that contributed to value and identity development. The five subprocesses influencing participation in daily life were based on participants striving to achieve mastery of daily occupations, meaning in daily life, connection to places and people, belonging to groups, and trust of others. The findings indicate the need for awareness of the complexity, when conditions for participation are in question. With a deep understanding of participation as an interactional process with socioemotional meaning, both the individual and sociopolitical aspects of participation became evident. The intersection of disability and migration could lead to disadvantages and social exclusion within this population. These factors warrant consideration on an individual, a political and a social level. Politically, structures preventing and enabling participation must be considered. Similarly, attention must be paid to the social, and underlying conditions must be created in everyday meetings.

Struggling to be part of Swedish society: Strategies used by immigrants with late effects of polio

Abstract Objective: To explore and describe strategies in daily occupations among immigrants with late effects of polio. Method. The strategies were explored by interviews with 12 immigrants from Eastern Africa with late effects of polio. Sampling and data analysis was carried out according to grounded theory. Results: The participants struggled for occupational participation and normality in an effort to participate in, and be part of, society. The study identified 14 strategies used by the immigrants in their daily occupations. The strategies can be presented in the following four categories: managing physical capacity; promoting occupational performance; strategies for gaining respect; and preparing the ground for one’s existence. The participants struggled to find a balance between physical capacity and meaningful occupations, conception of their own and others’ norms and values, and living conditions in Swedish society. The strategies were related to the participants’ will to manage daily occupations, maintain social relationships, and be part of society. Conclusions: The strategies revealed that the participants strive to participate in occupations and society. This study reinforces the importance of occupation for immigrants with disability. The results highlight the need for adequate health care and rehabilitation but should also alert other social institutions.