| 1. |
- Björklund, Margereth, 1950-, et al.
(författare)
-
Living with head and neck cancer : a profile of captivity
- 2010
-
Ingår i: Journal of Nursing and Healthcare of Chronic Illness. - : Wiley. - 1752-9816 .- 1752-9824. ; 2:1, s. 22-31
-
Tidskriftsartikel (refereegranskat)abstract
- Aim. To illuminate what it means to live with head and neck cancer.Background. Patients could experience head and neck cancer as more emotionally traumatic than other cancers because of visible disfigurement and its life-threatening impact on vital functions. This long-term illness often leads to lifestyle changes such as to physical function, work and everyday tasks, interpersonal relationships and social functioning.Design. This study used a qualitative and explorative longitudinal and prospective design with semi-structured interviews and open-ended questions. Twenty-one interviews were conducted with six participants with newly diagnosed or newly recurrent head and neck cancer. The analysis was descriptive and interpretive.Findings. The participants were living 'in captivity' in the sense that their symptoms were constant reminders of the disease. Our findings also revealed existential loneliness and spiritual growth, as interpreted within six themes: altered sense of affiliation; hostage of health care; locked up in a broken body, but with a free spirit; confined in a rogue body, forced dependency on others, and caught up in a permanent illness trajectory.Conclusions. Living with head and neck cancer involves emotional and existential vulnerability. The participants and their next of kin experienced insufficient support from health services and inadequate coordination between phases of their lengthy illness trajectory. These findings call for changes in oncological rehabilitation and management. Patient care must take a holistic view of everyone involved, centring on the individual and the promotion of health. A care coordinator could navigate between the individual patient needs and appropriate health services, hopefully with results that lessen the individual's emotional and existential confinement.
|
|
| 2. |
- Petersson, Pia, 1961-
(författare)
-
Att göra abstrakta begrepp och komplexa situationer konkreta : en avhandling om deltagarbaserad aktionsforskning i svensk vård och omsorg
- 2009
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This dissertation covers the subject of how abstract concepts and complex situations can be concretized through research together with practitioners. The dissertation is based on four empirical studies. The researcher role, the practitioner participation and the methods for data collection and analysis have varied. In study I the concept ‘Närsjukvård’ was explored to understand how practitioners, managers and politicians in hospitals, primary health care and municipalities interpreted the concept. The researcher acted as consultant who collected data by interviews and questionnaires. Practitioners’ participation was limited. ‘Närsjukvård’ was interpreted as accessibility to hospital beds, accessibility to primary health care, collaboration between care providers and continuity and developed home care. Study II aimed to explore how people experienced leg ulcer care. The researcher acted as a consultant who performed the interviews and analysed the data. Although the informants experienced their encounters with the nurses as satisfying, the study illuminated low participation in the care and low practitioner involvement in issues about daily living with the leg ulcer. The findings were brought back to the informants and the practitioners. The project did not proceed towards development and change. In study III the aim was to explore the Swedish concept ‘trygghet’ by using stories from daily life. Four older women were interviewed and the Story Dialogue method was used together with assistant nurses and registered nurses who participated in data collection and analysis. Two themes emerged: Sense of Security and factors strengthening the Sense of Security. Together with the assistant nurses, areas for improvements were identified. Study IV aimed to explore the discharge planning situation in order to generate ideas for development. Members from a discharge planning network participated in the whole research process. Conditions for a successful coordinated discharge planning situation were a system including: the participation of the patient, the competence of the staff and the support from the organisation. The group arranged a workshop about communication and interdisciplinary collaboration. The findings resulted in a form with self-evaluation questions. In conclusion, this thesis illustrates that it is possible to clarify abstract concepts and complex situations together with practitioners. To do this successfully, sense making activities and to start from practitioners’ experiences and their own context are key factors. The studies illuminate that building trust, relationship and sense of participation are essential in health and social care in general and specifically in the participatory action research process.
|
|
| 3. |
- Petersson, Pia, 1961-, et al.
(författare)
-
Telling stories from everyday practice, an opportunity to see a bigger picture : a participatory action research project about developing discharge planning
- 2009
-
Ingår i: Health and Social Care in Community. - Oxford : Blackwell Science. - 1365-2524 .- 0966-0410. ; 17:6, s. 548-556
-
Tidskriftsartikel (refereegranskat)abstract
- In spite of laws, rules and routines, findings from Swedish as well as international research show that discharge planning is not a simple matter. There is considerable knowledge about discharge planning but the quality of the actual process in practice remains poor. With this in mind, a research and developmental (R & D) health and social care network decided to use Participation Action Research (PAR) to explore the discharge planning situation in order to generate new ideas for development. This paper reports on the research process and the findings about our enhanced understanding about the discharge planning situation. Story Dialogue Method was used as a method. The method is based on stories from everyday practice. The stories are used as ‘triggers’ to ask probing questions in a dialogical and structured form. Local theory is developed to help the participants to find solutions for action in the practice. Our findings were that the discharge planning situation could be seen as a system including three interconnected areas: patient participation, practitioners’ competence and organisational support. To reach good quality in discharge planning all this three issues need to be developed, but not only as routines and forms. Rather, when developing a discharge planning situation a system where relational aspects such as confidence and continuity are essential and thus needs to be considered. To achieve a change the core problem needs to be clarified. When the issue is complex the solution needs to consider the bigger picture and not just the parts. Telling stories from everyday practice and to systematically reflect and analyse those in inter-professional groups can create opportunities for enhanced understanding as well as be a vehicle for future change of practice.
|
|
