Ann Karin Helgesen

Patient participation in special care units for persons with dementia: A losing principle?

The aim of this study was to explore the experience of nursing personnel with respect to patient participation in special care units for persons with dementia in nursing homes, with focus on everyday life. The study has an explorative grounded theory design. Eleven nursing personnel were interviewed twice. Patient participation is regarded as being grounded in the idea that being master of one’s own life is essential to the dignity and self-esteem of all people. Patient participation was described at different levels as letting the resident make their own decisions, adjusting the choices, making decisions on behalf of the residents and forcing the residents. The educational level and commitment of the nursing personnel and how often they were on duty impacted the level that each person applied, as did the ability of the residents to make decisions, and organizational conditions, such as care culture, leadership and number of personnel.

Relatives’ participation in everyday care in special care units for persons with dementia

Background: Research concerning relatives’ participation in the everyday care related to persons living in special care units for persons with dementia is limited. Research questions: To examine relatives’ participation in their near one’s everyday care, the level of burden experienced and important factors for participation, in this special context. Design: The study had a cross-sectional design, and data collection was carried out by means of a study-specific questionnaire. Participants and context: A total of 233 relatives from 23 different special care units participated. Ethical consideration: The study was approved by the Norwegian Social Science Data Services. Results: A great majority of relatives reported that they visited weekly and were the resident’s spokesperson, but seldom really participated in decisions concerning their everyday care. Participation was seldom reported as a burden. Discussion: This study indicated that relatives were able to make a difference to their near one’s everyday life and ensure quality of care based on their biographical expertise, intimate knowledge about and emotional bond with the resident. Since knowing the resident is a prerequisite for providing individualised care that is in line with the resident’s preferences, information concerning these issues is of utmost importance. Conclusion: This study prompts reflection about what it is to be a spokesperson and whether everyday care is neglected in this role. Even though relatives were satisfied with the care provided, half of them perceived their participation as crucial for the resident’s well-being. This indicated that relatives were able to offer important extras due to their biographical expertise, intimate knowledge about and emotional bond with the resident. Good routines securing that written information about the residents’ life history and preferences is available and used should be implemented in practice.

The use of life stories and its influence on persons with dementia, their relatives and staff – a systematic mixed studies review

BackgroundDementia is an important predictor of nursing home admissions. Due to progressive dementia symptoms, over time it becomes difficult for persons with dementia to communicate their wishes and participate in decisions concerning their everyday lives. Their well-being, sense of dignity, integrity and personhood are at risk. The persons’ life stories have been highlighted as particularly important in dementia care and are referred to as seeing the person beyond the dementia. The aim of this study was to explore and describe the use of life stories and its influence on persons with dementia living in nursing homes, their relatives and staff.MethodsA systematic mixed studies review was conducted. The literature searches were performed in the following databases: CINAHL, PubMed and PsycINFO and the Cochrane library, as well as by hand searching references in the studies included. An updated search was performed eight months after the first search. Data was synthesised inspired by integrative analysis.ResultsThree studies using quantitative design and two studies (presented in three papers) using qualitative design representing research from 2006 to 2015 were included in the review. Life stories generally had a positive influence on the persons with dementia, their relatives, and staff. The use of life stories might contribute to ‘Maintenance of the person with dementia as a whole person rather than a demented patient’. On the other hand, enabling persons with dementia to tell their own story could be a challenge. For the staff it could be challenging when sensitive information emerged uninvited. Involving relatives could also be difficult as to whose story were uncovered.ConclusionsThe use of person’s life story might be of significance, but there is not enough evidence to make any statement about its importance as the research is scarce. Studies, including randomised controlled trials, are needed to measure the impact of life story work on the physiological and psychological aspects of persons with dementia, and also how it influences their relatives and staff.

USER PARTICIPATION IN EVERYDAY DECISION-MAKING IN SPECIAL CARE UNITS FOR PERSONS WITH DEMENTIA

Statement of the Problem: In Belgium patients are free to choose their general practitioner. Moreover, this free choice remains after the transition to a residential care facility. Consequently, staffs have to corroborate with several physicians each having their procedures and habits. Since residential care facilities. Almost two third of 172 studied facilities indicate to deal with 11 to 30 general practitioners. The latter indicated the visit and care for older people in these facilities was not a priority, indicating a need for easy and accessible communication with the staff. The aim of this study was to obtain insight in the cooperation between nurses and general practitioners in residential care facilities.Statement of the Problem: Based on Self-Determination Theory (SDT; Deci & Ryan, 1985), autonomy support appears to be a key factor for patients in geriatric care services (GCS) for the satisfaction of the three basic psychological needs of autonomy, competence, and relatedness (Souesme et al., 2016). However, none studies have been conducted with healthcare professionals about “what elements might compose an autonomy-supportive environment?” That is why; it looked interesting to clarify the behaviors underlying an autonomy-supportive motivational style in GCS. Methodology & Theoretical Orientation: Four focus groups were used with a semi-structured guide (Patton, 2002) to explore the point of view of healthcare professionals about an autonomy-supportive environment. Twenty-six (n=26) professionals representing all professions working on GCS were recruited. Content qualitative analyses were performed using a software analysis (NVivo 10- QSR International). Findings: Unlike Reeve (1998), our results based on queries for text analysis highlighted three categories defining the notion of autonomy support in health context. Those categories point out well the importance of the social link between medical staff and patient through the “promotion of progress”, the importance of “establish a relationship of trust”, and the necessity to “encourage them to express themselves”. Conclusion & Significance: Our results demonstrate that the welcome are crucial to make the stay in GCS positive. Developing a partnership between patients and healthcare professionals could be a successful way to improve the stay in GCS, bring positive psychological and physical outcomes for elderly patients like a better adherence to treatment (Williams et al., 1998), and reduce re- hospitalization. We need now to further define the patient’s point of view of an autonomy-supportive environment in order to compare it with healthcare professional’s definition, underlying common and diverging points. This will allow us to make recommendations and propose a training session for professionals to adopt an autonomy-supportive motivational style.Statement of the Problem: Research to date indicates that most nursing homes offer various kinds of activities for their residents, but that these are seldom tailored to each individual person. In respect of activities, it is reasonable to assume that male residents are at particular risk of not receiving person-centred care as they inhabit a largely ‘female domain’, where the majority of personnel and often also of residents are female. Few studies to date have focused on activities for men in nursing homes. The purpose of this study was to explore male residents’ experiences of an activity program in a nursing home.

The personnel's experiences with the implementation of an activity program for men in municipal health services

ABSTRACT The aim of this study was to explore the personnels experiences with the implementation of an activity program for male residents in municipal care services. The design was inspired by a grounded theory approach. The data were collected by means of two focus group interviews with 11 participants in total. The findings showed that the personnel experienced that continuity was a prerequisite to being and remaining motivated when taking part in the activity program. Therefore, a lack of continuity was an obstacle. The categories ‘to be prepared’, ‘to be responsible for a sense of fellowship’, and ‘to gain new perspectives’ illuminate the personnels experiences. Different conditions had an impact on how the personnel experienced the implementation of the activity program and whether they stayed motivated for being a part of the program in the future. More attention should be given to ward routines that, with only minor changes, may strengthen the activity leader role.

«Du fungerer mer som et menneske.» Norske revmatikeres erfaringer med helse og dagligliv i Spania.

The objective of this study is to illuminate the experience of Norwegian rheumatics illness during long-term residency in Spain. The method chosen is qualitative with a phenomenological approach. Twelve rheumatics comprise the sample group, eight women and four men, ages from 45 to 70. Data collection was performed by qualitative research interview. The data is analyzed using condensation, followed by a thematic approach, inspired by Giorgis phenomenological method. The essence of the Norwegian rheumatics experience is that they recovered control over everyday life. They experienced pain relief, reduced medication and increased personal activity. The study indicates that long-term stay in Spain can promote health for people suffering weather-sensitive rheumatism.