| 1. |
- Holmgren, Jessica, et al.
(författare)
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Being perceived as a ‘visitor’ in the nursing staff’s working arena : the involvement of relatives in daily caring activities in nursing homes in an urban community in Sweden
- 2013
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Ingår i: Scandinavian Journal of Caring Sciences. - Oxford : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 27:3, s. 677-685
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundIt is both complex and difficult for relatives when a loved one moves into a nursing home and many relatives are not prepared for the realities these new situations entail. Little attention has been paid to scrutinising the involvement of relatives in patient care, particularly in relation to the structures and routines of nursing homes or to the staff's reasoning concerning their involvement.AimTo describe, from a gender perspective, how nursing staff's routines and reasoning act to condition the involvement of relatives in nursing homes.MethodsFocused ethnographic fieldwork was conducted in a medium-sized urban community in central Sweden in three different nursing homes.ResultsThe nursing staff assigns a certain code of conduct to all relatives they perceived as ‘visitors’ in their working arena. This code of conduct was related to the routines and subcultures existing among the nursing staff and stemmed from a division of labour; the underlying concept of ‘visitor’ predetermined the potential for relatives' involvement. This involvement is explicitly related to the general gendered characteristics that exist in the nursing staff's perception of the relatives.DiscussionThe study's limitations are primarily concerned with shortcomings associated with a research presence during the fieldwork. The discussion focuses on the dimensions of power structures observed in the nursing home routines and the staff's reasoning based on their gendered assumptions. We argue that it is important to develop mechanisms that provide opportunities for nursing staff in elderly care to reflect on these structures without downplaying the excellent care they provide. We stress the importance of further exploring these issues concerning relatives and their involvement in nursing homes to facilitate the transition from informal caregiver to ‘visitor’.
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| 2. |
- Holmgren, Jessica, associate professor, senior lecturer
(författare)
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Conditions for relatives' involvement in nursing homes
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to describe and analyse how the involvement of relatives is conditioned in nursing homes from different critical perspectives. Gender perspectives, discourse analysis and intersectional theory are applied, based on social constructionist ontology. The thesis comprises three qualitative papers and data are based on ethnographically-focused fieldwork in three municipal nursing homes in the form of formal/informal interviews, participating observations and the analysis of documents.Based on gender perspectives, the routines and reasonings among nursing staff were studied and thematically analysed in relation to how these conditioned the involvement of relatives in the daily caring activities (I). In the second study (II), the nursing staff were interviewed in groups to describe, discursively analyse and identify the biopolitical meaning in the "involvement discourse" that was collectively constructed in the speech of the nursing staff concerning the involvement of relatives. In the last study (III), interviews with relatives were thematically analysed in the context of intersectional theory about their involvement in the nursing homes.The findings show that the conditions for relatives’ involvement were dynamic and constantly in re-negotiation, but also conservative and inflexible. This placed relatives in both privileged and unprivileged social positions in the nursing homes, which were relevant for their involvement. The relatives were considered to be "visitors", which conditioned the characteristics and levels of involvement in the care of the residents and was linked to gendered notions of the division of labor, both within the groups of relatives and between nursing staff and relatives (I). The involvement of relatives was conditioned by the biopolitics of an "involvement discourse" that prevailed in the nursing homes. This built upon family-oriented rhetorics and metaphors that upheld and legitimised notions about relatives. The relatives were considered to be members of the "old" family in relation to the "new" family represented by the nursing staff (II). The relatives described how they were positioned in a betweenship, squeezed between different competing social musts from the older family members, the nursing homes as institutions and the nursing staff (III).Inverting the prevailing picture of the involvement of relatives would make it possible to consider the nursing staff as pedagogical, professional and caring "visitors" in the nursing homes for the benefit of the residents and their relatives. This could be achieved through a constructive change management which emphasises the learning of nursing staff, their responsibility and the emotions of relatives, along with a focus on alternative notions of involvement, where relatives are included in the development of quality of care in Swedish nursing homes.
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| 3. |
- Holmgren, Jessica, et al.
(författare)
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Intersectional perspectives on family involvement in nursing home care : rethinking relatives' position as a betweenship
- 2014
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Ingår i: Nursing Inquiry. - : John Wiley & Sons. - 1320-7881 .- 1440-1800. ; 21:3, s. 227-237
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Tidskriftsartikel (refereegranskat)abstract
- This study seeks to understand, in the context of intersectional theory, the roles of family members in nursing home care. The unique social locus at which each person sits is the result of the intersection of gender, status, ethnicity and class; it is situational, shifting with the context of every encounter. A content analysis of 15 qualitative interviews with relatives of nursing home residents in Sweden was used to gain a perspective on the relationships between relatives and residents, relatives and the nursing home as an institution, and relatives and the nursing home staff. We sought to understand these relationships in terms of gendered notions of the family and the residents, which are handed down from generation to generation and thus condition who and how relatives should be involved in care, and the ways in which relationships change as care moves from home to nursing home. It requires knowledge and awareness that the nursing home culture is based on intersectional power structures in order for relatives to be involved in nursing home care in alternative and individual ways.
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| 4. |
- Holmgren, Jessica, et al.
(författare)
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Replicating the Family : The Biopolitics of Involvement Discourses Concerning Relatives in Nursing Home Institutions
- 2014
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Ingår i: Aporia. - : Brigham Young University. - 1918-1345. ; 6:4, s. 19-29
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe the biopolitics of involvement discourses articulated by nursing staff concerning relatives in nursing home institutions, using a Foucault-inspired discourse analytical approach. Previous research has described how relatives have not been involved in nursing homes on their own terms. This is partly due to a lack of communication and knowledge, but it is also a consequence of an unclear organizational structure. Results from a discourse analysis of six focus group interviews with nursing staff show that the "involvement discourse" in nursing homes can be described as a "new" vs "old" family rhetoric. This rhetoric can be said to uphold, legitimize and provide different subject positions for both nursing staff and relatives concerning the conditions for involvement in nursing homes. As part of a "project of possibility" in elderly care, it may be possible to adopt a critical pedagogical approach among nursing staff in order to educate, strengthen and support them in reflecting on their professional norming and how it conditions the involvement of relatives.
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| 5. |
- George-Svahn, Lisa, et al.
(författare)
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Barriers to HIV testing as reported by individuals newly diagnosed with HIV infection in Sweden
- 2021
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Ingår i: AIDS Care. - : Taylor & Francis. - 0954-0121 .- 1360-0451. ; 33:10, s. 1286-1295
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Tidskriftsartikel (refereegranskat)abstract
- Despite the availability of free and anonymous HIV testing almost 60% of Swedish patients are diagnosed late. Identifying predictors of different types of barriers could inform policy makers and health care of interventions to increase testing where needed. This cross-sectional study aimed to describe and analyze barriers to HIV testing as reported by Swedish patients newly diagnosed with HIV infection. N = 285 patients completed the 18-item Barriers to HIV Testing Scale - Karolinska Version. Descriptive analysis and logistic regressions were performed to assess the prevalence of barriers and to identify predictors for the different investigated barriers. Barriers to testing were reported by 60%. Approximately 67% of patients originating from Sweden, 50% from Sub-Saharan Africa and 75% from Eastern European/East Asian countries reported barriers. Patients who were younger and patients who self-initiated HIV testing, had greater odds of reporting a barrier than older individuals and those who were offered a test through screening or by a healthcare professional. To counteract barriers that still exist on an individual level, healthcare-initiated HIV testing could be offered more broadly and information about risks for transmission and effectiveness of HIV treatment still needs to be disseminated among both people born in Sweden and different migrant groups.
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| 6. |
- Mazaheri, Monir, et al.
(författare)
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Experiences of dementia in a foreign country : qualitative content analysis of interviews with people with dementia
- 2014
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Ingår i: BMC Public Health. - : BioMed Central. - 1471-2458. ; 14, s. 794-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Dementia is a worldwide health concern of epidemic proportions. Research in the field of subjective experience of dementia suffers from a lack of diversity of their participants including immigrants. Different portraits of life with dementia could help us understand how people with dementia conceptualise their experiences of dementia and how they live. Our study aimed to explore the subjective experiences of living with dementia among Iranian immigrants in Sweden.Methods: Qualitative content analysis of interviews with fifteen people with dementia from Iranian immigrant backgrounds were conducted (8 females and 7 males).Results: Three themes and seven associated sub-themes were revealed. The themes included: Being a person with dementia means living with forgetfulness (personal sphere), living with forgetfulness in the private sphere means feeling incompetent but still loved, living with forgetfulness in the public sphere means feeling confident and secure but also isolated.Conclusions: Living with dementia for the participants meant living with forgetfulness. They experienced feeling incompetent but still loved within their families and feeling confident and secure but also isolated in the society. Educating people with dementia and their families about the course and process of dementia may help them understand the changes better and adjust their expectations. Our study can provide a basis for healthcare workers to understand the experiences of living with dementia from this specific perspective.
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| 7. |
- Mazaheri, Monir, et al.
(författare)
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Experiences of living with dementia : qualitative content analysis of semi-structured interviews
- 2013
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 22:21-22, s. 3032-3041
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives To describe people's experiences of living with dementia in Iran. BackgroundA knowledge gap exists regarding the experiences of living with dementia in nonWestern contexts. This gap may be especially apparent within the Iranian context, where dementia research is relatively new. Deeper understanding about context-related experiences of dementia is a prerequisite for nurses' ability to provide adequate and meaningful care. DesignQualitative, cross-sectional design. MethodsQualitative content analysis of semi-structured interviews with people living with dementia in urban Iran (six women and nine men; 60-87years old). ResultsThe participants experienced their condition as a state of forgetfulness that was accompanied by losses and dependency on others. They wanted to feel good about themselves and feel important, but they continually struggled with matters such as a loss of accountability, feelings of futility and the frustration of others. Economic dependency and a lack of economic resources were sources of feelings of futility. ConclusionExperiences of living with dementia in Iran included a substantial struggle to stay connected to the social world and to deal with dramatic life changes, aspects of living with dementia that seem to be universal. However, the feelings of financial burden and the experience of being nagged for their shortfalls by family members have seldom been described in other studies and seem to represent a cultural aspect of their experience. Relevance to clinical practiceThe results of the study call for further nursing efforts in supporting people living with dementia in their struggle with their altered lives and in retaining their connections to everyday life. Furthermore, their family members might benefit from specific nursing interventions including information about dementia and advice on how to help the family members with dementia to interact with others while exercising their individual strengths.
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| 8. |
- Prignitz Sluys, Kerstin, 1956-, et al.
(författare)
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Six years beyond pediatric trauma : child and parental ratings of children’s health-related quality of life in relation to parental mental health
- 2015
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Ingår i: Quality of Life Research. - : Springer Netherlands. - 0962-9343 .- 1573-2649. ; 24:11, s. 2689-2699
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Tidskriftsartikel (refereegranskat)abstract
- PurposeTo examine the relationship between child self-report and parent proxy report of health-related quality of life (HRQL) and how parents’ mental health status relates to the HRQL ratings 6 years after minor to severe injury of the child.Materials and methodsThis cross-sectional cohort study was performed at a regional pediatric trauma center in Stockholm, Sweden. The PedsQL 4.0 versions for ages 5–7, 8–12, and 13–18 years were completed by 177 child–parent dyads 6 years after injury to the child. The parents also rated their own mental health through the mental health domain (MH) in the SF-36 Health Survey.ResultsThe children’s median age was 13 years (IQR 10–16 years), 54 % were males, and the median ISS was 5 (IQR 2–9). Most of the parents were female (77 %), born in Sweden (79 %), and half had university degrees. There was no statistically significant difference between child self-report and parent proxy report in any of the PedsQL 4.0 scales or summary scales. The levels of agreement between child self-report and parent proxy reports were excellent (ICC ≥ 0.80) for all scales with the exception of emotional functioning (ICC 0.53) which also was the scale with the lowest internal consistency in child self-report (α 0.60). Multiple regression analyses showed that worse parental mental health status correlated with worse child self-report and parent proxy report of children’s HRQL.ConclusionsChildren and their parents’ reports on child’s HRQL were in agreement. Decreased mental health in parents was associated with lower scores on parent proxy reports and child self-reports of HRQL after injury. The current investigation highlights the possible relationship between parent’s mental health status and children’s HRQL long after an injury, which should be considered in future investigations and in clinical care.
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| 9. |
- Sluys, Kerstin, 1956-
(författare)
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Adult and pediatric trauma : outcomes and health-related quality of life
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Trauma is the number one killer of children and young adults and the most common cause for hospital admissions for these age-groups in Sweden. Trauma is also one of the most common causes for hospital care and early death for older people. In the last decades trauma care has advanced and improved short-term survival of injured but knowledge of the long-term outcome is limited.The overall aim of this thesis is to investigate long-term outcome and health-related quality of life after injuries in different age groups and to identify factors associated with outcome.Methods: The thesis is based on four studies. In the first study patients with major trauma were contacted 5 years after injury and HRQL was measures using the SF-36 questionnaire and compared to an age and sex-matched reference group. In the second study data was collected on children with injuries to describe demographic and injury characteristics and outcome. The sample in the second study was the source for the third and fourth study. The third study measured HRQL using the PedsQL 4.0 in a cohort of children 6 years after injury and determined the relationship within subgroups in the cohort. The fourth study measured child HRQL in a sample of children after injury and their parent´s and determined the relationship within scoring results and the impact of parents reported mental health status.Results: The adult major trauma patients (n=205) reported significantly lower HRQL scores in all eight domains compared to the reference group. A large number of patients suffered from physical (68%) and psychological disabilities (41%) and nearly half reported the need for better follow-up after discharge from hospital. The severity of the injury did not anticipate a lower health-related quality of life. In the pediatric group (n=432) the median injury severity score was 4 (IQR 1-9), 50% sustained head injuries and the most severe head injuries were seen in the youngest age group. Mortality rate was low (1%), 19% stayed in a PICU and the median length of hospital stay was two days. In the follow-up study (n=204) the youngest children had the lowest PedsQL scores. Children who suffered from extremity injuries had lower scores in the school functioning compared to children with head injuries. The levels of agreement between child self-report and parent proxy report of PedsQL 4.0 scales were excellent (ICC≥0.80) for all scales with the exception of children´s self-reported emotional functioning. Multiple regression analyses showed that poor parental mental health status contributed to worse child self-report and parent proxy report of children´s HRQL.Conclusion: Adult major trauma patients have significant disabilities 5 years after injury. Improved follow-up by trauma specialist teams are needed. Children´s HRQL 6 years after trauma seems to in parity or better than healthy peers. Parent´s mental health status can possibly impact on children´s HRQL long after an injury. Further studies are recommended to evaluate the PedsQL 4.0versions for self-report in pediatric trauma population.
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| 10. |
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