| 1. |
- Backman, Ellen, MSc, 1981-
(author)
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Ordinary mealtimes under extraordinary circumstances : Routines and rituals of nutrition, feeding and eating in children with a gastrostomy and their families
- 2021
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Doctoral thesis (other academic/artistic)abstract
- The aim of this thesis is to explore routines and rituals related to feeding, eating, and mealtimes in families that have a child with a gastrostomy tube (G-tube), from the perspectives of healthcare professionals, the children, and their parents. The thesis is based on four empirical studies. Study I is a longitudinal, quantitative study with the aim to describe children with developmental or acquired disorders receiving a G-tube, and to compare characteristics, contacts with healthcare professionals, and longitudinal eating outcomes. Findings from Study I demonstrated that children with developmental disorders needed G-tube feeding for longer than children with acquired disorders. Children with developmental disorders were also younger at G-tube placement, and had more multidisciplinary healthcare. These findings led to the subsequent studies focused specifically on children with developmental disorders. Study II applies mixed methods and explores everyday life, health care, and intervention goals during the first year following G-tube placement through the documentation in medical records. In Studies III and IV, the experiences of family mealtimes for children with a G-tube and their parents are collected through individual interviews that are analysed qualitatively. Triangulation of methods, participants, researchers, and data across the four studies is applied to search for confirmation between findings, as well as to identify areas of discrepancy. Ecocultural theory, the WHO framework ICF, and the concept of participation form the conceptual framework of the thesis. Taken together, findings from the studies describe how the main experiences of feeding, eating, and mealtime relate to specific impairments of the child, the collective value attached to family mealtimes, and the parental responsibility to harmonise competing interests and conflicts among family members and/or healthcare professionals. This thesis extends previous research by focusing on the ecocultural context of the child in combination with a dimensional understanding of health. The findings shed light on measures taken by the families themselves to adjust to and handle their daily lives, as well as spell out areas where more support is needed. Furthermore, this thesis suggests that an expanded focus on children’s participation in everyday mealtimes, and in the healthcare follow-up of G-tube feeding, is important in enhancing intervention outcomes.
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| 2. |
- Gabrielsson, Hanna, 1977-, et al.
(author)
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Views on everyday life among adults with spina bifida : an exploration through photovoice
- 2020
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In: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 15:1
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Journal article (peer-reviewed)abstract
- The aim of this study was to actively integrate expertise of persons living with spina bifida, to explore conditions embedded in their everyday life. This was important because young adults with spina bifida risk not being able to fully participate in the community on equal terms and in accordance with their own preferences. Photovoice, a community-based participatory research approach, was utilized to engage participants through dialogue and photography. An exhibition was created to share results with community and stakeholders. An overarching theme that characterized the experiences of the group was, "an adaptation for us, but it works for no one". Findings are presented as: "Accessibility-a never-ending project," "Tensions of a normative view," and "Power to influence." Findings integrated everyday life metaphors photographically depicted by broken elevators, unsafe transportation, closed doors and not experiencing real opportunities of involvement. Tensions in everyday life experienced by persons living with spina bifida can inform conditions relevant and necessary to support community participation, particulary among persons living with disability.
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| 3. |
- Alevronta, Eleftheria, et al.
(author)
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Dose-response relationships of intestinal organs and excessive mucus discharge after gynaecological radiotherapy
- 2021
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In: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203 .- 1932-6203. ; 16:4 April
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Journal article (peer-reviewed)abstract
- Background The study aims to determine possible dose-volume response relationships between the rectum, sigmoid colon and small intestine and the ‘excessive mucus discharge’ syndrome after pelvic radiotherapy for gynaecological cancer. Methods and materials From a larger cohort, 98 gynaecological cancer survivors were included in this study. These survivors, who were followed for 2 to 14 years, received external beam radiation therapy but not brachytherapy and not did not have stoma. Thirteen of the 98 developed excessive mucus discharge syndrome. Three self-assessed symptoms were weighted together to produce a score interpreted as ‘excessive mucus discharge’ syndrome based on the factor loadings from factor analysis. The dose-volume histograms (DVHs) for rectum, sigmoid colon, small intestine for each survivor were exported from the treatment planning systems. The dose-volume response relationships for excessive mucus discharge and each organ at risk were estimated by fitting the data to the Probit, RS, LKB and gEUD models. Results The small intestine was found to have steep dose-response curves, having estimated dose-response parameters: γ : 1.28, 1.23, 1.32, D : 61.6, 63.1, 60.2 for Probit, RS and LKB respectively. The sigmoid colon (AUC: 0.68) and the small intestine (AUC: 0.65) had the highest AUC values. For the small intestine, the DVHs for survivors with and without excessive mucus discharge were well separated for low to intermediate doses; this was not true for the sigmoid colon. Based on all results, we interpret the results for the small intestine to reflect a relevant link. Conclusion An association was found between the mean dose to the small intestine and the occurrence of ‘excessive mucus discharge’. When trying to reduce and even eliminate the incidence of ‘excessive mucus discharge’, it would be useful and important to separately delineate the small intestine and implement the dose-response estimations reported in the study.
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| 4. |
- Bengtsson, Dennis, et al.
(author)
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Increased risk of child maltreatment and mental health problems among adolescents with restrictions regarding choice of future partner : Results from a Swedish school-based survey
- 2022
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In: Scandinavian Journal of Public Health. - London : SAGE Publications. - 1403-4948 .- 1651-1905. ; 50:8, s. 1133-1139
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Journal article (peer-reviewed)abstract
- Background: Honour-related violence and oppression is a violation of human rights and a public health problem. Oppressioncan be manifested by not being allowed to choose future partners and can increase the risk of abuse and mental healthproblems.Aims: The aim of this study was to investigate associations between restrictions regarding choice of future partner(RCP), child maltreatment and mental health problems among adolescents in Sweden.Methods: The study was based oncross-sectional data, including a nationally representative sample of 4741 pupils from grade nine in primary school and secondyear in high school. Pearson’s chi-square tests and binary logistical regression analyses adjusting for socio-demographicfactors were conducted.Results: RCP was significantly associated to child maltreatment, including poly-victimisation, andmental health problems. In the adjusted analysis, an increased risk for all types of maltreatment, poly-victimisation (adjustedodds ratio (aOR) 10.2, confidence interval (CI) 5.6–18.4), self-harm (aOR 1.9, CI 1.1–3.2) and suicide attempt (aOR 2.4,CI 1.3–4.7) were shown in adolescents exposed to RCP compared to non-exposed.Conclusions: There is an increasedrisk of child maltreatment including poly-victimisation and mental health problems among adolescents exposedto RCP compared to non-exposed. The study emphasizes the matter as a public health problem requiringimmediate preventive measures to ensure the rights of children and adolescents.
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| 5. |
- Bylund-Grenklo, Tove, et al.
(author)
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Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers
- 2021
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In: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20
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Journal article (peer-reviewed)abstract
- Background Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss. Methods We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression. Results Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent. Conclusion More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.
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| 6. |
- Lindblad, Marléne, 1963-, et al.
(author)
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Identifying no-harm incidents in home healthcare : a cohort study using trigger tool methodology
- 2020
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In: BMC Health Services Research. - : Springer. - 1472-6963. ; 20:1, s. 1-11
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Journal article (peer-reviewed)abstract
- BackgroundPatient safety in home healthcare is largely unexplored. No-harm incidents may give valuable information about risk areas and system failures as a source for proactive patient safety work. We hypothesized that it would be feasible to retrospectively identify no-harm incidents and thus aimed to explore the cumulative incidence, preventability, types, and potential contributing causes of no-harm incidents that affected adult patients admitted to home healthcare.MethodsA structured retrospective record review using a trigger tool designed for home healthcare. A random sample of 600 home healthcare records from ten different organizations across Sweden was reviewed.ResultsIn the study, 40,735 days were reviewed. In all, 313 no-harm incidents affected 177 (29.5%) patients; of these, 198 (63.2%) no-harm incidents, in 127 (21.2%) patients, were considered preventable. The most common no-harm incident types were “fall without harm,” “deficiencies in medication management,” and “moderate pain.” The type “deficiencies in medication management” was deemed to have a preventability rate twice as high as those of “fall without harm” and “moderate pain.” The most common potential contributing cause was “deficiencies in nursing care and treatment, i.e., delayed, erroneous, omitted or incomplete treatment or care.”ConclusionThis study suggests that it is feasible to identify no-harm incidents and potential contributing causes such as omission of care using record review with a trigger tool adapted to the context. No-harm incidents and potential contributing causes are valuable sources of knowledge for improving patient safety, as they highlight system failures and indicate risks before an adverse event reach the patient.
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| 7. |
- Engelbak Nielsen, Zandra, et al.
(author)
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Are cancer patients better off if they participate in clinical trials? : A mixed methods study
- 2020
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In: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407 .- 1471-2407. ; 20:1
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Journal article (peer-reviewed)abstract
- BackgroundResearch and cancer care are closely intertwined; however, it is not clear whether physicians and nurses believe that clinical trials offer the best treatment for patients and, if so, whether this belief is justified. The aim of this study was therefore: (i) to explore how physicians and nurses perceive the benefits of clinical trial participation compared with standard care and (ii) whether it is justified to claim that clinical trial participation improves outcomes for cancer patients.MethodsA mixed methods approach was used employing semi-structured interviews with 57 physicians and nurses in oncology and haematology and a literature review of the evidence for trial superiority, i.e. the idea that receiving treatment in a clinical trial leads to a better outcome compared with standard care. Inductive thematic analysis was used to examine the interview data. A literature review comprising nine articles was conducted according to a conceptual framework developed by Peppercorn et al. and evaluated recent evidence on trial superiority.ResultsOur findings show that many physicians and nurses make claims supporting trial superiority, however very little evidence is available in the literature comparing outcomes for trial participants and non-participants that supports their assertions.ConclusionsDespite the recent rapid development and use of targeted therapy and immunotherapy, we find no support for trial participation to provide better outcomes for cancer patients than standard care. Hence, our present results are in line with previous results from Peppercorn et al. A weaker version of the superiority claim is that even if a trial does not bring about a direct positive effect, it brings about indirect positive effects. However, as the value of such indirect effects is dependent on the individual’s specific circumstances and preferences, their existence cannot establish the general claim that treatment in trials is superior. Belief in trial superiority is therefore unfounded. Hence, if such beliefs are communicated to patients in a trial recruitment context, it would provide misleading information. Instead emphasis should be on patients volunteering to give an altruistic contribution to the furthering of knowledge and to the potential benefit of future patients.
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| 8. |
- Klarare, Anna, et al.
(author)
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Leadership in specialist palliative home care teams : A qualitative study
- 2020
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In: Journal of Nursing Management. - : Hindawi Limited. - 0966-0429 .- 1365-2834. ; 28:1, s. 102-111
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Journal article (peer-reviewed)abstract
- AimThe aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.BackgroundFor effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.MethodsQualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.ResultsTeam leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.ConclusionTeam leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.Implications for Nursing ManagementTeam leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.
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| 9. |
- Backman, Ellen, 1981-, et al.
(author)
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Documentation of everyday life and health care following gastrostomy tube placement in children : a content analysis of medical records
- 2020
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In: Disability and Rehabilitation. - Abingdon : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 42:19, s. 2747-2757
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Journal article (peer-reviewed)abstract
- BACKGROUND: Everyday routines play a vital role in child functioning and development. This study explored health professionals' documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.METHODS: The medical records of 39 children (median age 38 months, min-max: 15-192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.RESULTS: One overall theme, "Seeking a balance", captured the view of life with a gastrostomy and the health care provided. Two categories, "Striving for physical health" and "Depicting everyday life" with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component "Body functions".CONCLUSIONS: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy. Implications for Rehabilitation There is a need for increased awareness in healthcare professionals for a more consistent and holistic healthcare approach in the management of children with gastrostomy tube feeding. This study suggests that an expanded focus on children's participation in everyday mealtimes and in the healthcare follow-up of gastrostomy tube feeding is important in enhancing the intervention outcome. Multidisciplinary teams with a shared bio-psycho-social understanding of health would contribute to a situation in which the everyday lives of households adapt to living with gastrostomy. Routine care for children with gastrostomy should follow a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions in order to achieve a successful gastrostomy tube feeding intervention.
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| 10. |
- Mattsson, Elisabet, 1959-, et al.
(author)
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Perceptions of care after end-of-treatment among younger women with different gynecologic cancer diagnoses : a qualitative analysis of written responses submitted via a survey
- 2020
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In: BMC Women's Health. - : Springer Science and Business Media LLC. - 1472-6874. ; 20:1
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Journal article (peer-reviewed)abstract
- BackgroundLess attention has been given to younger adults’ psycho-oncology care needs than to children and older adults with cancer. The aim was to explore how care following end-of-treatment was perceived by women treated for different gynecologic cancer diagnoses during younger adulthood.MethodsA sample of 207 women diagnosed with gynecologic cancer 2008 to 2016, aged 19–39 at time of diagnosis answered one open-ended question regarding important aspects of care after end-of-treatment. The written responses were analyzed with manifest content analysis and presented in relation to the women’s diagnoses, i.e., cervical (n = 130), ovarian (n = 57), and other gynecologic cancer diagnoses (n = 20).ResultsThe analysis resulted in three categories: Unmet long-term supportive care needs, Satisfying long-term supportive care, and Health care organizational difficulties. Over half of the women (66.7%) described unmet care needs. The corresponding figures were 80.7, 63.1 and 50% for women diagnosed with ovarian, cervical and other gynecologic cancer diagnoses, respectively. Satisfying supportive care were described by approximately one quarter of the women (26.1%). Among women diagnosed with ovarian cancer 14% described satisfying supportive care. The corresponding figures were 26.9 and 30% for women diagnosed with cervical cancer and other gynecological diagnoses, respectively. Approximately one quarter of the women, irrespectively of diagnosis, described aspects related to health care organizational difficulties (28%).ConclusionsThe results highlight the importance of good quality care linked to the diagnosis and based on an understanding of the woman’s need, desire and expectation of support after end-of-treatment.
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