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1.
  • Eilertsen, M. E. B., et al. (författare)
  • Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up
  • 2013
  • Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 301-310
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.
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2.
  • Westgård, Theresa, et al. (författare)
  • Comprehensive geriatric assessment pilot of a randomized control study in a Swedish acute hospital : a feasibility study
  • 2018
  • Ingår i: Pilot and Feasibility Studies. - : Springer Science and Business Media LLC. - 2055-5784. ; 4
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Comprehensive geriatric assessment (CGA) represent an important component of geriatric acute hospital care for frail older people, secured by a multidisciplinary team who addresses the multiple needs of physical health, functional ability, psychological state, cognition and social status. The primary objective of the pilot study was to determine feasibility for recruitment and retention rates. Secondary objectives were to establish proof of principle that CGA has the potential to increase patient safety.Methods: The CGA pilot took place at a University hospital in Western Sweden, from March to November 2016, with data analyses in March 2017. Participants were frail people aged 75 and older, who required an acute admission to hospital. Participants were recruited and randomized in the emergency room. The intervention group received CGA, a person-centered multidisciplinary team addressing health, participation, and safety. The control group received usual care. The main objective measured the recruitment procedure and retention rates. Secondary objectives were also collected regarding services received on the ward including discharge plan, care plan meeting and hospital risk assessments including risk for falls, nutrition, decubitus ulcers, and activities of daily living status.Result: Participants were recruited from the emergency department, over 32 weeks. Thirty participants were approached and 100% (30/30) were included and randomized, and 100% (30/30) met the inclusion criteria. Sixteen participants were included in the intervention and 14 participants were included in the control. At baseline, 100% (16/16) intervention and 100% (14/14) control completed the data collection. A positive propensity towards the secondary objectives for the intervention was also evidenced, as this group received more care assessments. There was an average difference between the intervention and control in occupational therapy assessment - 0.80 [95% CI 1.06, - 0.57], occupational therapy assistive devices - 0.73 [95% CI 1.00, - 0.47], discharge planning -0.21 [95% CI 0.43, 0.00] and care planning meeting 0.36 [95% CI-1.70, -0.02]. Controlling for documented risk assessments, the intervention had for falls - 0.94 [95% CI 1.08, - 0.08], nutrition - 0.87 [95% CI 1.06, - 0.67], decubitus ulcers - 0.94 [95% CI 1.08, - 0.80], and ADL status - 0.80 [95% CI 1.04, - 0.57].Conclusion: The CGA pilot was feasible and proof that the intervention increased safety justifies carrying forward to a large-scale study.Trial registration: Clinical Trials ID: NCT02773914. Registered 16 May 2016.
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3.
  • Lind, Susanne, et al. (författare)
  • Implementation of the integrated palliative care outcome scale in acute care settings - a feasibility study
  • 2018
  • Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:6, s. 698-705
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.Method: A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.Result: Factors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers' involvement in the implementation differed between the units.Significance of the results: The feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.
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4.
  • Gerdle, Björn, et al. (författare)
  • Who benefits from multimodal rehabilitation - an exploration of pain, psychological distress, and life impacts in over 35,000 chronic pain patients identified in the Swedish Quality Registry for Pain Rehabilitation
  • 2019
  • Ingår i: Journal of Pain Research. - : DOVE Medical Press Ltd.. - 1178-7090. ; 12, s. 891-908
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Chronic pain patients frequently suffer from psychological symptoms. There is no consensus concerning the prevalence of severe anxiety and depressive symptoms and the strength of the associations between pain intensity and psychological distress. Although an important aspect of the clinical picture is understanding how the pain condition impacts life, little is known about the relative importance of pain and psychological symptoms for individual's life impact. The aims of this study were to identify subgroups of pain patients; to analyze if pain, psychological distress, and life impact variables influence subgrouping; and to investigate how patients in the subgroups benefit from treatments.Methods: Background variables, pain aspects (intensity/severity and spreading), psychological distress (depressive and anxiety symptoms), and two life impact variables (pain interference and perceived life control) were obtained from the Swedish Quality Registry for Pain Rehabilitation for chronic pain patients and analyzed mainly using advanced multivariate methods.Results: Based on >35,000 patients, 35%-40% had severe anxiety or depressive symptoms. Severe psychological distress was associated with being born outside Europe (21%-24% vs 6%-8% in the category without psychological distress) and low education level (20.7%-20.8% vs 26%-27% in the category without psychological distress). Dose relationships existed between the two psychological distress variables and pain aspects, but the explained variances were generally low. Pain intensity/severity and the two psychological distress variables were significantly associated (R2=0.40-0.48; P>0.001) with the two life impact variables (pain interference and life control). Two subgroups of patients were identified at baseline (subgroup 1: n=15,901-16,119; subgroup 2: n=20,690-20,981) and the subgroup with the worst situation regarding all variables participated less in an MMRP (51% vs 58%, P<0.001) but showed the largest improvements in outcomes.Conclusion: The results emphasize the need to assess both pain and psychological distress and not take for granted that pain involves high psychological stress in the individual case. Not all patients benefit from MMRP. A better matching between common clinical pictures and the content of MMRPs may help improve results. We only partly found support for treatment resistance in patients with psychological distress burden.
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5.
  • Wallin Ahlström, Sara, et al. (författare)
  • The experiences and the meaning of using MyTime in the preschool context from the perspective of children in need of special support, 5-6 years of age
  • 2023
  • Ingår i: Child Care Health and Development. - : Wiley-Blackwell. - 0305-1862 .- 1365-2214. ; 49:6, s. 1096-1103
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Children in need of special support often display delays in time processing ability, affecting everyday functioning. MyTime is an intervention programme for systematic training of time processing ability. To support preschool children's development of time processing ability and everyday functioning, it is necessary to include their perspectives of the MyTime intervention programme. A previous study shows that MyTime is feasible with children in the preschool setting and shows positive effects on time processing ability for older children in special schools. Yet, there is a lack of knowledge regarding how preschool children experience the intervention programme and how they understand its meaning. The aim of this study was to explore the experiences and the meaning of using MyTime from the perspective of children with informal needs of special support (INS) 5-6 years of age in the preschool context.METHODS: To explore the children's perspectives, video-recorded interviews with 21 children were analysed hermeneutically. To facilitate the interview situation with the children in need of special support, the Talking Mats© was used. Both body and spoken languages were analysed.RESULTS: The results reveal children as active participants, willing to share their experiences of using the MyTime intervention in the preschool context. The conceptualization of the children's experiences and expressions uncovers their meaning of using the MyTime intervention as to know and to understand time by doing.CONCLUSIONS: When children are given the opportunity to use concrete tools to understand and measure time, they experience themselves as active participants involved and engaged in the intervention. They reveal meaningful experiences to be able to manage time that facilitate their everyday functioning and participation in the preschool context.
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6.
  • Grim, Katarina, et al. (författare)
  • Development- and usability testing of a web-based decision support for users and health professionals in psychiatric services
  • 2017
  • Ingår i: Psychiatric rehabilitation journal. - Washington, DC : American Psychological Association (APA). - 1095-158X .- 1559-3126. ; 40:3, s. 293-302
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: Shared decision making (SMD) related to treatment and rehabilitation is considered a central component in recovery-oriented practice. Although decision aids are regarded as an essential component for successfully implementing SDM, these aids are often lacking within psychiatric services. The aim of this study was to use a participatory design to facilitate the development of a user-generated, web-based decision aid for individuals receiving psychiatric services. The results of this effort as well as the lessons learned during the development and usability processes are reported. Method: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were used with potential end users participating as informants in focus group and individual interviews and as usability and pilot testers. Results: Interviewing and testing identified usability problems that then led to refinements and making the subsequent prototypes increasingly user-friendly and relevant. In each phase of the process, feedback from potential end-users provided guidance in developing the formation of the web-based decision aid that strengthens the position of users by integrating access to information regarding alternative supports, interactivity between staff and users, and user preferences as a continual focus in the tool. Conclusions and Implications for Practice: This web-based decision aid has the potential to strengthen service users’ experience of self-efficacy and control as well as provide staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to the development and implementation of tools that reflect user perspectives.
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7.
  • Lövgren, Malin, et al. (författare)
  • Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
  • 2016
  • Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
  • Tidskriftsartikel (refereegranskat)abstract
    • Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.
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8.
  • Lövgren, Malin, et al. (författare)
  • Care at end of life influences grief : A nationwide long-term follow-up among young adults who lost a brother or sister to childhood cancer
  • 2018
  • Ingår i: Journal of Palliative Medicine. - Larchmont, New York : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:2, s. 156-162
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: A majority of cancer-bereaved siblings report long-term unresolved grief, thus it is important to identify factors that may contribute to resolving their grief.OBJECTIVE: To identify modifiable or avoidable family and care-related factors associated with unresolved grief among siblings two to nine years post loss.DESIGN: This is a nationwide Swedish postal survey.MEASUREMENTS: Study-specific questions and the standardized instrument Hospital Anxiety and Depression Scale. Primary outcome was unresolved grief, and family and care-related factors were used as predictors.SETTING/PARTICIPANTS: Cancer-bereaved sibling (N = 174) who lost a brother/sister to childhood cancer during 2000-2007 in Sweden (participation rate 73%). Seventy-three were males and 101 females. The age of the siblings at time of loss was 12-25 years and at the time of the survey between 19 and 33 years.RESULTS: Several predictors for unresolved grief were identified: siblings' perception that it was not a peaceful death [odds ratio (OR): 9.86, 95% confidence interval (CI): 2.39-40.65], limited information given to siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending death communicated the day before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings' avoidance of the doctors (OR: 3.22, 95% CI: 0.75-13.76), and lack of communication with family (OR: 2.86, 95% CI: 1.01-8.04) and people outside the family about death (OR: 5.07, 95% CI: 1.64-15.70). Depressive symptoms (OR: 1.27, 95% CI: 1.12-1.45) and time since loss (two to four years: OR: 10.36, 95% CI: 2.87-37.48 and five to seven years: OR: 8.36, 95% CI: 2.36-29.57) also predicted unresolved grief. Together, these predictors explained 54% of the variance of unresolved grief.CONCLUSION: Siblings' perception that it was not a peaceful death and poor communication with family, friends, and healthcare increased the risk for unresolved grief among the siblings.
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9.
  • Shannon, Michelle M., et al. (författare)
  • Can the physical environment itself influence neurological patient activity?
  • 2019
  • Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 1464-5165 .- 0963-8288. ; 41:10, s. 1177-1189
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: To evaluate if a changed physical environment following redesign of a hospital ward influenced neurological patient physical and social activity. Methods: A “before and after” observational design was used that included 17 acute neurological patients pre-move (median age 77 (IQR 69–85) years Ward A and 20 post-move (median age 70 (IQR 57–81) years Ward B. Observations occurred for 1 day from 08.00–17.00 using Behavioral Mapping of patient physical and social activity, and location of that activity. Staff and ward policies remained unchanged throughout. An Environmental Description Checklist of each ward was also completed. Results: Behavioral Mapping was conducted pre-/post-move with a total of 801 Ward A and 918 Ward B observations. Environmental Description Checklists showed similarities in design features in both neurological wards with similar numbers of de-centralized nursing stations, however there were more single rooms and varied locations to congregate in Ward B (30% more single-patient rooms and separate allied health therapy room). Patients were alone >60% of time in both wards, although there was more in bed social activity in Ward A and more out of bed social activity in Ward B. There were low amounts of physical activity outside of patient rooms in both wards. Significantly more physical activity occurred in Ward B patient rooms (median = 47%, IQR 14–74%) compared to Ward A (median = 2% IQR 0–14%), Wilcoxon Rank Sum test z = −3.28, p = 0.001. Conclusions: Overall, patient social and physical activity was low, with little to no use of communal spaces. However we found more physical activity in patient rooms in the Ward B environment. Given the potential for patient activity to drive brain reorganization and repair, the physical environment should be considered an active factor in neurological rehabilitation and recovery.Implications for Rehabilitation Clinicians should include consideration of the impact of physical environment on physical and social activity of neurological patients when designing therapeutic rehabilitation environments. Despite architectural design intentions patient and social activity opportunities can be limited. Optimal neurological patient neuroplasticity and recovery requires sufficient environmental challenge, however current hospital environments for rehabilitation do not provide this.
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10.
  • Udo, Camilla, et al. (författare)
  • A nationwide study of young adults’ perspectives on participation in bereavement research
  • 2019
  • Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 22:10, s. 1271-1273
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND:Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.AIM:To explore how parentally bereaved and nonbereaved young adults perceive research participation.DESIGN:Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.SETTING/PARTICIPANTS:Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.RESULTS:Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.CONCLUSIONS:It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
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