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1.
  • Sveen, Josefin, et al. (författare)
  • They still grieve : a nationwide follow‐up of young adults 2–9 years after losing a sibling to cancer
  • 2014
  • Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 23:6, s. 658-664
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors.Methods: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent.Results: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss.Conclusion: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death. Keywords:  bereavement; cancer; grief; oncology; sibling loss; young adult loss.
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2.
  • Erlandsson, Kerstin, et al. (författare)
  • Mothers' experiences of the time after the diagnosis of an intrauterine death until the induction of the delivery : a qualitative Internet-based study
  • 2011
  • Ingår i: Journal of obstetrics and gynaecology research. - : Wiley. - 1341-8076 .- 1447-0756 .- 0144-3615 .- 1364-6893. ; 37:11, s. 1677-84
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: This study aims to describe how mothers spend the period of time between being diagnosed with a dead baby in utero and the induction of the delivery.MATERIAL AND METHODS: Data were collected using a web questionnaire. Five hundred and fifteen women who had experienced a stillbirth after the 22nd week of gestation answered the open question: 'What did you do between the diagnosis of the child's death and the beginning of the delivery?' A qualitative content analysis method was used.RESULTS: The results show that some mothers received help to adapt to the situation, while for others, waiting for the induction meant further stress and additional psychological trauma in an already strained situation.CONCLUSION: There is no reason to wait with the induction unless the parents themselves express a wish to the contrary. Health care professionals, together with the parents, should try to determine the best time for the induction of the birth after the baby's death in utero. That time may vary, depending on the parents' preferences.
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3.
  • Craftman, Åsa, et al. (författare)
  • Older people's experience of utilisation and administration of medicines in a health- and social care context
  • 2015
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 29:4, s. 760-768
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care.Aim: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care.Design: A qualitative descriptive study.Methods: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used.Findings: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process.Conclusions: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine.Relevance to Clinical Practice: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health-and social care delivery is efficient and improve outcome for the recipient of care.
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4.
  • Craftman, Åsa, et al. (författare)
  • Unlicensed personnel administering medications to older persons living at home : a challenge for social and care services
  • 2015
  • Ingår i: International Journal of Older People Nursing. - : Wiley. - 1748-3735 .- 1748-3743. ; 10:3, s. 201-210
  • Tidskriftsartikel (refereegranskat)abstract
    • Background. Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge.Aim. The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care.Methods. Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis.Results. According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality.Conclusions. Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. Implications for practice. This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.
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5.
  • Rådestad, Ingela, et al. (författare)
  • Being alone in silence - Mothers' experiences upon confirmation of their baby's death in utero
  • 2014
  • Ingår i: Midwifery. - : Elsevier BV. - 0266-6138 .- 1532-3099. ; 30:3, s. e91-e95
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: to explore mothers' experiences of the confirmation of ultrasound examination results and how they were told that their baby had died in-utero.DESIGN: in-depth interviews.SETTING: Sweden.PARTICIPANTS: 26 mothers of stillborn babies.MEASUREMENT: narratives were analysed using a qualitative content analysis with an inductive approach.FINDINGS: the mothers experienced that silence prevailed during the entire process of confirming the ultrasound results. Typically all present in the ultrasound room were concentrating and focusing on what they observed on the screen, no one spoke to the mother. The mothers had an instinctive feeling that their baby might be dead based on what they observed on the ultrasound screen and on their interpretation of the body language of the clinicians and midwives. Some mothers reported a time delay in receiving information about their baby's death. Experiencing uncertainty about the information received was also noticed.CONCLUSION: mothers emphasised an awareness of silence and feelings of being completely alone while being told of the baby's death.IMPLICATION FOR PRACTICE: the prevalence of silence during an ultrasound examination may in certain cases cause further psychological trauma for the mother of a stillborn baby. One way to move forward given these results may be to provide obstetric personnel sufficient training on how difficult information might be more effectively and sensitively provided in the face of an adverse pregnancy outcome.
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6.
  • Gabrielsson, Hanna, 1977-, et al. (författare)
  • Views on everyday life among adults with spina bifida : an exploration through photovoice
  • 2020
  • Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 15:1
  • Tidskriftsartikel (refereegranskat)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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7.
  • Bergkvist, Karin, et al. (författare)
  • Hospital care or home care after allogeneic hematopoietic stem cell transplantation : patients' experiences of care and support
  • 2013
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 48, s. S468-S468
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE:Treatment at home during the pancytopenic phase after allogeneic hematopoietic stem cell transplantation (HSCT) has been an option for patients at our center since 1998. Earlier studies have shown that home care is safe and has medical advantages. In this study, we present patients' experiences of care and support while being treated in hospital or at home during the acute post-transplantation phase.METHOD:Patients (n = 41, 22 in hospital care and 19 in home care) answered the SAUC questionnaire at discharge (when home, or from hospital). Both statistical analysis and deductive content analysis were used.RESULTS:The patients were highly satisfied with the care and support during the acute post-transplantation phase. Patients in home care were found to be more satisfied with care in general than patients in hospital care. The importance of safety, empathy, and encouragement from healthcare staff were expressed regardless of where care was given. Patients also felt that receipt of continuous, updated information during treatment was important and they had a strong belief in HSCT but were uncertain of the future regarding recovery.CONCLUSIONS:The main findings of this study were that in comparison to hospital care, home care does not appear to have a significant negative effect on patients' experiences of care and support during the acute post-transplantation phase. In addition patients in home care felt safe, seen as a person and encouragement seem to empower the patients at home. Thus, this study may encourage other transplantation centers to provide home care if the patients want it.
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8.
  • Bylund-Grenklo, Tove, et al. (författare)
  • Self-injury in youths who lost a parent to cancer : nationwide study of the impact of family-related and health-care-related factors
  • 2014
  • Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 23:9, s. 989-997
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Self-injury, a manifestation of severe psychological distress, is increased in cancer-bereaved youths. Little is known about the potential influence on the risk for self-injury of factors that could be clinically relevant to and modifiable by the health-care professionals involved in the care of the dying parent.METHODS: In a nationwide population-based anonymous study, 622 (73.1%) youths (aged 18-26) who, 6 to 9 years earlier at ages 13 to 16, had lost a parent to cancer answered study-specific questions about self-injury and factors related to the family and parental health care.RESULTS: Univariable analyses showed that the risk for self-injury was increased among cancer-bereaved youths who reported poor family cohesion the years before (relative risk [RR], 3.4, 95% confidence interval [CI], 2.5-4.6) and after the loss (RR, 3.3, 95% CI, 2.4-4.4), distrust in the health care provided to the dying parent (RR, 1.7, 95% CI, 1.2-2.4), perceiving poor health-care efforts to cure the parent (RR 1.5, 95% CI, 1.1-2.1) and poor efforts to prevent suffering (RR, 1.6, 95% CI, 1.1-2.4), that at least one of their parents had been depressed or had troubles in life (RR, 1.5, CI, 1.1-2.1) and believing 3 days before the loss that the treatment would probably cure the parent (RR, 1.6, CI, 1.1-2.3). In the total multivariable models, only poor family cohesion before and after the loss remained statistically significantly associated with self-injury.CONCLUSION: Poor family cohesion before and after the loss of a parent to cancer is associated with an increased risk of self-injury in teenage children. Copyright © 2014 John Wiley & Sons, Ltd.
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9.
  • Holm, Maja, et al. (författare)
  • Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals
  • 2017
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 6-11
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care. Methods: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles. Results: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support. Conclusions: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT. (C) 2017 Elsevier Ltd. All rights reserved.
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10.
  • Hanan, El Malla, et al. (författare)
  • Adherence to medication : A nation-wide study from the Children's Cancer Hospital, Egypt
  • 2013
  • Ingår i: World journal of psychiatry. - : Baishideng Publishing Group Inc.. - 2220-3206. ; 22, s. 62-62
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: To investigate adherence to medical regimen and predictors for non-adherence among children with cancer in Egypt.METHODS: We administered two study specific questionnaires to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital in Cairo, Egypt, one before the first chemotherapy treatment and the other before the third. The questionnaires were translated to colloquial Egyptian Arabic, and due, to the high illiteracy level in Egypt an interviewer read the questions in Arabic to each parent and registered the answers. Both questionnaires consisted of almost 90 questions each. In addition, a Case Report Form was filled in from the child's medical journal. The study period consisted of 7 mo (February until September 2008) and we had a participation rate of 97%. Descriptive statistics are presented and Fisher's exact test was used to check for possible differences between the adherent and non-adherent groups. A P-value below 0.05 was considered significant. Software used was SAS version 9.3 for Windows (SAS Institute Inc., Cary, NC, United States).RESULTS: Two hundred and eighty-one (90%) parents answered the second questionnaire, regarding their child's adherence behaviour. Approximately two thirds of the children admitted to their third chemotherapy treatment had received medical recommendations upon discharge from the first or second chemotherapy treatment (181/281, 64%). Sixty-eight percent (123/181) of the parents who were given medical recommendations reported that their child did not follow the recommendations. Two main predictors were found for non-adherence: child resistance (111/123, 90%) and inadequate information (100/123, 81%). In the adherent group, 20% of the parents (n = 12/58) reported trust in their child's doctor while 14 percent 8/58 reported trust in the other health-care professionals. Corresponding numbers for the non-adherent group are 8/123 (7%) for both their child's doctor and other health-care professionals. Almost all of the parents expressed a lack of optimism towards the treatment (116/121, 96%), yet they reported an intention to continue with the treatment for two main reasons, for the sake of their child's life (70%) (P = 0.005) and worry that their child would die if they discontinued the treatment (81%) (P < 0.0001).CONCLUSION: Non-adherence to medical regimen is common among children diagnosed with cancer in Egypt, the main reasons being child resistance and inadequate information.
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