Change search
Refine search result
1 - 30 of 30
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Rows per page
  • 5
  • 10
  • 20
  • 50
  • 100
  • 250
Sort
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
Select
The maximal number of hits you can export is 250. When you want to export more records please use the Create feeds function.
  • 1.
    Alvariza, Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Hakola, Pia
    Stockholms Sjukhem.
    Fürst, Carl Johan
    Lunds universitet, Region Skåne.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals-A nationwide survey.2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 3, p. 313-319Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.

    METHODS: This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13-16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.

    RESULTS: Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.

    SIGNIFICANCE OF RESULTS: This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.

  • 2.
    Beernaert, Kim
    et al.
    Belgien.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Jeppesen, Jørgen
    Danmark.
    Werlauff, Ulla
    Danmark.
    Rahbek, Jes
    Danmark.
    Sejersen, Thomas
    Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey.2019In: Journal of Child Neurology, ISSN 0883-0738, E-ISSN 1708-8283, article id 883073818822900Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness.

    STUDY DESIGN:: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care.

    RESULTS:: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled.

    CONCLUSIONS:: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.

  • 3.
    Eilertsen, Mary-Elizabeth Bradley
    et al.
    Norge, Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up.2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 4, p. 406-413Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

    METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

    RESULTS: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

    SIGNIFICANCE OF RESULTS: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

  • 4.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative vård, Dalen sjukhus, Stockholm..
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    The family talk intervention in palliative care: a study protocol2018In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, no 35Article in journal (Refereed)
    Abstract [en]

    Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.

    Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.

    Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.

  • 5.
    Henoch, Ingela
    et al.
    Göteborgs universitet.
    Lövgren, Malin
    Högskolan Dalarna.
    The influence of symptom clusters and the most distressing concerns regarding quality of life among patients with inoperable lung cancer.2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 3, p. 236-241Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To explore the influence of symptom clusters and the most distressing concerns on global rating of quality of life (QoL) among patients with inoperable lung cancer (LC) over a three-month period following diagnosis.

    METHODS: Data were derived from a longitudinal study dealing with the symptom experiences of 400 patients with LC at three time points: close to diagnosis and one and three months later. The symptom clusters were derived from a QoL questionnaire using factor analysis, which resulted in three clusters: the Respiratory cluster, the Pain cluster and the Mood cluster. The most distressing concerns were derived from responses to a free listing question ('What is most distressing at present') and were categorised under three dimensions: Bodily distress, Life situation with LC and Iatrogenic distress. Cross-sectional, multivariate regression analyses with QoL as a dependent variable were used to determine predictors (symptom clusters and most distressing concerns) at the three time points.

    RESULTS: All three symptom clusters predicted QoL at each time point. Close to diagnosis, none of the dimensions of most distressing concerns predicted QoL, while the dimension Bodily distress was a significant predictor of QoL after one month. The Life situation with LC dimension was a significant predictor of QoL three months after diagnosis.

    CONCLUSIONS: Symptom clusters are important to LC patients' QoL and need to be acknowledged by healthcare professionals. The present study shows the importance of patients' descriptions of key concerns, which vary from diagnosis onwards, and urges healthcare professionals to be vigilant to such changes.

  • 6.
    Henoch, Ingela
    et al.
    Karolinska Institutet, Göteborgs universitet, Bräcke Diakoni, Göteborg.
    Lövgren, Malin
    Högskolan Dalarna, Stockholms Sjukhem.
    Wilde-Larsson, Bodil
    Karlstad universitet, Hedmark University College, Norge.
    Tishelman, Carol
    Karolinska Institutet, Stockholms Sjukhem.
    Perception of quality of care: Comparison of the views of patients' with lung cancer and their family members.2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 3-4, p. 585-594Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To explore potential differences within dyads of patients' with lung cancer and family members' judgment of different aspects of quality of care and relationships between quality of care and personal and health-related characteristics.

    BACKGROUND: High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision-making, family members might often act as proxies, despite the complicated nature of their own situation.

    DESIGN: Cross-sectional survey design.

    METHOD: A patient and family member version of the abbreviated questionnaire Quality from Patients' Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon's signed rank test was used to identify potential differences within 51 patient-family member dyads' quality of care ratings. Relationships between Quality from Patients' Perspective dimensions and demographic and health-related variables were examined with Spearman's correlations.

    RESULTS: Patient-family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension 'socio-cultural approach'. Older patients were found to rate the physical-technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical-technical competence, identity-oriented approach and socio-cultural approach significantly higher than men did.

    CONCLUSIONS: Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members' opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members' ratings should be interpreted with precaution, as it could diverge from patients' own opinion.

    RELEVANCE TO CLINICAL PRACTICE: The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients' nor family members' expectations, which is an important message to healthcare professionals and which would demand further exploration.

  • 7.
    Hjorth, Elin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sejersen, Thomas
    Karolinska institutet.
    Jeppesen, Jørgen
    Danmark.
    Werlauff, Ulla
    Danmark.
    Rahbek, Jes
    Danmark.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved.2018In: Journal of Child Neurology, ISSN 0883-0738, E-ISSN 1708-8283, article id 883073818811544Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.

    METHODS:: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.

    RESULTS:: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.

    CONCLUSIONS:: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.

  • 8.
    Hjorth, Elin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Sejersen, Thomas
    Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Parents' advice to healthcare professionals working with children who have spinal muscular atrophy2018In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 22, no 1, p. 128-134, article id S1090-3798(17)30897-8Article in journal (Refereed)
    Abstract [en]

    AIM: To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).

    MATERIALS AND METHODS: This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.

    RESULTS: More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.

    CONCLUSIONS: Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.

  • 9.
    Jalmsell, Li
    et al.
    Uppsala universitet, Visby lasarett.
    Lövgren, Malin
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    Frost, Britt-Marie
    Uppsala universitet.
    Children with cancer share their views: tell the truth but leave room for hope.2016In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 9, p. 1094-1099Article in journal (Refereed)
    Abstract [en]

    AIM: One in five children diagnosed with cancer will die from the disease. Few studies have focused on how children with cancer want to receive bad news, such as when no more treatment options are available, and that was the aim of this study.

    METHODS: We conducted individual interviews with ten children with cancer, aged seven to 17 years, at a single paediatric oncology unit in central Sweden. Interviews were audiotaped and analysed with systematic text condensation. Bad news was defined as information about a potentially fatal outcome, such as a disease relapse, or information that the treatment administered was no longer working and that there was no more treatment possible.

    RESULTS: All children expressed that they wanted truthful information, and they did not want to be excluded from bad news regarding their illness. They wanted to be informed as positively as possible, allowing them to maintain hope, and in words that they could understand. They also wanted to receive any bad news at the same time as their parents.

    CONCLUSION: Children with cancer want to be fully informed about their disease, but they also wanted it to be relayed as positively as possible so that they could stay hopeful. This article is protected by copyright. All rights reserved.

  • 10.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    Att ha ett syskon med cancer: Information till föräldrar2016Book (Other academic)
    Abstract [sv]

    Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Den är tänkt att ge föräldrar stöd i hur de kan synliggöra syskon, som ofta hamnar i skuggan av en syster eller bror som insjuknar i cancer.

  • 11.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    Jag då!: Till dig som har ett syskon med cancer2016Book (Other academic)
    Abstract [sv]

    Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Den här skriften vänder sig till dig som har en bror eller syster med cancer och är tänkt att ge stöd, när livet ställs på ända.

  • 12.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    När det värsta har hänt: Hur föräldrar kan stötta syskon som mist2016Book (Other academic)
    Abstract [sv]

    Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Syftet med skriften är att ge föräldrar stöd i hur de kan möta syskon som mist en bror eller syster i cancer.

  • 13.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    Saknar dig!: Till dig som förlorat ett syskon i cancer2016Book (Other academic)
    Abstract [sv]

    den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Tanken med skriften är att ge stöd till dig som förlorat en bror eller syster i cancer.

  • 14.
    Lövgren, Malin
    et al.
    Karolinska Institutet.
    Bylund-Grenklo, Tove
    Karolinska Institutet, Linnéuniversitetet.
    Jalmsell, Li
    Visby Lasarett, Uppsala universitet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families.2016In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 4, p. 297-305Article in journal (Refereed)
    Abstract [en]

    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.

  • 15.
    Lövgren, Malin
    et al.
    Karolinska institutet, Högskolan Dalarna.
    Gustavsson, Petter
    Karolinska institutet.
    Melin, Bo
    Karolinska institutet.
    Rudman, Ann
    Karolinska institutet.
    Neck/shoulder and back pain in new graduate nurses: A growth mixture modeling analysis.2014In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 51, no 4, p. 625-639Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Although it is well known that musculoskeletal disorders are common among registered nurses, little longitudinal research has been conducted to examine this problem from nursing education to working life.

    OBJECTIVES: The aim was to investigate the prevalence and incidence of neck/shoulder and back pain in nursing students in their final semester, and one and two years after graduation. Furthermore, to identify common trajectories of neck/shoulder and back pain, and explore sociodemographic and lifestyle-related factors, contextual factors and health outcome that might be characteristic of individuals in the various trajectories.

    DESIGN: Longitudinal study following nursing students from their final year of studies, with follow-ups one and two years after graduation.

    SETTINGS AND PARTICIPANTS: Nursing students who graduated from the 26 universities providing undergraduate nursing education in Sweden 2002 were invited to participate (N=1700). Of those asked, 1153 gave their informed consent.

    METHODS: The participants answered postal surveys at yearly intervals. Descriptive statistics were used to analyze prevalence and incidence of pain, and growth mixture modeling was applied to identify different homogeneous clusters of individuals following similar trajectories in pain development across time.

    RESULTS: The prevalence of neck/shoulder and back pain remained constant over time (around 50% for neck/shoulder pain and just over 40% for back pain). Six different development trajectories for each symptom were found, reflecting patterns of stable pain levels or variation in levels over time: one symptom-free group, two decreasing pain groups, two increasing pain groups, and one chronic pain group. With few exceptions, the same factors (sex, children, chronic disease, working overtime, work absence, sickness presence, physical load, depression, self-rated health, sleep quality and muscular tension) were associated with neck/shoulder and back pain trajectories. Different types of physical load characterized new nurses with neck/shoulder pain and back pain respectively.

    CONCLUSIONS: The high prevalence of pain among nursing students and among new graduate nurses, suggests that it would be effective to implement preventive strategies already during nursing education, but they should also preferably continue after graduation. Many factors associated with pain in the neck/shoulder and back seem to be modifiable, and thereby constitute targets for preventive strategies.

  • 16.
    Lövgren, Malin
    et al.
    Karolinska Institutet, Högskolan Dalarna.
    Hamberg, Katarina
    Umeå universitet.
    Tishelman, Carol
    Stockholms Sjukhem, Karolinska institutet, University of Manchester, Storbritannien.
    Clock time and embodied time experienced by patients with inoperable lung cancer.2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 1, p. 55-63Article in journal (Refereed)
    Abstract [en]

    In this study, we explore how patients with inoperable lung cancer (LC) discuss their experiences of time, based on content analysis of open interviews with 35 patients 1 year after diagnosis, using Davies' distinction between "clock time" and "embodied time" as sensitizing concepts. Two interrelated themes were derived: (1) aspects related to the healthcare system, with 3 subthemes: waiting times in the healthcare system, limited time for patient-professional contact, and limited time for coordination of services, and (2) existential aspects, with subthemes: the future with LC and managing an uncertain and finite life with LC. Time could be experienced as problematic for these patients, when limited or lacking or through long periods of waiting, especially when these periods occurred without adequate preparation or information. This contributed to exacerbation of these patients' existing sense of uncertainty, their perception of care as impersonal and insecure, and their need to remain alert and act on their own behalf. Awareness of the seriousness of their disease and the prospect of a limited lifetime was described as increasing uncertainty about dying and fear of certain death. People also described efforts to constructively deal with their situation by reprioritizing their remaining time, having increased appreciation of some aspects of daily life, and living consciously in the present. This analysis suggests a collision between clock time, which steers the healthcare system, and embodied time, as experienced by individuals. Greater attention to psychosocial needs is suggested as one means of positively affecting patients' experiences of time and uncertainty.

  • 17.
    Lövgren, Malin
    et al.
    Karolinska institutet, Högskolan Dalarna.
    Jalmsell, Li
    Uppsala universitet, Visby Lasarett.
    Eilegård Wallin, Alexandra
    Högskolan Dalarna.
    Steineck, Gunnar
    Karolinska institutet, Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Siblings' experiences of their brother's or sister's cancer death: A nationwide follow-up 2-9 years later.2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 4, p. 435-440Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2-9 years later.

    METHODS: This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000-2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann-Whitney U-test was conducted to investigate if the experiences influenced anxiety 2-9 years later.

    RESULTS: The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2-9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.

    CONCLUSION: It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on. Copyright © 2015 John Wiley & Sons, Ltd.

  • 18.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna.
    Family talk intervention in paediatric oncology: A pilot study protocol2019In: BMJ Paediatrics Open, E-ISSN 2399-9772, Vol. 3, article id e000417Article in journal (Refereed)
    Abstract [en]

    Introduction There is evidence that families with a child diagnosed with cancer need psychosocial support throughout the illness trajectory. Unfortunately, there is little research into psychosocial interventions for such families, especially interventions where the entire family is involved. The aim of this pilot study is therefore to evaluate a psychosocial intervention, the family talk intervention (FTI), in paediatric oncology in terms of study feasibility and potential effects.

    Methods and analysis This pretest/post-test intervention pilot study is based on families with a child diagnosed with cancer. All families that include at least one child aged 6–19 years (ill child and/or sibling) at one of the six paediatric oncology centres in Sweden between September 2018 and September 2019 will be asked about participation. The intervention consists of six meetings with the family (part of the family or the entire family), led by two interventionists. The core elements in the intervention are to support the families in talking about the illness and related subjects, support the parents in understanding the needs of their children and how to support them and support the families in identifying their strengths and how to use them best. Mixed methods are used to evaluate the intervention (web-based questionnaires, interviews, field notes and observations). Self-reported data from all family members are collected at baseline, directly after the intervention and 6 months later. Study outcomes are family communication, knowledge about the illness, resilience, quality of life and grief.

  • 19.
    Lövgren, Malin
    et al.
    Karolinska institutet, Högskolan Dalarna.
    Leveälahti, Helena
    Karolinska institutet, Stockholms Sjukhem.
    Tishelman, Carol
    Stockholms Sjukhem, University of Manchester, Storbritannien, Karolinska institutet.
    Runesdotter, Sara
    Karolinska institutet, Stockholms Sjukhem.
    Hamberg, Katarina
    Umeå universitet.
    Koyi, Hirsh
    Karolinska institutet.
    Time spans from first symptom to treatment in patients with lung cancer: The influence of symptoms and demographic characteristics.2008In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 47, no 3, p. 397-405Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cancer stage at diagnosis is the most important prognostic factor for lung cancer (LC), but most patients are diagnosed with advanced disease with many and intense symptoms. This study explores relationships between LC patients' first symptoms, symptoms triggering health care system (HCS) contact, demographic/clinical characteristics, and time spans in the care trajectory from first symptom(s) to treatment start.

    MATERIALS AND METHODS: Medical records were examined from all 314 patients diagnosed with primary LC in 2003 at a Department of Respiratory Medicine, in Stockholm Sweden. Descriptive analysis was used to examine symptoms and time spans in the care trajectory. Cox regression analysis was conducted to explore the influence of symptoms and demographic/clinical characteristics on the time spans.

    RESULTS: Tumor-specific symptoms led to HCS visits to a greater extent than did systemic symptoms, despite reports of weight loss, fatigue and appetite loss as common first symptoms. Minor differences between women and men were found regarding specific symptoms. The study confirms that the time spans from first symptoms reported to treatment start are extensive, exceeding Swedish national recommendations. A lump/resistance, neurological symptoms, appetite loss, hemoptysis and non-thoracic related pain were associated with significantly shorter time spans in the care trajectory. People >74 years old risked longer time span from first HCS visit to treatment start.

    CONCLUSION: This study indicates a need for a more efficient LC care trajectory. Elderly patients could be particularly vulnerable for longer time spans.

  • 20.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Mogensen, N
    Karolinska institutet.
    Harila-Saari, A
    Uppsala universitet.
    Lähteenmäki, P M
    Finland.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sweden and Finland need to improve the support provided for the siblings of children with cancer.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 108, no 2, p. 369-370Article in journal (Refereed)
    Abstract [en]

    Evidence favours sibling support as a standard of care in paediatric oncology (1). Guidelines published in 1999 by the International Society of Paediatric Oncology (2) recommended involving siblings in the ill child's care and supporting siblings during and after the illness. Studies have shown that this is something that siblings want and need (3) and lack of support has increased the risk of long-term psychological distress (4). Sibling support varies between countries. This article is protected by copyright. All rights reserved.

  • 21.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sejersen, Thomas
    Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Information and treatment decisions in severe Spinal muscular atrophy: A parental follow-up2016In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 20, no 6, p. 830-838Article in journal (Refereed)
    Abstract [en]

    Introduction

    The parents of children with severe spinal muscular atrophy (SMA) face difficult ethical decisions regarding their child's treatment. This study explored the experience of parents of children with severe SMA concerning information and treatment decisions.

    Material and methods

    This nationwide survey, conducted in 2013, is based on parents of children who were born in Sweden between 2000 and 2010 and later diagnosed with SMA type I or II where respiratory support was considered the first year of life (N = 61, participation rate: 87%). The survey involved parents' perception of the child's care and the questions used in this study covered information given and treatment decisions. Descriptive statistics were used.

    Results

    None of the parents reported that the health care professionals made decisions concerning the child's treatment without informing them first, and 80% reported feeling confident about the decisions made. Of the bereaved parents, 11/48 (23%) reported that they got no information about respiratory support, compared to 2/13 (15%) of non-bereaved. Bereaved parents were more likely to report being satisfied with and understanding the information given about the illness and its treatment than non-bereaved parents.

    Conclusion

    All parents reported having been informed before treatment decisions were made and a vast majority reported feeling confident about the decisions. However, a quarter of the parents declined to have received information about respiratory support, which indicates that the parents did not sufficiently understand the available respiratory treatment options, and that their children may not receive the kind of care that is recommended in guidelines.

  • 22.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sejersen, Thomas
    Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Parents' Experiences and Wishes at End of Life in Children with Spinal Muscular Atrophy Types I and II.2016In: Journal of Pediatrics, ISSN 0022-3476, E-ISSN 1097-6833, Vol. 175, p. 201-205Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy.

    STUDY DESIGN: A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were born between 2000 and 2010 and later diagnosed with spinal muscular atrophy type I or II (n = 48). The questions used in this study covered location of death (LoD), support from health care staff, and parents' wishes and concerns about their child's end-of-life care.

    RESULTS: One-half of those who had wishes about LoD (16/32) wanted their child to die at home, rather than at the hospital. All of those who wanted the child to die at the hospital had their wishes fulfilled. Among those who wanted the child to die at home, 10 of 16 got their wish. Among parents who talked with a physician about how they wanted their child to pass away (n = 26), all but 2 had their wishes fulfilled. Thirty-six parents (75%) reported that their child had siblings: 12 reported that the sibling was too young for professional psychological support, and only 4 of the remaining 24 siblings received such support after the death of their brother or sister.

    CONCLUSIONS: Parents' communication with the physician about their wishes and concerns regarding their child's end-of-life care and preferred LoD contributed to their wishes being fulfilled. The wish of hospital death was fulfilled more often than the wish of home deaths. A vast majority of siblings did not receive psychological support after death of their brother or sister.

  • 23.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Family Bereavement Care in Pediatric Oncology2018In: Palliative Care in Pediatric Oncology / [ed] Joanne Wolfe, Barbara L. Jones, Ulrika Kreicbergs & Momcilo Jankovic, Springer, 2018, p. 245-264Chapter in book (Refereed)
    Abstract [en]

    Studies have shown that grief after losing a child is more intense and prolonged than after the loss of a spouse or a parent. Children are expected to outlive their parents, and losing one’s child has been described as one of the most traumatic experiences possible. While a majority of bereaved parents adjust to the loss of a child without professional help, a significant minority will experience persistent and intensive grief reactions and may need treatment. Siblings are often called “the forgotten grievers” based on the idea that they are not the focus of family, friends, and health-care professionals, who often primarily focus on the ill child and the parents. Unfortunately, research has shown that a majority of siblings still grieve many years after the loss. As research shows that long-term psychological morbidity, including grief, among parents and siblings is affected by modifiable and/or avoidable factors during illness, end of life, and after the loss, family bereavement care should start early and beyond the child’s death. This chapter describes factors that can contribute to the psychological outcomes for parents and siblings after bereavement. Symptom management in the end of life has shown important as well as a good relationship between the health-care professionals and the parents/siblings during the illness trajectory. Parents and siblings need open and honest communication relating to diagnosis, prognosis, and impending death as it allows them to better prepare for the loss—something that are important for their psychological well-being years after bereavement. Bereavement support for the family after the loss is also described in this chapter. For example, it is important for families to have access to the care team after the loss of the child as they have expressed a need for, e.g., remembrance ceremonies and for obtaining more knowledge about the end-of-life care. Parent support groups are much appreciated by the parents but lack evaluation of their effect. This is also the case for sibling camps. As much of bereavement care is not evidence based, or not even theoretically based, more research is needed in order to better facilitate the grieving process and long-term psychological well-being for parents and siblings.

  • 24.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Nyberg, Tommy
    Karolinska Institutet. Storbritannien.
    Eilegård Wallin, Alexandra
    Högskolan Dalarna.
    Prigerson, Holly G
    USA.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    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.2018In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 21, no 2, p. 156-162Article in journal (Refereed)
    Abstract [en]

    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.

  • 25.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Karolinska institutet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Eilertsen, Mary-Elizabeth B
    Norge.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Spirituality and religious coping are related to cancer-bereaved siblings' long-term grief.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed)
    Abstract [en]

    Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents' and young adults' ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief. Method: This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief ("What has helped you to cope with your grief after your sibling's death?") and one closed-ended question about siblings' long-term grief ("Do you think you have worked through your grief over your sibling's death?"). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings' long-term grief. Result The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings' experience of having worked through their grief two to nine years after the loss (p = 0.016). Significance of results Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.

  • 26.
    Lövgren, Malin
    et al.
    Karolinska Institutet, Högskolan Dalarna.
    Tishelman, Carol
    Stockholms Sjukhem, University of Manchester, Storbritannien, Karolinska institutet.
    Sprangers, Mirjam
    University of Amsterdam, Nederländerna.
    Koyi, Hirsh
    Karolinska institutet.
    Hamberg, Katarina
    Umeå universitet.
    Symptoms and problems with functioning among women and men with inoperable lung cancer: A longitudinal study.2008In: Lung Cancer, ISSN 0169-5002, E-ISSN 1872-8332, Vol. 60, no 1, p. 113-124Article in journal (Refereed)
    Abstract [en]

    The aim of this study is to compare the prevalence and intensity of symptoms and problems with functioning between women and men with inoperable lung cancer (LC) during 3 months post-diagnosis. One hundred and fifty-nine patients completed the EORTC QLQ C-30+LC13 at three time points: close to diagnosis and prior to treatment, and one, and 3 months later. Descriptive cross-sectional analyses and longitudinal analyses using repeated measure ANOVA were conducted. These patients reported many and intense symptoms and problems with functioning. The most salient finding from the cross-sectional analysis was that women reported both more, and more intense problems with emotional functioning close to diagnosis. Statistically significant improvements over time were found in both men and women with regard to emotional functioning, dyspnea, insomnia, cough, pain in arm/shoulder, while physical functioning, fatigue, constipation, dysphagia, peripheral neuropathy and alopecia deteriorated significantly over time. The longitudinal analyses suggest that, with the exception of emotional functioning, gender differences were not only related to biological sex alone, but were also found to be related to other components of the patients' life situation, such as education, age, civil status and type of LC. Sensitivity to different symptom experiences and responses to those experiences between and within women and men is also necessary in the management of symptoms in patients with inoperable LC.

  • 27.
    Lövgren, Malin
    et al.
    Karolinska institutet, Högskolan Dalarna, Stockholms Sjukhem.
    Wilde-Larsson, B
    Karlstad universitet, Hedmark University College, Norway.
    Hök, J
    Karolinska institutet.
    Leveälahti, H
    Stockholms Sjukhem.
    Tishelman, C
    Karolinska institutet, Stockholms Sjukhem.
    Push or pull?: Relationships between lung cancer patients' perceptions of quality of care and use of complementary and alternative medicine2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 4, p. 311-317Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study examines CAM-use among patients with LC in Sweden, associations between QoC and CAM-use among these patients, and reported aspects of LC-care perceived as particularly positive and negative by patients, as well as suggestions for improving QoC.

    METHODS: Survey data from 94 patient members of the Swedish LC patient organization about CAM-use and QoC as measured by the instrument "Quality from the patient's perspective" were analyzed.

    RESULTS: Fifty (53%) LC-patients used CAM, with 40 of the CAM-users reporting that CAM helped them. The most common CAMs used were dietary supplements and natural remedies, followed by prayer. Significantly more patients reported using prayer and meditation for cure than was the case for other types of CAM used. Less than half the CAM-users reported having spoken with staff from the biomedical health care system about their CAM-use. Patients provided numerous suggestions for improving LC-care in a variety of areas, aiming at a more effective and cohesive care trajectory. No differences in QoC were found between CAM-users and non-CAM-users, but differences in CAM-use i.e. type of CAM, reasons for using CAM, and CAM-provider consulted could be associated with different experiences of care.

    CONCLUSIONS: It is important to recognize that CAM-users are not a homogeneous group but might seek different types of CAMs and CAM-providers in different situations depending on experiences of care.

  • 28.
    Pettersson, S
    et al.
    Karolinska institutet.
    Lövgren, Malin
    Högskolan Dalarana, Stockholms sjukhem.
    Eriksson, L E
    Karolinska Institutet.
    Moberg, C
    Karolinska Institutet.
    Svenungsson, E
    Karolinska Institutet.
    Gunnarsson, I
    Karolinska Institutet.
    Welin Henriksson, E
    Karolinska Institutet.
    An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life.2012In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 41, no 5, p. 383-390Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to explore the most distressing symptoms of systemic lupus erythematosus (SLE) and determine how these relate to health-related quality of life (HRQoL), anxiety/depression, patient demographics, and disease characteristics (duration, activity, organ damage).

    METHODS: In a cross-sectional study, patients with SLE (n = 324, age 18-84 years) gave written responses regarding which SLE-related symptoms they experienced as most difficult. Their responses were categorized. Within each category, patients reporting a specific symptom were compared with non-reporters and analysed for patient demographics, disease duration, and results from the following questionnaires: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Systemic Lupus Activity Measure (SLAM), the SLE Disease Activity Index (SLEDAI), and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology (SLICC/ACR) damage index.

    RESULTS: Twenty-three symptom categories were identified. Fatigue (51%), pain (50%), and musculoskeletal distress (46%) were most frequently reported. Compared with non-reporters, only patients reporting fatigue showed a statistically significant impact on both mental and physical components of HRQoL. Patients with no present symptoms (10%) had higher HRQoL (p < 0.001) and lower levels of depression (p < 0.001), anxiety (p < 0.01), and disease activity (SLAM) (p < 0.001).

    CONCLUSION: Fatigue, pain, or musculoskeletal distress dominated the reported symptoms in approximately half of the patients. Only patients reporting fatigue scored lower on both mental and physical aspects of HRQoL. Our results emphasize the need for further support and interventions to ease the symptom load and improve HRQoL in patients with SLE. Our findings further indicate that this need is particularly urgent for patients with symptoms of pain or fatigue.

  • 29. Tishelman, Carol
    et al.
    Lövgren, Malin
    Broberger, Eva
    Hamberg, Katarina
    Sprangers, Mirjam A G
    Are the most distressing concerns of patients with inoperable lung cancer adequately assessed? A mixed-methods analysis.2010In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 28, no 11, p. 1942-1949Article in journal (Refereed)
    Abstract [en]

    PURPOSE Standardized questionnaires for patient-reported outcomes are generally composed of specified predetermined items, although other areas may also cause patients distress. We therefore studied reports of what was most distressing for 343 patients with inoperable lung cancer (LC) at six time points during the first year postdiagnosis and how these concerns were assessed by three quality-of-life and symptom questionnaires.

    PATIENTS AND METHODS Qualitative analysis of patients' responses to the question "What do you find most distressing at present?" generated 20 categories, with 17 under the dimensions of "bodily distress," "life situation with LC," and "iatrogenic distress." Descriptive and inferential statistical analyses were conducted.

    RESULTS The majority of statements reported as most distressing related to somatic and psychosocial problems, with 26% of patients reporting an overarching form of distress instead of specific problems at some time point. Twenty-seven percent reported some facet of their contact with the health care system as causing them most distress. While 55% to 59% of concerns reported as most distressing were clearly assessed by the European Organisation for Research and Treatment for Cancer Quality of Life Questionnaire Core-30 and Lung Cancer Module instruments, the Memorial Symptom Assessment Scale, and the modified Distress Screening Tool, iatrogenic distress is not specifically targeted by any of the three instruments examined.

    CONCLUSION Using this approach, several distressing issues were found to be commonly reported by this patient group but were not assessed by standardized questionnaires. This highlights the need to carefully consider choice of instrument in relation to study objectives and characteristics of the sample investigated and to consider complementary means of assessment in clinical practice.

  • 30.
    Udo, Camilla
    et al.
    Högskolan Dalarna, Landstinget Dalarna.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska Institutet, Astrid Lindgrens barnsjukhus.
    Lundquist, Gunilla
    Landstinget Dalarna.
    Axelsson, Bertil
    Umeå universitet.
    Palliative care physicians' experiences of end-of-life communication: A focus group study.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 1Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore palliative home care physicians' experiences regarding end-of-life breakpoint communication (BPC). This is a qualitative study where focus group interviews were conducted and analysed using qualitative content analysis. The results show that the participants saw themselves as being responsible for accomplishing BPC, and they were convinced that it should be regarded as a process of communication initiated at an early stage, i.e. proactively. However, BPC was often conducted as a reaction to the patient's sudden deterioration or sometimes not at all. The barriers to achieving proactive BPC included physicians' uncertainty regarding the timing of BPC, primarily due to difficulties in prognostication in terms of time of death, and uncertainty as to what BPC should include and how it should best be approached. Furthermore, there was insufficient documentation regarding previous BPC, which impeded proactive BPC. Although our study shows that physicians are ambitious when it comes to the communication of information to patients and families, there is a need for further training in how to conduct BPC and when to initiate the BPC process. Furthermore, there should be documentation that different professionals can access as this would appear to facilitate a proactive BPC process.

1 - 30 of 30
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf