| 1. |
- Deprez, Julie, 1996-, et al.
(författare)
-
What are the prognostic factors for the development of incontinence-associated dermatitis (IAD) : a protocol for a systematic review and meta-analysis
- 2023
-
Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 13:7
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction Incontinence-associated dermatitis (IAD) is irritant contact dermatitis and skin damage associated with prolonged skin contact with urine and/or faeces. Identifying prognostic factors for the development of IAD may improve management, facilitate prevention and inform future research. Methods and analysis This protocol follows the guidelines of the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols. Prospective and retrospective observational studies or clinical trials in which prognostic factors associated with the development of IAD are described are eligible. There are no restrictions on study setting, time, language, participant characteristics or geographical regions. Reviews, editorials, commentaries, methodological articles, letters to the editor, cross-sectional and case-control studies, and case reports are excluded. MEDLINE, CINAHL, EMBASE and The Cochrane Library will be searched from inception until May 2023. Two independent reviewers will independently evaluate studies. The Quality in Prognostic Studies tool will be used to assess the risk of bias, and the Checklist for Critical Appraisal and Data Extraction for Systematic Reviews of Prediction Modelling Studies-Prognostic Factors checklist will be used for data extraction of the included studies. Separate analyses will be conducted for each identified prognostic factor, with adjusted and unadjusted estimated measures analysed separately. Evidence will be summarised with a meta-analysis when possible, and narratively otherwise. The Q and I 2 statistics will be calculated in order to quantify heterogeneity. The quality of the evidence obtained will be evaluated according to the Grades of Recommendation Assessment, Development and Evaluation guidance. Ethics and dissemination No ethical approval is needed since all data is already publicly accessible. The results of this work will be published in a peer-reviewed scientific journal.
|
|
| 2. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
-
Barn som mist sitt syskon känner sig omogna
- 2012
-
Ingår i: Dagens medicin : nyhetstidningen för hela sjukvården. - Stockholm : Dagens medicin Sverige AB. - 1104-7488. ; :23
-
Tidskriftsartikel (populärvet., debatt m.m.)
|
|
| 3. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
-
Bereaved siblings' perception of participating in research : a nationwide study
- 2013
-
Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 22:2, s. 411-416
-
Tidskriftsartikel (refereegranskat)abstract
- ObjectiveThe objective of the present study is to examine bereaved siblings' perception of research participation.MethodsA Swedish nationwide study on avoidable and modifiable health care‐related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test.ResultsOut of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long‐term perspective compared with men (p = 0.018).ConclusionsNone of the bereaved siblings in this Swedish nationwide study anticipated any long‐term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2–9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance.
|
|
| 4. |
|
|
| 5. |
|
|
| 6. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
-
Cancer-bereaved siblings’ advice to peers : A nationwide follow-up survey
- 2020
-
Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 44:9, s. 561-568
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.
|
|
| 7. |
- Eilegård Wallin, Alexandra, 1975-
(författare)
-
Delaktiga i vården : då mår syskon bättre
- 2015
-
Ingår i: Barn&Cancer. - Stockholm : Barncancerfonden. - 0284-7507. ; :5, s. 14-15
-
Tidskriftsartikel (populärvet., debatt m.m.)
|
|
| 8. |
|
|
| 9. |
|
|
| 10. |
|
|
| 11. |
- Eilegård Wallin, Alexandra, 1975-
(författare)
-
Har synat osynliga barn
- 2012
-
Ingår i: Vestmanlands läns tidning. - Västerås : Vestmanlands läns tidning. - 1104-0181.
-
Tidskriftsartikel (populärvet., debatt m.m.)
|
|
| 12. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
-
Insufficient communication and anxiety in cancer-bereaved siblings : a nationwide long-term follow-up
- 2016
-
Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; October, s. 488-494
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: The purpose of this study was to examine siblings’ long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2–4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3–4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings’ risk of reporting anxiety at follow-up (RR = 2.2(1.1–4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5–18.2)). No such differences were seen when the ill brother or sister was cared for at home.Significance of results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.
|
|
| 13. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
-
Insufficient communication and anxiety in cancer-bereaved siblings : A nationwide long-term follow-up
- 2016
-
Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 14:5, s. 488-494
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home.Significance of results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.
|
|
| 14. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
-
Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier
- 2013
-
Ingår i: Psycho-Oncology. - : Wiley-Blackwell. - 1057-9249 .- 1099-1611. ; 22:3, s. 683-691
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population.METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test.RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar.CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression.
|
|
| 15. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
-
Risk of parental dissolution of partnership following the loss of a child to cancer : A population-based long-term follow-up
- 2010
-
Ingår i: Archives of Pediatrics & Adolescent Medicine. - Chicago : American Medical Association. - 1072-4710 .- 1538-3628. ; 164:1, s. 100-101
-
Tidskriftsartikel (refereegranskat)abstract
- A common belief is that bereaved parents are more likely to separate than others, but previous research has been unable to settle this issue owing to conflicting findings. Parents of a child with cancer are at increased risk of psychological distress and possibly also marital strain. Sirki et al studied parents who lost a child during active cancer treatment or terminal care and found that divorce was significantly more common among couples with a child in terminal care compared with a child in active cancer therapy. No conclusive studies on long-term marital status in parents having lost a child to cancer have been conducted. Therefore, we assessed parental dissolution of a partnership 4 to 9 years following the loss of a child to cancer compared with parents from the general population.
|
|
| 16. |
|
|
| 17. |
|
|
| 18. |
|
|
| 19. |
- Eilegård Wallin, Alexandra, 1975-
(författare)
-
The loss of a child to cancer : focusing on siblings
- 2012
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aims: The overall aim of this thesis was to investigate the long-term psychological health consequences in bereaved families of children who have died from cancer, with a focus on the siblings. Further, we investigated if health-care and family related stressors might affect the long-term psychological health in bereaved siblings. Part of the aim was also to examine bereaved siblings’ experience of participation in a research study about their loss. Subjects and Methods: In the initial study, parents who lost a child to cancer four to nine years earlier in Sweden were asked to participate in a nationwide follow-up study, 80% (449/561) participated together with a group of non-bereaved parents from the general population, 69% (457/659). A study-specific, anonymous questionnaire assessing anxiety, depression, quality-of-life and marital status together with a number of other outcomes were distributed to participating parents. In another nationwide follow-up study, we contacted 240 siblings, in Sweden, who had lost a brother or sister to cancer between the years 2000 and 2007; among those, 73% (174) participated in our study. A control group of non-bereaved siblings, matched for age, gender and place of residence, were also invited, 75% (219/293) participated. A study-specific and anonymous questionnaire assessed the siblings’ experience of participating in the study, their psychological health (anxiety, depression), and their communication with family and others prior to and after the death of their brother or sister, together with other factors. Results: Bereaved parents were more likely to be living with the child’s other parent, 74% (329/442) compared to non-bereaved parents, 69% (312/452), RR=1.1 (1.0-1.1). None, (0/168), of the bereaved siblings thought that their participation in the study would effect them negatively long-term. Ninety-nine percent of the siblings (171/173) found it valuable to conduct such a study and a vast majority, 84% (142/169) found it to be a positive experience. At follow-up self-assessed low self-esteem (p=0.002), difficulties falling asleep (p=0.005) and low personal maturity (p=0.007) were more prevalent among bereaved siblings. However, anxiety (p=0.298) and depression (p=0.946) according to the Hospital Anxiety and Depression Scale (HADS) were similarly distributed between bereaved and non-bereaved siblings. Siblings who avoided the health-care professionals, for fear of being in their way during their brother or sisters last month in life, reported an increased risk of anxiety, RR=2.2 (1.1-4.6) as compared with those who did not avoid the health-care professionals. Siblings who talked less about their feelings regarding their brother or sister’s illness reported an increased risk of anxiety, RR=2.8 (1.3-6.2) as compared with those who talked more frequently. An increased risk of anxiety was also prevalent among siblings who avoided talking to their parents about their deceased brother or sister, out of respect for their parent’s feelings, RR=2.4 (1.1-5.4) as compared with those siblings who reported talking to their parents about the deceased child. Conclusions: Parents bereaved due to cancer are not more likely to be separated or divorced from the child’s other parent compared with non-bereaved parents. Bereaved siblings are at increased risk of low self-esteem, low personal maturity and sleeping difficulties as compared with non-bereaved peers. Avoiding health-care professionals prior to the brother or sisters death and avoiding talking to their parents following the loss increased the bereaved siblings’ risk of long-term (two to nine years following the loss) anxiety. Most siblings reported finding it valuable to participate in this type of research.
|
|
| 20. |
|
|
| 21. |
|
|
| 22. |
- Eilertsen, Mary-Elizabeth Bradley, et al.
(författare)
-
Cancer-bereaved siblings' positive and negative memories and experiences of illness and death : A nationwide follow-up.
- 2018
-
Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:4, s. 406-413
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 23. |
- 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.
|
|
| 24. |
- 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.
|
|
| 25. |
- 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.
|
|
| 26. |
|
|
| 27. |
- Lövgren, Malin, et al.
(författare)
-
Spirituality and religious coping are related to cancer-bereaved siblings' long-term grief
- 2019
-
Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 17:2, s. 138-142
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: 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.
|
|
| 28. |
- Rasouli, Omid, et al.
(författare)
-
Bereaved parents' quality of life : resilience and professional support
- 2023
-
Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 13, s. e1029-e1037
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: The study aimed to compare the quality of life (QoL) among cancer-bereaved parents with a control group and explore how resilience and support from healthcare professionals associated with QoL of parents 2-8 years after the loss of a child to cancer.METHODS: This nationwide, cross-sectional survey was administered among parents (n=161) who lost their child to cancer between 2009 and 2014, compared with a matched control parent group (n=77). A study-specific questionnaire, Resilience Scale for Adults (six factors: 'Perception of self', 'Planned future', 'Social competence', 'Structured style', 'Family cohesion' and 'Social resources'), and a single-item measure of parents' QoL were included for the study.RESULTS: There was a lower QoL in both bereaved parents (mean=5.1) compared with the control parents (mean=5.8) (p<0.001). Two resilience factors, 'Perception of self' (OR=1.8, p=0.004) and 'Planned future' (OR=2.05, p<0.001), and given sufficient information during the child's last month (OR=2.63, p=0.003) were positively associated with long-term QoL in cancer-bereaved parents.CONCLUSION: The findings indicate lower QoL among both fathers and mothers 2-8 years after losing a child to cancer. The study also highlights the positive role of resilience and the importance of informational support on long-term QoL in cancer-bereaved parents. Bereavement support should be tailored for supporting individual needs.
|
|
| 29. |
- Svanberg, Anncarin, et al.
(författare)
-
Patients’ Subjective Experiences of Outpatient- and InpatientCare during Autologous Hematopoietic Stem Cell Transplantation – A Quantitative Questionnaire Study
- 2022
-
Ingår i: Journal of Nursing & Care. - : Hilaris SRL. - 2167-1168. ; 11:12
-
Tidskriftsartikel (refereegranskat)abstract
- Background: As early as 1997 it was stated that the outpatient model when patients are cared for in their homes (outpatient care) in connectionwith hematopoietic stemcell transplantation (hSCT), gave positive results regarding safety and effectiveness. But in the year of 2022, in manycountries, it is still an offer and not a standard treatment. Despite long international and national experience of outpatient treatment at hSCT, manypatients are still fully cared for in hospitals.Purpose: To describe the patients’ subjective experiences of outpatient (OP)- and inpatient (IP) care during autologous hematopoietic stem celltransplantation and to ensure the quality of care outside hospital environment as a form of care in order to improve the patient's experience ofsafety and security at autologous hematopoietic stem cell transplantation at a University Hospital in Sweden. And, to evaluate physicians' andnurses’ assessment using a standardized assessment form of the patient's self-care ability when cared for outside the hospital.Methods: A quantitative questionnaire study with pre-selected response alternatives and open-ended questions.Results: Most patients, regardless of the form of care, OP or IP care, felt satisfied with the information given by the care provider. Nearly all ofthe patients who were cared for in hospital and who responded to the questionnaire, experienced anxiety during the care period compared withpatients who were cared for in a home environment responding to the questionnaire, where the vast majority did not experience any anxiety duringthe care period.Conclusion: Most patients indicate, as shown in other studies, that they felt satisfied with the care and information they received in connectionwith hematopoietic stem cell transplantation but patients in IP care felt more anxiety than patients in OP care. Regarding evaluating physicians'and nurses’ assessment using a standardized assessment form of the patient's self-care ability when cared for outside the hospital, there wereno notable differences in the assessment.Clinical relevance: A questionnaire provides the healthcare provider with a basis for developing and improving in clinical care for patientsreceiving hSCT. Regarding attention to the mental well-being equated with the physical well-being it is a clinical task for healthcare providers. Awell-developed basis for assessing the patient's level of care can ensure the best care.
|
|
| 30. |
- 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.
|
|
| 31. |
- Vegsund, Hilde Kristin, et al.
(författare)
-
Resilience as a predictive factor towards a healthy adjustment to grief after the loss of a child to cancer
- 2019
-
Ingår i: PLOS ONE. - San Francisco : Public Library of Science (PLoS). - 1932-6203. ; 14:3
-
Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss.METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss.RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief.CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.
|
|
| 32. |
- Vegsund, H. -K, et al.
(författare)
-
Translation and linguistic validation of a swedish study-specific questionnaire for use among Norwegian parents who lost a child to cancer
- 2018
-
Ingår i: Social Sciences. - : MDPI AG. - 2076-0760. ; 7:10
-
Tidskriftsartikel (refereegranskat)abstract
- Research is needed on how to help cancer-bereaved parents, as they are considered to be a vulnerable population and they are at risk of developing ill health following the loss of a child to cancer. The purpose of the present study was to translate and linguistically validate a Swedish study-specific questionnaire that was developed for Swedish cancer-bereaved parents. The translated questionnaire will be used in a nationwide study in Norway. Methods: Forward and backward translations of the Swedish study-specific questionnaire were conducted, followed by linguistic validation based on telephone interviews with six Norwegian cancer-bereaved parents. Result: It was found that several medical terms and conceptual issues were difficult for the Norwegian parents to understand. There were also four issues regarding the response alternatives. Conclusions: Although Sweden and Norway have quite similar cultures and languages, the results off this pilot study show that, to ensure the quality of a translated questionnaire, linguistic validation as well as translation is necessary.
|
|
