| 1. |
- Carlsson, Tommy, et al.
(författare)
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Written narratives from immigrants following a prenatal diagnosis : qualitative exploratory study
- 2019
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Ingår i: BMC Pregnancy and Childbirth. - : Springer Science and Business Media LLC. - 1471-2393 .- 1471-2393. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Expectant parents often have optimistic expectations of the obstetric ultrasound examination and are unprepared for a diagnosis of foetal anomaly. Research that gives voice to the experiences of immigrants faced with a prenatal diagnosis is scarce, and there is a need for more exploratory research that provides insights into the experiences of these persons. The aim of this study was to explore narratives of experiences of immigrants with Arabic or Sorani interpreter needs when presented with a prenatal diagnosis of foetal anomaly.METHODS: A web-based tool with open-ended questions was distributed via Arabic and Kurdish non-profit associations and general women's associations in Sweden. Responses were received from six women and analysed with qualitative content analysis.RESULTS: The analysis resulted in three themes: (1) an unexpected hurricane of emotions, (2) trying to understand the situation though information in an unfamiliar language, and (3) being cared for in a country with accessible obstetric care and where induced abortion is legal.CONCLUSIONS: Immigrant women described an unexpected personal tragedy when faced with a prenatal diagnosis of foetal anomaly, and emphasised the importance of respectful and empathic psychological support. Their experiences of insufficient and incomprehensible information call attention to the importance of tailored approaches and the use of adequate medical interpreting services. There is a need for more descriptive studies that investigate decision-making and preparedness for induced abortion among immigrants faced with a prenatal diagnosis.
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| 2. |
- Holm, Maja, 1982-, et al.
(författare)
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How parents of dependent children reason about their partner's impending death due to cancer
- 2021
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683.
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Tidskriftsartikel (refereegranskat)abstract
- This paper explores how bereaved parents with dependent children reasoned about their partner's impending death due to cancer. Questionnaires were used to collect data from 42 cancer-bereaved parents of dependent children in Sweden. The results showed that most of the parents had thought, at least once, that death would be best for their partner's own sake. A few parents had also thought that it would be best for everyone if their partner died. Many parents had a wish to keep up hope, no matter what. However, living with a partner with advanced illness and dependent children was described as extremely stressful.
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| 3. |
- Holm, Maja, 1982-, et al.
(författare)
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Parenting a child with cancer and maintaining a healthy couple relationship : Findings from the Family Talk Intervention
- 2024
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Ingår i: Pediatric Blood & Cancer. - : John Wiley & Sons. - 1545-5009 .- 1545-5017. ; 71:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Despite the challenges that caring for a child with cancer brings for parents, little knowledge is available concerning the effects on the parents’ couple relationship. Furthermore, few interventions have been designed to support parents in their couple relationship. The aim of this paper was, therefore, to explore parents’ experiences of their couple relationship while having a dependent child with cancer and the support they received from a family-based intervention, the Family Talk Intervention (FTI).Methods Data for this paper were taken from semi-structured interviews performed in a pilot study of the FTI in the context of pediatric oncology. In total, 22 couples were interviewed after participating in the FTI. The interviews were transcribed and analyzed using qualitative content analysis.Results Parents described how maintaining a couple relationship while living with childhood cancer could be very challenging and was not given the highest priority. The FTI was considered a way of providing important support to the couple and a chance for them to sit down together and listen to each other's perspectives on the situation. Parents described that the FTI had helped them gain an increased mutual understanding, sometimes also helping them to realize that they needed more extensive professional support in their relationship.Conclusions Living with childhood cancer and upholding a healthy couple relationship is challenging for parents. The FTI has the potential to support couples, mainly by providing opportunities for parents to communicate with each other. However, some couples may be in need of a tailored clinical intervention.
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| 4. |
- Holm, Maja, et al.
(författare)
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Sources of social support and its importance for cancer-bereaved spouses and their minor children : A cross-sectional study
- 2022
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 46:4, s. 996-1002
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to evaluate the sources from which bereaved families with minor children reported receiving social support after the death of a parent/partner and which sources they perceived as important. Using an online platform, 23 adolescents, 42 parents, and 27 parent proxies for children aged 4-11 years, completed questionnaires. Family and friends were valued as the most important sources of social support, while social support from societal institutions, such as health care and school, was considered less important, and insufficient.
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| 5. |
- Jalmsell, Li, et al.
(författare)
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On the child's own initiative : parents communicate with their dying child about death
- 2015
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 39:2, s. 111-117
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Tidskriftsartikel (refereegranskat)abstract
- Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about deathwith their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.
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| 6. |
- Jalmsell, Li, et al.
(författare)
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Transition to noncurative end-of-life care in paediatric oncology : a nationwide follow-up in Sweden
- 2013
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 102:7, s. 744-748
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Tidskriftsartikel (refereegranskat)abstract
- Aim To estimate whether and when children dying from a malignancy are recognized as being beyond cure and to study patterns of care the last weeks of life. Methods A nationwide retrospective medical record review was conducted. Medical records of 95 children (60% of eligible children) who died from a malignancy 2007-2009 in Sweden were studied. Results Eighty-three children (87%) were treated without curative intent at the time of death. Children with haematological malignancies were less likely to be recognized as being beyond cure than children with brain tumours [relative risks (RR) 0.7; 95% confidence interval (CI) 0.6-0.9] or solid tumours (RR 0.8; 0.6-1.0). The transition to noncurative care varied from the last day of life to over four years prior to death (median 60days). Children with haematological malignancies were treated with a curative intent closer to death and were also given chemotherapy (RR 5.5; 1.3-22.9), transfusions (RR 2.0; 1.0-4.0) and antibiotics (RR 5.3; 1.8-15.5) more frequently than children with brain tumours the last weeks of life. Conclusion The majority of children dying from a malignancy were treated with noncurative intent at the time of death. The timing of a transition in care varied with the diagnoses, being closer to death in children with haematological malignancies.
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| 7. |
- Klarare, Anna, et al.
(författare)
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Leadership in specialist palliative home care teams : A qualitative study
- 2020
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Ingår i: Journal of Nursing Management. - : Hindawi Limited. - 0966-0429 .- 1365-2834. ; 28:1, s. 102-111
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Tidskriftsartikel (refereegranskat)abstract
- AimThe aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.BackgroundFor effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.MethodsQualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.ResultsTeam leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.ConclusionTeam leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.Implications for Nursing ManagementTeam leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.
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| 8. |
- Omerov, Pernilla, et al.
(författare)
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Homeless persons' experiences of health- and social care : A systematic integrative review
- 2020
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Ingår i: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 28:1, s. 1-11
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Forskningsöversikt (refereegranskat)abstract
- Homelessness is associated with high risks of morbidity and premature death. Many interventions aimed to improve physical and mental health exist, but do not reach the population of persons experiencing homelessness. Despite the widely reported unmet healthcare needs, more information about the barriers and facilitators that affect access to care for persons experiencing homelessness is needed. A systematic integrative review was performed to explore experiences and needs of health- and social care for persons experiencing homelessness. The following databases were searched: AMED, ASSIA, Academic Search Complete, CINAHL, Cochrane library, Nursing and Allied Database, PsycInfo, PubMed, Scopus and Web of Science Core Collection. Twenty-two studies met the inclusion criteria of empirical studies with adult persons experiencing homelessness, English language, and published 2008-2018. Fifty percent of the studies were of qualitative and quantitative design, respectively. Most studies (73%) were conducted in the United States (n=11) and Canada (n=5). The analysis resulted in three themes Unmet basic human needs, Interpersonal dimensions of access to care, and Structural and organizational aspects to meet needs. The findings highlight that persons in homelessness often must prioritize provision for basic human needs, such as finding shelter and food, over getting health- and social care. Bureaucracy and rigid opening hours, as well as discrimination and stigma, hinder these persons' access to health- and social care.
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| 9. |
- Sveen, Josefin, et al.
(författare)
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They still grieve : a nationwide follow‐up of young adults 2–9 years after losing a sibling to cancer
- 2014
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Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 23:6, s. 658-664
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors.Methods: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent.Results: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss.Conclusion: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death. Keywords: bereavement; cancer; grief; oncology; sibling loss; young adult loss.
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