| 61. |
- Carlsson, Tommy, et al.
(författare)
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Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect : An explorative study to gain insights into perspectives on future research
- 2016
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Ingår i: Research Involvement and Engagement. - : Springer Science and Business Media LLC. - 2056-7529. ; 2:35
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundA prenatal diagnosis of a congenital heart defect in the fetus is a traumatic life event for pregnant women and their partners. Previous research indicates a need for research that takes steps to support these individuals following the diagnosis. Patient and public involvement is a proposed method of identifying relevant research topics, leading to patient-focused research protocols and relevant support interventions.The overarching aim of this study was to gain insights into relevant future research topics among persons faced with a prenatal diagnosis of congenital heart defect in the fetus.MethodsOne group of parents to prenatally diagnosed children with a congenital heart defect (n = 5) and one group of individuals with experience of termination of a pregnancy following a prenatal diagnosis of a congenital heart defect (n = 5) were purposefully recruited. Each group of representatives was involved in a face-to-face focus group discussion, analyzed through qualitative content analysis.ResultsThe representatives suggested a need for future research that addresses informational support in the forms as supplemental written information or follow-up consultations. Moreover, interventions that offer emotional support were suggested, in the forms of peer support or additional professional psychosocial support.ConclusionSeveral interventions were suggested by patient representatives, indicating a need for multiple intervention studies to be conducted in the context of a prenatal diagnosis of a congenital heart defect in the fetus. We recommend that future studies test supplemental written information, follow-up consultations, peer support, and additional professionals psychosocial support following the diagnosis.
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| 62. |
- Carlsson, Tommy, et al.
(författare)
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Peer support among parents of children with congenital heart defects : A qualitative analysis of written responses submitted via an online survey
- 2020
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 76:12, s. 3528-3536
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To explore experiences of peer support among parents of children with congenital heart defects. Design: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden. Methods: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation. Results: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities. Conclusion: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some. Impact: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.
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| 63. |
- Carlsson, Tommy, et al.
(författare)
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Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden
- 2022
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Ingår i: Journal of Family Nursing. - : SAGE Publications. - 1074-8407 .- 1552-549X. ; 28:2, s. 142-150
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe experiences of peer support among mothers of children with congenital heart defects. Ten mothers were interviewed through a semi-structured approach and interviews were analyzed with systematic text condensation. The respondents established various channels used for peer support and navigated between the channels depending on what type of information or support they needed. Through the channels, they found peers they developed strong friendships with and who they relied on for emotional support. Communicating with peers involved the reciprocal exchange of unique emotional support between peers who understand each other as well as the exchange of information derived from their collective knowledge, and thus, difficult to find without the help of peers. The findings illustrate the potential strengths of establishing reliable collaboration and liaisons between clinical units and peer support networks.
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| 64. |
- Carlsson, Tommy, et al.
(författare)
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Quality of Patient Information Websites About Congenital Heart Defects : Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis
- 2017
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Ingår i: Interactive Journal of Medical Research. - : JMIR Publications Inc.. - 1929-073X. ; 6:2
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Tidskriftsartikel (refereegranskat)abstract
- Background: When a heart defect is prenatally diagnosed in the fetus, expectant parents experience a great need for information about various topics. After the diagnosis, the Web is used for supplemental information, and the scarcity of research calls attention to the need to explore patient information websites from the perspectives of the intended consumers.Objective: The overarching aim of this study was to explore the quality of Swedish patient information websites about congenital heart defects, from the perspectives of individuals with experience of a prenatal diagnosis of congenital heart defect in the fetus.Methods: This was a mixed-methods study of websites identified through systematic searches in the two most used Web-based search engines. Of the total 80 screened hits, 10 hits led to patient information websites about congenital heart defects. A quality assessment tool inspired by a previous study was used to evaluate each website’s appearance, details, relevance, suitability, information about treatment choices, and overall quality. Answers were given on a 5-point Likert scale, ranging from 1, representing the lowest score, to 5, representing the highest score. Each website was assessed individually by persons with experience of continued (n=4) and terminated (n=5) pregnancy following a prenatal diagnosis. Assessments were analyzed with Kendall’s coefficient of concordance W, Mann-Whitney U test, Friedman’s test, and a Wilcoxon-Nemenyi-McDonald-Thompson test. In addition, each assessor submitted written responses to open-ended questions in the quality assessment tool, and two joint focus group discussions were conducted with each group of assessors. The qualitative data were analyzed with inductive manifest content analysis.Results: Assessments represented a low score (median=2.0) for treatment choices and moderate scores (median=3.0) for appearance, details, relevance, suitability, and overall quality. No website had a median of the highest achievable score for any of the questions in the quality assessment tool. Medians of the lowest achievable score were found in questions about treatment choices (n=4 websites), details (n=2 websites), suitability (n=1 website), and overall quality (n=1 website). Websites had significantly different scores for appearance (P=.01), details (P<.001), relevance (P<.001), suitability (P<.001), treatment choices (P=.04), and overall quality (P<.001). The content analysis of the qualitative data generated six categories: (1) advertisements, (2) comprehensiveness, (3) design, (4) illustrations and pictures, (5) language, and (6) trustworthiness. Various issues with the included websites were highlighted, including the use of inappropriate advertisements, biased information, poor illustrations, complex language, and poor trustworthiness.Conclusions: From the perspectives of the intended consumers, patient information websites about congenital heart defects are, to a large extent, inadequate tools for supplemental information following a prenatal diagnosis. Health professionals should initiate discussions with patients about their intentions to use the Web, inform them about the varied quality in the Web-based landscape, and offer recommendations for appropriate Web-based sources.
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| 65. |
- Carlsson, Tommy, et al.
(författare)
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The emotional process from diagnosis to birth following a prenatal diagnosis of fetal anomaly : A qualitative study of messages in online discussion boards
- 2017
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Ingår i: Midwifery. - : Elsevier BV. - 0266-6138 .- 1532-3099. ; 48, s. 53-59
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Tidskriftsartikel (refereegranskat)abstract
- Objective: to explore written statements found in online discussion boards where parents currently expecting, or with previous experience of expecting, a child with a prenatally diagnosed congenital anomaly communicate about their emotional process from diagnosis to birth.Design: cross-sectional qualitative study of messages in public online discussion boards.Setting: Swedish public discussion boards about reproductive subjects.Sample: ten pregnant women and eight parents (of children with prenatal diagnoses) who had written 852 messages in five threads in Swedish online discussion boards identified via systematic searches.Measurements and findings: three phases were identified in the process of moving from the diagnosis to the birth: shock, existential crisis, and life remodeling. The people posting message (‘posters’) moved from initial shock to existential crisis and, lastly, a phase of remodeling life later in the pregnancy. During the pregnancy, considerable worries about both antenatal and postnatal aspects were expressed. To cope with their situation, the posters distanced themselves from the diagnoses, vented their feelings, sought control, and obtained practical support from friends and relatives.Key conclusions: expectant parents faced with a prenatal diagnosis move from initial shock to a phase of life remodeling and acceptance. Burdened with considerable worries, expectant parents cope with their situation through informational, emotional, and instrumental support from health professionals, family, friends, and peers.Implications for practice: health professionals should make sure that expectant parents feel involved in planning their children's postnatal care, that they are offered sufficient information, and that they have access to emotional and instrumental support structures.
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| 66. |
- 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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| 67. |
- Cernvall, Martin, 1980-, et al.
(författare)
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A pilot study of user satisfaction and perceived helpfulness of the Swedish version of the mobile app PTSD Coach
- 2018
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Ingår i: European Journal of Psychotraumatology. - : Informa UK Limited. - 2000-8198 .- 2000-8066. ; 9:Suppl 1
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Tidskriftsartikel (refereegranskat)abstract
- Background: There is a need for accessible interventions in the aftermath of traumatic events with documented efficacy for preventing or reducing negative mental health consequences. The PTSD Coach is a mobile app that has shown to be effective in reducing symptoms of posttraumatic stress (PTSS). Objective: The purpose of the current study was to evaluate the user satisfaction, perceived helpfulness and potential reductions of PTSS and symptoms of depression among participants using the Swedish version of the PTSD Coach. Method: This was an uncontrolled pre-test post-test open trial including participants recruited from the community via advertisement and from an ongoing observational study who had experienced a potentially traumatic event in the last five years. Participants had access to the Swedish PTSD Coach app for four weeks. Results: Eleven participants (mean age = 38.6, female = 8) completed the study. Nine of the participants met criteria for full or partial PTSD. Results from the PTSD Coach Survey indicated that participants found the app slightly to moderately helpful and were slightly to moderately satisfied with the app. Nominal but not statistically significant reductions of medium effect sizes in PTSS (PCL-5) and depression (PHQ-9) from pre- to post-assessment were found. In interviews, participants indicated that they found elements such as learning about PTSD, breathing exercises and monitoring symptoms helpful in managing symptoms. However, several participants indicated that they had not used the app as much as they had intended to. Participants also had suggestions for improvements such as enhanced app structure and better guidance regarding how to use the app. Conclusions: The perceived helpfulness and user satisfaction were slightly lower compared to research on the original version of the app. Experiences from the study are discussed and a future controlled study of the Swedish version of the PTSD Coach is suggested.
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| 68. |
- Cronqvist, Agneta, et al.
(författare)
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Dissonant imperatives in nursing : a conceptualization of stress in intensive care in Sweden.
- 2001
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Ingår i: Intensive & Critical Care Nursing. - : Elsevier BV. - 0964-3397 .- 1532-4036. ; 17:4, s. 228-36
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to explore nurses' experiences of stress within the context of intensive care. The theoretical perspective for the study builds on a cognitive-phenomenological-transactional theory of stress and coping and the theory of cognitive dissonance. Respondents were 36 registered nurses recruited from 10 intensive care units (general, neonatal and thoracic units). Their experience as nurses ranged from one to 32 years. These intensive care units had similar structural characteristics, namely a high working pace, advanced technology, constrained finances, frequent reorganizations, a shortage of registered nurses and all were filled to overcapacity. Data were collected in open-ended interviews that were audio-taped and transcribed. A content analysis identified four contradictory themes: (1) controlled by the work situation--needing to be in control; (2) constrained by prioritization--wanting to do more; (3) lacking the authority to act--knowing that something should be done; and (4) professional distance--interpersonal involvement. These four themes were synthesized at a higher level of abstraction into a main theme: stress induced by dissonant imperatives, which conceptualizes nursing stress in the intensive care unit. In conclusion, dissonant imperatives might lead to stress in intensive care nursing.
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| 69. |
- Dahlkild-Öhman, Gunilla, et al.
(författare)
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Inequality regimes and men’s positions in social work
- 2013
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Ingår i: Gender, Work and Organization. - : Wiley. - 0968-6673 .- 1468-0432. ; 20:1, s. 85-99
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this article is to contribute to the exploration of men’s positions in professions numerically dominated by women through an in depth analysis of the gendering practices in groups of social workers. The empirical material consists of interviews with three work groups in Sweden, each with one man and several women as members. The analysis focuses upon gendering practices in the interview setting. It shows how the positions occupied by the men in the sample confirm or undermine constructions of masculinity as dominance. Furthermore, it is argued that to fully understand men’s positions in these groups the analysis needs take other forms of inequality into account in addition to gender. It is shown that in the empirical cases under scrutiny men’s positions are shaped by regimes of inequality where age and gender relations, as well as notions of professional experience, are interconnected.
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| 70. |
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Dignity in Care for Older People
- 2009. - 1
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Samlingsverk (redaktörskap) (refereegranskat)abstract
- The notion of quality of life has for several decades been well-established in ethical debate about health care and the care of older people. Dignity in Care for Older People highlights the notion of dignity within the care of the elderly, focusing on the importance of theoretical concepts. Primarily based on a Research Project, Dignity and Older Europeans, funded by the European Commission, this book provides a thorough investigation of the concept of dignity and related concepts such as quality of life and autonomy. It includes a chapter devoted to the dignity of human embodiment, emphasizing the importance of the notion of the lived body in the context of elderly care. As a result of the conceptual study a model of dignity emerges in which four variants of dignity stand out: dignity of merit, dignity as moral status, dignity of identity and Menschenwurde (the specifically human value). From this follows a discussion of how these variants of dignity can be used in characterizing the care of the elderly. The notions of dignity and dignified care are discussed particularly in relation to demented persons and dying persons. The book also contains a chapter on the dignity of the dead person. International in focus, Dignity in Care for Older People provides a contemporary discussion of the care of older people, and will be of use to qualified nurses and social care practitioners working with older people, as well as those on ethics and gerontology courses
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