| 1. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Development of a programme for web-based support for children – a participatory design in children and families with urinary tract disorders.
- 2016
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Ingår i: JSM Health Education and Primary Health Care. ; 1:1
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Tidskriftsartikel (refereegranskat)abstract
- Children with urinary tract and bowel malformation often realize that they do not have the same body and genital appearance as their schoolmates. This sensitive matter affects their integrity, a private problem that not is discussed in public. It is a lack of prevention program, particularly developed in cooperation with the children. The goal with the present project was to get tools for support in daily live. The aim of the study was together with the children, family, hospital staff and researcher; develop a web-based support program to be used in home setting. The study was conducted between 2011and2015. A participatory design was employed following the approach in person centred care with a partnership between 22 children 3-7 years old, their families and the research group of 8 persons. The program was built on stories about two children, their actions in different situations and with images to support the stories. Open conversations were used for the data collection and data were analysed using qualitative content analysis. Steps of 8 themes were formed from the developing of the web-based program, which offered a user-friendly support in daily life for the children with long-term illnesses and family.
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| 2. |
- Simeonsdotter Svensson, Agneta, 1950, et al.
(författare)
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Health, Wellbeing and Self-Esteem: Web-Based Support in Children with Urogenital or Bowel Malformation
- 2016
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Ingår i: Open Journal of Pediatrics. - : Scientific Research Publishing, Inc.. - 2160-8741 .- 2160-8776. ; 6:1, s. 82-90
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Tidskriftsartikel (refereegranskat)abstract
- 1. Introduction Long-term illness is usually a challenge for both children and their families [1]. Children with urogenital malformation or bowel disturbances are a vulnerable group who are at greater risk of experiencing ill health. They are often supported in situations related to their malformation by parents and others. When at school, the child suddenly has to face and cope with situations they are not used to; they often feel excluded, afraid of relationships with the opposite sex and subjected to bullying [2]-[4]. They express a great need for support in daily life [5]-[8]. The social and emotional consequences of long-term illness need to be addressed [9]. However, there is lack of studies investigating prevention of ill health in this group of children. Health promotion is the process of enabling people to increase their control over, and to improve their health. To reach a state of complete physical, mental and social wellbeing, the child must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment. Health is, therefore, seen as a resource, not the objective, in everyday life. Health is a positive concept that emphasizes social and personal resources, as well as physical capacities. Health promotion is not just the responsibility of the health sector; it goes beyond healthy lifestyles to wellbeing [10]. However, the needs of children with the same disease are not necessarily the same. Person-centred care (PCC) is explained as focusing on the person and not on the illness. The purpose is to make care and treatment more personal and to understand behaviour and symptoms from the perspective of the individual patient. To do this, it is important to proceed from knowledge of the sick person’s living patterns and priorities [11]. Studies have been conducted with positive outcomes, mainly for adults with long-term illness but also for young people [12]-[15]. The present study is part of a larger project studying health and wellbeing using person-centred, web-based learning in children with severe urogenital, urological and bowel malformations [16] [17]. Findings from the studies in this project are qualitative in design and show the development of the intervention. The use of SKYPE for interviewing children was also evaluated. This method can be used in the child’s home and is convenient for both the child and the family. The ability to use the body language also facilitated the understanding of the conversation, particularly in the youngest children. The intervention could identify wellbeing, resources, needs, and wishes. The children were interested and able to discuss relations, emotions and their own body. That learning had taken place was shown by realizing something new, reflecting on it, and then using the knowledge in a new context in their daily lives. The aim of the study was to investigate the effect on health/wellbeing and self-esteem, before and after oneyear intervention in children aged 3 - 7 years born with malformations in the urethra, bladder, genitals and/or bowel. The results of the intervention, person-centred, web-based learning support, are compared with the findings in a control group of healthy children.
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| 3. |
- Berg, Linda, 1961, et al.
(författare)
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Characterisation of Cancer Support and Rehabilitation Programmes: A Swedish Multiple Case Study
- 2014
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Ingår i: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 8, s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.
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| 4. |
- Björk, Maria, et al.
(författare)
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Att vara barn och möta sjukdom
- 2012
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Ingår i: Att möta familjer inom vård och omsorg. - Lund : Studentlittartur AB. - 9789144072661 ; , s. 191-206
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Bokkapitel (populärvet., debatt m.m.)
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| 5. |
- Bohlin, V., et al.
(författare)
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Child health care nurses' experiences of language barriers during home visits
- 2022
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Ingår i: Public Health Nursing. - : Wiley. - 0737-1209 .- 1525-1446. ; 39:1, s. 146-152
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Tidskriftsartikel (refereegranskat)abstract
- Objective The aim of the study was to explore the communication tools that child healthcare nurses can use during home visits to families when language barriers exist. Design Qualitative study using data collected from focus group sessions. Sample Six semi-structured focus group interviews with twenty nurses in child healthcare services. Measurements The results were analyzed with a thematic content analysis. Results The analysis resulted in two themes: Using pictures as support in the conversation, with subthemes Not using pictures as support, Wanting to know how to use pictures as support, Pictures as support for invitations, Different types of pictures as support, and Alternative means of communication with the subthemes Possibilities of using an interpreter, Obstacles to using an interpreter, Mixed communication. Conclusion If language barriers are present during home visits, decision-making nurses in Child Health Care (CHC) put families in an unequal position when communicating with them. These results point to a need for more education, guidelines and support regarding alternative and augmentative communication (AAC) tools and structures to assist in overcoming language barriers.
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| 6. |
- Bray, L., et al.
(författare)
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Children's pictures of COVID-19 and measures to mitigate its spread: An international qualitative study
- 2021
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Ingår i: Health Education Journal. - : SAGE Publications. - 0017-8969 .- 1748-8176. ; 80:7, s. 811-832
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To gain insight into children's health-related knowledge and understanding of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV2) and COVID-19, and measures adopted to mitigate transmission. Design: A child-centred qualitative creative element embedded in an online mixed-methods survey of children aged 7-12 years. Setting: Children participated in the study in six countries - the UK, Australia, Sweden, Brazil, Spain and Canada. Method: A qualitative creative component, embedded in an online survey, prompted children to draw and label a picture. Children were recruited via their parents using the researchers' professional social media accounts, through known contacts, media and websites from health organisations within each country. Analysis of the form and content of the children's pictures took place. Results: A total of 128 children (mean age 9.2 years) submitted either a hand-drawn (n = 111) or digitally created (n = 17) picture. Four main themes were identified which related to children's health-related knowledge of (1) COVID-19 and how it is transmitted; (2) measures and actions to mitigate transmission; (3) places of safety during the pandemic; and (4) children's role in mitigating COVID-19 transmission. Conclusion: Children's pictures indicated a good understanding of the virus, how it spreads and how to mitigate transmission. Children depicted their actions during the pandemic as protecting themselves, their families and wider society.
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| 7. |
- Carlsson, Lotta, et al.
(författare)
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Nurses’ Experiences of Process-Oriented Supervision—Acquiring New Approaches to Demanding Situations
- 2020
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Ingår i: Open Journal of Nursing. - : Scientific Research Publishing, Inc.. - 2162-5344 .- 2162-5336. ; April:10, s. 449-461
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Tidskriftsartikel (refereegranskat)abstract
- Background: Providing nursing care for patients and relatives requires a great effort from a nurse. It is therefore important for the nurse to have the opportunity to reflect on the caring acts included in process-oriented nursing supervision (PRONS). The overall objective of the nursing supervision is to support the professional development identity, competences, skills and ethics in different situations in nursing care. Aim: To investigate nurses’ experiences of the model of purging, playing and learning (PPL) according to Eriksson theory in a (PRONS) related to strengthen safe care, quality and professional development. Method: A qualitative study with individual interviews and the data was analyzed using qualitative interpretive content analysis. Participants: All eleven registered participated nurses were from southwestern Sweden and worked in different hospital units. Ethical Considerations: The study carried out in accordance with the ethical guidelines laid down in the Helsinki Dec-laration and according to the recommendations of the regional ethics com-mittee. Findings: Three categories were identified, valuable purging in the process, responsive playing and awareness of learning. The study found that by participating in PRONS the nurses had developed new approaches with different “tools” when difficult situations occurred in daily nursing practice. Conclusion: PRONS with the model PPL has an important role to support nurses in daily nursing practice. The study highlights that there are residual successful effects after PRONS for the nurses in managing care situations that experienced strengthen quality in care and professional development.
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| 8. |
- Duong, Thi Hoa, et al.
(författare)
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Experiences of Learning from a Person-Centred Web-Based Support Programme for Children with Urogenital and Bowel Malformation
- 2017
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Ingår i: Psychology. - : Scientific Research Publishing, Inc.. - 0033-3077 .- 2152-7180 .- 2152-7199. ; 2017:8, s. 363-372
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Tidskriftsartikel (refereegranskat)abstract
- The purpose was to illuminate preschool children’s experiences of learning from a web-based intervention comprising person-centred learning support. A qualitative method was chosen based on open-ended interviews with ten children born with urogenital or bowel malformation. The data were analysed using qualitative content analysis. Two main categories and eight subcategories were identified. The findings show that the participants remembered the web preschool with pleasure and thought it had been useful. The children were able to express what they found important and in the conversations they easily associated the intervention with events in their daily life. Most of the children in this present study could manage toilet visits by themselves but worried about the standard in the school toilets. Their own integrity was important with regard to toilet matters and they wanted privacy for their visits.
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| 9. |
- Forsner, Maria, et al.
(författare)
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Mitt i informationsflödet om Covid 19 pandemin, en internationell webbenkätstudie till föräldrar och barn 7-12 år
- 2020
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Ingår i: State of Art- Covid 2019, Nationell digital konferens, Svenska läkarsällskpet.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Tidigt under våren 2020 drabbades Sverige av Covid 19 pandemin. Med pandemin följe en infodemi. Barn skolåldern och deras förälder hamnade mitt i detta informationsflöde. Syfte: Att undersöka hur barn får och tolkar information om Covid 19 pandemin. Metod: Anonymiserad webbenkät. 2 enkäter til barn, respektive föräldrar. Översatt till respektive språk. Deltagare 390 barn, 7-12 är (Sv 50) och 1234 föräldrar ( Sv 235). Insamling april – 1 juni ( Sv 22 maj-1 juni). Initierat av Lucy Bray med team, Edge Hills universitet Storbritannien. Omvårdnad forskare från Sverige, Kanada , Australien, Brasilien och Spanien. Resultat: Majoriteten av barn från andra länderna fick information från föräldrarna. Svaren från de svenska barnen speglade myndighetens rekommendationer. Utomhus skildrades som en positiv plats för de svenska barnen. Teckningar från Sverige visade i stor utsträckning munskydd på både människor och djur. Slutsats: De sveks barnen var medvetna om att coronaviruset kunde vara farligt, vikten av att hålla avstånd och tvätta händerna och skydda de äldre. Svaren från Sverige skiljde sig från de andra länderna med att skolan var främsta och önskade informationskällan. Utomhusaktiviteter uppskattades som önskvärt.
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| 10. |
- Garcia de Avila, Marla Andréia, et al.
(författare)
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Children's Anxiety and Factors Related to the COVID-19 Pandemic : An Exploratory Study Using the Children's Anxiety Questionnaire and the Numerical Rating Scale
- 2020
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 17:16
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Tidskriftsartikel (refereegranskat)abstract
- The repercussions of the COVID-19 pandemic on children's lives deserve attention. This study aimed to assess the prevalence of anxiety among Brazilian children and its associated factors during social distancing during COVID-19. We used a cross-sectional design with an online survey from April to May 2020 in Brazil. We included children aged 6-12 years and their guardians. The Children's Anxiety Questionnaire (CAQ; scores 4-12) and the Numerical Rating Scale (NRS; scores 0-10) were used to measure anxiety. We enrolled 157 girls and 132 boys, with a mean age of 8.84 (±2.05) years; 88.9% of respondents were mothers. Based on CAQ ≥ 9, the prevalence of anxiety was 19.4% (n = 56), and higher among children with parents with essential jobs and those who were social distancing without parents. In logistic regression, the following variables were associated with higher CAQ scores: social distancing without parents; more persons living together in home; and education level of guardians. Based on NRS > 7, the prevalence of anxiety was 21.8% (n = 63); however, no associations with NRS scores were found with the investigated variables. These findings suggest the necessity of implementing public health actions targeting these parents and their children at the population level.
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| 11. |
- Hellström, Anna-Lena, 1946, et al.
(författare)
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A Web-Based Programme for Person-Centred Learning and Support Designed for Preschool Children with Long-Term Illness: A Pilot Study of a New Intervention
- 2012
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Ingår i: Nursing Research and Practice. - : Hindawi Limited. - 2090-1429 .- 2090-1437. ; 2012:326506, s. 326506-8
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Tidskriftsartikel (refereegranskat)abstract
- For children living with long-term illness, school age is a risk period with regard to psychosocial ill health and poor compliance with treatment. There is a need for methods to promote health, well-being, and self-esteem. This study describes a new concept for supporting children, person-centred web-based learning and support, which has been tested in 12 preschool children and incorporates learning about feelings, relationships, and the right to integrity. SKYPE was used for conversations between the child and the web teacher. Methods. The programme was developed and tested in two steps. The conversations were tape-recorded and analysed using phenomenography. The questions addressed concerned the quality of the intervention process: accessibility of intervention, learning content and support, and identification of measurable items and patterns. Findings. The children found it interesting to communicate with their web teacher using SKYPE. The story about Max and Sara served as a good basis for discussion, and development was found in the learning process. The children were able to talk about relations and feelings and developed an understanding for use in new situations in their daily lives. Items and patterns that are useful for research and documentation were identified, for example, well-being, resources, needs, and wishes.
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| 12. |
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| 13. |
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| 14. |
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| 15. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Development of a web-based assessment tool that evaluates the meal situation when a child has a percutaneous endoscopic gastrostomy
- 2019
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Ingår i: Bmc Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundChildren with cancer often suffer side effects from their treatment, for example nausea and vomiting, which can lead to malnutrition. If a child cannot eat orally, a percutaneous endoscopic gastrostomy (PEG) can improve his or her well-being, psychosocial development and growth by enabling the supply of nourishment and facilitating the administration of necessary medicines. Few data exist on children's comfort when using a PEG. The aim of this study was firstly to develop three versions of a web-based assessment tool in which children, families, and healthcare professionals would be able to register their observations and assessments for evaluating the meal situation when a child has a PEG and secondly to validate the content of the tool.MethodsA qualitative design was chosen with purposive sampling of participants. Five children with cancer, five parents, five registered nurses and five paediatricians participated first in an interview and then in a member check of the web-based tool. The data were analysed with manifest qualitative content analysis.ResultsThe results highlighted four categories of issues which needed to be revised in the web-based tool: words which were difficult for the participants to understand, items which contained several questions, items which needed to be split into more items to be answerable and the layout of the questionnaire. The web-based tool was revised according to the categories, and then a member check evaluated and finally confirmed the revisions.ConclusionsA web-based tool may be able to evaluate the meal situation when a child with cancer has a PEG. The tool may be able to detect early failures of the PEG, facilitating early action from the healthcare professionals in supporting the child and his or her parents in their care of the PEG. In the long run, this web-based tool may also be able to increase the quality of care of children living with a PEG.
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| 16. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Grief related to the experience of being the sibling of a child with cancer
- 2014
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Ingår i: Cancer Nursing. - 0162-220X .- 1538-9804. ; 37:5, s. E1-E7
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Tidskriftsartikel (refereegranskat)abstract
- Background: Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support.Objective: The aim of this study was to describe siblings' reports of grief related to the experience of having a brother or sister with cancer.Methods: A qualitative descriptive method was chosen based on open-ended interviews with 29 siblings aged 8 to 24 years. Qualitative content analysis was applied to the interview data.Results: Four categories of grief were identified: anticipatory grief after receiving information about the cancer diagnosis, grief and concern about the ill sibling's loss of a normal life, grief about being unimportant and forgotten in the family, and grief that continues after the sibling's death as a kind of bond.Conclusion: Despite variations in age and gender among participating siblings, their thoughts were similar. Grief was experienced differently from the time of the diagnosis onward, in the form of concerns related to the illness and situation of the ill sibling. Grief related to sibling bonds remained after death.Implication for practice: This study recommends offering siblings realistic information about their ill sibling and support for them in their situation from diagnosis and continuously thereafter. To meet the needs of well siblings, it is necessary to ask the siblings about their thoughts and discuss with them their emotions and worries.
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| 17. |
- Jenholt Nolbris, Margaretha, 1956
(författare)
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Kommunikation med barn som är anhöriga
- 2014
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Ingår i: Kommunikation med barn och unga i vården. - Stockholm : Liber. - 9789147114061 ; , s. 181-189
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 18. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Parents’ experience of their healthy children’s participation in e-health support when a child in the family has cancer.
- 2014
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Ingår i: SIOP 2014. 46th Congress of the International Society Paediatric Oncology. 22-24 Oct. 2014, Toronto, Kanada..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Purpose The aim of this study was to investigate parents’ experience of their healthy children’s participation in e-health support when a child in the family has cancer. Method A qualitative descriptive method was employed in this interview study. Parents from families with a child with cancer and healthy siblings were individually interviewed about their experience of their healthy child’s participation in a person-centered support intervention combining education, learning and reflection. The sick child was newly diagnosed with cancer and had been receiving treatment for a maximum of 1 month. The data were collected during spring 2012. Seven parents participated in the study, 5 mothers and 2 fathers in 5 families with 14 healthy children. The interviews were conducted more in the form of a conversation between the interviewer and parent. A qualitative content analysis was used to draw a systematic conclusion from the text and to extract its message. Result The result comprises 3 preliminary themes. The parents perceived that: 1) ‘The healthy child via his/her contact could think and form an opinion through asking questions and receiving answers’; 2) ‘The healthy child was acknowledged and involved during the intervention’; and 3) ‘The child became calmer and more hopeful’. The parents felt unburdened as professionals in healthcare provided their healthy children with professional information about the sick child’s cancer and also support in understanding and managing their own reactions. Conclusion These results allow for a better understanding of the parents’ experiences of the situation of their healthy children. The study also indicates that a person centred nursing intervention using e-health in order to help the families may ease family burden.
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| 19. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Sibling Supporters’ Experiences of Giving Support to Siblings Who Have a Brother or a Sister With Cancer
- 2017
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 34:2, s. 83-89
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Tidskriftsartikel (refereegranskat)abstract
- Siblings of a child with a life-threatening disease, such as cancer, have a right to measures that promote their health and welfare. Siblings may find it hard to understand what is happening to the sick child with cancer and why he or she reacts as he or she does. The aim of the study was to explore sibling supporters’ thoughts about the experiences they had in providing support for siblings with a brother or a sister with a life-threatening disease such as cancer. All the 12 sibling supporters currently working in Sweden participated in a qualitative, descriptive study from which 5 categories emerged, showing that the sibling supporters supported siblings from diagnosis until possible death. They enabled siblings who were in the same situation to meet each other and arranged activities suited to their ages, as well as offering an encouraging environment. To help the siblings, the sibling supporters found it necessary to interact with both the parents and the ward staff. The sibling supporters felt that their support was important and necessary in helping siblings promote their own health both when the sick child was alive and also after his or her death. The experience of the sibling supporters was that they listened to the siblings’ stories and met them when they were in their crisis. The study confirms that sibling supporters should be a part of the health care team that treat and support the family when a child has cancer.
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| 20. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Sibling supporters' experiences of person-centred care for siblings who have a brother or a sister with cancer
- 2015
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Ingår i: SIOP 2015, 47th Congress of the International Society of Paediatric Oncology, 08-11 October 2015, Cape Town, South Africa.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Conclusions The sibling supporters think that they can give beneficial support to siblings who have a brother or a sister with cancer. They felt that they gave the siblings person-centred care, which meant that they listened to the siblings´ stories and met them where they were in their crisis. The study confirms that sibling supporters should be a part of the healthcare team that treats and supports the family when a child has cancer. Background Siblings of a child with a life-threatening disease such as cancer have a right to measures that promote their health and welfare. Siblings may find it hard to understand what is happening to the sick child with cancer and why they react as they do. In Sweden sibling supporters started to become a part of children´s cancer centers in 1990. Since 2013 are sibling supporters available at all of the six children´s cancer centers in Sweden and funded by the Children's Cancer Fund. The sibling supporter carries out various activities together with siblings and listens to their situation. He/she meets the siblings during the sick child is alive and when he/she is dying or has died. Purpose The aim of this project was to explore sibling supporters’ thoughts about the possibilities they had to provide support for siblings with a brother or a sister with a life-threatening disease such as cancer. The research question was to explore the sibling supporters’ experiences of supporting the siblings of children with cancer. Method The study was qualitative descriptive in design. The data were collected from August 2014 to September 2014 by means of qualitative interviews as a form of communication between the interviewers and each of the 12 sibling supporters. The participants comprised 9 women and 3 men, aged between 35 and 57 years (mean 46 years). They had been working as a sibling supporter between 1.5 and 15 years (mean 5 years). Qualitative content analysis was used to draw a systematic conclusion from the text and also to extract its message. Results The text resulting from the content analysis was sorted into five categories. The five categories that make up the participants´ thoughts about the possibilities they had are presented below. 1. Want to be a support from diagnosis to death. 2. Will allow the siblings to meet each other. 3. Facilitate for siblings through ageappropriate activities. 4. Letting the siblings be encouraged by a positive environment. 5. The sibling supporters help siblings by interacting with people around them.
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| 21. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Siblings of children with cancer : their experiences before and after participating in a support intervention combining education, learning and reflection
- 2012
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Ingår i: Pediatric Blood & CancerSpecial. Issue: 44th Congress of the International Society of Paediatric Oncology (SIOP) 2012, London, United Kingdom, 5th–8th October, 2012. - : Wiley. ; , s. 965-1152
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Konferensbidrag (refereegranskat)abstract
- Purpose: The objective was to evaluate an intervention that combines education, learning and reflection about cancer delivered via internet and email, regarding the provision of support and prevention of illness in siblings with a brother or sister newly diagnosed with cancer. Methods: A descriptive qualitative approach was used. The intervention consisted of lectures and e-mail conversations with siblings supplemented by a personal diary, designed to encourage reflections about open questions concerning thoughts and experiences of being the sibling of a child with cancer. Fourteen siblings with a brother or sister newly diagnosed with cancer participated and were interviewed before and after the intervention. A qualitative content analysis was used for the analyses. Results: The analysis revealed the theme ‘to live as normal a life as possible’ comprising five subthemes; ‘sleeping problems’, ‘physical pain’, ‘emotional affections’ and ‘changes in the future for the whole family’. Life was affected by the child with cancer. Before the intervention the siblings mostly described how new situation led, in everyday life, to suffering, fear, feelings of insecurity and doubts about the future. After the intervention the siblings were more informed about and prepared for the cancer treatments and their sideeffects and the threat of death so close to them.Conclusion: The siblings reflected on and dealt with difficult existential questions. The intervention helped the siblings to better understand cancer, their own reactions and their family situation. This should encourage health-care professionals to acknowledge siblings and to support them when their sister or brother has been diagnosed with cancer.
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| 22. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Siblings of children with cancer - Their experiences of participating in a person-centered support intervention combining education, learning and reflection : Pre- and post-intervention interviews.
- 2014
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:3, s. 254-260
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To evaluate a person-centered intervention, directed to siblings with a brother or sister newly diagnosed with cancer that combines education, learning and reflection about cancer.METHOD: Qualitative methods with pre- and post-intervention semi-structured interviews were conducted. Fourteen siblings aged 9-22 years participated. A qualitative content analysis was carried out.RESULTS: The result comprises of five themes: 'grasping for knowledge about cancer, 'thinking for hours and having nightmares', 'experiencing physical pain', 'being emotional in several ways', 'waiting for a normal, good life despite the uncertain future". Pre-intervention; a low level of knowledge of cancer treatments and its side effects was revealed; siblings slept poorly, lay awake thinking and had nightmares about cancer; they felt pain in different parts of their body; they felt emotional and angry and were anxious as cancer is life-threatening; in the future the sick child will finished treatment and recovered. Post-intervention; siblings described having specific knowledge, felt more informed, and that it was easier to understand the sick child's situation; they slept better, but still had a lot on their minds regarding the sick child; most siblings said they no longer experienced pain, felt better and were happier but could still get sad; in the future the sick child would be healthy, not exactly as before, but almost.CONCLUSION: Person-centered intervention helps siblings to be more knowledgeable about the sick child's cancer, leading to a more realistic view about treatments and consequences. Further studies of person-centered interventions for siblings are important.
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| 23. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Skype Support for Preschool Children with Long-Term Illness—One Year Follow-Up*
- 2016
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Ingår i: Psychology Research. - : David Publishing Company. - 2159-5542 .- 2159-5550. ; 6:2, s. 69-78
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives: The aim of the study was to evaluate support in daily life, in terms of one-year outcomes of a person-centered web-based programme. Background: Children with a chronic disease are at risk of ill health. In school they are vulnerable as they differ from the other children. The united nation convention on the rights of the child awards them rights concerning the promotion of their health and wellbeing. Design: Descriptive qualitative design. Methods: The study was conducted from 2014-2015. Open questions were used in Skype conversations between children and web teachers (a mean of 12 conversations per child). Data were analyzed using qualitative content analysis Results. The web-preschool was found to support the ability to understand, reflect, discuss and find tools dealing with different situations. Sense of coherence was important. The development of verbal and communication skills was clear. The programme included images, narration and two-way Skype communication between child and web-teacher with the possibility of offering flexible support depending on needs. Conclusion: The web-based programme offered support in daily life for the participants—children aged 3-7 years with long-term illnesses.
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| 24. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Using Pedagogical Symbols in A Map in Supervision
- 2019
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Ingår i: International Journal of Nursing and Health Care Research. - 1050-1606. ; 4
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Tidskriftsartikel (refereegranskat)abstract
- The overall findings of this study for each nurse was that they have new tool to combine their emotions with symbols, which could be one way of own empowerment to prevent burn out. One way in which to raise the quality of nursing in daily practice is to develop and improve the nurses´ reflections on nursing situations. This may be aided by a map that can indicate a possible route to achieving an overview of circumstances and of various choices for improvement, a route to developing one’s own competence and to finding moral courage in the exercise of professional care.
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| 25. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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USING THE SEE-HEAR-DO-METHOD (SHDM) BY CARTOON PICTURES IN PEDIATRIC CANCER CARE IN NORWAY
- 2012
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Ingår i: PEDIATRIC BLOOD & CANCER. ; 59:6 SI, s. 994-994
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Purpose Evaluation of the efficient of a pedagogic model with SHDM used by nurses to teach children, their families, network and other nurses about the cancer disease. Methods A new tool based on SHDM with cartoon pictures and instruction DVD, aimed to help nurses with information and explanations, to children with cancer, their siblings, parents, schools, kindergartens and colleagues, was introduced in Norway from 2010. The method aimed to increase the understanding of cancer in children, explaining aspects as blood and cancer cells, diagnoses, infections, transfusion and family relations. The SHDM was performed by key nurses at all the 5 Norwegian child cancer centres. They participated in a 2 days education program before using the method. An evaluation investigated the success of the SHDM by using a questionnaire of 55 questions one year from start in Norway. Questions scored were on a scale of 1-5, where 5 were the best score. Results 26 nurses, who have worked for 5-25 years in the field, performed the SHDM and were used for the majority of 150 new patients in Norway pr year. The evaluations given by the key nurses were overwhelming positive. Regarding of information on cancer treatment, mostly used was the pictures that deal with healthy cells, blood cells, bone marrow healthy or sick, cancer diagnosis, chemotherapy and immune-compromised. According to the nurses' view, the artwork has increased the patients and their families understanding of cancer and its treatment. Conclusions By learning and using the SHDM, nurses were able in a better way to explain about cancer disease. The result showed that nurses experienced they have new tools using SHDM together with their knowledge and in a difficult situation the pictures assisted the nurses in helping patients, families and colleagues to understand.
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| 26. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Young children’s voices in an unlocked Sweden during the COVID-19 pandemic
- 2022
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Ingår i: Scandinavian Journal of Public Health. - : Sage Publications. - 1403-4948 .- 1651-1905. ; 50:6, s. 693-702
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Tidskriftsartikel (refereegranskat)abstract
- Aims: During the COVID-19 pandemic, Sweden was one of the few countries that rejected lockdowns in favour of recommendations for restrictions, including careful hand hygiene and social distancing. Preschools and primary schools remained open. Several studies have shown negative impacts of the pandemic on children, particularly high levels of anxiety. The study aim was to explore how Swedish school-aged children aged 6–14 years, experienced the COVID-19 pandemic and their perceived anxiety.Methods: In total, 774 children aged 6–14 years and their guardians answered an online questionnaire containing 24 questions, along with two instruments measuring anxiety: the Children’s Anxiety Questionnaire and the Numerical Rating Scale. A convergent parallel mixed-methods design was used for analysing the quantitative and qualitative data. Each data source was first analysed separately, followed by a merged interpretative analysis.Results: The results showed generally low levels of anxiety, with no significant sex differences. Children who refrained from normal social activities or group activities (n=377) had significantly higher levels of anxiety. Most of the children were able to appreciate the bright side of life, despite the social distancing and refraining from activities, which prevented them from meeting and hugging their loved ones.Conclusions: These Swedish children generally experienced low levels of anxiety, except those who refrained from social activities. Life was nonetheless mostly experienced as normal, largely because schools remained open. Keeping life as normal as possible could be one important factor in preventing higher anxiety and depression levels in children during a pandemic.
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| 27. |
- Josefsson, Ulrika, 1965, et al.
(författare)
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Person-centred web-based support - development through a Swedish multi-case study.
- 2013
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Ingår i: BMC medical informatics and decision making. - : Springer Science and Business Media LLC. - 1472-6947. ; 13:1
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Tidskriftsartikel (refereegranskat)abstract
- Departing from the widespread use of the internet in modern society and the emerging use of web applications in healthcare this project captures persons' needs and expectations in order to develop highly usable web recourses. The purpose of this paper is to outline a multi-case research project focused on the development and evaluation of person-centred web-based support for people with long-term illness. To support the underlying idea to move beyond the illness, we approach the development of web support from the perspective of the emergent area of person-centred care. The project aims to contribute to the ongoing development of web-based supports in health care and to the emerging field of person-centred care.Methods/designThe research design uses a meta-analytical approach through its focus on synthesizing experiences from four Swedish regional and national cases of design and use of web-based support in long-term illness. The cases include children (bladder dysfunction and urogenital malformation), young adults (living close to persons with mental illness), and two different cases of adults (women with breast cancer and childbearing women with type 1 diabetes). All of the cases are ongoing, though in different stages of design, implementation, and analysis. This, we argue, will lead to a synthesis of results on a meta-level not yet described.
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| 28. |
- Kreicbergs, Ulrika, et al.
(författare)
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Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
- 2022
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Ingår i: Children-Basel. - : MDPI AG. ; 9:5
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Tidskriftsartikel (refereegranskat)abstract
- Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.
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| 29. |
- Melin-Johansson, Christina, et al.
(författare)
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The Recovery Process When Participating in Cancer Support and Rehabilitation Programs in Sweden
- 2015
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Ingår i: Global qualitative nursing research. - : Sage Publications. - 2333-3936. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- The aim was to illuminate the meaning of participating in support and rehabilitation programs described by people diagnosed with cancer. Nineteen persons were interviewed in focus groups and face-to-face. Data were analyzed with a qualitative phenomenological hermeneutical method for researching lived experiences. Interpretation proceeded through three phases: naïve reading, structural analysis, and comprehensive understanding. Three themes were disclosed: receiving support for recovery when being most vulnerable, recapturing capabilities through supportive activities, and searching to find stability and well-being in a changed life situation. Participating in the programs was an existential transition from living in an unpredictable situation that was turned into something meaningful. Recovery did not mean the return to a state of normality; rather, it meant a continuing recovery from cancer treatments and symptoms involving recapturing capabilities and searching for a balance in a forever changed life. This study provides new insights about the experiences of participating in cancer support and rehabilitation programs.
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| 30. |
- Mårtensson, Ulrika, et al.
(författare)
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Experiences before and after nasogastric and gastrostomy tube insertion with emphasis on mealtimes: a case study of an adolescent with cerebral palsy
- 2021
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Adolescents with cerebral palsy may need a feeding tube due to feeding challenges, since nutritional intake and mealtimes may be negatively affected. The purpose of the study was to describe and better understand how one adolescent with cerebral palsy and her parents experienced mealtimes before and after a nasogastric and gastrostomy tube insertion and how the use of these feeding tubes was experienced in daily life. Methods: Individual interviews were performed with one adolescent and each of her parents. In total, six interviews were conducted on two separate occasions. The qualitative approach known as Interpretive Description was used during the analysis. Results: Four thematic patterns were identified within the data: (i) struggling with nutritional intake, (ii) the paradox of using an aid, (iii) being different, and (iv) challenges of public mealtimes. Conclusions: The results showed that four themes influenced daily mealtimes in adolescents with cerebral palsy and a gastrostomy tube. Nutritional intake and mealtimes may be difficult, which is why using a gastrostomy tube can be a relief. However, the gastrostomy tube can also pose a challenge and a paradox. Time of change and acceptance seems necessary in order to meet these challenges.
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| 31. |
- Nilsson, Stefan, 1972, et al.
(författare)
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Teaching about childhood cancer to pupils aged 10–12 years: A randomised trial of two types of material
- 2019
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Ingår i: British Journal of School Nursing. - 1752-2803. ; 14:7
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of the study was to describe and compare pupils' experience of teaching about cancer, when a nurse used two different formats of teaching material to teach pupils aged from 10 to 12 years. Pupils from schools in Western Sweden were randomised to either Imaginary Friends or SEE-HEAR-DO pictures. A total of 197 of 231 pupils (85%) participated, and a majority knew someone who had had cancer before, and thought it was valuable to get knowledge about cancer. The Imaginary Friends intervention group felt happier/more content and calmer/more relaxed, and less tense/nervous after the education about cancer. The SEE-HEAR-DO group felt happier/more content after the education, and were to a significantly higher extent stimulated to ask questions. Both Imaginary Friends and SEE-HEAR-DO pictures can be used as teaching materials for pupils. The use of SEE-HEAR-DO pictures may increase the interaction between the school nurse and the pupils.
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| 32. |
- Nilsson, Stefan, et al.
(författare)
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Young adults' childhood experiences of support when living with a parent with a mental illness
- 2015
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Ingår i: Journal of child health care. - : Sage Publications Ltd.. - 1367-4935 .- 1741-2889. ; 19:4, s. 444-453
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Tidskriftsartikel (refereegranskat)abstract
- There are several concerns in relation to children living with a parent suffering from a mental illness. In such circumstances, the health-care professionals need to involve the whole family, offering help to the parents on parenting as well as support for their children. These children are often helped by participating in meetings that provide them with contact with others with similar experiences. The aim of this study was to investigate young adults' childhood experiences of support groups when living with a mentally ill parent. Seven young women were chosen to participate in this study. A qualitative descriptive method was chosen. The main category emerged as 'the influence of life outside the home because of a parent's mental illness' from the two generic categories: 'a different world' and 'an emotion-filled life'. The participants' friends did not know that their parent was ill and they 'always had to…take responsibility for what happened at home'. These young adults appreciated the support group activities they participated in during their childhood, stating that the meetings had influenced their everyday life as young adults. Despite this, they associated their everyday life with feelings of being different. This study highlights the need for support groups for children whose parents suffer from mental illness.
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| 33. |
- Ranerup, Agneta, 1960, et al.
(författare)
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Role of Theories in the Design of Web-Based person-Centered Support: A Critical Analysis
- 2014
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Ingår i: International Journal of Chronic Diseases. - New York, NY : Hindawi Limited. - 2356-6981 .- 2314-5749. ; 2014
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Tidskriftsartikel (refereegranskat)abstract
- Objective.The aim of this study was to provide a critical understanding of the role of theories and their compatibility with a person centered approach in the design and evaluation of web-based support for themanagement of chronic illness. Methods. Exploration of web-based support research projects focusing on four cases: (1) preschool children aged 4–6 with bladder dysfunction and urogenital malformation; (2) young adults aged 16–25 living with mental illness; (3) women with type 1 diabetes who are pregnant or in early motherhood; and (4) women who have undergone surgery for breast cancer. Data comprised interviews with research leaders and documented plans. Analysis was performed bymeans of a cross-case methodology. Results.The used theories concerned design, learning, health and well-being, or transition. All web support products had been developed using a participatory design (PD). Fundamental to the technology design and evaluation of outcomes were theories focusing on learning and on health and wellbeing. All theories were compatible with a person-centered approach. However, a notable exception was the relatively collective character of PD and Communities of Practice. Conclusion. Our results illustrate multifaceted ways for theories to be used in the design and evaluation of web-based support.
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| 34. |
- Simeonsdotter Svensson, Agneta, 1950, et al.
(författare)
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Experiences of SKYPE communication in education and research - data collection concerning young children with long-term illness
- 2014
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Ingår i: Early Child Development and Care. - : Informa UK Limited. - 0300-4430 .- 1476-8275. ; 184:7, s. 1017-1030
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this paper is to provide knowledge about communication using SKYPE with young children with chronic illness; advantages and barriers are investigated related to education and data issues collection. A qualitative exploratory research method was applied to interviews and notes via SKYPE between children and their web teachers. The data were analysed using phenomenography. The findings are based on five children aged between three and six years and presented in two main categories and seven subcategories. The advantages were: being able to be at home; well-known being and convenience for the child and the family; being to watch and observe each other; being supported by the family; the family were able to contribute to the development of the intervention; and attend ones possible regardless of geographical distance. Barriers were that the images could drop out of range of the computer camera and the SKYPE Internet connection works intermittently with audio or picture.
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| 35. |
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| 36. |
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| 37. |
- Sparud Lundin, Carina, 1964, et al.
(författare)
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Use of participatory design in the development of person-centred web-based support for persons with long-term illness
- 2015
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Ingår i: Abstracts: 19th International Philosophy of Nursing Society (IPONS) conference August 24-26, 2015 Karolinska Institutet, Stockholm, Sweden. - Stockholm : Karolinska Institutet. ; , s. 43-43
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Konferensbidrag (refereegranskat)abstract
- Background: E-health solutions are increasingly developed to meet patients’ preferences and promote their participation in their health care. This has led to increased interest in person-centred technology developed by means of participatory approaches. However, few studies explore the participatory design process from the perspective of person-centeredness including how it becomes materialized in the informational technology. This paper explores how applied participatory approaches and the design of four web based supports correspond to key areas of person-centeredness.Aim and method: The purpose was to create shared knowledge and understanding of each separate case and to generate relevant categories. Data was collected from four Swedish research projects. The analysis followed an inductive approach involving a step-wise cross-case analysis.Results: A number of question areas describe the dialogue with the participants in the cases. The areas cover individual, social, and practical issues. The results of the dialogue are categorized into four support areas; psychological/emotional, personal, information, technical. By means of common as well as specifically developed technical solutions the support areas becomes visible in the design. Person-centredness will appear in the participatory design (PD) process as the approach promotes the development of a holistic view of the person and the illness and a partnership between patients and carers.Conclusions: Our results contribute to a central development area within eHealth involving greater opportunities for the patient to actively contribute in real time, getting access to and add information, and sometimes interact directly with carers. However, it is concluded that neither participatory approaches nor technology for online information and communication can guarantee personcenteredness by itself. Instead, it is the design of the PD process and the forming of the actual use of technology together with the particular purpose of the web based support that shape person-centred online support.
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| 38. |
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| 39. |
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