Margaretha Jenholt Nolbris

Siblings’ Needs and Issues When a Brother or Sister Dies of Cancer:

To explore siblings’needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had not felt involved in the dying process with the exception of the terminal period. The siblings stated that their dissatisfaction would have been reduced if doctors and nurses had provided continuous information and support. Loneliness, anxiety, anger, and jealousy were common feelings that they expressed. Friends and school were important to the siblings, representing a normal environment free from the domination of sickness. The siblings also expressed that they needed to mourn in their own way including periods of time when they did not mourn. The absence of the dead sibling was felt particularly during family celebrations. The siblings continued to have special memories and objects, and all still included the dead sibling as a member in the family.

Grief related to the experience of being the sibling of a child with cancer.

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.

Young adults’ childhood experiences of support when living with a parent with a mental illness

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.

Characterisation of Cancer Support and Rehabilitation Programmes: A Swedish Multiple Case Study

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.

Experiences of SKYPE communication in education and research – data collection concerning young children with long-term illness

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.

Person-centred web-based support - development through a Swedish multi-case study

BackgroundDeparting 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.DiscussionTo allow valid comparisons between the four cases we explore and problematize them in relation to four main aspects: 1) The use of people’s experiences and needs; 2) The role of use of theories in the design of person-centred web-based supports; 3) The evaluation of the effects of health outcomes for the informants involved and 4) The development of a generic person-centred model for learning and social support for people with long-term illness and their significant others. Person-centred web-based support is a new area and few studies focus on how web-based interventions can contribute to the development of person-centred care. In summary, the main intention of the project outlined here is to contribute with both a synthesis of results on meta-level from four cases and a substantial contribution to the field person-centred care.

Sibling Supporters' Experiences of Giving Support to Siblings Who Have a Brother or a Sister With Cancer.

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.

Building the evidence for nursing practice: learning from a structured review of SIOP abstracts, 2003-2012

The focus of work submitted to an international conference can reflect the changing landscape of a specialty and prove important for identifying trends, uncovering gaps, and providing new directions for nurse‐led research and clinical practice. We present an analysis of trends in presentations in the nursing program at the SIOP congress from 2003 to 2012 based on all accepted abstracts.

The Recovery Process When Participating in Cancer Support and Rehabilitation Programs in Sweden

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.

Skype Support for Preschool Children with Long-Term Illness One Year Follow-Up

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.