Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child’s response to a parent’s death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

This article aims to describe the adaptation of the evidence-based Family BereavementProgram to a Swedish context. Empirical support indicating that family communication is aprotective factor for parentally bereaved children was used to motivate the focus of theintervention. Modules from the Family Bereavement Program manual were translated, culturallyadapted, and modified to fit a family format. The manual for the Grief andCommunication Family Support Intervention was pilot-tested with two families, whichresulted in minor modifications being made to the manual. Therapists reported that theycould follow the manual and adapt it to children’s varying ages.

This thesis explores discourses regarding children’s voice, in the Swedish Patient Act, as well as in Swedish patient organizations. In the Patient Act, children’s rights as patients are construed on the basis of custodians’ parental rights and the assumption that patients are competent and autonomous adults. The child is given an object position, weaker than an adult patient and subordinated to parents’ authority. Consequently, the integrity of the child is not absolute, as it is construed through an autonomy discourse and a family discourse which set boundaries for the child´s voice in the Patient Act. The family discourse combined with a mass movement discourse form the prerequisits for children’s voice in the context of patient organizations. As a consequence, patient organizations do not act as voice in relation to children’s rights as patients, in the Patient Act. Rather, interviews with representatives of patient organizations show that the parents act as voice having a child in need of health care. The position of children in the organizationsis ambiguous and, rather than having a voice of their own, children can be used in advertising campaigns to attract funding, expressing the voice of the organization. When children are used in this way by organizations, children’s integrity seem to be negotiable. The thesis shows that in both the Patient Act and the patient organizations, the integrity of the child is questioned. Children seem to be regarded as imperfect rights-holders and as imperfect members of society.This perception of the child is traced to dominant ethical perspectives from which children’s human rights have emerged. Drawing on current academic debates, analternative approach to these prevailing ethical perspectives is suggested. Instead of making rights conditional upon presumed autonomy and adulthood, rights can be perceived as relational and expressions of the mutual interdependence of humans, regardless of age and maturity. If rights are seen in this way, with children being understood not as essentially different but differently equal, then the child´s voice can have actual importance.

The aim of this licentiate thesis was to describe the meaning of women's experiences of living with multiple sclerosis (MS). This licentiate thesis focuses specific on the women's experiences of daily life (I) and the experience of fatigue (II). Narrative interviews were conducted with 10 women living with MS and the interviews were analysed with a phenomenological hermeneutic interpretation. This licentiate thesis proposes that the meaning of living with MS for women can be seen as living an everyday life defined by the body, which imposes living with a restrained freedom in the same time as a feat for freedom in everyday life exists. The constraints of freedom in everyday life, involves the body, relations to others and not being able to involve in everyday life in a desired way. Despite the demanding body which directs the women's life they choose to involve in everyday life instead of withdraw. While the women's experience of freedom is held back the women seam to feat for an own inner freedom, which is used to approach life and meet the demands of illness. The relationship between this inner freedom and the restrained freedom means a feat for freedom in order to meet the conditions that MS brings into the women's everyday life.

The aim of this doctoral thesis was to describe meanings of women's experiences of living with multiple sclerosis (MS). It focuses specifically on the women's experiences of daily life (I), the experience of fatigue (II), experiences of feeling well (III) and experiences of treatment (IV). Narrative interviews were conducted with 25 women living with MS and the interviews were analyzed from a phenomenological hermeneutic interpretation.For women with MS, living with an unrecognizable body meant that the deterioration of their bodies had become clear and served as a hindrance in daily life. The experience of fatigue seemed to mean that the body instead of working as an implement in order to manage daily life had become an enemy. These experiences included bodily changes, which were evident to others, and imposed feelings of being met in a different way. The ill body threatens the women's dignity and they expressed being avoided by others as hurtful. Despite the fact of all aspects of daily life are being affected by illness, the women with MS nevertheless do find ways to experience feeling well. Feeling well, for women with MS can be understood as finding a pace where daily life goes on and the illness is not the dominant experience.This thesis suggests that meanings of women's experiences of living with MS can be comprehended as a movement between the two dimensions of having a value and feeling unimportant to others. In the dimension of having a value, feeling well is brought forward, meanwhile the dimension of feeling unimportant to others, implies suffering in the daily lives of women with MS. For these women recognizing oneself as valuable and sharing an understanding are important in order to feel dignified in daily life and to experience feeling well.

Living with fibromyalgia (FM) means living with a chronic pain condition that greatly influences daily life. The majority of people with FM are middle-aged women. The aim of this study was to elucidate meanings of pain for women with FM. Fifteen women with FM were interviewed about their pain experiences and a phenomenological hermeneutic interpretation was used to analyse the interview texts. The findings show that meanings of pain for women with FM can be understood as living with a double burden; living with an aggressive, unpredictable pain and being doubted by others in relation to the invisible pain. The ever-present pain was described as unbearable, overwhelming, and dominated the women’s whole existence. Nevertheless, all the women tried to normalize life by doing daily chores in an attempt to alleviate the pain. In order to support the women’s needs and help them to feel well despite their pain, it is important that nurses and health care personnel acknowledge and understand women with FM and their pain experiences.