Suchergebnisse

AbstractThis study intends to provide insights into the lives of children who suffer from chronic pain and of their parents. A qualitative, multi‐modal approach was employed, using the draw, write and tell technique with seven children, and semi‐structured interviews with parents. By illustrating that children are active social agents in the management of chronic pain (even when they are understood by parents as vulnerable), the findings support recent sociological work in the field of childhood health. Indeed, the findings show that children with a chronic condition can take autonomous decisions in relation to disease management even when supervised by parents.

AbstractSiblings' lives and well‐being are potentially affected in profound ways when their brother or sister suffers from a chronic illness in childhood. The shift in the care of chronically ill children from the hospital to the home in recent years has had an impact on family relationships and interactions. Whilst studies on caregiving have focused on the parental care of children who are chronically ill; siblings may nevertheless take on some caring roles and responsibilities. This article intends to make a novel contribution to the sociological literature on siblings, caring, and chronic illness by presenting a review of the literature addressing siblings' caring roles and responsibilities in families of children with a chronic illness. Knowing about the caring roles and responsibilities undertaken by siblings when a brother or sister has a chronic illness, may be beneficial to healthcare professionals and influence their caring practice. In addition, this work may contribute to a better understanding of family relationships and further improve healthcare policies.

AbstractWhile diaries as a method have a long tradition in sociological research, few studies to date have demonstrated its value for studying health and illness. This article intends to illustrate the importance of this method for health research. The implications of the use of solicited diaries to conduct research within the field of health and illness are discussed. The contributions that the method can make to sociological research on health and illness are explored, namely the potential to capture the everyday of ill people and their family members. Indeed, this method offers an opportunity to access the experience of illness in a multidimensional approach which is not easy for researchers to catch using other methods. The article aims to present an overview of the significance of the use of diaries in health research and will make a novel contribution to the sociology of health and illness.

Drawing upon ethnographic research developed in two Portuguese palliative care units, this article seeks to analyse end-of-life practices, namely how they are perceived and negotiated among the various actors involved. Over a period of 10 months in these units participant observation and in-depth interviews were conducted with 20 family members of patients with a life-threatening illness and 20 health care professionals. Against this backdrop, aspects related to the concept of a 'good death', the management of pain and suffering, and the loss of consciousness were explored. The main findings pointed to an appreciation, both by professionals and family members, of an holistic intervention that guarantees the patient's physical, psychological, social, and spiritual well-being, where the relief of physical symptoms is of particular importance and palliative sedation emerges as a mechanism that allows the patient to achieve a 'good death' (without suffering and in a peaceful way).

This paper intends to encourage further reflection on the research methods and approaches used to enhance the voices of children with chronic conditions. Visual methods (e.g., 'draw, write, and tell' and photo elicitation interviews) have been described as the most appropriate ways to develop research with children as they allow room for children to share their lived experiences in their own terms and to actively participate in the research process, by giving them the opportunity to act as co-researchers. In fact, the use of these methods also contributes to empowering children and mitigating the power differences that exist between the adult researcher and young participants. Drawing on an ongoing study on the experience and management of chronic pain in childhood, this paper provides insights on the usefulness of using these multi-methods to address (potentially) sensitive topics with a (potentially) vulnerable group. The ethical and methodological challenges faced by the researcher when conducting research with ill children in the healthcare context are addressed. The paper looks at the dilemmas of studying chronic pain in childhood and highlights the ways in which multi visual methods can help children in the meaning making of chronic pain.