Pain in juvenile idiopathic arthritis : parents and children as agents of disease management

Juvenile idiopathic arthritis (JIA) is a severe childhood disease usually characterized by long-term morbidity, unpredictable course, pain, and limitations in daily activities and social participation. The disease affects not only the child but also the whole family. The family is expected to adhere to an often very laborious regimen over a long period of time. However, the parental role is incoherently conceptualized in the research field. Pain in JIA is of somatic origin, but psychosocial factors, such as mood and self-efficacy, are critical in the perception of pain and in its impact on functioning. This study examined the factors correlating and possibly explaining pain in JIA, with a special emphasis on the mutual relations between parent- and patient-driven variables. In this patient series pain was not associated with the disease activity. The degree of pain was on average fairly low in children with JIA. When the children were clustered according to age, anxiety and depression, four distinguishable cluster groups significantly associated with pain emerged. One of the groups was described by concept vulnerability because of unfavorable variable associations. Parental depressive and anxiety symptoms accompanied by illness management had a predictive power in discriminating groups of children with varying distress levels. The parent’s and child’s perception of a child’s functional capability, distress, and somatic self-efficacy had independent explanatory power predicting the child’s pain. Of special interest in the current study was self-efficacy, which refers to the belief of an individual that he/she has the ability to engage in the behavior required for tackling the disease. In children with JIA, strong self-efficacy was related to lower levels of pain, depressive symptoms and trait anxiety. This suggests strengthening a child’s sense of self-efficacy, when helping the child to cope with his or her disease. Pain experienced by a child with JIA needs to be viewed in a multidimensional bio-psycho-social context that covers biological, environmental and cognitive behavioral mechanisms. The relations between the parent-child variables are complex and affect pain both directly and indirectly. Developing pain-treatment modalities that recognize the family as a system is also warranted.

Transition to parenthood after assisted reproductive treatment: Follow-up study of singleton pregnancies

Infertility treatments are relatively easily available in most Western countries today, but the psychological consequences of these high-tech treatments have scarcely been addressed. The purpose of this controlled longitudinal study was to explore the early environment of the infant born by assisted reproductive treatment (ART). We focused on the parents mental well-being, marital relations and experience of parenting. In addition to this, we assessed parent child interaction and parents mental representations of their child after long-standing infertility and several unsuccessful ART attempts. The subjects were infertile couples who achieved a singleton pregnancy by in vitro fertilization (IVF) or intracytoplasmic sperm injection (ICSI). The control group comprised of spontaneously conceiving couples with singleton pregnancies. ART women showed fewer depressive symptoms than controls during pregnancy and after delivery, but the difference vanished by the end of the child s first year. ART men consistently had lower levels of anxiety symptoms, sleeping difficulties, and social dysfunction than control men. Control women experienced a decrease in dyadic consensus during the child s first year, which did not happen among ART women. After the child was born, ART men reported a higher level of sexual affection compared with control men. Psychic symptoms and stressful life events were differently related to marital relations in ART and control groups. The parenting experiences of ART mothers were in general at a higher level, compared with controls, and they changed in a positive direction during the child s first year. Fathering experiences were at the same level in both groups, and they changed positively in both groups by the end of the child s first year. The parenting experiences of ART mothers and fathers were more resilient to certain child-related stressors than those of control group. Both mothers and fathers with long-term infertility showed more sensitive behaviour with their child in toddler-age than in infancy. Correspondingly, children s cooperation increased. Mothers often mentioned a fear of miscarriage and difficulty in creating representations of the child during pregnancy. Descriptions of the infants were mainly rich, vivid and loaded with positive features. In conclusion, ART parents in general seem to adapt well to the transition to parenthood. Former infertility and ART do not seem to constitute a risk for parents mental health, marital relations or experience of parenting. Even longstanding infertility with several unsuccessful treatment attempts did not create a risk as regards parenting behaviour or parents mental representations of their child. In this group, however, women were found to have fear for losing the child and difficulty in creating representations of the child during pregnancy, which in some cases may indicate need for psychosocial support. Even though our results are encouraging, infertility and infertility treatments are generally considered as a stressful experience. It is a challenge for health authorities to recognize those couples who need professional help to overcome the distressing experiences of infertility and ART.

Ydinperheen politiikka

The research topic is the formation of nuclear family understanding and the politicization of nuclear family. Thus, the question is how did family historically become understood particularly as nuclear family and why did it become central in terms of politics and social? The research participates in discussions on the concept and phenomena of family. Central theme of analysis is to ask what is family? Family is seen as historically contingent and the discussions on the concept and phenomena are done via historical analysis. Center of attention is nuclear family, thus, a distinction between the concepts of family and nuclear family is made to be able to focus on historically specific phenomena of nuclear family. Family contrary to the concept of nuclear family -- in general is seen to be able to refer to families in all times and all cultures, as well as all types of families in our times and culture. The nuclear family understanding is examined through two separate themes, that of parent-child relationships and marital relations. Two simultaneous processes give nuclear family relations its current form: on the one hand the marital couple as the basis of family is eroding and losing its capacity to hold the family together; on the other, in Finland at least from 1950s on, the normal development of the child has became to be seen ontologically bound to the (biological) mother and (via her to) the father. In the nucleus of the family is the child: the biological, psychological and social processes of normal development are seen ontologically bound to the nuclear family relations. Thus, marriages can collapse, but nuclear family is unbreakable. What is interesting is the historical timing: as nuclear family relations had just been born, the marriage dived to a crisis. The concept and phenomena of nuclear family is analyzed in the context of social and politics (in Finnish these two collapses in the concept of yhteiskunnallinen , which refers both to a society as natural processes as well as to the state in terms of politics). Family is political and social in two senses. First, it is understood as the natural origin of the social and society. Human, by definition, is understood as a social being and the origin of social, in turn, is seen to be in the family. Family is seen as natural to species. Disturbances in family life lead to un-social behaviour. Second, family is also seen as a political actor of rights and obligations: family is obligated to control the life of its members. The state patronage is seen at the same time inevitable family life is way too precious to leave alone -- and problematic as it seems to disturb the natural processes of the family or to erode the autonomy of it. The rigueur of the nuclear family is in the role it seems to hold in the normal development of the child and the future of the society. The disturbances in the families first affect the child, then the society. In terms of possibility to re-think the family the natural and political collide: the nuclear family seems as natural, unchangeable, un- negotiable. Nuclear family is historically ontologised. The biological, psychological and social facts of family seem to be contrary to the idea of negotiation and politics the natural facts of family problematise the politics of family. The research material consists of administrational documents, memoranda, consultation documents, seminar reports, educational writings, guidebooks and newspaper articles in family politics between 1950s and 1990s.

Keltaista ja kimaltavaa : kodin ja koulun yhteistyöstä koulun ja kodin yhteyteen

Through this study I aim to portray connections between home and school through the patterns of thought and action shared in everyday life in a certain community. My observations are primarily based upon interviews, writings and artwork by people from home (N=32) and school (N=13) contexts. Through the stories told, I depict the characters and characteristic features of the home-school interaction by generations. According to the material, in the school days of the grandparents the focus was on discipline and order. For the parents, the focus had shifted towards knowledge, while for the pupils today, the focus lies on evaluation, through which the upbringing of the child is steered towards favourable outcomes. Teachers and those people at home hold partially different understandings of home-school interaction, both of its manifested forms and potentials. The forms of contact in use today are largely seen as one-sided. Yearning for openness and regularity is shared by both sides, yet understood differently. Common causes for failure are said to lie in plain human difficulties in communication and social interaction, but deeply rooted traditions regarding forms of contact also cast a shadow on the route to successful co-operation. This study started around the idea, that home-school interaction should be steered towards the ex-change of constructive ideas between both the home and school environments. Combining the dif-ferent views gives to something to build upon. To test this idea, I drafted a practice period, which was implemented in a small pre-school environment in the fall of 1997. My focus of interest in this project was on the handling of ordinary life information in the schools. So I combined individual views, patterns of knowledge and understanding of the world into the process of teaching. Works of art and writings by the informants worked as tools for information processing and as practical forms of building home-school interaction. Experiences from the pre-school environ-ment were later on echoed in constructing home-school interaction in five other schools. In both these projects, the teaching in the school was based on stories, thoughts and performances put to-gether by the parents, grandparents and children at home. During these processes, the material used in this study, consisting of artwork, writings and interviews (N=501), was collected. The data shows that information originating from the home environments was both a motivating and interesting addition to the teaching. There even was a sense of pride when assessing the seeds of knowledge from one’s own roots. In most cases and subjects, the homegrown information content was seamlessly connected to the functions of school and the curriculum. This project initiated thought processes between pupils and teachers, adults, children and parents, teachers and parents, and also between generations. It appeared that many of the subjects covered had not been raised before between the various participant groups. I have a special interest here in visual expression and its various contextual meanings. There art material portrays how content matter and characteristic features of the adult and parent contexts reflect in the works of the children. Another clearly noticeable factor in the art material is the impact of time-related traditions and functions on the means of visual expression. Comparing the visual material to the written material reveals variances of meaning and possibilities between these forms of expression. The visual material appears to be related especially to portraying objects, action and usage. Processing through that making of images was noted to bring back memories of concrete structures, details and also emotions. This process offered the child an intensive social connection with the adults. In some cases, with children and adults alike, this project brought forth an ongoing relation to visual expression. During this study I end up changing the concept to ‘home-school collaboration’. This widely used concept guides and outlines the interaction between schools and homes. In order to broaden the field of possibilities, I choose to use the concept ‘school-home interconnection’. This concept forms better grounds for forming varying impressions and practices when building interactive contexts. This concept places the responsibility of bridging the connection-gap in the schools. Through the experiences and innovations of thought gained from these projects, I form a model of pedagogy that embraces the idea of school-home interconnection and builds on the various impres-sions and expressions contained in it. In this model, school makes use of the experiences, thoughts and conceptions from the home environment. Various forms of expression are used to portray and process this information. This joint evaluation and observation evolves thought patterns both in school and at home. Keywords: percieving, visuality, visual culture, art and text, visual expression, art education, growth in interaction, home-school collaboration, school-home interconnection, school-home interaction model.