"I also want a dog ..." : a study of children and teenagers with asthma and their mothers

Aim: The overall aim of this thesis is to illuminate meanings of being a child with asthma, to describe what strategies they use to manage their daily life, and how they estimate their quality of life. The aim is also to describe how family relations might be influenced by the child’s asthma disease. Methods: Informants in three qualitative studies were 37 children with asthma and 17 mothers of children with asthma. Informants in a quantitative quality of life study were 226 children with asthma. The data collections were undertaken by means of interviews, observations, and a questionnaire (PAQLQ). The data was analysed by means of phenomenological-hermeneutic method, grounded theory, and statistics. Results: A meaning of being a child with asthma is to strive to live a normal life, which means to be able to participate in the same activities as healthy friends. According to the children, participation is facilitated by confidence in one’s own knowledge, by other people’s wish to help, and by confidence in medicines. On occasions when the disease becomes an obstacle to participation, the children feel like outsiders, and talk about feelings of deprivation, guilt, loneliness, anxiety, and fear. When observing and interviewing teenagers with asthma they showed and expressed that their core concern was not letting the disease get the upper hand over life. To manage this core concern they used three strategies: keeping a distance to the disease, challenging the disease, and taking the disease into consideration. Boys mainly keep a distance to the disease while girls mainly take the disease into consideration. Challenging the disease seems to be a strategy used by both girls and boys. Differences between girls and boys were also seen when children with asthma estimated their quality of life, even though they both estimate their quality of life as comparatively high. A significant association was found between a higher quality of life and being a boy, compared to being a girl. The core concern in families of a child with asthma was found to be disease-engendered uncertainty. The mothers experience themselves as always being available for the child with asthma, owing to the unpredictability of the disease. Control and tight bonds therefore characterize the relation between the mother and the sick child. Being constantly available for the child with asthma, decreases the mothers’ availability for other family members and these relations are described as being characterised by feelings of being forsaken and lack of understanding. Conclusion: One conclusion drawn from this thesis is that life with asthma includes moments of wellbeing for both children with asthma and their mothers, but also moments when they experience that the disease gets the upper hand over life. In assisting them it is of great value to create a milieu where the individuals dare to talk about their experiences and to be aware of possible differences between boys and girls. It is also important never to judge, but to customize care, based on the needs of each individual

Importance of social capital at the workplace for return to work among women with a history of long-term sick leave: a cohort study

Abstract Background The workplace is an essential source of social capital for many people; it provides mutual support and gives meaning to life. However, few prospective studies have thoroughly investigated the importance of aspects of social capital in the workplace. The aim of this study was to investigate the associations between aspects of social capital (social support, sense of community, and quality of leadership) at the workplace, and work ability, working degree, and vitality among women with a history of long-term sick leave from human service organizations. Methods A longitudinal cohort study was performed among women with a history of long-term sick leave. The study started in 2005, and the women were followed up at 6 months, 1 year, and 6 years using self-reported questionnaires (baseline n = 283). Linear mixed models were used for longitudinal analysis of the repeated measurements of prospective degree of work ability, working degree, and vitality. Analyses were performed with different models; the explanatory variables for each model were social support, sense of community, and quality of leadership and time. Results Social capital in terms of quality of leadership (being good at solving conflicts and giving high priority to job satisfaction), sense of community (co-operation between colleagues) and social support (help and support from immediate superiors and colleagues) increased the women’s work ability score (WAS) as well as working degree over time. Additionally, social capital in terms of quality of leadership increased the women’s vitality score over time. Conclusions A sustainable return-to-work process among individuals with a history of long-term sick leave, going in and out of work participation, could be supported with social support, good quality of leadership, and a sense of community at the workplace. The responsibility for the rehabilitation process can not be reduced to an individual problem, but ought to include all stakeholders involved in the process, such as managers, colleagues, health care services, and the social security agency

Parents’ perspectives on supporting children during needle-related medical procedures

When children endure needle-related medical procedures (NRMPs), different emotions arise for the child and his/her parents. Despite the parents’ own feelings, they have a key role in supporting their child through these procedures. The aim of this study is to describe the meanings of supporting children during NRMPs from the perspective of the parents. Twenty-one parents participated in this study. A reflective lifeworld research (RLR) approach was used and phenomenological analysis was applied. The essential meaning of the phenomenon—supporting children during an NRMP—is characterized as “keeping the child under the protection of one's wings,” sometimes very close and sometimes a little further out under the wingtips. The essential meaning is additionally described through its constituents: paying attention to the child's way of expressing itself, striving to maintain control, facilitating the child's understanding, focusing the child's attention, seeking additional support, and rewarding the child. The conclusion is that parents’ ability to be supportive can be affected when seeing their child undergo an NRMP. To regain the role as the child's protector and to be able to keep the child “under the protection of one's wings,” parents need support from the staff

Nurses' perspectives on supporting children during needle-related medical procedures

Children state that among their worst fears during hospitalization are those related to various nursing procedures and to injections and needles. Nurses thus have a responsibility to help children cope with needle-related medical procedures (NRMP) and the potentially negative effects of these. The aim of the study is to describe the lived experience of supporting children during NRMP, from the perspective of nurses. Fourteen nurses took part in the study, six of whom participated on two occasions thus resulting in 20 interviews. A reflective lifeworld research approach was used, and phenomenological analysis was applied. The result shows that supporting children during NRMP is characterized by a desire to meet the child in his/her own world and by an effort to reach the child's horizon of understanding regarding these actions, based on the given conditions. The essential meaning of the phenomenon is founded on the following constituents: developing relationships through conversation, being sensitive to embodied responses, balancing between tact and use of restraint, being the child's advocate, adjusting time, and maintaining belief. The discussion focuses on how nurses can support children through various types of conversation and by receiving help from the parents' ability to be supportive, and on whether restraint can be supportive or not for children during NRMP. Our conclusion is that nurses have to see each individual child, meet him/her in their own world, and decide on supportive actions while at the same time balancing their responsibility for the completion of the NRMP. This work can be described as "balancing on a tightrope" in an unpredictable situation

Perceptions of Professional Responsibility When Caring for Older People in Home Care in Sweden

Older people in Sweden are increasingly being cared for in the own home, where professional caregivers play an important role. This study aimed to describe perceptions of caring responsibility in the context of older people’s homes from the perspective of professional caregivers from caring professions. Fourteen interviews were conducted with professional caregivers from different professions. The result show how professional caregivers perceive responsibility as limitless, constrained by time, moral, overseeing, meaningful and lonesome. Responsibility seems to affect caregivers to a large extent when the burden is high. Professional caregivers’ perceptions of responsibility, and the potential consequences of a perceived strained work situation therefore need to be addressed. The findings also indicate a need for professional support and guidance when it is difficult to distinguish between professional and personal responsibility

Relationships first : Formal and informal home care of older adults in Sweden

To a great extent, older people in Sweden, often with extensive care needs, are cared for in their own home. Support is often needed from both family and professional caregivers. This study aimed to describe and analyse different aspects of health, functioning and social networks, and how they relate to formal and informal care in the home among older adults. Analyses were performed utilising data from the OCTO-2 study, with a sample of 317 people living in Jonkoping County, aged 75, 80, 85 or 90 years, living in their own homes. Data were collected with in-person-testing. Based on receipt of care, the participants were divided into three groups: no care, informal care only, and formal care with or without informal care. Descriptive statistics and multinomial regression analysis were performed to explore the associations between received care and different aspects of health (such as multimorbidity, polypharmacy), social networks (such as loneliness, number of confidants) and functioning (such as managing daily life). The findings demonstrate that the majority of the participants received no care at home (61%). Multimorbidity and polypharmacy were more common among those receiving some kind of care in comparison to those who received no care; moreover, those receiving some kind of care also had difficulties managing daily life and less satisfaction with their social networks. The multinomial logistic regression analyses demonstrated that age, functioning in daily life, perceived general health and satisfaction with the number of confidants were related to receipt of care, but the associations among these factors differed depending on the type of care that was received. The results show the importance of a holistic perspective that includes the older person's experiences when planning home care. The results also highlight the importance of considering social perspectives and relationships in home care rather than focusing only on health factors