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 Jönköping 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.

Balance in life as a prerequisite for community-dwelling older adults' sense of health and well-being after retirement: an interview-based study.

PURPOSE: This study aimed to describe community-dwelling older adults' perceptions of health and well-being in life after retirement. METHODS: This study is part of a larger project using a mixed-methods design to address lifestyles' influence on community-dwelling older adults' health. Individual semi-structured interviews were conducted with 18 older adults in age 70 to 95 years. Data were analysed according to a phenomenographic approach. RESULTS: The results encompass four categories describing variations in community-dwelling older adults' perceptions of health and well-being after retirement: feeling well despite illness and disease, interacting with and being useful for oneself and others, independently embracing opportunities and engaging in life, and maintaining a healthy lifestyle. CONCLUSIONS: The absence of illness and disease is not a clear prerequisite for a sense of health and well-being. To promote and preserve health and well-being after retirement, older adults strived for-and coached themselves to uphold-a balance in life, focusing on not burdening others. This life orientation after retirement must be acknowledged by society at large, especially from an ageist perspective, and in health and social care to preserve and promote health and well-being.

The intertwining of reconciliation and displacement: a lifeworld hermeneutic study of older adults' perceptions of the finality of life.

PURPOSE: This study aimed to explain and understand the existential meaning of the finality of life from the perspective of healthy older adults. METHOD: Participants were recruited from a major project on older adults' life situations. They were interviewed about their thoughts on the end of life, and their responses were interpreted using a lifeworld hermeneutic approach. RESULTS: The findings showed that thinking about the inevitable finality of life involves feelings of liberation, frightening thoughts, a comforting promise of something beyond death, acceptance of the concept of death as a companion in life and a desire to live. Philosopher Simone de Beauvoir's existential ideas about ageing and death were then used to further explain and understand the meaning of the finality of life and to support a comprehensive understanding. de Beauvoir suggests that when the temporal horizon of existence shrinks, one lives closer to the finality of life. For a comprehensive understanding, attributing meaning to the finality of life required the intertwining of reconciliation and displacement. The interpretations were further discussed using ideas from the fields of existential philosophy and caring science in order to develop a basis for caring practice. CONCLUSIONS: The conclusions suggested that professional health care for older adults would benefit from a lifeworld-led caring science approach that includes readiness for a caring dialogue that focuses on existential issues.

A responsibility that never rests - the life situation of a family caregiver to an older person.

BACKGROUND: When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well-being and daily life. AIM: This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home. METHODS: In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process. FINDINGS: In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships. CONCLUSION: A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

Becoming a guest in your own home: Home care in Sweden from the perspective of older people with multimorbidities.

AIM AND OBJECTIVE: To describe the meaning of the phenomenon home care from the perspective of older persons who live alone with multimorbidity. BACKGROUND: In line with worldwide changing demographics, conditions for older people in need of home care are changing. In Sweden there is a stay-in-place policy and older people are expected to live and be cared for in their own home as long as possible. Home care, instituted by different laws, is a challenge affecting the older person when the private home becomes a workplace. DESIGN: This study uses a qualitative design with a lifeworld approach. METHODS: The study having been conducted in Sweden in 2016, the researchers interviewed 12 older persons that live alone and receive home care. Data were analysed using qualitative content analysis. RESULTS: The findings illustrate four sub-themes: adapting to a caring culture, feeling exposed, unable to influence care and forced relations. The overall theme reveals that older people experience a life-changing situation when receiving home care and they become a guest in their own home. CONCLUSIONS: Becoming older with increased needs means to disrupt one's life when one's private home becomes a public arena. The gap between an older person's rights by law and the older person's experiences of receiving home care needs to be highlighted to meet the oncoming challenges in providing a home care that includes participation of the older themselves. Only then can care be offered that enables older people to have a sense of control and experience their home as their own. IMPLICATIONS FOR PRACTICE: The findings emphasise the need to view older people as being self-determinant and independent. Older people receiving home care need to be seen as individuals, and their entire life situation should be considered by also acknowledging the important role played by relatives and caregivers.

Experiencing Support During Needle-Related Medical Procedures: A Hermeneutic Study With Young Children (3-7Years).

Needle-related medical procedures (NRMPs) are something that all young children need to undergo at some point. These procedures may involve feelings of fear, pain and anxiety, which can cause problems later in life either when seeking healthcare in general or when seeking care specifically involving needles. More knowledge is needed about supporting children during these procedures. AIM: This study aims to explain and understand the meaning of the research phenomenon: support during NRMPs. The lived experiences of the phenomenon are interpreted from the perspective of younger children. METHOD: The analysis uses a lifeworld hermeneutic approach based on participant observations and interviews with children between 3 and 7years of age who have experienced NRMPs. RESULTS: The research phenomenon, support for younger children during NRMPs, is understood through the following themes: being the centre of attention, getting help with distractions, being pampered, becoming involved, entrusting oneself to the safety of adults and being rewarded. A comprehensive understanding is presented wherein younger children experience support from adults during NRMPs in order to establish resources and/or strengthen existing resources. CONCLUSIONS: The manner in which the child will be guided through the procedure is developed based on the child's reactions. This approach demonstrates that children are actively participating during NRMPs. Supporting younger children during NRMPs consists of guiding them through a shared situation that is mutually beneficial to the child, the parent and the nurse. Play during NRMP is an important tool that enables the support to be perceived as positive.

Social support outside work and return to work among women on long-term sick leave working within human service organizations.

AIM: To investigate the relationships between return to work and social support outside work among women on long-term sick leave from human service organizations. BACKGROUND: Work is an important part of life and is, in general, considered to be supportive of health and wellbeing. Few studies have thoroughly investigated the importance of aspects of social support outside work for return to work. METHODS: A cohort of women on long-term sick leave was followed with questionnaires from 2005 to 2012. RESULTS: The availability of social attachment increased the women's work ability, return to work, and vitality significantly more over time. There were positive relationships between return to work and seeking support in terms of emotional support and comfort and expressing unpleasant feelings. CONCLUSIONS: Important resources to increase return to work can be found in factors outside work, such as close social relationships and support seeking. Thus, it is important to take the woman's whole life situation into account and not focus solely on aspects related to the workplace.

Consequences of Needle-Related Medical Procedures: A Hermeneutic Study With Young Children (3-7 Years).

UNLABELLED: Needle-related medical procedures (NRMPs) are often frightening and cause children anxiety and pain. Only a few studies have examined the perspectives of younger children. More knowledge is needed about younger children's experiences in caring situations such as NRMPs. AIM: The aim of this study was to explain and understand the consequences related to NRMPs from younger children's perspectives. METHODS: Participant observations and interviews with younger children who had experienced NRMPs were analysed using a lifeworld hermeneutic approach. RESULTS: Experiencing fear is central for younger children during an NRMP and interpretation of its consequences formed the basis for the following themes: seeking security, realizing the adult's power, struggling for control, feeling ashamed, and surrendering. A comprehensive understanding is presented wherein younger children's experiences of NRMPs vary across time and space related to weakening and strengthening their feelings of fear. CONCLUSIONS: Awareness is needed that adults' power becomes more obvious for children during an NRMP. Children's surrender does not necessarily imply acceptance of the procedure. Providing children with opportunities to control elements of the procedure creates a foundation for active participation, and vice versa.

Meeting Swedish Health Care System: Immigrant Parents of Children With Asthma Narrate.

Coming to a new country involves many challenges. One of them is to approach a new health care system when you have a child with asthma. The aim of this study was to gain a broader understanding of immigrant parents' experiences of the Swedish health care system. Twelve parents of children with asthma were interviewed and their narratives were analyzed by using qualitative content analysis. The results show that immigrant parents' experiences of Swedish health care vary and involve both advantages and disadvantages. Advantages of the Swedish health care system are described as Being met with respect and Affordable care, while disadvantages are described as Problems with communication, Being discriminated against and Lack of confidence. The disadvantages are challenges for health care professionals, who are expected to offer care on equal terms to the whole population. Therefore, they need to provide culturally competent care and encourage immigrant parents to voice their expectations and worries.

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.

"I have to turn myself inside out": caring for immigrant families of children with asthma.

In multicultural societies, health care professionals encounter immigrant families of children with asthma. They play an important role in supporting these families, but few studies have focused on this phenomenon. The aim of the present study is to gain a broader understanding of the challenges health care professionals face in their encounters with non-Western immigrant parents of children with asthma. Seventeen professional caregivers were interviewed, and their narratives were analyzed using qualitative content analysis. The results show that health care professionals' main challenges when encountering immigrant parents can be described by the theme, "Turning oneself inside out." This theme is characterized by five categories: gender and professional issues, impact on professional relationships, communication challenges, unfamiliar disease and treatment perceptions, and time issues. The results highlight the importance of providing health care professionals with support and organizational conditions that increase opportunities to understand the unique situation of these families.

Assisting teens with asthma to take command.

To meet and work with teenagers may be a challenge for caregivers as adolescence is a period when youths try to establish autonomy. Although asthma is an increasing problem worldwide, few studies have addressed professional caregivers' motives and actions. Therefore, the aim of this study was to describe professional caregivers' strategies in their work with teenagers with asthma. Grounded theory, inspired by Glaser, was used to uncover the phenomenon. The informants were seven professional caregivers who worked at an eight-day asthma camp for teenagers in Sweden. Participant observations and interviews were used, and the first author collected the data and participated in the activities. Findings show that professional caregivers' core concern is to assist teenagers with asthma to take command. This core concern gives rise to five strategies: showing respect, being at hand, promoting own responsibility, promoting to exceed boundaries and promoting reflections. In professional caregivers' attempt to assist teenagers to take command some differences are seen in the way they support boys and girls. One conclusion drawn from our study is that the provisional theory of 'Assisting teenagers with asthma to take command' is not only suitable for professional caregivers working at asthma camps; it may, in some degree, also be used as a source of inspiration for professional caregivers in other settings.

Asthma--quality of life for Swedish children.

AIMS AND OBJECTIVES: The purpose of this study was to describe how Swedish children with asthma experience their QoL and to search for possible associations between their experience of QoL and some determinants. BACKGROUND: Asthma is a chronic disorder that can restrict a child's life, physically, emotionally, socially and spiritually, and this has an impact on a child's quality of life (QoL). METHODS: Two hundred and twenty-six children with asthma (37% girls and 63% boys) and 371 parents of these children participated in the study. The Paediatric Asthma Quality Of Life Questionnaire (PAQLQ) was used to measure the children's QoL. This questionnaire reveals how the children's asthma interferes with their normal activities, their symptoms and how this interference has made them feel. RESULTS: The findings show that most children with asthma estimated their QoL towards the positive end of the scale. The children reported more impairment in the domain of activities than in emotions and symptoms. The most commonly restricted activity was the children's ability to run. Significant associations were found between a higher QoL outcome and being a boy, as well as living in the south of Sweden. A higher QoL was also found in children with mothers older than 40 years of age and in children with cohabiting parents. It was also associated with their fathers' QoL in a positive direction. CONCLUSIONS: It is important that children with asthma will maintain a high QoL. In this study the children were being treated with asthma medication when they evaluated their QoL. Perhaps this fact might have influenced the results in a positive direction. RELEVANCE TO CLINICAL PRACTICE: The findings of our study underline the importance of accurate nursing assessment including background variables of the children. Nurses also have to be aware that some of the children in the study have a low QoL and these children must not be forgotten. In addition, as caring tends to focus on the patients' limitations, another important issue for nurses is to try to discover those aspects in a child's daily life that contribute to a high QoL in order to improve and maintain the child's wellbeing.

Relations governed by uncertainty: part of life of families of a child with asthma.

This study identifies what influences and characterizes family relations in families of a child with asthma. Seventeen mothers of children aged between 6 and 16 years participated in audio-taped in-depth interviews. The researchers were inspired by grounded theory in data collection and data analysis. The core category that developed was being governed by disease-engendered uncertainty. The category mothers' availability was seen in two dimensions. The first dimension, mothers' being available for the child with asthma, created two subcategories: 1. control and 2. tight bonds. The second dimension, mothers' being less available for other family members, also created two subcategories: 3. being forsaken and 4. lack of understanding. Nursing implications are discussed in relation to the findings.

Having a child with asthma--quality of life for Swedish parents.

BACKGROUND: Asthma is the most common chronic childhood disease. Childhood asthma contributes significantly to morbidity among children and has a significant impact on the quality of life (QoL) and daily routines of both the children and their parents. AIM AND OBJECTIVE: The purpose of this study was to investigate how Swedish parents of children with asthma experience their QoL, and to investigate whether there were differences concerning QoL between parents within the same family. The purpose was also to investigate possible connections between their QoL and background variables. METHOD: A total of 371 parents of children with asthma (57% mothers and 43% fathers) participated in the study. The Paediatric Asthma Caregiver's Quality Of Life Questionnaire (PACQLQ) was used to measure the parents' QoL, i.e. how the child's asthma interferes with the parents' normal activities and how it has made them feel. RESULTS: The findings show that most parents of children with asthma evaluated their QoL as close to the positive end of the scale, and there was close agreement in the scoring between parents within the same family. Significant associations were found between parents' lower QoL outcome and living in the North of Sweden. There were also significant associations between fathers' lower QoL outcome and having a child younger than 13 years of age and mothers' lower QoL outcome and having a child with severe asthma. Although the result shows that a child's asthma did not influence the parents' QoL to a greater degree, it is still important for healthcare workers to help these parents to sustain and improve their well-being. CONCLUSIONS: The fact that they just evaluated their QoL during the preceding week only, and did so at the time when their children were being treated with asthma medication, might have influenced the results in a positive direction.