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.

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.

"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.

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.