Trustful conversations: a qualitative interview study on older patients' experiences of the intervention Proactive healthcare in a Swedish primary care setting.

AIM: To explore older patients' experiences of the intervention Proactive healthcare for frail elderly persons. BACKGROUND: Previous research has indicated that continuity and good access to primary care can improve satisfaction in older people seeking care. However, little is known about the older patients' experiences in taking part of interventions aiming to enhance the care. METHODS: Individual interviews were conducted with 24 older patients who participated in the intervention Proactive healthcare for frail elderly persons, selected from nine Swedish primary care centres. Interviews were analysed using qualitative content analysis. FINDINGS: Older patients' experiences of the intervention involved five manifest categories: Ways of naming the elder care team, covering the older patients' lack of understanding regarding their connection to the team, and the need for clarity on this and on how the specialised care provided differed from conventional care; Availability, indicating how older patients associated easy access and a direct telephone number with a team nurse available at certain times with a sense of security; The importance of relations, covering how patients appreciated continuity in their personal and professional conversations with staff; A feeling of safety and trust, stressing the value of older persons attach to being given enough time, to be listened to and being recognised as people; and Finiteness of life, which refers to the difficulty of having end-of-life conversations and the need for experienced staff with personal knowledge of the patients. The latent theme Trustful conversations was created to give a deeper meaning to the content of the categories.Trustful conversations, created through good personal knowledge of patients and continuity of contact, engender a feeling of safety in older patients. Using elder care teams could result in a better quality of care, with increased satisfaction and feelings of security among patients, and a reduction in healthcare needs.

Policy Narratives on Palliative Care in Sweden 1974-2018.

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life.

'Do you have a future when you are 93?' Frail older person's perceptions about the future and end of life - a qualitative interview study in primary care.

OBJECTIVE: To explore frail older persons' perceptions of the future and the end of life. DESIGN: Qualitative content analysis of individual semi-structured interviews. SETTING: Nine primary health care centres in both small and middle-sized municipalities in Sweden that participated in the intervention project Proactive healthcare for frail elderly persons. SUBJECTS/PATIENTS: The study includes 20 older persons (eight women and 12 men, aged 76-93 years). MAIN OUTCOME MEASURES: Frail older persons' perceptions of the future and end of life. RESULTS: The analysis uncovered two main categories: Dealing with the future and Approaching the end of life. Dealing with the future includes two subcategories: Plans and reflections and Distrust and delay. Approaching the end of life includes three subcategories: Practical issues, Worries and realism, and Keeping it away. CONCLUSION: This study highlights the diverse ways older people perceive future and the end of life. The results make it possible to further understand the complex phenomenon of frail older persons' perceptions on the future and the end of life.KEY POINTSThe study found that older persons described their future as contradictory- with a broad spectrum of approaches, where some wanted to deal with these subjects and others wanted to ignore them.•Older persons that consciously planned for the future had tactics that often were related to goals that functioned as motivators to live longer.•Those who adopted a more passive approach did not think about what the future might hold in terms of losing autonomy and deteriorating health.•Older persons that approached end of life in a more proactive way wanted to plan practical arrangements around death but often found it hard to address this issue with relatives.•Those older persons that had a more passive approach to end of life preferred not to think about those issues, and some explicitly stated that they did not want to address the final period of life.

Maneuvering the care puzzle: Experiences of participation in care by frail older persons with significant care needs living at home.

PURPOSE: Despite evidence that older persons want to be involved in care, little is known about how frail older people with significant care needs living at home experience participation in care provided by different stakeholders. This study investigates the experiences of participation in care by older people following their involvement in an intervention of a health care model called Focused Primary care (FPC). METHODS: Individual semi-structured interviews were conducted with 20 older persons in five municipalities in Sweden. RESULTS: The results show that older persons highlighted opportunities and limitations for participation on a personal level i.e., conditions for being involved in direct care and in relation to independence. Experiences of participation on organizational levels were reported to a lesser degree. This included being able to understand the organizational system underpinning care. The relational dimensions of caregiving were emphasized by the older persons as the most central aspects of caregiving in relation to participation. CONCLUSIONS: Primary care should involve older persons more directly in planning and execution of care on all levels. An ongoing connection with one specialized elderly team and a coordinating person in Primary care who safeguards relationships is important for providing participation in care for frail older persons with significant care needs living at home.

Dying as an issue of public concern: cultural scripts on palliative care in Sweden.

In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve "good palliative care". The aim of this study has been to analyse how experts make sense of the development and the current state of palliative care. Departing from this aim, focus has been on identifying how personal experiences of 'the self' are intertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliative care. Twelve qualitative interviews were conducted. Four scripts were identified after analysing the empirical material: 1. script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain definitions. The findings of this study illustrate how experts in complex ways intertwine experiences of 'the self' with meta-levels concepts in order to make sense of the field of palliative care. The participants did not endorse one "right way" of "good" deaths. Instead, palliative care was considered to be located in a complex state where the historical development, consisting of both desirable ideals, death denials and lack of guidelines, and more recent developments of strives towards universal concepts, "improvement" and increased bureaucracy altogether played a significant role for how palliative care has developed and is organised and conducted today.

Proactive healthcare for frail elderly persons: study protocol for a prospective controlled primary care intervention in Sweden.

INTRODUCTION: The provision of healthcare services is not dedicated to promoting maintenance of function and does not target frail older persons at high risk of the main causes of morbidity and mortality. The aim of this study is to evaluate the effects of a proactive medical and social intervention in comparison with conventional care on a group of persons aged 75 and older selected by statistical prediction. METHODS AND ANALYSIS: In a pragmatic multicentre primary care setting (n=1600), a prediction model to find elderly (75+) persons at high risk of complex medical care or hospitalisation is used, followed by proactive medical and social care, in comparison with usual care. The study started in April 2017 with a run-in period until December 2017, followed by a 2-year continued intervention phase that will continue until the end of December 2019. The intervention includes several tools (multiprofessional team for rehabilitation, social support, medical care home visits and telephone support). Primary outcome measures are healthcare cost, number of hospital care episodes, hospital care days and mortality. Secondary outcome measures are number of outpatient visits, cost of social care and informal care, number of prescribed drugs, health-related quality of life, cost-effectiveness, sense of security, functional status and ability. We also study the care of elderly persons in a broader sense, by covering the perspectives of the patients, the professional staff and the management, and on a political level, by using semistructured interviews, qualitative methods and a questionnaire. ETHICS AND DISSEMINATION: Approved by the regional ethical review board in Linköping (Dnr 2016/347-31). The results will be presented in scientific journals and scientific meetings during 2019-2022 and are planned to be used for the development of future care models. TRIAL REGISTRATION NUMBER: NCT03180606.

Perceptions of physical activity among elderly residents and professionals in assisted living facilities.

BACKGROUND: Physical activity is often described as being important for people of all ages, but what different people mean when they talk about physical activity is unclear. METHOD: A phenomenographic method was used to analyze how 13 older people and 17 professionals answer the question, "If I say physical activity, what does the concept mean to you?" as part of semi-structured interviews conducted in four assisted living facilities in two different municipalities. RESULTS: We identified a number of different perceptions of physical activity, with the older people and professionals having different responses. Elderly and professionals alike, define physical activity as a requirement for life and as an opportunity to maintain the body although they define the concepts in different ways. Elderly define the concept as a way to create meaning and the professionals have the attitude that the concept means everyday activities. CONCLUSION: The concept of physical activity may be defined in many different ways. This study has shown that elderly and professionals do not define physical activity in the same way. Therefore, professionals need to be aware of these differences when talking with elderly about individual needs in everyday life.

Support as a complement, intrusion and right--evidence from ageing and disability support service users in Sweden and Australia.

How service users conceptualise their personal support services is under researched, even though this understanding is important for responsive policy development and service implementation. This paper tests the proposition that service users understand formal support in three ways: support is a complement to their other arrangements, an intrusion into their personal life and a right. These three concepts were identified using discourse analysis in a Swedish study of older people wanting in-home support services. To test generalisability of these concepts, they were applied to data from an Australian study of people using disability personal support. The analysis found that the three concepts were core to people's views of their support, although the construction of the concepts differed in the two countries. Service users in Sweden asserted their right to services more forcefully than those in Australia, and they had higher expectations that their support needs would be met. These differences reflect the impact of each country's social policy environment on service users' expectations. The analysis suggests that service users and their families want to control their formal support arrangements to complement their informal care and their life preferences and to minimise the intrusive aspects of formal support. The findings imply that the three concepts have utility for theorising service users' perspectives, informing policy and developing implementation strategies which enhance peoples' quality of life.

The meaning of oral health-related quality of life for elderly persons with dementia.

OBJECTIVE: Studies of oral health developments increasingly include self-reported assessments of how oral health affects quality of life (QoL), referred to as "oral health-related QoL". People with dementia are often excluded in studies of oral health-related QoL and thus our aim in this study was to explore this area in elderly persons with dementia. MATERIAL AND METHODS: Eighteen elderly individuals (aged between 78 and 94 years) with dementia of varying degrees of severity were interviewed with the aid of an interview guide; pictures and objects were used as stimulus material (triggers). The material was analyzed using grounded theory as point of departure, and a professional assessment of the oral health of the participants was used as reference. RESULT: Four categories were identified: the ability to chew and eat, independence, oral problems, and teeth are important. These factors are largely consistent with those that have emerged in earlier studies of the elderly, but in some cases less pronounced in persons with dementia. CONCLUSION: The use of triggers is a positive way to communicate oral health-related QoL among persons suffering from dementia, although the material used in this study needs further evaluation and development.

Care and caring culture as experienced by nurses working in different care environments: a phenomenological-hermeneutic study.

AIM: The aim is to understand and develop the concept of care and caring culture and to do so based on the empirical/phenomenological standpoint of nurses' lived experiences of working in different environments. BACKGROUND: Culture, care and caring are significant concepts mentioned and used in connection with nursing practice. In the nursing literature, the 'caring culture' as a concept is mostly taken for granted, and it is up to the reader to determine what caring culture means. METHOD: A phenomenological-hermeneutic method was used to uncover the meaning of lived experiences though interpretation of interviews transcribed as text. Seventeen nurses working on different wards were interviewed in 2006. A follow-up focus-group discussion was conducted with seven of the nurses 1 year later for validation of the findings. FINDINGS: Thematic analyses revealed five themes: you have to adapt to the existing care culture; seeing the invisible; being yourself; the strong personalities; the patients must adapt themselves to the circumstances. Adaptation to unwritten routines entails adaptation to the culture and the common value system. On wards described as "homelike", nurses may act in a way that reflects their own values. DISCUSSION: The care and caring culture can be understood from the perspective of what it means to care and from the perspective of how care provision is accomplished. To attain a caring culture founded on certain values, for example caritas, love and charity, we must first understand how the organization and personnel understand caring.

Home care as a family matter? Discursive positioning, storylines and decision-making in assessment talk.

Home care arrangements for older people are coordinated via a client-centred assessment process. This article describes how storylines and discursive positioning are used among older people and their relatives when divergent opinions of care needs are expressed. Eleven assessment interviews were studied using discourse analysis. The results show that relatives and older people advanced three major storylines, and positioned themselves within them with respect to the need for help. These storylines were based on whether the persons viewed home care as an intrusion into daily routines and relationships, or as a complement and support in everyday life, or as a right. The content of the storylines and the ways in which positions were shaped within them illustrate how positioning is incorporated as part of the ongoing reflexive process in interaction in which participants form an image of the older person's needs. Assessments clarify the views of the participants on home care, but they also reflect the discourses that are prevalent in the aged care community and in society in general. The article raises questions about strengthening older people's participation in the decision making process and also whether a new communicative practice is needed for assessments, i.e., one that proceeds on the basis of a broader family perspective.

Discursive patterns in multiprofessional healthcare teams.

AIM: The aim of this paper is to report a study exploring how members of multiprofessional healthcare teams talk about their team. Specifically, the team members' talk was analysed to explore the discursive patterns that emerged and their functions. BACKGROUND: Over recent decades there has been an increasing demand in Western countries to change care organizations and to coordinate resources and professional competencies to meet the needs of patients/service users better. Because society promotes this kind of work, it may be valuable to explore the self-presentations of a multiprofessional healthcare team. METHODS: A discourse analysis was carried out on existing empirical data from focus group interviews with a member-identified category sample comprising 32 healthcare professionals in six authentic multiprofessional teams in south-east Sweden. The analysis focused on the participants' discursive constructions of multiprofessional teamwork, on the way they talked about their group, and, in particular, on their use of the pronouns we, they and I. FINDINGS: The constructions of 'we' by multiprofessional healthcare teams showed discursive patterns that are here referred to as knowledge synergy and trusting support, which included factors such as cross-learning and personal chemistry. The pronoun we was also used as a flexible resource to manage expertise, power and leadership within the teams, and it might also function to ease the pressure for consensus. CONCLUSION: These discursive patterns provided powerful rhetorical resources for team members, both to affirm their choice of membership and to claim superiority in relations with the surrounding community (the others) by linking to a societal discourse that promotes collaboration.

Bases for assessments made by telephone advice nurses.

Telephone advice nursing includes triage, advice, referral, information and coordination. The aim of the study was to explore what telephone nurses base their assessments on. We conducted 14 interviews with seven telephone nurses at a health-care call centre in Sweden. Two authentic calls per nurse were used in stimulated recall interviews, where the nurses commented on the basis for their assessments. A qualitative manifest content analysis was employed. Three major categories emerged in the analysis: care-seeker, e.g. 'symptomatic sounds'; nurse, e.g. 'nurse's own experience'; and organization, e.g. 'health-care accessibility'. The findings show that the telephone advice nurses' bases for assessments appear to be very broad. They include both verbally and nonverbally communicated information, and care-seeker-, nurse- and certain organization-related factors influence the assessments. We found that an individualistic view of the care-seeker seems to dominate the assessments in non-urgent calls to a health-care call centre.

Domestic strain: a hindrance in rehabilitation?

Long-term sick leave due to musculoskeletal disorders has increased, especially for women. The aim of this paper was to explore women's and men's descriptions of the private arena in relation to rehabilitation and sickness absence. This study is part of a larger project focusing on consequences of sick leave. Individual interviews were conducted in 1997 and 1998 with 20 women and men who had been long-term sick-listed in 1985 with musculoskeletal diagnoses. The data were analysed using Grounded theory in combination with gender analysis, which involved separately comparing men's and women's statements in order to find similarities and differences. According to the interviewees, factors in the private arena were closely associated with the rehabilitation process. Women described themselves as being responsible for the domestic work while men more often 'helped out' when asked to do so. Women and men described similar strategies to facilitate domestic work. Three dimensions of domestic life were identified, comprising division of domestic work and division of responsibility for domestic life and the amount of socio-emotional support or isolation at home. Using these dimensions, a 'domestic strain model' was developed. Our study indicates that long-term sick-listed women experiencing domestic strain would rather stay at home than return to work. Domestic strain involves inequities in the division of work and responsibilities and a lack of socio-emotional support at home. However, the model of domestic strain needs further empirical testing.

Factors and circumstances related to complaints in emergency medical dispatching in Sweden: an exploratory study.

There are 20 SOS Alarm emergency dispatch centres in Sweden, and from these centres approximately one million ambulances are dispatched each year. The aim of the study was to explore factors and circumstances that contributed to misjudgements or filed complaints in emergency medical dispatching filed at the Patient Advisory Committees (n=24), the Swedish National Board of Health and Welfare (n=20) and the Medical Responsibility Board (n=10). This is a retrospective study of all decisions on complaints made between 1991 and 2000, and the data were analysed in two phases. In the first phase, categories of cause were revealed, and in the second phase, factors and circumstances were identified that related to misjudgements or filed complaints. The findings show that in nearly half (23/54) of the complaints, the assessments were stated as been made on the basis of second-hand consultations, e.g. the SOS operators had not spoken directly to the ill person. In 19 out of 21 complaints dealing with the decision-making process, the assessments were made on second-hand information. Second-hand information may constitute an aggravating circumstance in assessing the urgency of the care needed on the telephone. The findings suggest that the call receivers should be more cautious when undertaking assessments on the basis of information provided by a third person.

Telephone nurses' experience of problems with telephone advice in Sweden.

By telephoning a healthcare call centre, individuals in Sweden can consult a nurse to discuss medical problems and health care accessibility, and to receive professional information on how to find their way about the health care system. The aim of the study was to identify problems, difficulties and disadvantages that telephone nurses with varying degrees of experience had met during their professional careers. The Delphi technique was used with three sets of questionnaires. Twenty-five nurses with varying experience of working with telephone advice from six 24-hours call centres participated in the study. The response rate was 100%. An open-ended question generated 154 statements. Comments were categorized into 24 different problem categories. Ten problem categories were mainly related to the nurse perspective, i.e. the problems experienced were associated with the qualities of the nurse, eight principally to the patient perspective, i.e. problems associated with caller characteristics and six mostly to the organizational perspective, i.e. problems linked to the organization of the national health service. 'Lack of health care resources' was rated as the biggest problem, 'second-hand consultations' as the second and 'always making a decision' as the third biggest problem. Decision-making seems to be the core of telephone advice nursing and problems related to the nurses, patients and organization seem to influence the telephone nurses' working situation. Training should focus on active listening and handling social conflicts.