"Era delar är min helhet" : En studie om att vara äldre och multisjuk

The overall aim of this thesis is to describe what it means to be old and live with multimorbidity. An additional aim is to examine and describe the contextual meaning of the phenomenon in ordinary housing and nursing homes, and a third aim is to deepen our understanding of the situation for old people who also are ill. The thesis uses a caring science perspective and a reflective lifeworld approach founded on phenomenological philosophy. This approach searches for and describes the meaning of a phenomenon, its variations and its essential meaning structure. Interviews were used for data collection and data were analyzed for meaning, searching for the essence of the phenomenon. The findings are presented in two empirical studies and one philosophical excursion. The empirical studies have been further thematized with the essential meanings from the empirical studies. The philosophical excursion is the result of a more profound understanding of the thematized meanings. The essential meaning of being old and living with multimorbidity in ordinary housing is described as a struggle to maintain identity in a life situation that changes. Multimorbidity and aging pose existential barriers at the same time as the possibility of living an independent life and being oneself is hindered. Ordinary housing is experienced as a place where the old can be themselves, and a place that is associated with independence. On the other hand, multimorbidity threatens the possibility of continuing to live in their private homes, as does the failure of others to meet the old as individuals. The essential meaning of being old and living with multimorbidity in nursing homes is described as striving for independence which brings with it a zest for life and a feeling of security. The older’s degree of independence can change due to the fragile health situation, and is characterized by the experience of not being a burden for the busy caregivers and relatives. Independence can change to insecurity, vulnerability and helplessness. The themes of essential meaning that have been extracted from the empirical studies suggest that the experiences of frailty and loneliness differ more between those living in ordinary housing and in nursing homes than the experiences of trust and independence differ. The philosophical excursion illuminates how older people with multimorbidity experience their lives as an ability to manage their daily lives and not merely an absence of disease symptoms. A person is “just” sick, independently of the objective quantity of diseases s/he may suffer from. Health and wellbeing occur from the ability to live in existential coherence, which is encouraged when the older people are allowed to retain their habits, the ability to be oneself, individual’s life story and by social relationships, as well as by continuity among the caregivers

Management Practices Promoting Sustained Implementation of the Quality Register Senior Alert for Older Adults in Municipal Care in Sweden

Background:Senior Alert is a national quality register aimed at supporting a standardized, structured, and systematic preventive care process foradults aged 65 and over in the areas malnutrition, pressure ulcers, falls, problems with oral health and bladder dysfunction. Therefore, the quality register is particularly suitable for older adults with multimorbidity. Aim: The aim was to describe management practices that contributed to the sustained implementation of the quality register Senior Alert inmunicipal elderly care in Sweden. Methods: The design of this pilot study was descriptive and inductive. The sample of n = 12 included managers (n = 7) and care staff (n = 5) atseven municipal care homes for older adults in Sweden. The study was performed between April 2014 and June 2014 using twomethods: Individual interviews and nonparticipant unstructured observations. Data were analyzed using qualitative content analysis. Results: The analysis led to the following generic categories: leading teamwork, leading a preventive care process and leading a supportiveorganizational structure, and to one main category: management promoting learning and quality improvement. Conclusion: To be sustainable, Senior Alert implementations in municipal elderly care need management. Management, by leading teamwork, apreventive care process and a supportive organizational structure, is essential for achieving learning and quality improvement

Complexity in Daily Living of Older Adults with Multimorbidity: Health, Social and Informal Care Utilization and Costs

Aim: The aim of the study was to describe health, social and informal care utilization and costs for older adults with multimorbidity. The design was descriptive and retrospective. Methods: The setting was a medium-sized town in an urban area of Sweden and included 10 health centers. Data were collected during 2011 using individual, structured interviews with the informal carers of 20 older adults with multimorbidity. Retrospectively, for a period of 18 months, data were also collected from the older adults’ patient registers and records, as data regarding the costs of their health and social care, in- and out-patient care and municipal care including home services. Results: The primary result was that older adults with multimorbidity utilize health and social care from different principals, through different contacts. The results also provide insight into the complexity of these older adults’ daily living. Their 18-month health and social care costs varied between 12,084 and 137,187 Euros. For 12 older adults who utilized informal care, their calculated costs varied between 2,092 and 70,590 Euros. Conclusion: The conclusion is that the increasing number of older adults with multimorbidity and their health and social care utilization and costs should be taken into account in healthcare policy and the organization of health and social care

That mr. Alzheimer… you never know what he’s up to, but what about me? A discourse analysis of how Swedish spouse caregivers can make their subject positions understandable and meaningful

The spouses of people suffering from dementia are commonly first-in-line caregivers. This canhave a considerable effect on their own lives, health and marriages. Several studies havefocused on spouses’experiences, but very few have focused in any depth on their descrip-tions of themselves as subjects. Therefore, the aim of this study is to describe how spousecaregivers can express themselves when living with and caring for their partners withdementia. The study has a qualitative approach with a discourse analysis design and usesanalytical tools such as rhetoric, subject positions and categorization. The results reveal threesubject positions: as an actor, as a parent and as a survivor. The results show that as spousesstruggle with external and internal clashes as subjects, they therefore need to develop copingstrategies. They also experience pronounced loneliness and a risk to their own health. There isthus a need to support these spouses as individuals in their differing and changing needs

Being 'alone' striving for belonging and adaption in a new reality : The experiences of spouse carers of persons with dementia

Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers’ experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results: The analysis resulted in one overall theme Being   ‘alone’   striving   for   belonging   and adaption  in  a  new  reality, synthesized from four sub-themes: (1) Being  in  an  unknown  country; (2) Longing  for a  place  for  me  and  us; (3) Being  a  carer  first  and  a  person  second; and (4) Being  alone  in  a relationship. Conclusions: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple’s relationship for their mutual well-being

Exhausted and trapped in isolation. Caring for a spouse with dementia during the Covid-19 pandemic

Even before the Covid-19 pandemic, spouse carers of persons with dementia (PwDs) found their care responsibilities overwhelming and had little time to focus on their own lives. To minimize the risk of being infected with Covid-19, older persons are recommended to self-isolate in their homes, while formal support such as respite care and day care centers are withdrawn. This study involved semi-structured interviews with 24 spouse carers of community-living PwDs, with the aim of describing their situation during the pandemic. The interviews were analyzed with qualitative content analysis. Results revealed that they commonly declined help because of the perceived risk of their spouse being infected with Covid-19 and thus also possibly causing their death. They described feelings of being trapped in their situation, as they experienced having no choice than take all responsibility for the care of their partner themselves, with cost of being unable to take necessary breaks. This was described as making an already strained situation almost unbearable, which led to conflicts with their partner. However, the spouses also described positive aspects due to strategic changes in health and social care provision to prevent the spread of the virus, such as greater staff continuity in home care services, and patient transportation service. These made the PwD less stressed and influenced their everyday life positively. It could be concluded that the extent burden during the Covid-19 pandemic calls for extensive development of tailored support to better tackle the rapid changes that can occur in a society

Prioritizing and meeting life-threateningly ill patients' fundamental care needs in the emergency room-An interview study with registered nurses

Aim To explore how registered nurses in the emergency room describe their work approach and prerequisites for meeting life-threateningly ill patients' care needs from the perspective of a person-centred fundamental care framework. Design A descriptive, qualitative interview study. Method Individual interviews were carried out with 14 registered nurses with experience of working in an emergency room in Sweden, during 2019. Data were analysed using thematic analysis, according to Braun and Clarke. The COREQ checklist was used for reporting the findings. Results Three themes were identified: Task-oriented nursing care based on structured guidelines and checklists; Fundamental care not being promoted or prioritized in the emergency room; and The organization and responsibilities for providing person-centred fundamental care are unclear. Results showed that registered nurses structure their work approach based on prevailing organizational prerequisites as well as personal ones. Meeting patients' fundamental care needs was not always prioritized; their physical needs were met to a greater extent than their relational and psychosocial needs. Registered nurses did not prioritize fundamental care when the organization did not. Conclusion From the registered nurses' perspective, they structured their work based on the prevailing conditions for meeting patients' fundamental care needs. The organizational structure does not clearly state that fundamental care should be performed in the emergency room, and the registered nurses' work approach there for meeting patients' fundamental care needs is not adapted to provide patients with person-centred care. Impact To date, little is known about registered nurses' work approach and prerequisites in meeting life-threateningly ill patients' fundamental care needs in the emergency room. Our findings indicate that the organizational structure is pivotal in supporting registered nurses to provide person-centred fundamental care. The knowledge from this study can be used in emergency care settings to facilitate person-centred fundamental care and thereby avoid fundamental care being missed