| 1. |
- Brännström, Margareta, 1957-
(författare)
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Ett liv i berg och dalbana : innebörder av att leva med svår kronisk hjärtsvikt i palliativ avancerad hemsjukvård utifrån patienters, närståendes och sjuksköterskors berättelser
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall purpose of this thesis is to illuminate meanings of living with severe chronic heart failure (CHF) in palliative advanced home care (PAHC) as disclosed through patients’, close relatives’ and nurses’ narratives. This thesis comprises four papers that illuminate the phenomenon from various perspectives and with different focus. In paper I four patients with severe CHF in PAHC were interviewed. In paper II three of their close relatives were interviewed. In paper III one man and his wife in PAHC were interviewed at 3-5 month intervals over a 4.5-years period. In paper IV 11 nurses in PAHC were interviewed. In all papers narrative interviews were conducted and the text was interpreted using a phenomenological-hermeneutic method. The result shows that meanings of living with severe CHF in PAHC is to be ‘knocking on death’s door’ yet surviving. This means never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable, interwoven symptoms. The course of the illness forces sufferer to ride a symbolical ‘roller coaster’, an ongoing oscillation between ‘ups and downs’. Being offered a safety belt in the ‘roller coaster’ by the PAHC team means feelings of safety (I). Meanings of being a close relative of a person with severe CHF in PAHC is to be following the life- threatening ups and downs that the ill person goes through. It is like being a fellow passenger on the ‘roller coaster’ ride that is their loved one’s disease, with burdensome responsibility for easing the ‘downs’ and supporting the ‘ups’. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team (II). Meanings of living the ‘ups and downs’ over time is being captive in a roller-coaster ride, side by side, with the ‘ups and downs’ caused by the illness. Living close to death is inescapable when recurrent periods of deepest ‘downs’ force one to face that one’s life together is coming to an end. The relationship between the spouses is severely tested but seems to withstand the strain and meaning is found in togetherness in life. Sharing the safety belt on the ‘roller coaster’, offered by the PAHC team, evokes feelings of security. However, the safety belt is adjusted to the man with severe CHF leaving the wife partly without comfort and at times uncertain, especially in the deepest ‘downs’ (III). Meanings of being a palliative nurse for patients with severe CHF in PAHC is being firmly rooted and guided by the values of palliative culture. Being a facilitator for the patient with CHF to live his/her everydaylife in the best way possible is difficult, challenging but overall positive. The nurses get into a tight corner when palliative culture values clash and do not correspond to nurses’ interpretation of what is good for the patient with severe CHF. There is a limit to nurses’ pliability to patients’ and close relatives’ will, as they are strongly convinced that resuscitation is not an option. Nurses have already made up their mind about that they do not perform heart- lung resuscitation (IV). The comprehensive understanding is that meanings of living with severe CHF in PAHC is being captive in a ‘roller-coaster’ life with varying periods between unpredictable improvement and deterioration of the body, for the rest of life. Living with the unpredictable, deteriorated body means to oscillate between enduring the suffering in ‘downs’ and enjoying life in ‘ups’ (I-III). Living with death so close over and over again i.e. being in a limit situation evokes feelings of uncertainty (I-IV) and confidence (I-III). Being positive dependent on PAHC facilitates a life as normal as possible in togetherness at home (I-IV). The comprehensive understanding of the four papers (I-IV) are discussed in the light of a theoretical framework from the German psychiatrist and philosopher Karl Jaspers thoughts about limit situation, the Danish philosopher K.E Lögstrup thoughts about the ethical demand, palliative theories and relevant empirical studies.
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| 2. |
- Hedman, Ragnhild, 1962-
(författare)
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Striving to be able and included : Expressions of sense of self in people with Alzheimer's disease
- 2014
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- According to research applying a social constructionist perspective, the sense of self is not lost in people with Alzheimer’s disease (AD). It is, however, greatly influenced by the symptoms and by how they are treated by other people. Without support, it is difficult to preserve a positive sense of self, when living with progressing cognitive impairments. The stigma associated with cognitive impairment also threatens their sense of self. Harré’s social constructionist theories of self and positioning have been used to study how people with AD express their sense of self. As there is a need to expand the previous research by involving additional participants and research contexts, the aim of the present thesis was to describe, in accordance with Harré’s theories of self and positioning, how people with AD expressed their sense of self in personal interviews and in support groups with other people with AD. The research consists of four substudies (I–IV), and has a qualitative, descriptive, and theory-testing approach. Thirteen people with mild and moderate AD were included, 11 of whom had the early onset form of the disease. Two support groups were formed, led by facilitators who supported the communication and the participants’ expressions of self. Each group met 10 times during an eight-month period. Topics were not predetermined, and introduced by both facilitators and participants. Semistructured interviews were conducted before the groups started and after they ended. The interviews and support group conversations were audio-recoded and analysed with qualitative content analysis, guided by Harré’s theories. In substudy I, the initial interviews were deductively analysed. The findings showed that Self 1 (the sense of being a singular, embodied person) was expressed by the participants without difficulties. Self 2 (the perception of one’s personal attributes and life history) was expressed as feeling mainly the same person. While some abilities had been lost, other had been developed. Self 3 (the socially constructed self) was described as mostly supported, but sometimes threatened in interactions with other people (I). In substudy II, support group conversations were analysed abductively with respect to expressions of Self 2. It was found that participants expressed Self 2 in terms of agency and communion, and a lack of agency and communion (II).In substudy III, a secondary analysis of the data from substudy II was performed inductively with the aim of describing how Self 3 was constructed in the interaction of the support group. Five first-order positions, generating lively interaction, were described: the project manager, the storyteller, the moral agent, the person burdened with AD, and the coping person (III). In substudy IV, all the collected data were reanalysed inductively, focusing on how participants expressed the experience of being research participants. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks (IV). In conclusion, it was found that participants constructed positive social selves through the support from each other, the facilitator, and researchers in the support group (III), and as research participants (IV). Agency and communion were central to Self 2, and decreased with the progression of AD (II). In spite of change, participants perceived themselves as basically the same people, with a potential to learn and develop as persons (I).
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| 3. |
- Melander, Catharina
(författare)
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Piecing together a fragmented world : Structures to promote the understanding of people with advanced dementia
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Understanding people with dementia whose verbal ability has been impaired is a complex and challenging task, even for professional nursing staff. The aim of this PhD thesis was to explore structures that may promote the understanding of people with advanced dementia living in nursing homes. It focusses specifically on (I) the clinical reasoning employed by assistant nurses when utilizing the NPI-NH (Neuropsychiatric Inventory Nursing Home version) as a tool to assess frequency and severity of BPSD (behavioural and psychological symptoms in dementia, i.e. problematic behaviours) in people with advanced dementia, (II) whether a sensor measuring electrodermal activity (EDA) can improve the identification of agitation in individuals with dementia, (III) how an EDA sensor impacts assistant nurses’ structured assessments of problematic behaviours amongst people with dementia and their choices of care interventions, and (IV) how Martha Nussbaum’s approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes. Study I used a method of discourse analysis that focussed on clinical reasoning utilized by assistant nurses when assessing problematic behaviours. In study II, a nonexperimental and correlational observation of the relationship between a sensor measuring EDA and assistant nurses’ structured observations of agitation in people with advanced dementia was applied. Study III used both quantitative and qualitative approaches; data were collected during structured assessments of problematic behaviours conducted by assistant nurses, as well as by focus group interviews with assistant nurses. Study IV took an ethnographic approach with participatory observations that were analyzed with a recursive analysis using a theoretical framework for the conditions necessary for a dignified human life. The structure of the NPI-NH provided a supportive framework that encouraged assistant nurses to discuss and broaden their understanding of the person with dementia (I). The EDA sensor provided continuous information regardless of staff presence and the potential to identify EDA prior to observing these behaviours (II, III), which supported the understanding of the person and when to introduce timely interventions to prevent the onset of problematic behaviours (III). The structure of Nussbaum’s approach to human capabilities illuminated that people with advanced dementia were at risk of living a life in which their opportunities for human capabilities were limited, and hence, the possibility to live a dignified life (IV). An overview of the findings in this thesis indicates that the studied structures were used to piece together fragments of information to create a comprehensive understanding of the needs of the person with dementia. For the structures to support the understanding of the person with dementia, it was crucial that nursing staff were present, attentive and engaged in each person’s situation in order for them to figure out how to piece together and integrate the structures into the overall understanding of the person and, based on that, formulate caring actions in daily life that are meaningful from the perspective of the person with advanced dementia.
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| 4. |
- Santamäki Fischer, Regina, 1952-
(författare)
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Living in consolation while growing very old
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Growing very old into late life means increased suffering that may lead to despair and call for consolation. This thesis looks at the lived experience of very old people and aim at illuminating the meaning of growing very old and the meaning of consolation when growing old. It is part of the Umeå 85+ Study, and of the Consolation Study at the Department of Nursing, Umeå University. The participants were 85, 90, or 95 years old or over, living in the county of Umeå. The thesis comprises four studies with data from thematic interviews that are analysed using a phenomenological hermeneutic method (Studies I, II, IV) and qualitative content analysis (III). For Study I the transcribed interviews of 15 85-year-old people were analyzed and disclosed the meaning of growing very old as: maintaining one’s identity in spite of the changes that come with aging—that is, being able to balance change with feeling the same. This was based on four themes: balancing weakness and strength, balancing slowness and swiftness of time, balancing reconciliation and regret, and balancing connectedness and loneliness. In Study II, interviews with 12 people between 95 and 103 years old were analyzed and disclosed the meaning of being very old as living in hope and being on the move, based on two themes: Being in stillness and in movement, which involves being in one’s aged body, unable to move, and being in the stillness of the inner person occupied with remembering and reconciling life; and Being at the threshold ready to let go, which implies being at peace and feeling confident despite the anxiety of dying. Study III describes how 90-years old and older people perceive consolation. Qualitative Content analysis of 49 interviews revealed four categories perceiving consolation connected to God, others, self, and things and presented in two themes: “Living amidst consolation in the presence of God” and “Seeking consolation”. Study IV examines the meaning of being consoled when growing very old. The interviews with 13 people over 85 years who scored high on a self-transcendent scale were analysed and disclosed the meaning of being consoled as an immediate experience of being carried and embraced by God and supported by the loving care and affection from others and the world, being relaxed, peaceful and full of joy and experiencing hope. The interpretation was based on the main theme Feeling whole, comprising the following themes: Being connected to self, Feeling connected to fellow beings and the world, Feeling connected to God. The meaning of growing very old and the meaning of consolation when growing very old point at a way of aging into late life interpreted as living in consolation. Reminiscence, reflecting on life and transcendence are resources when growing very old that were interpreted to being related to consolation. Thus growing very old and living in consolation is to transcend and come in communion with the sacred; with goodness, light, joy, beauty and life and hope, carried by a connectedness to God (e.g. Higher power) and supported by a connectedness to fellow beings and the world.
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| 5. |
- Öresland, Stina, 1952-
(författare)
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Nurses go visiting : ethics and gender in home-based nursing care
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to explore how nursing is constructed in home-based nursing care from the viewpoint of patients and nurses who are receiving or giving care. Since nursing both constructs and is in turn constructed by the context in which it serves, language plays a central part in those constructions and in this thesis. The thesis has been guided by social constructionism, meaning that the positions the patients and the nurses inhabits have been considered as social phenomenon constructed in discursive processes. There are two ideas that guided this thesis. One idea was that home-based nursing care promotes the association of caring abilities in relation to nursing, women and the private sphere. Another idea was that the place where the care was carried out has ethical implications. Data was collected from interviews with 10 home-based nurses (study I) working in community in the western part of Sweden and 10 patients cared for in their home by these nurses (study II). Nurses and patients were interviewed about their experiences of giving respectively receiving home-based nursing care. The interviews were transcribed verbatim and analyzed with a discourse analytic method in study I and II. The findings in study I show that the nurses described their subject positions as "guests" and "professionals" and that they have to make a choice between these positions, as it is impossible to perform both positions at the same time. Dependent on the situation, both an ethics of care and an ethics of justice were applied by the nurses, that is, to perform according to the subject positions of "guest" or "professional." In study II, the patients describe their own subject position as "safeguard" and the nurses‟ positions as "substitutes". These subject positions provided the opportunities, and the obstacles, for the patients‟ possibilities to receive care in their home which included which kind of strategies, habits and activities the patients described and what tasks and how they considered or expected the nurses to perform. These findings are discussed within a theoretical framework, i.e. a gendered dichotomy of the private spheres versus the public spheres. Inherent in this framework is a discussion of the findings related to the habits that are essential in the nurses‟ and the patients‟ constructions of subject positions. In study III, metaphors used by home-based nurses‟ were explored as a means to discover values and norms held by nurses working in home-based nursing care. Ten interviews with nurses working in home-based nursing care (the same interviews as in study I) were analyzed and interpreted with a metaphor analytic method. In the analysis metaphoric linguistic expressions (MLE) were explored and patterns of MLEs formed two entailments. After exploring MLEs and entailments on an explicit surface level the analysis went to a broader underlying dimension of conceptual metaphors identifying the overall metaphor: "Home-based nursing care is an endless journey". The metaphor "Home-based nursing care is an endless journey" exposed home-based nursing care in constant motion, thereby requiring nurses to adjust to circumstances. This adjustment required ethical maturity based on experience, knowledge, and creativity. The study III focuses on the importance of further developing reflections over experiences related to everyday ethical issues. In study IV, the findings from study I were the starting point for a philosophical exploration of the concept "guest" and its relation to other adjacent concepts such as hosts and hospitality. The question to be answered was as follows: In what ways can home-based nurses‟ description of being "guests" in patients‟ home be understood? The exploration was based on Derrida‟s philosophy of unconditional and conditional hospitality, Levinas‟ philosophy of "face" and "the Other" and Arendt‟s philosophy of "go visiting". The findings indicated that the concept "guest" was not appropriate for the nurses to use when describing their position in home-based nursing care, since the concept was problematic for the content and the complexity of home-based nursing care. The findings also showed that exposing concepts as binaries is fruitful since they show relationship between concepts. Just illuminating the concept "guest" did not reveal the power relationship between the "guest" and the "host" and their relationship to hospitality. The distinction between diverse ethical perspectives could be seen as problematic or as an opportunity. According to this study, the nurses used a plurality of different ethical ideas, such as an ethics of care, an ethics of justice, an ethics of virtue and an "everyday ethics." A possible interpretation could be that this was a sign of a difficulty to maintain distinction between ethical theories in clinical practice. Ethical issues in the private sphere are less commonly explored compared to ethical issues in the public sphere, for example in hospital care. As showed in this thesis, the distinction between the private and the public spheres was problematic. It does not describe two spatially separate spheres, but rather it describes functionally dependent activities, interests and relations, such as diverse areas of ethical ideas and "feminine" and "masculine" positions. Home-based nursing care is a complex area and discourse analysis of the relation between home-based nursing care, subject positions, ethics and gender is more or less lacking. Exploring home-based nursing care outgoing from discourse analytic perspectives and methods is rewarding for nurses‟ practice, education and research as it opens up new perspectives of home-based nursing care.
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| 6. |
- Juthberg, Christina, 1966-
(författare)
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Samvetsstress hos vårdpersonal i den kommunala äldreomsorgens särskilda boenden
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to describe perception of conscience, stress of conscience (stress related to troubled conscience) and burnout, to explore their relationships and to illuminate meanings of the lived experience of troubled conscience in one’s work among registered nurses (RNs) and nurse assistants (NAs) in municipal residential care for the elderly. The thesis comprises four studies; studies I-III are based on questionnaire data from 50 RNs and 96 NAs and study IV is based on interview data from 6 RNs and 6 NAs selected from the participants in the questionnaire study. Questionnaire data was analysed with multivariate statistics (I-III). Narrative interviews were interpreted with a phenomenological hermeneutic method (IV). Study I showed two relationships explaining a noteworthy amount of the shared variance by themselves (25.6% and 17.8%). One relationship was shown between having to deaden one’s conscience in order to keep working in healthcare and stress of conscience related to external demands which was interpreted as having to deaden one’s conscience in order to be able to collaborate with co-workers. The other relationship was shown between having to deaden one’s conscience in order to keep working in healthcare and stress of conscience related to internal demands which was interpreted as having to deaden one’s conscience in order to be able to feel like a good healthcare professional. Study II showed a relationship between stress of conscience and burnout (43.6% explained variance) indicating that experiences of shortcomings and of being exposed to contradictory demands are strongly related to burnout. The relationship between perceptions of conscience and burnout (33.9% explained variance) indicated that having to deaden one’s conscience in order to keep working in healthcare is strongly related to burnout. Study III showed that both RNs and NAs perceived conscience mainly as an asset and a guide and not as a burden in their work. Lack of time and high demands of work influencing home life were the situations related to the highest stress of conscience for both RNs and NAs. The predictive pattern for RNs was interpreted as RNs showing sensitivity to expectations and demands and NAs using their conscience as a guide in their work. Study IV showed that meanings of the RNs’ lived experience of troubled conscience in their work are of being trapped in feelings of powerlessness and a sense of being inadequate. They feel they are failing to live up to expectations from residents and their families, colleagues and themselves because of feelings of powerlessness, cowardice and incompetence. Meanings of NAs’ lived experience of troubled conscience in their work are a sense of being hindered in providing the level of care they would like to provide because of pre-determined conditions and by feelings of being inadequate. They are betraying the residents and themselves by accepting perceived inadequate working conditions and through their own perceived sense of cowardice and negligence. The conclusion of these studies is that stress of conscience is related to burnout among RNs and NAs in municipal residential care for the elderly. Experiences of inadequacy, powerlessness and feelings of being hindered are shown in situations where they have troubled conscience. When the norms of others and/or the pre-determined conditions do not correspond to their own values and norms it may result in the feeling that they cannot perceive themselves as good healthcare professionals.
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| 7. |
- Kihlgren, Mona, 1938-
(författare)
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Integrity promoting care of demented patients
- 1992
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The purpose of the thesis was to investigate if integrity promoting care improves functions in demented patients over time. The Erikson (1982) theory of ”eight stages of man” was used as a basis for training of staff in a three-month intervention study (I-VI) at a nursing home ward. A collective living unit where staff had had support in the performance of the delivery of care was also evaluated and compared with a nursing home in a long-term study (VII). Patients, relatives, staff, and the environments were investigated. Cerebrospinal fluid concentrations of somatostatin increased, and reduction of distractability, anxiety and confusion was seen in the intervention group (I) in contrast to controls. In the collective living group (VII) EEG activities indicated a reduction of supposed dementia induced changes. Better motor and social ability, some improved intellectual ability, more alertness and reduced signs of depression were seen (I, II, VII). Patients expressed more autonomy (IV, VII) and initiatives (II-VII) and showed a lot of competence (V) in conversations. Five patients (V) showed patterns of behaviour which seemed to reflect life-long characteristics in spite of their severe dementia. The improvement in the patients' functions can be attributed to the physical environment and the integrity promoting care, since the medical treatment of the patients remained unchanged. In the thesis medical, psychological, and nursing sciences were connected in a complementary process. The results were congruent, and indicate that patients in the care of staff who had had training and support, declined less than controls.
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| 8. |
- Nygren, Björn, 1949-
(författare)
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Inner strength among the oldest old : a good aging
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall purpose of this thesis is to describe, explore and illuminate inner strength among the oldest old. The thesis has a salutogenic perspective where strengths and health are in the foreground instead of weakness and ill health. The thesis is part of The Umeå 85+ study and comprises four studies with both quantitative and qualitative data.The aim of Study I was to test reliability and validity of the Swedish language version of the Resilience Scale (RS) in regard to its stability, internal consistency and validity. A convenience sample of 142 participants aged 19 to 85 years answered the questionnaires the first time and 126 on the retest. In Study II scales aimed to measure phenomena related to inner strength, health and development were used. The aim was to describe resilience, sense of coherence, purpose in life, and self-transcendence in relation to perceived physical and mental health in a sample of 125 participants aged 85 to 103 years. Study III aimed to give a more extensive knowledge of resilience among the oldest old. The relationship between resilience and physical health factors, psychological health factors, diseases and social relations were examined among a sample of 192 persons aged 85 to 103 years. In order to deepen the knowledge about inner strength from a life world perspective the aim of study IV was to illuminate the meaning of inner strength as narrated by women and men 85 and 90 years old. The sample consisted of those 18 participants that scored the highest on the scales aimed at measure phenomena related to inner strength.The findings in study I showed that the Swedish version of the RS was both valid and reliable. Construct validity was established by satisfactory correlations coefficient values between the RS and the Sense of Coherence Scale and the Rosenberg Self Esteem Scale. A principal component analysis corresponded well to the original version of the RS. Reliability was assured with both satisfactory internal consistency as well as test-retest reliability. The findings in study II showed significant correlations between the scales aimed to measure resilience, sense of coherence, purpose in life and self-transcendence which indicates that the scales reflect some kind of common core, which was interpreted as inner strength. The oldest old scored high on all scales, this indicating that strength can be preserved or perhaps even increased in old age. The finding also showed lack of significant correlations between the scales and perceived physical health but significant correlations between these scales and perceived mental health among the women but not for the men. No significant correlation was found between physical and mental health. In study III a regression analysis showed that a strong resilience among the oldest old was found to be associated with health, mainly represented by absence of depressed mood but also by not being on medication and by the absence of psychological symptoms, but also that raising children in the past gave a meaning to the present by having a family and this produced feelings of feeling safe and secure in facing the inevitable future; that is, being resilient means living in connectedness with one’s past, present, and future. In study IV a phenomenological hermeneutic approach to the interview text disclosed a meaning of inner strength as Life goes on –living it all, meaning that inner strength still makes it possible to live, handle and being open to ones life in many of its potentials. Inner strength means that one can chose to stand up and fight as well as living in reconciliation, a possibility to work hard as well as feeling relaxed, inner strength means having tasks to accomplish as well as feeling content and proud over ones life as well as life itself, it means relying in oneself as well as having faith in others and God (for some), knowing that you as a person is the same as well as accepting and adjusting to changes. It means that one can chose aloneness and still be connected, it is to be living in the present as well as in one’s past and in the future. That is, living in wholeness.The findings of the studies are discussed in relation to personal strengths and a good aging.
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