| 1. |
- Henriksson (Alvariza), Anette
(författare)
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A support group programme for family members : an intervention during ongoing palliative care
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Family members are central in providing care for patients with lifethreatening illness, but they often experience a lack of necessary preparation and knowledge, with a need for information and psychosocial support. The overall aim of this thesis was to investigate participant’s experiences as well as effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.Methods: A mixed method design was used. Study I was retrospective descriptive and used a phenomenological method to analyse 10 face-to-face interviews about experiences of participating in the programme. Study II was retrospective descriptive and used qualitative content analysis to analyse 29 telephone interviews about experiences of the programme design. Study III was correlational and used a confirmatory factor analysis to psychometrically evaluate the preparedness for caregiving scale(PCS), caregiver competence scale(CCS) and rewards of caregiving scale(RCS) in 124 family members. Study IV was prospective quasi-experimental and used interferential statistics to investigate effects of the programme, assessing preparedness, competence, rewards, anxiety, depression, hope and health in 125 family members.Results: The main experiences of participation in the programme were; a sense of safety and belonging, confirmation, insight into the gravity of the illness, and a moment of rest. The programme was experienced as covering topics of interest, structured to make participants feel invited by the caring team and using an open approach that fostered a warm atmosphere. The Swedish versions of PCS, CCS and RCS were shown to be valid and reliable. Family members who participated in the programme significantly increased in preparedness, competence and rewards in relation to caregiving. No significant changes were shown for anxiety, depression, hope and health.Clinical implications: The results should provide encouragement in the challenging work to develop and deliverer interventions, with the explicit purpose of supporting family members in palliative care.
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| 2. |
- Karlsson, Staffan, 1959-
(författare)
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Older people`s public health care and social services : Functional ability, health complaints, agreement in needs assessment and care satisfaction
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim was to describe and compare functional ability and health complaints of older people receiving municipal care in relation to housing and informal care, and factors associated with medical health care, municipal care and informal care. Further, the aim was to investigate agreement in needs assessments between personnel and older people and to investigate care satisfaction and health-related quality of life among older people receiving municipal care and services. Study I and II included 1958 persons aged 65 years and above, who were assessed for functional ability, health complaints, and level of informal and municipal care and service. Study II in addition included data from a register including medical health care. In study III (n=152), standardised needs assessments were performed by the staff. Later, the older person’s view was collected in a personal interview concerning functional ability, health complaints, public and informal care. In addition (Study IV, n=166), SF-12 was used for measuring health-related quality of life and for measuring care satisfaction. Cohabitation was a predictor of a combination of municipal and informal care at home (OR: 5.935), while assistance with Instrumental Activities of Daily Living (IADL) provided by municipal home care and services predicted municipal care only (OR: 0.344). Care in special accommodation was predicted by advanced age (OR: 1.051), dependency in IADL (OR: 19.883), Personal Activities of Daily Living (PADL) (OR: 02.695), and impaired cognitive ability (OR: 3.849) with receiving municipal care only as a reference. Living alone (OR: 0.106), dependency in IADL (OR: 11.348) and PADL (OR: 2.506), impaired cognitive ability (OR: 3.448), impaired vision or blindness (OR: 1.812) and the absence of slowly healing wounds (OR: 0.407) were predictors of special accommodation with a combination of informal and municipal care at home as a reference. 35% of those with public care at home were admitted to hospital and 76% had contact with outpatient care by physician compared to 26% and 87% respectively of those in special accommodation. Living in special accommodation was associated with more contacts with primary health care (B=0.643) and fewer contacts with specialist care (B=-0.722). Informal care was associated with more contacts with primary health care (B=0.413), specialist care (B=0.787), admissions to (B=0.265) and days in hospital (B=1.573). Agreement for dependency in IADL and PADL varied between good (κ=0.78) and moderate (κ=0.43). Poor agreement was found for dizziness (κw=0.17) and fair agreement for impaired hearing, urinary incontinence, pain, anxiety and depressed mood (κw between 0.21 and 0.37). Older persons reported more health complaints than were found in the personnel’s assessments, although significantly lower estimation was found only for incontinence and vision. Agreement for provided public care at home was poor, while for informal care it varied between very good and moderate. Low care satisfaction was associated with dependency in IADL (B=-1.338 and B=-1.630), impaired mobility (B=-12.579), blindness (B=-26.143), faeces incontinence (B=-11.898 and B=-17.529) and anxiety (B=-6.105 and B=-27.197), while high care satisfaction was associated with dependency in PADL (B=2.109) and receiving informal care with IADL from spouse (B=8.738). In special accommodation, low care satisfaction had to do with continuity, timing, the staff’s personal characteristics and with their ability to give service. At home, the older people were the least satisfied with the staff’s ability to do housework and to give medical care, with the staff’s amount of time and with their own influence over their care.
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| 3. |
- Sundström, Malin
(författare)
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Existentiell ensamhet hos sköra äldre personer : vårdpersonals och volontärers erfarenheter och behov av stöd
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of the thesis was to explore healthcare professionals’ and volunteers’ experiences of encountering older persons’ existential loneliness, the significance of the care context, and first-line managers’ view of support. Three of the studies were qualitative with a descriptive design (studies I–III) and the fourth was quantitative with a cross-sectional design (Study IV). The data collection for studies I and II was based on focus group interviews with healthcare professionals (i.e., nurse assistant, registered nurse, physician, occupational therapist, physiotherapist, social counsellor, and social worker) in home care, residential care, hospital care, palliative care, primary care, and pre-hospital care. The data collection for Study III was based on focus group interviews and individual interviews with volunteers from various organisations. Study IV was based on a questionnaire sent to first-line managers in municipal care, examining their views of support for staff and volunteers encountering existential issues among older persons. The findings of Study I indicated that, during the everyday care of older people, healthcare professionals experienced existential loneliness in various ways and situations related to ageing, illness, and end of life. The professionals’ stories about encountering older persons’ existential loneliness revealed that they often felt insecure about how to talk about existential issues. They also felt inadequate and frustrated when encountering barriers such as the older person’s bodily limitations, demands and needs (perceived as insatiable), personal privacy, or fear and difficulty in encountering existential issues. Study II was a multiple case study of the care contexts of home care, residential care, hospital care, and palliative care. The findings indicated that the care context matters regarding professionals’ views and interpretations of the origin of existential loneliness. In home care and residential care, these views and interpretations concerned life, the present, and the past. In hospital and palliative care, existential loneliness mainly concerned the older person’s forthcoming death. Professionals considered creating relationships an important part of their role in all care contexts, although the meanings, purposes, and conditions of these relationships differed (Study II). Study III showed that being a volunteer meant being a fellow human being, alleviating others’ and one’s own loneliness. Becoming a volunteer was 11 12 a way of finding meaning, and volunteering made the volunteers feel rewarded and simultaneously emotionally challenged. Encountering loneliness, including existential loneliness, required sensitivity to others’ needs for both closeness and distance. The findings of Study IV, based on a questionnaire, indicated that 88% of the first-line managers found that older persons sometimes or often expressed existential loneliness. They also reported that staff insecurity was the major obstacle to talking about existential issues with the older persons. Support was provided in the form of structured reflection, but provision of systematic supervision was reported by only 6% of first-line managers. The managers reported that most support was provided by themselves or by registered nurses. Almost half of the managers (44%) reported that, at their units, volunteers were engaged in activities such as everyday conversations and/or music/entertainment. In addition, they also reported a desire for volunteers to be more involved in both everyday and existential conversations. In conclusion, one of the most important findings of this thesis was the insecurity of the professionals, manifested in a fear of discussing existential issues. This was revealed in the interviews with the professionals and confirmed by the first-line managers. According to both professionals and volunteers, the relationship with the older person was important when encountering existential issues. The thesis demonstrates the importance of helping professionals focus on existential issues about life and death and of the potential of volunteers as an important complement in the care of older people.
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| 4. |
- Backman, Annica, 1972-
(författare)
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Leadership : person-centred care and the work situation of staff in Swedish nursing homes
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Swedish nursing home managers, who constitute the empirical focus of this thesis, hold overall operational responsibility for the nursing homes, which includes the care of residents, direct care staff and work environment. Aged care organisations are also expected to provide person-centred care. Working towards a person-centred approach poses new demands and leads to challenges for leaders, and there is currently limited knowledge of what characterises leadership that promotes a person-centred approach. In addition, an ongoing demographic shift in the aged care workforce entails further challenges, as the proportion of professional workers is decreasing. Leading a healthy work environment is therefore important for ensuring and protecting staff health. Based on this, it is important to explore nursing home managers’ leadership in relation to person-centred care and the work situation of staff.Aim: The overall aim was to explore leadership in relation to person-centred care and the work situation of staff in Swedish nursing homes.Methods: This thesis is based on data from two data collections. First, it includes cross-sectional baseline data from a national inventory of health and care in Swedish nursing homes (SWENIS) collected in 2013-2014. The SWENIS dataset consists of a sample of staff n=3605 from 169 nursing homes in 35 municipalities, and nursing home managers n=191. The second data collection consists of 11 semi-structured interviews with 12 nursing home managers in highly person-centred nursing homes that already participated in SWENIS. Data were explored via descriptive statistics, simple and multiple regression analyses, and qualitative content analysis.Results: Leadership was positively associated with person-centred care and psychosocial climate. Highly rated leadership behaviors’ among nursing homes managers was characterized by experimenting with new ideas, controlling work closely, relying on his/her subordinates, coaching and giving direct feedback, and handling conflicts constructively. Leading person-centred care can be outlined by four leadership processes: embodying person-centred being and doing; promoting a person-centred atmosphere; maximizing person-centred team potential and optimising person-centred support structures. Leadership was also positively associated with social support and negatively associated with job strain. Further, the variation in leadership was to a very small extent explained by the nursing home managers’ educational qualification, operational form of the nursing home and the number of employees in a unit.Conclusions: All findings point in the same direction: that leadership, as it is characterized and measured in this thesis, is significantly associated with person-centred care provision as well as with the work situation of staff. This suggests that nursing managers have a central leadership role in developing and supporting person-centred care practices, and also in creating a healthy work environment. The results also highlight five specific leadership behaviours that are most characteristic of highly rated leadership, thereby adding concrete descriptions of behaviours to the literature on existing leadership theories. The findings also include four central processes for leading towards person-centred care in nursing homes. Taken together, it seems important for managers to translate the person-centred philosophy into actions and to promote an atmosphere pervaded by innovation and trust, in which cultural change is enhanced by positive cultural bearers. Utilizing the overall knowledge and competencies among staff and potentiating care teams was also considered important for leading person-centred care, along with optimising supportive structures for supporting and maintaining person-centred care. If aged care organisations are to be committed to person-centred care, an important implication seems to be to organise nursing homes in a way that allows nursing home managers to be close and present in clinical practice and actively lead towards person-centred care. The findings of this thesis contribute to our understanding of leadership in relation to person-centre care and the work situation of staff. These findings can be used in leadership educations and nursing curriculum. Longitudinal studies would be valuable for following leadership, person-centred care and the work situation of staff over time.
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| 5. |
- Bielsten, Therése, 1978-
(författare)
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“Doing things together” : Towards a health promoting approach to couples’ relationships and everyday life in dementia
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Most people with dementia live in their own homes, often together with their partners, who become informal caregivers. Relationship quality and sense of couplehood can be threatened as a result of the transition from a mutually interdependent relationship to a caregiver-care-receiver relationship. This, in turn, may lead to many negative consequences for both partners. Support provided for couples is often divided into different types for the person with dementia and for the partner without dementia and lacks couple-based support that targets the relationship, resources and the couple’s everyday life together. Aim: The overall aim of this thesis is to explore couple-centred interventions in dementia and to develop and test a salutogenic, resource-oriented and couple-based intervention among couples in which one partner has dementia living at home. Methods and findings: This thesis comprises three parts: The first part Exploring involves two linked reviews, one narrative review (study I A) and one scoping review (study I B) that aim to identify and describe what previous couple-centred interventions comprised and why they were conducted. The results of the reviews revealed a knowledge gap in and a need for easily accessible support that targets couple relationships, resources and everyday life. The second part Developing (study II) refers to the development of an easily accessible resource-oriented couple-management intervention. The first step was to identify priority topics for such an intervention through a co-researcher process with couples living with dementia. This included a comprehensive literature review, interviews with couples in which one partner has dementia, and consultation meetings with expert groups of people with dementia and partners in both Sweden and the UK. The co-researcher process and the expert meetings informed four main themes with corresponding sub-themes that couples with dementia considered as important to their wellbeing in their everyday lives: (1) Home and Neighbourhood, (2) Meaningful Activities and Relationships, (3) Approach and Empowerment, and (4) Couplehood. The themes were further developed and integrated into the multimedia application DemPower, which was developed for the delivery of the intervention. The third part Testing and Evaluating describes a feasibility study (study III) in which the DemPower application was tested for feasibility and acceptability among couples in Sweden and the UK. The results of the feasibility study indicated that the DemPower intervention was feasible and acceptable among couples in which one partner has dementia living at home. The testing and evaluating part also comprise a qualitative study (study IV) that explores the experiences of engaging with DemPower together as a couple living with dementia in Sweden. The findings resulted in the three themes: (1) Growth of the relationship, (2) We are not alone, and (3) Positive approach, which the couples appreciated and associated with the resource-oriented and salutogenic approach of DemPower. The overall findings of the thesis are presented in a concluding synthesis at the end of the thesis. The concluding synthesis, focused on “Meaningfulness”, “Empowering health promotion”, “Normalization” and “Transitions and couplehood”, represents the core findings of this thesis. What this thesis adds: This thesis contributes to research, healthcare and the public by highlighting the need for a salutogenic approach toward couples living with dementia. The DemPower application, with its focus on couples’ relationships, resource-orientation and everyday life, has proven feasibility and acceptability and has meaningfully addressed a gap in the literature and in practice. As researchers, healthcare professionals and the public, we need to support couples where one partner has dementia to continue to live as normal life as possible. This can best be achieved by focusing on what couples can do, by inclusion and by valuing them as the experts within dementia research and of their life experiences.
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| 6. |
- Claesson Lingehall, Helena, 1965-
(författare)
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Delirium in older people after cardiac surgery : risk factors, dementia, patients’ experiences and assessments
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background:Delirium is common in older people undergoing cardiac surgery. Delirium is an acute or subacute neuro-psychiatric syndrome, characterized by a change in cognition, disturbances in consciousness; it fluctuates, develops over a short period of time and always has an underlying cause. It is associated with a disturbance in psychomotor activity, and is classified according to different clinical profiles such as hypoactive, hyperactive and mixed delirium. Delirium after cardiac surgery is not harmless, it increases the risk of complications such as prolonged stay in hospital, falls, reduced quality of life, reduced cognitive function and increased mortality.Aim:The overall aim of this thesis was to investigate postoperative delirium in older people undergoing cardiac surgery with Cardiopulmonary Bypass (CPB), focusing on risk factors, dementia and patients’ experiences; and to evaluate an assessment for screening delirium.Methods:This thesis compromises four studies. All participants (n=142) were scheduled for cardiac surgery with use of CPB at the Cardiothoracic Surgery Department, Heart Centre, Umeå University Hospital, Sweden, between February and October 2009. Six structured interviews were conducted preoperatively, day one and day four postoperatively, and in home visits, one, three and five years after surgery (2010, 2012 and 2014). The assessment scales used in Studies I, II and IV were: the Mini-Mental State Examination (MMSE) for cognition, the Organic Brain Syndrome Scale (OBS) for delirium, Geriatric Depression Scale 15 (GDS-15) for depression, Katz staircase with Activities of Daily Living (ADL) for participants’ functional status and the Numerical Rating Scale (NRS) for pain. During the hospital stay, nursing staff used the Swedish version of the Nursing Delirium Screening Scale (Nu-DESC) to assess delirium. Semi-structured interviews were also carried out (III) in the one-year follow up. Delirium, dementia and depression were diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV TR).Results: Out of 142 participants 54.9% (78/142) developed delirium after cardiac surgery (I). Independent risk factors, predisposing and precipitating, associated with delirium were: age, diabetes, gastritis/peptic ulcer, volume load during operation, longer time on ventilator in intensive care, increased temperature and plasma sodium concentration in the intensive care unit. Out of 114 participants thirty (26.3%) developed dementia within the five years of follow-up. It was shown that a lower preoperative MMSE score and postoperative delirium were factors independently associated with development of dementia (II). One year after cardiac surgery, participants diagnosed with postoperative delirium described in detail feelings of extreme vulnerability and frailty. Despite this, the participants were grateful for the care they had received (III). Hypoactive was the most common symptom profile for delirium. The Swedish version of Nu-DESC showed high sensitivity in detecting hyperactive delirium, but low sensitivity in detecting hypoactive delirium (IV).Conclusion:Delirium was common among older patients undergoing cardiac surgery. Both predisposing and precipitating factors contributed to postoperative delirium. Preventive strategies should be considered in future randomized studies. It might also be suggested that cognitive function should be screened for preoperatively and patients who develop delirium should be followed up to enable early detection of symptoms of dementia. Whether prevention of postoperative delirium can reduce the risk of future dementia remains to be studied. To minimise unnecessary suffering, patients and next of kin should be informed about and prepared for the risk of delirium developing during hospitalization. The Swedish version of Nu-DESC should be combined with cognitive testing to improve detection of hypoactive delirium, but further research is needed. Healthcare professionals need knowledge concerning postoperative delirium in order to prevent, detect and treat delirium so as to avoid and relieve the suffering it might cause.
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| 7. |
- Dalteg, Tomas
(författare)
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Partner relationship in couples living with atrial fibrillation
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis was to describe and explore how the partner relationship of patient–partner dyads isaffected following cardiac disease and, in particular, atrial fibrillation (AF) in one of the spouses.The thesis is based on four individual studies with different designs: descriptive (I), explorative (II, IV), and cross-sectional (III). Applied methods comprised a systematic review (I) and qualitative (II, IV) and quantitative methods (III). Participants in the studies were couples in which one of the spouses was afflicted with AF. Coherent with a systemic perspective, the research focused on the dyad as the unit of analysis. To identify and describe the current research position and knowledge base, the data for the systematic review were analyzed using an integrative approach. To explore couples’ main concern, interview data (n=12 couples) in study II were analyzed using classical grounded theory. Associations between patients and partners (n=91 couples) where analyzed through the Actor–Partner Interdependence Model using structural equation modelling (III). To explore couples’ illness beliefs, interview data (n=9 couples) in study IV were analyzed using Gadamerian hermeneutics.Study I revealed five themes of how the partner relationship is affected following cardiac disease: overprotection, communication deficiency, sexual concerns, changes in domestic roles, and adjustment to illness. Study II showed that couples living with AF experienced uncertainty as the common main concern, rooted in causation of AF and apprehension about AF episodes. The theory of Managing Uncertainty revealed the strategies of explicit sharing (mutual collaboration and finding resemblance) and implicit sharing (keeping distance and tacit understanding). Patients and spouses showed significant differences in terms of self-reported physical and mental health where patients rated themselves lower than spouses did (III). Several actor effects were identified, suggesting that emotional distress affects and is associated with perceived health. Patient partner effects and spouse partner effects were observed for vitality, indicating that higher levels of symptoms of depression in patients and spouses were associated with lower vitality in their partners. In study IV, couples’ core and secondary illness beliefs were revealed. From the core illness belief that “the heart is a representation of life,” two secondary illness beliefs were derived: AF is a threat to life, and AF can and must be explained. From the core illness belief that “change is an integral part of life,” two secondary illness beliefs were derived: AF is a disruption in our lives, and AF will not interfere with our lives. Finally, from the core illness belief that “adaptation is fundamental in life,” two secondary illness beliefs were derived: AF entails adjustment in daily life, and AF entails confidence in and adherence to professional care.In conclusion, the thesis result suggests that illness, in terms of cardiac disease and AF, affected and influenced the couple on aspects such as making sense of AF, responding to AF, and mutually incorporating and dealing with AF in their daily lives. In the light of this, the thesis results suggest that clinicians working with persons with AF and their partners should employ a systemic view with consideration of couple’s reciprocity and interdependence, but also have knowledge regarding AF, in terms of pathophysiology, the nature of AF (i.e., cause, consequences, and trajectory), and treatments. A possible approach to achieve this is a clinical utilization of an FSN based framework, such as the FamHC. Even if a formalized FSN framework is not utilized, partners should not be neglected but, rather, be considered a resource and be a part of clinical caring activities. This could be met by inviting partners to take part in rounds, treatment decisions, discharge calls or follow-up visits or other clinical caring activities. Likewise, interventional studies should include the couple as a unit of analysis as well as the target of interventions.
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| 8. |
- 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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| 9. |
- Andersson, Sofia, 1972-
(författare)
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Vård i livets slutskede på särskilt boende för äldre personer : närstående och vårdpersonals skattade och berättade erfarenheter
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund I Europa, blir det allt vanligare att äldre personer dör på särskilt boende i stället för på sjukhus. Särskilda boenden spelar därför en viktig roll när det gäller vård i livets slutskede. Målet med palliativ vård för personer med livshotande sjukdom och deras närstående är att öka livskvaliteten och lindra lidande. Strukturerade vårdplaner såsom Liverpool Care Pathway for care of the dying (LCP) kan vara ett sätt att öka vårdkvaliteten. Det saknas dock forskning om vård i livets slutskede på särskilda boenden när en strukturerad vårdplan har använts.Syfte Det övergripande syftet med avhandlingen var att beskriva vård i livets slutskede på särskilt boende för äldre personer utifrån närstående och vårdpersonals skattade och berättade erfarenheter.Metod Avhandlingen baseras på två kvantitativa (I, II) och två kvalitativa (III, IV) studier. Studie I baseras på frågeformuläret Views of Informal Carers – Evaluation of Services (VOICES) som har besvarats av närstående (n = 189) efter att en anhörig har dött. Data har därefter analyserats med beskrivande och jämförande statistik. Studie II baseras på data om alla förväntade dödsfall (n = 22 855) som registrerats i Svenska palliativregistret (SPR). Dödsfallsenkäten har besvarats av vårdpersonal och svaren har sedan analyserats med beskrivande statistik och univariat och multipel logistisk regressionsanalys. Studie III baseras på fokusgruppsintervjuer och enskilda intervjuer med vårdpersonal. Studie IV baseras på enskilda intervjuer med närstående. Data från studie III och IV har analyserats med hjälp av kvalitativ innehållsanalys.Resultat Resultatet i studie I visar att majoriteten av de närstående skattade att den äldre personen fick tillräcklig hjälp såväl med personlig vård (78,5 %) som med sjukvård (93,0 %) de sista tre dagarna i livet. De närstående (86,2 %) rapporterade att de var informerade om att det var sannolikt att den äldre personen skulle avlida och majoriteten (94,1 %) av de äldre hade avlidit på önskad plats. Resultatet visade dock på hög förekomst av smärta (46,5 %) och andnöd (55,9 %). Det var ingen skillnad mellan åldersgrupperna när det gällde smärta men de äldre < 85 år hade signifikant högre förekomst av andnöd (70,6 %) jämfört med de äldre äldre, ≥ 85 år, (47,5 %). De äldre, < 85 år, hade signifikant oftare symtomlindring för andnöd (53,1 %) jämfört med äldre äldre, ≥ 85 år, (31,8 %).Resultatet i studie II visar hög förekomst av smärta (68,8 %) och ångest (44,0 %). Faktorer associerade med symtomlindring av smärta, illamående, ångest och andnöd var dels att validerat smärtskattningsinstrument hade använts, dels att munhälsan var bedömd. Starkast samband var det mellan symtomlindring av tre symtom (smärta, andnöd och ångest) och att injektioner var förskrivna vid behov.Resultatet i studie III visar att vårdpersonalen upplevde sig tryggare efter implementeringen av LCP genom att de hade fått ett gemensamt förhållningssätt, kände stöd att skräddarsy vården utifrån den döende personens individuella behov, kände stöd att involvera närstående i beslut och i vården samt hade blivit mer medvetna om vårdmiljön.Resultatet i studie IV visar att närstående upplevde sig tryggare i en välbekant och varm atmosfär, att vara kontra inte vara involverad i vård i livets slutskede och att bli tröstade genom att bevittna vårdpersonalens strävan att lindra lidande.Konklusion Resultatet från studierna i den här avhandlingen pekar på hög vårdkvalitet i livets slutskede på särskilt boende genom god omvårdnad, men resultatet pekar också mot förekomst av inadekvat symtomlindring och hög förekomst av smärta, andnöd och ångest de sista dagarna i livet. Det framkom ett tydligt samband mellan ordinerade injektioner vid behov och symtomlindring av smärta, illamående och ångest. Resultatet indikerar även vikten av att använda smärtskattningsinstrument och göra munhälsobedömningar för symtomlindring vid vård i livets slutskede. Således kan ett sätt att öka vårdkvaliteten för döende personer vara att det finns ordinerade injektionsläkemedel vid behov mot vanliga symtom, att använda validerade smärtskattningsinstrument och att göra munhälsobedömningar. Det framkom också att användandet av en standardiserad vårdplan såsom LCP kan vara ett sätt att förbättra vården för de äldre personerna i livets slutskede. Såväl vårdpersonalen som de närstående upplevde stöd av den struktur för bedömningar och vårdaktiviteter som LCP ger. Vårdpersonalen upplevde också stöd i att involvera närstående i vården och i vårdrelaterade beslut.
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| 10. |
- Eckerblad, Jeanette, 1966-
(författare)
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Symptom burden among people with chronic disease
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Chronic diseases tend to increase with old age. Older people with chronic disease are commonly suffering from conditions which produce a multiplicity of symptoms and a decreased health-related quality of life. Nurses have a responsibility to prevent, ease or delay a negative outcome through symptom management, or assist in achieving an acceptable level of symptom relief.Aim: The overall aim of the thesis was to describe different aspects of symptom burden from the perspective of community-dwelling people with chronic disease.Methods: This thesis is based upon four papers that used both quantitative and qualitative data to describe different aspects of symptom burden, experienced by people with chronic diseases. Paper (I) is a cross-sectional study with 91 participants diagnosed with chronic obstructive pulmonary disease. Papers (II and IV) are based upon secondary outcome data from a randomized controlled trial with 382 community-dwelling older people with multimorbidity. Paper (II) is a cross-sectional study and Paper (IV) has a descriptive and an explorative design reporting on the trajectory of symptom prevalence and symptom burden. Paper (III) is a qualitative study with participants from the AGe-FIT.Results: Among people diagnosed with COPD the most prevalent symptoms with the highest symptom burden scores were shortness of breath, dry mouth, cough, sleep problems, and lack of energy, with just a few differences between participants with moderate and severe airflow limitation (I). For older people with multimorbidity, pain was the symptom with the highest prevalence and burden. Other highly prevalent symptoms were lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score (II). The symptoms experienced by the older people were persistent and the symptom burden remained high over time (IV). The experience of living with a high symptom burden was described as an endless struggle. The analysis revealed an overall theme, “To adjust and endure” and three sub-themes, “to feel inadequate and limited”, “to feel dependent”, and “to feel dejected” (III).Conclusions: The results of this thesis indicate the importance of early symptom identification. People with chronic diseases have an unmet need for optimized treatment that focuses on the total symptom burden, and not only disease specific symptoms. A large proportion of older people with multimorbidity suffer a high and persistent symptom burden, and the prevalence and trajectory of pain are high. Older people sometimes think their high age is the reason they experience a diversity of symptoms, and they do not always communicate these to their health-care provider.
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| 11. |
- Edberg, Karin, 1984-
(författare)
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Energilandskap i förändring : Inramningar av kontroversiella lokaliseringar på norra Gotland
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Energisystemet omstruktureras. Nya energikällor tillkommer och andra fasas ut samtidigt som efterfrågan på energi kvarstår ur ett globalt perspektiv. Lokaliseringen av de fysiska strukturer som genererar och distribuerar energi innebär en högst praktisk påverkan i den fysiska omgivningen liksom i det sociala landskapet innan, under och efter en etablering, vilket gör det relevant att undersöka hur nya lokaliseringar av energiinfrastruktur tas emot. Det övergripande syftet med den här avhandlingen i sociologi är därför att bidra till en ökad förståelse av lokal hantering av globala energidilemman.I avhandlingen analyseras lokaliseringar av kontroversiella energiprojekt, eller mer specifikt hur två sådana fall förstås och tolkas av berörda aktörer. Det görs genom ett teoretiskt ramverk baserat på inramningsteori (frame analysis) och sociala praktiker. Studien erbjuder en sociologiskt grundad förståelse av plats och förståelsens betydelse för inställningen till lokaliseringar av energiinfrastruktur.Avhandlingens empiriska fall utgörs av lokaliseringen av logistiskt arbete kring byggandet av en storskalig naturgasledning och av en planerad men inte realiserad etablering av en vindkraftspark till nordöstra Gotland. Dessa studeras genom intervjuer, observationer och textanalyser.Studien visar hur olika aktörer kombinerar och väger olika aspekter mot varandra i sina inramningskonstruktioner. Resultaten visar att även komponenter bortom det lokala ingår i inramningarna och att de inkluderar relationer mellan olika aktörer liksom förändring över tid. Denna förståelse presenteras genom en analys av fyra centrala aspekter – platsrelaterade, platsöverskridande, position och process – vilka tillsammans fångar den multidimensionalitet och komplexitet som kännetecknar kontroversiella lokaliseringar. Ett resultat är att den mest framgångsrika inramningsstrategin visade sig vara att särkoppla olika aspekter, det vill säga att uppmärksamma flera olika aspekter men på olika sätt hålla dem isär. En av studiens styrkor är att den inkluderar såväl strategiska inramningar som görs av olika aktörer i syfte att exempelvis få en lokalisering till stånd eller förhindra densamma, som inramningar som görs av dem som inte tar aktiv del i den formella lokaliseringsprocessen. Det ger en komplex bild som sträcker sig bortom policynivån och som visar att det inte finns en enstämmig förståelse i ”lokalsamhället”. Avhandlingen bidrar därmed till att bredda förståelsen av inramningar av kontroversiella lokaliseringar.
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| 12. |
- Ericsson, Iréne
(författare)
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Välbefinnande och demens : Aspekter på välbefinnande hos äldre personer med måttlig till svår demens
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Personer som lever med demenssjukdom såväl som mentalt friska människor behöver uppleva välbefinnande. Ett viktigt mål i vården och omsorgen av personer med demens är därför att hitta vägar för att försöka främja välbefinnande hos personen. Avhandlingens övergripande syfte varatt utveckla kunskap om aspekter av betydelse för att äldre personer med måttlig till svår demens ska uppleva välbefinnande. Avhandlingen baseras på empiriskt material från fyra delstudier. Den första delstudien, I(etnografi) genererade fältanteckningar från 31 observationstillfällen samt nio kvalitativa intervjuer med vårdgivare, så kallade kontaktmän till personen med demens. Delstudie II(testutveckling/tvärsnittsstudie) utgjordes av 336 testprotokoll som bearbetades statistiskt. Materialet i delstudie III (reformulerad grundad teori) innefattade 18 kvalitativa intervjuer med personer med demens samt 18 observationsprotokoll från observation av icke-verbalt språk. Den sista delstudien (IV) (konstruktivistisk grundad teori) bestod av fältanteckningar från 24 videoinspelningar av Egentids-situationer och 24 kvalitativa intervjuer med personer med demens samt åtta kvalitativa intervjuer med vårdgivare. Resultatet från avhandlingens studier visar att de kognitivt friska personerna som finns i personens närhet har en avgörande betydelse för upplevelsen av välbefinnande hos personer med måttlig till svår demens. För att interaktion ska vara önskvärd och ge välbefinnande måste den mentalt friska parten ha kunskap och insikt om att det finns en större medvetenhet hos personen med måttlig till svår demens än vad det omedelbara intrycket av förmågor ger. Om denna insikt saknas finns risk att interaktionen kan leda till kränkning i stället för välbefinnande. Det är förmodligen av betydelse att ha kunskap om och försöka fånga personens kvarvarande förmågor istället för att fokusera på brister. Kunskap om kvarvarande förmågor och till exempel överinlärda förmågor som fångas i anpassade test kan bidra till en mer positiv syn på personen och innebära att kvarvarande förmågor bättre tas tillvara, vilket kan bidra till välbefinnande. Personen med måttlig till svår demens kan kommunicera ett välbefinnande men det kräver lyssnarens förmåga och förmåga att tolka. Det kan också kräva en del praktiska ansträngningar med hänsyn till personens kognitiva nedsättningar som till exempel hjälpmedel i form av bilder och ting. Förmodligen ger interaktion som leder till en relation alltid en upplevelse av välbefinnande. Tid är en avgörande faktor för att upprätta relationer som ger välbefinnande hos personer med måttlig till svår demens. Det är därför viktigt att i vården avsätta tillräcklig tid, som vid till exempel Egentid, för att upprätta relationer och därigenom främja välbefinnande.
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| 13. |
- Hedberg, Pia, 1972-
(författare)
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Purpose in life among very old people
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis is to explore purpose in life among very old people. The proportion of elderly is increasing in Sweden, especially among the group of very old aged over 85 years. Ageing has been associated from some perspectives with health, wisdom, maturity, and inner strength. Ageing can also, however, lead to reduced physical function, cognitive impairments, and loss of purpose in life. A loss of purpose in life can lead to mental health problems such as depression. This thesis is part of the Umeå 85 + study/GERDA begun in 2000. Half of all 85-year-olds, all 90-year-olds, and all those 95 years of age or older living in the municipality of Umeå were invited to the larger study, which was expanded in 2002 to include five rural municipalities in Västerbotten County with the same inclusion criteria. The Umeå 85 + study/GERDA is a collaborative project between several departments at Umeå University.Selection criteria for participants in the thesis were the ability to answer Likert-type questionnaires and the ability to participate in interviews. A follow-up study was conducted in Umeå in 2005 and in Västerbotten County in 2007. Paper I is a cross-sectional study with 189 participants (120 women and 69 men) who had responded to several questionnaires including the Purpose in Life test (PIL). In the results women scored significantly lower on the PIL test than men; attitudes towards one’s own aging were associated with purpose in life for both men and women; and musculoskeletal disorders were associated with lower purpose in life in women. Paper II includes the 189 participants from study I. In results at baseline the 40 who were diagnosed with depression had significantly lower purpose in life, and women were diagnosed with depression more often than men (32/120 women and 8/69 men). The 40 participants with a diagnosis of depression were excluded five years later, when 78 of 149 participants were available for the follow-up, 21 of whom (26.9%) had developed depression. There was no difference in the mean scores on the PIL test between those who had developed depression and those who had not. Purpose in life does not seem to protect very old people from developing depression.Paper III includes 51 people who responded to the PIL test on two occasions five years apart, and its results show that purpose in life decreased after five years. There was no difference in mean PIL scores at baseline between those with a diagnosis of depression and those without depression, but purpose in life declined significantly over the five years in those with diagnosed depression. In study IV, to gain a deeper understanding of purpose in life, content analysis was conducted on interviews from 30 women. To obtain 5 variety and breadth in the stories we selected 10 women with low estimated purpose in life, 10 women with undecided estimated purpose, and 10 women with high estimated purpose in life. The results show that despite the fact that women estimated their purpose in life lower than men, their stories were positive. The women experienced purpose in their daily life where social relations was important and on a spiritual level. However, there were also expressions of experiencing life as simply existing. In Study V we included 23 men who had responded to a question about purpose in life. Their answers were subjected to content analysis and the results show that for men work is an important part of purpose in life. All men except one had a positive outlook on life, and the men found purpose in life most strongly in memories of when they were younger.Lack of purpose in life can result in mental disorders like depression. Stereotypes of older people can affect their views of their own ageing, which in turn can weaken their purpose in life. To prevent mental illness it is important to experience purpose in life throughout life. Society at large and the health care system must consider purpose in life integral to mental health and work to combat ageist stereotypes to support purpose in life through the entire lifespan.
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| 14. |
- Nilsson, Anita, 1960-
(författare)
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Att vårda äldre personer med kognitiv svikt i sjukhusmiljöer : attityder, processer, innebörder
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Inledning: Äldre personer med kognitiv svikt, exempelvis i form av demenssjukdom, delirium eller depression, är en vanligt förekommande population inom svensk sjukhusvård. Dessa äldre kan ha särskilda behov till följd av en försämrad kognition, men litteraturen tyder på att akutsjukhusens miljö, organisation och vårdprocesser inte alltid stödjer tillgodoseendet av dessa behov.Syfte: Det övergripande syftet med avhandlingen var att belysa vården av äldre personer med kognitiv svikt i sjukhusmiljöer.Metoder: Avhandlingen består av fyra delstudie. I studie I tillämpades en tvärsnittsdesign för att utforska personalens attityder till äldre patienter med kognitiv svikt, personalens tillfredsställelse med vården och arbetet samt upplevelsen av personcentrerat vårdklimat (n=391). I studie II användes en Grounded theory design för att undersöka hinder för personcentrerad vård för äldre personer med kognitiv svikt på en akutmedicinsk vårdavdelning. I studie III tillämpades en tvärsnittsdesign för att utforska de psykometriska egenskaperna i den svenska versionen av ”The Person-centred care of Older People with cognitive impairment in Acute Care scale” (POPAC) i ett urval av sjukhuspersonal (n=293). I studie IV användes en fenomenologisk hermeneutisk design för att belysa innebörder av att vårda äldre patienter med kognitiv svikt på akuta sjukvårdavdelningar utifrån vårdpersonals (n=13) berättelser.Resultat: Studie I visade att deltagande personal skattade en neutral attityd till äldre patienter med kognitiv svikt i spektret mellan negativa och positiva attityder, samt att faktorer som att vara yngre, undersköterska och att uppleva vården av de äldre som betungande, hade samband med mer negativa attityder. Resultaten visade också att vårdpersonal upplevde att äldre patienters kognition sällan utvärderades under vårdtiden, samt att man sällan baserade vården på evidensbaserade riktlinjer för vård av äldre med kognitiv svikt. Studie II belyste att ett organisatoriskt fokus på medicinska behov, åtgärder och rutiner bidrog till att personal hamnade steget efter i relation till att synliggöra och möta dessa äldre personers multidimensionella behov, och att detta kunde medföra tecken på vårdlidande för de äldre, utanförskap för närstående och frustration för personal. Studie III stödde en fortsatt användning av POPAC-skalan för skattningar av upplevd förekomst av personcentrerade vårdprocesser för äldre patienter med kognitiv svikt, men att ytterligare studier rekommenderades framförallt av skalans olika dimensioner. Studie IV belyste att ju större avstånd som upplevs mellan vad vårdpersonalen kan göra (verklig vård) och vad de vill göra (ideal vård) för äldre patienter med kognitiv svikt i akuta vårdmiljöer, desto meningslösare upplevs vården, och desto större blir hotet mot personalens personlig-professionella integritet. Den tolkade helheten visar på att vårda äldre patienter med kognitiv svikt inom akutsjukvård betyder att försöka ge omvårdnad i miljöer som inte stödjer vårdpersonalens personlig-professionella integritetSlutsatser: En rimlig konklusion av dessa resultat är att det i sjukhusmiljöer där äldre patienter ofta vårdas kan finnas anledning att diskutera och ytterligare studera hur attityder, synsätt på och målsättningar för vården och dess innehåll, åtgärder och interventioner kan främja eller motverka en god omvårdnad för de äldre med kognitiv svikt. Det kan också finnas anledning att se över hur personalen kan stödjas i att ge person-centrerad vård till de äldre, exempelvis genom riktlinjer för vård av äldre personer med kognitiv svikt, standardiserade skattningar av kognition, samt implementering av vårdprocesser som stödjer en personcentrerad vård för dessa patienter. Det kan också finnas behov av att ytterligare kritiskt granska hur organisatoriska och miljömässiga faktorer på avdelningar stödjer eller motverkar en personcentrerad vård för äldre patienter med kognitiv svikt. Därtill kan det finnas behov av att skapa ytterligare förutsättningar för vårdpersonalen att bevara och utveckla sin personlig-professionella integritet genom att utveckla miljöer som ger möjligheter för dem att ge en god omvårdnad till dessa äldre.
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| 15. |
- Olofsson, Birgitta, 1963-
(författare)
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Old people with femoral neck fracture : delirium, malnutrition and surgical methods - an intervention program
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Hip fracture is a global and a growing public health problem. More women than men sustain hip fractures, the incidence increases exponentially with age and mean age is above 80. About one third of hip-fracture patients suffer from dementia and are prone to develop acute confusional state (delirium). Delirium is one of the most common complications after hip-fracture surgery, and seriously impacts on morbidity and mortality. Malnutrition is also common in hip-fracture patients and is associated with postoperative complications, such as delayed healing of the wound, infections and decubitus ulcers. Arthroplasty is usually preferred procedure in displaced femoral neck fractures but is, however, controversial in patients with dementia due to the fear of dislocation of the prosthesis. The aims of this thesis are to identify risk factors for delirium and the impact of delirium on rehabilitation outcome, to evaluate whether a postoperative multi-factorial intervention program could reduce delirium, to investigate the effect of a nutritional intervention and to evaluate complications, functional outcome and mortality regarding two surgical methods, hemiarthroplasty (HAP) and internal fixation (IF), in old patients with femoral neck fracture. Thirty-eight out of 61 consecutive patients (62%) were delirious on admission to hospital or developed postoperative delirium. An increased risk of postoperative delirium was found among hip-fracture patients with dementia and/or depression. Delirious patients were hospitalized longer, were more dependent in their activities of daily living, had poorer psychological well-being and suffered more complications than non-delirious patients. A postoperative multi-factorial and multidisciplinary intervention program reduced the incidence, at 55% vs 75% (p=0.003), and number of days with delirium, 5 vs 10 days (p=0.009). Postoperative complications were also reduced; decubitus ulcers 9% vs 22% (p= 0.010), urinary tract infections 31% vs 51% (p=0.005), falls 12% vs 27% (p=0.007), and the mean hospitalization period was 10 days shorter in the intervention group (p=0.030). Malnutrition was common among all these patients (53 %) and associated with postoperative complications such as decubitus ulcers and delirium. However, the nutritional intervention had no effect on nutritional parameters at four months, nevertheless men had better nutritional outcomes than women. A higher proportion of patients with dementia operated on using HAP had regained their pre-fracture ability to walk independently at the one-year follow up compared with those operated on using IF. Six of 83 patients dislocated their HAP during hospitalization and during an episode of delirium, none had dementia. No difference in mortality between the surgical methods was seen. Dementia per se should not be a reason to disqualify patients from being treated with the most appropriate surgical method. It is clinically important to discriminate between dementia and delirium, since delirium can be prevented and treated even in patients with dementia. Old patients undergoing surgery have special needs that are not always catered for in ordinary orthopaedic or surgical wards. The special care for these patients should include: a combined nursing and medical care based on comprehensive geriatric assessments, systematic prevention, detection and treatment of postoperative complications such as delirium, hypoxemia, urinary tract infections, pain, malnutrition and an active rehabilitation. It is obvious that improved quality of care reduces patient suffering and seemingly the costs for society.
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| 16. |
- Åhlin, Johan, 1975-
(författare)
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Stress of conscience and burnout among healthcare personnel working in residential care of older people
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background This thesis was part of the research programme ‘Stress of Conscience and Burnout among Healthcare Personnel in Elderly Care’ at Umeå University. Relationships have been found between stress of conscience, perception of conscience, burnout, and social support. No longitudinal studies investigating these relationships have been performed previously, thus it was not known how these relationships develop over time. Neither was it known how stress of conscience and other phenomena of importance might vary between organisations because no comparative studies have been performed. It seems important to organize the care of older people in such a way that healthcare personnel can stay healthy at their workplace, especially because the aging population is expected to grow. Studies have shown that stress of conscience is associated with the well being of healthcare personnel and the quality of care they provide. In order to develop measures against stress of conscience, it seems important to gain a deeper understanding of the aspects in daily work that can generate troubled conscience among healthcare personnel. Aim The overall aim of this thesis was to describe, compare, and investigate longitudinal relationships between stress of conscience, perceptions of conscience, burnout, social support and person-centred care among healthcare personnel working in two different organisations for residential care of older people. Furthermore, the aim was to deepen the understanding of some aspects of importance that generate troubled conscience at each of the two organisations. Based on the emerging knowledge from the research programme and the results from studies І and ІІ, important aspects that can generate troubled conscience among healthcare personnel were shown to be working with guidelines and working during times of downsizing and reorganisation.Methods Studies Ι and ΙΙ took quantitative approaches with a longitudinal design (Ι) and a cross-sectional design (ΙΙ), while studies ΙΙΙ and IV were based on a qualitative approach. In study Ι, the participants were healthcare personnel working in an organisation for residential care of older people with a public mode of operation located in a small town in northern Sweden (baseline n = 488, follow-up n = 277). In study ΙΙ, the participants were healthcare personnel working in two different organisations chosen to be as different from each other as possible regarding their characteristics. In this study, an organisation with a private mode of operation and located in a large city in the south of Sweden (n = 98) was compared to the baseline data from the publically run organisation from the small town in study Ι (n = 488). In studies ΙΙΙ (n = 8) and IV (n = 7), the participants were care providers working at the same public organisation (ΙΙΙ) and private organisation (IV) as in studies Ι and ΙΙ. Quantitative data were analysed using partial least square regression with jack-knife approximate t-tests, hierarchical cluster analysis with multiscale bootstrap resampling, descriptive statistics, hypotheses tests, effect size measures, and confidence intervals. Qualitative data were analysed using qualitative content analysis.Results The main results showed that the healthcare personnel reported higher levels of stress of conscience than have been reported in other studies. Perceiving one’s conscience as a burden, having high levels of emotional exhaustion and depersonalisation, and noticing disturbing conflicts between co-workers were positively associated with stress of conscience. Associations between stress of conscience and perceiving one’s conscience as a burden and burnout were similar among healthcare personnel despite the differences in the characteristics of the organisations they worked in. Women reported higher levels of stress of conscience and less social support from their co-workers compared to men. This thesis also provides new insights about how working according to guidelines and during times of downsizing and reorganisation can be burdensome issues for care providers and can generate troubled conscience. An overall understanding of care providers experiences of guidelines in daily work was revealed as struggling to do their best; prioritising between arcane guidelines while keeping the residents’ needs in the foreground. They described experiences that guidelines were coming from above, were controlling and not sufficiently anchored at their workplace. They also described guidelines as stealing time from residents, colliding with each other, lacking practical use and complicating care, and challenging their judgment. An overall understanding of care providers’ experiences of working during times of downsizing and reorganisation was revealed as perceiving oneself as pinioned in between current circumstances to provide care and what one’s conscience conveyed. They perceived loss of good management, changed working conditions as exhausting and activating their conscience. They also expressed how they perceived troubled conscience when working conditions decreased the quality of care.Conclusion The results is reflected on in relation to a nursing care model as it seems important to understand the results from a society- and organizational perspective as well as from an individual perspective. The results of the thesis show that it is important to provide healthcare personnel with opportunities to follow and express what their conscience tells them at their workplace in order to buffer the effects of stress of conscience. Support, knowledge, involvement, time, and additional resources are key issues that can help care providers to work more constructively with guidelines in their daily practice. The results show that in times of downsizing and reorganisation it is important to exercise leadership that promotes care providers’ feelings of involvement, security, and togetherness in order to relieve some of the healthcare personnel’s burdensome experiences. An overall understanding of the results is that it seems important to organize the residential care of older people in such a way that registered nurses and leaders are able to be present in healthcare personnel’s daily practice. Healthcare personnel need attendant and supportive leaders who can help them to solve various forms of work-related problems and to help them make priorities in the daily care of residents. This seems important regardless of whether the priorities are between guidelines and residents’ needs or a consequence of an increasingly stressful work environment during times of downsizing and reorganisation. Further studies are needed in order to investigate the importance of gender in relation to stress of conscience and if different kinds of support are needed for women than for men in order to buffer the effects of stress of conscience. Finally, more longitudinal multilevel studies are needed in order to investigate how organisations’ characteristics and organisational changes affect healthcare personnel’s levels of stress of conscience.
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| 17. |
- Österlind, Jane, 1959-
(författare)
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När livsrummet krymper : vård och omsorg av äldre personer i livets slutskede
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This research focused on the life situation of older people, who had moved to a nursing home at the end of life, from the perspectives of the older people themselves, care managers and nursing staff. The thesis is based on an analysis of 446 care manager assessments and decisions, interviews with seven care managers, six older people and 28 nursing staff. The main fi ndings are: (I); that there was a statistically signifi cantly shorter waiting time for a move to a nursing home for older people who were in hospital compared to those who were living in their own home at the time of the decision. Seventy percent of the decisions made by care managers’ concerned women. The waiting period for men was fi ve days shorter compared to women. (II); that the care managers’ descriptions revealed that their assessments of the needs and wishes of the older people were infl uenced by whether or not it was clear that the older person had only a limited time left to live. The care managers’ way of reasoning has been conceptualised as two approaches, the medical and the natural path to death, where the former was characterised as fl exible and collaborative, whereas the latter was governed to a greater extent by a “wait and see attitude”. (III); that the older people’s experiences of living in a nursing home have been conceptualised into three themes: feeling like a stranger in an unfamiliar culture, being excluded from life, and living while waiting for death. The latter involved a deep insight that life would soon come to an end; a fact the staff appeared to take into account to only a minor extent. (IV); that dying and death was characterised by a discourse of silence, with tension between avoidance of and a confrontation with death. Staff members who expressed a fear of death held it at a distance by concentrating on practical tasks and avoiding close contact with older people who were dying. The thesis highlights the fact that the dying and death of older persons was characterised by a discourse of silence and several transitions. Death was not a topic that the staff members or older people generally talked about, and care in the fi nal phase of life was not actively or explicitly planned. In terms of access to a nursing home bed, only older people with an extensive need for care obtained such a place. These fi ndings imply that all older people can be said to be in need of palliative care. The older people in our study were in a liminal phase, and waiting for death. Feelings of social and existential loneliness and that their living space was shrinking were evident. It was also clear that the older people and staff members inhabit the same place but appear to be in two different sub-cultures, where the norms and values that guided the staff members’ attitudes were dominant. Keywords: transition, older people, end of life care, palliative care, nursing home, caring, care manager and staff
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| 18. |
- Boman, Erika, 1975-
(författare)
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Inner strength as a health resource among older women
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background Long life does not inevitably mean more healthy years; older women have an increased risk of disabilities, diseases and adverse life events. Nevertheless, many older women experience health. This may be explained by possessing resources that promote health, despite adversities. Inner strength is seen as a resource as such. In this thesis inner strength is interpreted according to a theoretical model where inner strength comprises four interrelated and interacting dimensions: connectedness, creativity, flexibility and firmness, and being rated by the Inner Strength Scale (ISS).Aim and methods The overall purpose of this thesis was to explore inner strength as a health resource among older women. In study I six focus group interviews were performed with older women (66-84 years; n = 29) and the interviews were analysed by a concept driven approach and by means of qualitative content analysis. Studies II–IV had a quantitative, cross-sectional design. A questionnaire was sent to all older women (65 years and older) living in Åland, an autonomous island community in the Baltic Sea, and 1555 (57%) women responded. The data was analysed using descriptive and inferential statistics.Results In study I, exploring how inner strength and its dimensions can be identified in narratives of older women, connectedness was interpreted as a striving to be in communion, creativity as the ability to make the best of the situation, firmness as having a spirit of determination – “it is all up to you”, and flexibility as a balancing act. The results of study II showed that strong inner strength was associated with better mental health, but not physical health. In exploring factors associated with health-related quality of life, fewer symptoms of depressive disorders was the strongest explanatory variable, and together with not feeling lonely associated with better both physical health and mental health. Better physical health was also explained by not having a diagnosed disease, being of lower age and the opportunity to engage in meaningful leisure activities. Better mental health was additionally explained by having enough money for personal needs. In study III the result showed that non-depressed women were likely to have a strong inner strength, as well as never or seldom feeling lonely, taking fewer prescribed drugs, feeling needed and having the opportunity to engage in meaningful leisure activities. In study IV poorer mental health was associated with weaker inner strength in total, and in all four dimensions of inner strength. Symptoms of depressive disorders and feeling lonely were related to lower scores in three of the dimensions (except firmness and creativity, respectively) and poorer physical health was associated with lower scores in two of the dimensions (firmness and flexibility). Some other health threats were significantly associated with only one of the dimensions (connectedness or creativity), and others were not significantly associated at all.Conclusion The results add nuance to the notion of inner strength and deepen empirical knowledge about the phenomenon. It is elucidated that the ISS can be used not only to rate inner strength but also to offer guidance as to the areas (i.e. dimensions) in which interventions may be profitable. It is further shown that inner strengths can be identified in narratives of older women. Mental ill health has shown to have overall the strongest association with weakened inner strength among community-dwelling older women. The causality can, though, not be studied due to the cross-sectional design; therefore, longitudinal studies are recommended. Notwithstanding that limitation, the findings can be used as a knowledge base in further research within this field.
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| 19. |
- Sjöberg, Marina
(författare)
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Existentiell ensamhet hos sköra äldre personer : äldre personers upplevelser samt dokumentation i patientjournalen
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to illuminate the meanings of existential loneliness(EL) and describe how it was eased, as narrated by frail older people, as well as toexamine existential aspects documented in patient records in specialised palliative care.Two of the constituent studies of this thesis were qualitative with an explorative anddescriptive design (i.e., studies I and II), and two studies were based on a retrospectivepatient record review, of which one was quantitative with an exploratory design (StudyIII) and the other was qualitative with a descriptive design (Study IV). The datacollection for studies I and II was based on individual interviews with frail older people75 or more years old. Studies III and IV were based on a randomly selected sample ofpatient records of frail older people who died in specialised palliative care during 2017.The data were collected using a pilot-tested review template to identify aspects of thedocumentation relating to the aims of the studies.The findings of Study I indicated that EL was a negative experience. Four themeswere identified related to meanings of EL: being trapped in a frail and deterioratingbody, being met with indifference, having nobody to share life with, and lacking purposeand meaning. The first theme was considered an overarching theme due to its closeinterrelatedness with the other three themes. The comprehensive understanding of ELamong frail older people was ‘being disconnected from life’, an experience of at leastmomentary abandonment, being left to one’s fate, and living a meaningless life. Study IIshowed that existential loneliness was eased when being acknowledged by others, beingthe focus of others’ concern, encountering intimacy, and having meaningful exchangesof thoughts and feelings. It was further eased when the participants could bracketnegative thoughts and feelings, that is, when they could adjust and accept the presentsituation, view life in the ‘rear-view mirror’, be in contact with spiritual dimensions, andwithdraw and distract themselves. Existential loneliness could be either in the forefront(i.e., feelings of ill-being) (Study I) or in the background (i.e., feelings of well-being)(Study II). The findings of Study III indicated that performed interventions were the14most common subject of documented clinical notes, mostly related to pharmacologicalinterventions. Pain was the most common documented problem, followed by circulatoryproblems, nutrition problems, and anxiety. Clinical notes concerning wishes and wellbeing-related details were documented, but not frequently. Overall symptom assessmenttools, especially multi-dimensional tools, were used to a small extent. More people whoreceived care in palliative in-patient wards died alone than did people who received carein their own homes. Study IV was based on notes extracted from 84 patient records.The results indicated that documented existential aspects had both negative and positiveconnotations and were related to the patients’ loss of freedom and self-determination,loneliness and community, anxiety and inner peace, and despair and hope. The notesconcerning existential aspects were, however, not recorded in a structured way and nocare plans relating to existential aspects were found.According to the studies, both ill-being and well-being were evident, and the livedbody occupied a central position in all studies. The frail body increased the patients’vulnerability and limited their living space. Meaningful activities and meaningfulcommunity and exchange with others eased the existential loneliness. Existentialloneliness remains invisible to others as long as nobody talks about it, and it remainsinvisible in the documentation as long as it is not documented in a structured way.This thesis demonstrates the importance of making existential loneliness and existentialaspects visible in encounters with frail older people and in the clinical documentation.
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