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- Henriksson (Alvariza), Anette
(author)
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A support group programme for family members : an intervention during ongoing palliative care
- 2012
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Doctoral thesis (other academic/artistic)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. |
- Ekwall, Eva, 1950-
(author)
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Women's experiences of gynecological cancer and interaction with the health care system through different phases of the disease
- 2009
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Doctoral thesis (other academic/artistic)abstract
- This thesis explores women’s experiences of being diagnosed with gynecological cancer, during different phases of the disease trajectory. The women were undergoing treatment for primary gynecological cancer (study I) and for recurring ovarian cancer (studies II–IV). The focus of studies I and III was the women’s interactions with the health care system, while the experience of recurring ovarian cancer was sought in studies II and IV. Interviews were made and the text was tape-recorded and transcribed. The women in studies I-III were interviewed at the end of their treatment periods. The method used in studies I and III was subjected to qualitative content analysis. The aim of study I was to illuminate what women, diagnosed with primary gynecological cancer, reported to be important in their interactions with the health care system. Fourteen women were interviewed. The results were described in three categories: optimal care, good communication, and maintained self-image and sexuality. The aim in study III was to explore what women with the first recurrence of ovarian cancer perceived as important in their interactions with the health care team. Twelve women were interviewed. The main finding was that the women needed help from the health care team to familiarize themselves with the disease. This theme was supported by the following sub-themes: being confirmed as a person, getting help in making sense of the information about the disease and its treatment, having the opportunity to be involved and to share responsibility, and feeling confident that medical expertise is good enough. A phenomenological method was used in studies II and IV. The aim of study II was to deepen the understanding of women’s experiences of the first recurrence of ovarian cancer. Twelve women were interviewed. The findings showed three key constituents: being denied one’s future while simultaneously hoping to be able to delay the cancer’s advancement; feeling alienated from both oneself and one’s surroundings; and being responsible. The key constituents was integrated into a structure: living in limbo, characteristic of an existential loneliness. In study IV, four of the women from studies II–III were interviewed twice, three and five years after the first recurrence. The aim was to illuminate the phenomenon of living with life-prolonging treatment of recurring ovarian cancer. The analysis started with creation of the situated structure for each woman. The situated structures were transformed into a general structure of living with life-prolonging treatment of recurring ovarian cancer that was formulated as follows: time was experienced as short, yet extendable; the body became increasingly fragile; strength proved itself to be unpredictable; and the wish to share the meaning of the disease with others was experienced as unattainable. The findings produced important knowledge that increases the understanding of the needs of women living with gynecological cancer. This knowledge provides a basis to shape health care delivery in accordance with the needs of the women.
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| 3. |
- Fex, Angelika, 1955-
(author)
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From novice towards self-care expert : studies of self-care among persons using advanced medical technology at home
- 2010
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Doctoral thesis (other academic/artistic)abstract
- The use of advanced medical technology at home has increased in most industrialized countries. The overall aim of this thesis was to develop knowledge of self-care and transition and issues that influence daily life and health among persons using advanced medical technology at home.Three qualitative studies were performed to describe the structure of self-care (I) and elucidate meanings of health-illness transition experiences among persons using long-term oxygen, or a ventila-tor, or performing blood or peritoneal dialysis (II), and to gain a deeper understanding of the meaning of living with an adult family member in this context (III). Ten interviews with adult patients (I-II) and ten with adult next of kin (III) in this context were performed and analysed with descriptive phenome-nological (I), phenomenological hermeneutical (II) and hermeneutical (III) methods. A quantitative, descriptive, comparative, cross-sectional design was used to describe and find factors that influence self-care agency and perceived health in a larger group of persons (180 patients) using the enumerated types of advanced medical technology at home (IV).In the results, (I) self-care among persons using long-term oxygen, a ventilator, or equipment for blood or peritoneal dialysis at home was described at a generic level, independent of the specific type of technology used. The general description of self-care in this context involved prerequisites for, activities for and consequences of self-care; (II) the health-illness transition among adult persons in this context was interpreted as contentment at being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The successful and healthy transition experience was characterized by human growth and becoming; (III) living with a family member who is using advanced medical technology at home was interpreted as meaning rhythmical patterns of being closely connected to but also separated from him or her, and of sorrow versus reconciliation. Dependence on others was reflected in a need for support from the healthcare professionals and significant others; (IV) health-related and technology-related variables in daily life were rated as satisfactory to quite a high extent, but participants using long-term oxygen perceived their health as significantly lower compared to the other technology groups. Further, a significant difference in sense of coherence was found between users of long-term oxygen and peri-toneal dialysis. Factors that contributed to self-care agency and sense of coherence were found.In conclusion, self-care in a high-tech home context means more than simply mastering the technology. With the goal of maintaining an active, social life, the health-illness transition involves a learning process of accepting and integrating the technology into daily life. With knowledge and support, patients and next of kin are able to assume substantial responsibility for self-care/dependent-care. Daily life seems to be manageable for patients using this kind of technology at home.
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| 4. |
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| 5. |
- Hedman, Ragnhild, 1962-
(author)
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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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Doctoral thesis (other academic/artistic)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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| 6. |
- James, Inger, 1953-
(author)
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Bakom rutinerna : kunskap och omvårdnadspraxis i mänskliga gränssituationer
- 2010
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis was to study how family members, next of kin, and healthcare professionals construct and use knowledge in nursing praxis in human boundarysituations.The study was carried out on a surgical ward at a university hospital in Sweden.Methodology: Study I: A case study; data concerning a family with six familymembers were collected over 10 months using interviews, conversations, and diary notations.Study II: A hermeneutic approach; interviews with 27 family carers were conductedsix to eight months after a family member’s death. Studies III, IV: a combinedethnographic and hermeneutic approach; participant observations (285 hours), informalconversations (190), and interviews (25) were conducted with 25 nurses and 18 assistant nurses.The main findings were: (I) The family members used beliefs to explain and understandcancer, dying and death. The beliefs were aggregated into eight main beliefs and fourthemes: cancer is a deadly threat/death is a liberator; death can be held at bay/death canbe lived near; dying is done alone/dying should not be done alone; and life has anend/life is endless. These beliefs appear to oscillate between seemingly contrastingpoles. (II) The family carers made their own assessment of their loved one’s conditionand situation. Their actions were characterized by struggling to get treatment, being leftbehind, being partners, keeping the illness at a distance, hovering beside their loved one,waiting for death, and being experts and protectors. The family carers used practicalwisdom, phronesis, regarding what care was the best, or least harmful, for their lovedone in the encounter with professional care. (III) The nurses constructed knowledgethrough greeting the patient, and reading the patient. By being sensitive, using humor,and emotional involvement, understanding was deepened. By being suspicious and selfcritical,interaction was sought with nurse colleagues, the patient, relatives, and the doctor,and additional knowledge was obtained. They strived to be one step ahead in theirefforts to attain an understanding of the patient´s situation. The knowledge nurses makeuse of can be related to the intertwined and embodied forms of theoretical knowledge,i.e., episteme, practical professional knowledge, i.e., techne, and practical wisdom i.e.,phronesis. (IV) The nurses created and used emotional knowing that could be interpretedin relation to various rooms of emotions, thoughts and actions. They strived to dothings correctly in the normative room; created a safe, secure milieu for patients andnext of kin in the safety-security room; and questioned their actions in the critical room.They created an affinity for co-operation that was of benefit in encounters with patientsin the nurses’ affinity room. And they demonstrated compassion for patients and next ofkin; this compassion was particularly evident in the closeness room.Conclusion: In praxis, construction and use of knowledge occurs that often takes placebehind the routines. This knowledge constitutes an important content in nursing. Thehermeneutic spiral can serve a pedagogic purpose in elucidating nursing and its differentforms of knowledge.
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| 7. |
- Jonasson, Lise-Lotte
(author)
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A comprehensive picture of ethical values in caring encounters, based on experiences of those involved : Analysis of concepts developed from empirical studies
- 2011
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Doctoral thesis (other academic/artistic)abstract
- Older people should have a life with a sense of value and should feel confident. These ethical values, which are expressed in normative ethics, are expected to prevail in empirical ethics. Central components of nursing are the ethical issues of autonomy, beneficence, non-maleficence and the principles of justice. The general aim of this thesis is to identify and describe the ethical values that are apparent in the caring encounter and their influence on the people involved. This is done from the perspective of the older person in study (I), next of kin in study (II) and nurses in study (III). In study (IV) the aim was to synthesize the concepts from empirical studies (I- III) and analyze, compare and interrelate them with normative ethics. Studies (I, III) were empirical observational studies including follow-up interviews. Twenty-two older people participated voluntarily in study (I), and in study (III) 20 nurses participated voluntarily. In study (II) fourteen next of kin were interviewed. In studies (I- III) constant comparative analysis, the core foundation of grounded theory, was used. Five concepts were used in the analysis in study (IV); three from the grounded theory studies (I- III) and two from the theoretical framework on normative ethics i.e. the ICN code and SFS law. Five categories; being addressed, receiving respect, desiring to participate, increasing self-determination and gaining self-confidence formed the basis for the core category ‚Approaching‛ in study (I). ‘Approaching’ indicates the ethical values that guide nurses in their caring encounters with older people. These ethical values are noted by the older people and are greatly appreciated by them, and also lead to improved quality of care. Four categories were identified in study (II): Receiving, showing respect, facilitating participation and showing professionalism. These categories formed the basis of the core category ‚Being amenable‛, a concept identified in the next of kin’s description of the ethical values that they and the older patients perceive in the caring encounter. In study (III), three categories were identified: showing consideration, connecting, and caring for. These categories formed the basis of the core category ‚Corroborating‛. Corroborating deals with support and interaction. Empirical ethics and normative ethics are intertwined, according to the findings of this study (IV). Normative ethics influence the nurse’s practical performance and could have a greater influence in supporting nurses as professionals. Criteria of good ethical care according to this thesis are: showing respect, invitation to participation, allowing self-determination, and providing safe and secure care. These criteria are elements of the concept of being professional. Professionalism of nurses is shown by: the approach nurses adapt to the performance of their duties, and their competence and knowledge, but also how they apply laws and professional codes
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| 8. |
- Källström Karlsson, Inga-Lill, 1947-
(author)
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Att leva nära döden : patienters och vårdpersonals erfarenheter inom hospicevård
- 2009
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Doctoral thesis (other academic/artistic)abstract
- This research focused on experiences of dying patients and hospice nurses in a hospice unit. The research objectives were to (i) acquire more extensive knowledge about how dying patients and hospice nurses experience life and death and (ii) describe patients who were cared for during a 10-year period in an inpatient hospice ward. Data were gathered via interviews with 19 nurses and 11 patients. An interpretive description method was used to analyze interview results. Data were also gathered from institutional care records that included gender, age, marital status, diagnosis, referral source, and length of stay (666 women and 555 men). Descriptive statistics were used to describe basic features of the study's data and to compare differences between women and men. The main finding from interviewing the nurses was that they were struggling to acknowledge and unveil the person within the weakening body. In doing so, they used various strategies such as (i) striving to understand patients’ experiences of body function loss; (ii) encouraging patients to uphold body functions and daily habits; (iii) acknowledging and balancing patients’ need for body control; and (iv) providing tender care for the body. After 2 years of work in hospice care, nurses described that facing the dying and death of many patients had an impact on daily work and private life. The close relationship with the dying patient led to existential issues concerning the meaning of life and death, which were conceptualized into this theme: death as an agent of change. Eleven years later, the presence of death took a less dominant place in the nurses’ lives, and the theme became: death as a companion in life. In the long-term, nurses emphasized that their relationships with dying patients fostered their professional and personal growth. The findings from interviewing the patients revealed that when death became a reality, life took on new meaning, and they acquired new values that were important to preserve or protect; this triggered need for feeling secure within this situation. These revelations were manifest in three sub-themes: (i) when possible death becomes a reality; (ii) living with death as a reality, and (iii) a need for a feeling of security. And this main theme was conceptualized: making sense of life close to death. Results regarding patients in hospice ward care over a 10-year period revealed significant differences between women and men. More women than men were single, had cancer with relatively short trajectories, and were referred from the oncology department. More men than women were diagnosed with types of cancer with somewhat longer trajectories. Despite longer trajectories, length of stay was shorter for men than for women. The most frequent referral source was the hospital. But compared to women, men (particularly younger men) were more often referred from home-based hospice care. The findings expand knowledge about dying and its various configurations; consequently, care and support needs will vary. For the dying person, it is important to know that care is provided according to the person’s preferences and given when needed.
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| 10. |
- Wåhlin, Ingrid, 1955-
(author)
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The circle of strength and power : Experiences of empowerment in intensive care
- 2009
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Doctoral thesis (other academic/artistic)abstract
- Patients and next of kin in intensive care often experience powerlessness, anxiety and distress and intensive care staff are repeatedly exposed to traumatic situations and demanding events. Empowerment has been described as a process of overcoming a sense of powerlessness and a model through which people may develop a sense of inner strength through connections with others. The aim of this thesis was to describe empowerment as experienced by patients, next of kin and staff in intensive care and to compare patient's experiences with staff and next of kin beliefs. Empowerment is reflected in this thesis as experiences of inner strength and power and of participation/self-determination.The study was based on open-ended interviews with 11 patients, 12 next of kin and 12 staff members from two intensive care units in southern Sweden. A phenomenological perspective was applied in three studies, while a qualitative content analysis was used in the forth study.Findings showed that nourishing relationships were of crucial importance, and contributed to every participant's experiences of empowerment regardless of whether he/she was an intensive care patient, a next of kin or a staff member. Patients were found to be strengthened and empowered by a positive environment where their own inherent joy of life and will to fight was stimulated, where they felt safe and a sense of value and motivation were encouraged and where they were taken seriously and listened to. Next of kin were extremely important to patients' experiences of safety, value, human warmth and motivation, and patients were strengthened when their next of kin were acknowledge and welcomed by staff.Next of kin in intensive care were strengthened and empowered by a caring atmosphere in which they received continuous, straightforward and honest information that left room for some hope and in which closeness to the patient was facilitated and medical care was experienced as the best possible. Some informants were also empowered by family support and/or participation in caring for the patient. Intensive care staff were empowered by both internal processes such as feelings of doing good, increased self-esteem/self-confidence and increased knowledge and skills, and by external processes such as nourishing meetings, excitement and challenge, well functioning teamwork and good atmosphere.When comparing patient experiences with staff and next of kin beliefs, there was agreement regarding joy of life and will to fight being essential to patients' experiences of inner strength and power, but staff and next of kin seemed to see this as a more constant individual viewpoint or characteristic than the patient did. Next of kin, and especially staff, seemed to regard the patient as more unconscious and unable to participate in the communication and interaction process than the patient him/herself experienced. A mutual and friendly relationship was experienced by the patients as highly empowering, while a more professional relationship was emphasized by the staff. These findings could serve as a basis for reflection about patient, next of kin and staff experiences of strength and power and if empowerment is seen as a dimension in quality of care, the findings from this thesis ought to be taken into consideration to increase the quality of care in intensive care.
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