| 1. |
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| 2. |
- Boström, Katrin, et al.
(författare)
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Being the next of kin of an adult person with muscular dystrophy
- 2006
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Ingår i: Clinical Nursing Research. - : SAGE Publications. - 1054-7738 .- 1552-3799. ; 15:2, s. 86-104
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Tidskriftsartikel (refereegranskat)abstract
- A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.
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| 3. |
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| 4. |
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| 5. |
- Duberg, Anna, 1976-
(författare)
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Dance Intervention for Adolescent Girls with Internalizing Problems : Effects and Experiences
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Globally, psychological health problems are currently among the most serious public health challenges. Adolescent girls suffer from internalizing problems, such as somatic symptoms and mental health problems, at higher rates than in decades. By age 15, over 50 % of all girls experience multiple health complaints more than once a week and one in five girls reports fair or poor health.The overall aim of this study was to investigate the effects of and experiences with an after-school dance intervention for adolescent girls with internalizing problems. The intervention comprised dance that focused on resources twice weekly for 8 months. Specifically, this thesis aimed to: I) investigate the effects on self-rated health (SRH), adherence and over-all experience; II) evaluate the effects on somatic symptoms, emotional distress and use of medication; III) explore the experiences of those participating in the intervention; and IV) assess the cost-effectiveness.A total of 112 girls aged 13 to 18 years were included in a randomized controlled trial. The dance intervention group comprised 59 girls, and the control group 53. In paper I, the dance group showed increased SRH scores compared to the control group (p = .02). Girls in the intervention group showed high adherence and a positive overall experience. In paper II, the dance group exhibited a decrease in somatic symptoms (p = .021), emotional distress (p = .023) and use of medication (p = .020) compared to the control group. In paper III, a strategic sample of 24 girls was interviewed. Qualitative content analysis was performed, and five generic categories emerged. Two were “An Oasis from Stress” and “Supportive Togetherness”, which was shown to represent the fundamental basis and setting of the intervention. The main category, participants’ central experience, was understood as “Finding embodied self-trust that opens new doors”. Paper IV revealed that, due to decreased number of visits to the school nurse and an increase in health related quality of life; the intervention was considered to be cost-effective (combined with the usual school health services). In summary, the results of this thesis show that this dance intervention for adolescent girls with internalizing problems generated positive health effects and proved to be cost-effective. For this target group, a non-judgmental environment and supportive togetherness proved to be of importance for participation. The results of this study may provide practical information for school health care staff and caregivers in designing future interventions.
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| 6. |
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| 7. |
- Duberg, Anna, 1976-, et al.
(författare)
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"I feel free" : Experiences of a dance intervention for adolescent girls with internalizing problems
- 2016
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - Järfälla : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Adolescent girls today suffer from internalizing problems such as somatic symptoms and mental health problems at higher rates compared to those of previous decades, and effective interventions are warranted. The aim of this study was to explore the experiences of participating in an 8-month dance intervention. This qualitative study was embedded in a randomized controlled trial of a dance intervention for adolescent girls with internalizing problems. A total of 112 girls aged 13-18 were included in the study. The dance intervention group comprised 59 girls, 24 of whom were strategically chosen to be interviewed. Data were analyzed using qualitative content analysis with an inductive approach. The experiences of the dance intervention resulted in five generic categories: (1) An Oasis from Stress, which represents the fundamental basis of the intervention; (2) Supportive Togetherness, the setting; (3) Enjoyment and Empowerment, the immediate effect; (4) Finding Acceptance and Trust in Own Ability, the outcome; and (5) Dance as Emotional Expression, the use of the intervention. One main category emerged, Finding Embodied Self-Trust That Opens New Doors, which emphasizes the increased trust in the self and the ability to approach life with a sense of freedom and openness. The central understanding of the adolescent girls' experiences was that the dance intervention enriched and gave access to personal resources. With the non-judgmental atmosphere and supportive togetherness as a safe platform, the enjoyment and empowerment in dancing gave rise to acceptance, trust in ability, and emotional expression. Taken together, this increased self-trust and they discovered a new ability to "claim space." Findings from this study may provide practical information on designing future interventions for adolescent girls with internalizing problems.
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| 8. |
- Duberg, Anna, 1976-, et al.
(författare)
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Influencing self-rated health among adolescent girls with dance intervention : a randomized controlled trial
- 2013
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Ingår i: JAMA pediatrics. - Chicago, USA : American Medical Association. - 2168-6203 .- 2168-6211. ; 167:1, s. 27-31
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To investigate whether dance intervention influenced self-rated health for adolescent girls with internalizing problems.Design: Randomized controlled intervention trial with follow-up measures at 8, 12, and 20 months after baseline.Setting: A Swedish city with a population of 130 000.Participants: Girls aged 13 to 18 years with internalizing problems, ie, stress and psychosomatic symptoms. A total of 59 girls were randomized to the intervention group and 53 were randomized to the control group.Intervention: The intervention comprised dance classes twice weekly during 8 months. Each dance class lasted 75 minutes and the focus was on the joy of movement, not on performance.Main Outcome Measures: Self-rated health was the primary outcome; secondary outcomes were adherence to and experience of the intervention.Results: The dance intervention group improved their self-rated health more than the control group at all follow-ups. At baseline, the mean score on a 5-point scale was 3.32 for the dance intervention group and 3.75 for the control group. The difference in mean change was 0.30 (95% CI, −0.01 to 0.61) at 8 months, 0.62 (95% CI, 0.25 to 0.99) at 12 months, and 0.40 (95% CI, 0.04 to 0.77) at 20 months. Among the girls in the intervention group, 67% had an attendance rate of 50% to 100%. A total of 91% of the girls rated the dance intervention as a positive experience.Conclusions: An 8-month dance intervention can improve self-rated health for adolescent girls with internalizing problems. The improvement remained a year after the intervention
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| 9. |
- Ekwall, Eva, 1950-, et al.
(författare)
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Lived experiences of women with recurring ovarian cancer
- 2014
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 18:1, s. 104-109
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Tidskriftsartikel (refereegranskat)abstract
- Background: Women with recurring ovarian cancer are living longer, due to advances in treatment options. They are now often outpatients, experiencing rapid encounters on treatment days. Whether this shift in care meets women’s needs has been scarcely explored scientifically.Purpose of the study: This study aimed to illuminate the phenomenon of living with recurring ovarian cancer as experienced by women in that condition.Methods and sample: A descriptive phenomenological method was used. Eight open-ended interviews with four women were performed approximately three and five years after the first recurrence of ovarian cancer. During these years the women had repeated clinically and radiologically verified recurrence requiring chemotherapy.Key results:The phenomenon of living with recurring ovarian cancer meant that the women felt forced to pay attention to the failing body in order to avoid a potential breakdown. The growing limitation of their intermittent strength meant that strength had to be captured and protected. Sharing their lives with others was difficult, due to the different living conditions. The women found no space to mediate their experiences, either in close relationships or with health care professionals. But, the circumstances they lived under also generated a gratitude for the unexpected extra time.Conclusions: The findings revealed that the four women were grateful to live a while longer, but needed to share their state of being. The findings are indeed directed to health care professionals, who need to provide a more patient-centred care to meet the women’s needs.
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| 10. |
- Ekwall, Eva, 1950-, et al.
(författare)
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The lived experience of life-prolonging treatment of recurring ovarian cancer
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- There has been an improvement in the effectiveness of chemotherapy agents to restrain recurring ovarian cancer, such that women live with the disease for longer than they used to. However, there is a knowledge gap concerning how patients define their world from a lifeworld perspective, when living with life-prolonging treatment. The aim of the study was to illuminate the phenomenon of living with life-prolonging treatment of recurring ovarian cancer. Four women were interviewed twice, once in 2003, three years after the first recurrence, and again in 2005. The method was based on Giorgi’s phenomenological method. A situated structure for each woman was followed by a transformation into a general structure for all women, which communicates the most invariant meaning of the phenomenon.The general structure showed the growing threat to the women’s existence and their perception that time was short, yet extendable. Awareness of life’s limitedness evoked gratitude for the possibility to postpone death. The body’s strength was increasingly fragile and jeopardized the restraining of the disease. The amount of strength available was unpredictable, which meant a break in the rhythm of everyday life. Strength had to be captured and cared for.The wish to share the meaning of the disease with others was expressed as unattainable. The women were unable to realize the desire to be seen as an example of someone living with ongoing treatments. In encounters with other people, the cancer-afflicted body stood out as a barrier to communication. Inability to share their experience was also manifested in the women’s encounters with caregivers, which were characterized by an objective attitude. The women met with a gradual compliance their caregivers’ inability to respond to them.
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| 11. |
- Ekwall, Eva, 1950-
(författare)
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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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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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| 12. |
- Källström Karlsson, Inga-Lill, 1947-
(författare)
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Att leva nära döden : patienters och vårdpersonals erfarenheter inom hospicevård
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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| 13. |
- Källström Karlsson, Inga-Lill, 1947-, et al.
(författare)
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Making sense of life close to death
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- This study’s aim was to find out how dying patients experience living near impending death. Eleven patient interviews were conducted via a palliative care unit that included a hospice ward and palliative home care. A qualitative, inductive design enabled descriptions of this complex situation. Analysis followed the Thorne et al. interpretive description approach. The findings revealed that when death became a reality, life took on new meanings and values (not in clear focus before) that were important to preserve or protect. This triggered need for feeling secure within this situation. These revelations were manifest in three subthemes that conceptualised the main theme Making sense of life close to death: (1) when possible death becomes a reality; (2) living with death as a reality and (3) a need for a feeling of security. How life can seem to dying patients demonstrates clinical relevance and complexity, which ensues when death is understood. Nurses must be aware of and respond to that complexity. Responding to patients who protect themselves from existential insight is a particular challenge; preserving their dignity requires being open to how life appears to them and following them as they give meaning to their existence. Dying patients have the right to be cared for according to their understanding of what it means to be dying.
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| 14. |
- Källström Karlsson, Inga-Lill, 1947-, et al.
(författare)
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Nurses’ perspectives on caring for hospice patients with weakening bodies
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Aim. To deepen the understanding of how nurses experience their care of dying patients with weakening bodies.Background. A socio-cultural context that emphasizes healthy bodies might have consequences for attitudes toward sickness and weakness. Physical disease-based deterioration puts limits on opportunities to achieve a fit body. When dying patients’ bodies are deteriorating, they must rely on and receive body-care assistance. Few nursing studies explore nurses’ perceptions about caring for the body.Method. Data were collected over a 3-month period in 2004-2005. Qualitative, conversational-style interviews were done to gather personal reflections of 19 nurses in a Swedish hospice ward. The approach of interpretative description was used to analyze the interviews.Findings. A main theme – struggling to acknowledge and unveil the person within the weakening body – was synthesized from four subthemes, i.e., nurses: (1) striving to understand patients’ experiences of bodily losses; (2) encouraging patients to uphold bodily functions and daily habits; (3) acknowledging and balancing patients’ need of bodily control; and (4) providing tender body care.Conclusion. Ways in which nurses interpret and care for bodies of dying patients influence how dying patients perceive their embedded selves at life’s end. Nurses struggled to promote person-oriented care by being flexible and creative and by using various strategies for body care that was aligned with the individual patient’s progression toward death. Person-oriented care was sometimes challenged when patients could not express their preferences or when the body became very deformed.
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| 15. |
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| 16. |
- Mazaheri, Monir, et al.
(författare)
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Bearing witness to life narratives : Iranian immigrant experiences of taking care of a family member with dementia
- 2011
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Ingår i: Diversity in Health and Care. - 1759-1422 .- 1743-4904. ; 8:1, s. 19-28
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Tidskriftsartikel (refereegranskat)abstract
- Caring for a person with dementia is one of the most devastating and challenging experiences that caregivers have to face. Many studies indicate that the experience of care giving reflects cultural care values and beliefs. Even though dementia care giving is the most frequently studied type of care as reflected in the literature, few studies have focused on dementia caregivers from culturally and linguistically diverse backgrounds. The purpose of this study was to explore Iranian immigrant experiences of taking care of a family member with dementia.An interpretive phenomenological approach was employed to investigate the experiences of ten Iranian family caregivers, each caring for a family member with dementia and living in Sweden. Caregivers were recruited through purposeful sampling and took part in semi-structured interviews. All of the individuals who were contacted participated in the study. The participants included seven women and three men, ranging in age from 40 to 65 years, from different cities. They had all lived in Sweden for at least 20 years. Two caregivers were married to people with dementia, and eight were caring for parents with dementia. Data analysis was guided by Benner's interpretive phenomenology and revealed three key themes, namely caring as an experience of fulfillment, admitting the diagnosis of dementia, and the shock of not being recognized by their family members with dementia. Positive aspects of care giving should be recognized and supported in order to facilitate the maintaining of caregivers' involvement. The positive experiences of care giving could help to alleviate the problems that are experienced by the caregivers of people with dementia.
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| 17. |
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| 18. |
- Mazaheri, Monir, et al.
(författare)
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Experiences of dementia in a foreign country : qualitative content analysis of interviews with people with dementia
- 2014
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Ingår i: BMC Public Health. - : BioMed Central. - 1471-2458. ; 14, s. 794-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Dementia is a worldwide health concern of epidemic proportions. Research in the field of subjective experience of dementia suffers from a lack of diversity of their participants including immigrants. Different portraits of life with dementia could help us understand how people with dementia conceptualise their experiences of dementia and how they live. Our study aimed to explore the subjective experiences of living with dementia among Iranian immigrants in Sweden.Methods: Qualitative content analysis of interviews with fifteen people with dementia from Iranian immigrant backgrounds were conducted (8 females and 7 males).Results: Three themes and seven associated sub-themes were revealed. The themes included: Being a person with dementia means living with forgetfulness (personal sphere), living with forgetfulness in the private sphere means feeling incompetent but still loved, living with forgetfulness in the public sphere means feeling confident and secure but also isolated.Conclusions: Living with dementia for the participants meant living with forgetfulness. They experienced feeling incompetent but still loved within their families and feeling confident and secure but also isolated in the society. Educating people with dementia and their families about the course and process of dementia may help them understand the changes better and adjust their expectations. Our study can provide a basis for healthcare workers to understand the experiences of living with dementia from this specific perspective.
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| 19. |
- Mazaheri, Monir, et al.
(författare)
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Experiences of living with dementia : qualitative content analysis of semi-structured interviews
- 2013
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 22:21-22, s. 3032-3041
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives To describe people's experiences of living with dementia in Iran. BackgroundA knowledge gap exists regarding the experiences of living with dementia in nonWestern contexts. This gap may be especially apparent within the Iranian context, where dementia research is relatively new. Deeper understanding about context-related experiences of dementia is a prerequisite for nurses' ability to provide adequate and meaningful care. DesignQualitative, cross-sectional design. MethodsQualitative content analysis of semi-structured interviews with people living with dementia in urban Iran (six women and nine men; 60-87years old). ResultsThe participants experienced their condition as a state of forgetfulness that was accompanied by losses and dependency on others. They wanted to feel good about themselves and feel important, but they continually struggled with matters such as a loss of accountability, feelings of futility and the frustration of others. Economic dependency and a lack of economic resources were sources of feelings of futility. ConclusionExperiences of living with dementia in Iran included a substantial struggle to stay connected to the social world and to deal with dramatic life changes, aspects of living with dementia that seem to be universal. However, the feelings of financial burden and the experience of being nagged for their shortfalls by family members have seldom been described in other studies and seem to represent a cultural aspect of their experience. Relevance to clinical practiceThe results of the study call for further nursing efforts in supporting people living with dementia in their struggle with their altered lives and in retaining their connections to everyday life. Furthermore, their family members might benefit from specific nursing interventions including information about dementia and advice on how to help the family members with dementia to interact with others while exercising their individual strengths.
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| 20. |
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| 21. |
- Stödberg, Rosa, et al.
(författare)
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Lived experience of significant others of persons with diabetes
- 2007
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Ingår i: Journal of Clinical Nursing. - Oxford : Wiley. - 0962-1067 .- 1365-2702. ; 16:7b, s. 215-222
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Tidskriftsartikel (refereegranskat)abstract
- Aim. To elucidate the lived experience of being a significant other of a person withdiabetes.Background. A person’s illness has consequences not only for the affected. Despite an increasing number of studies on significant others, there have been few about the experience of being a significant other of a person with diabetes.Design. Phenomenological-hermeneutic approach.Method. Fifteen significant others of persons with diabetes were interviewed.The interviews were conversational, starting with an open question. They were audiotaped and transcribed verbatim. The texts were analysed and interpreted.Results. The meaning of the lived experienced as narrated by the significant others is presented by way of four major themes: living in concern about the other’s health, striving to be involved, experiencing confidence and handling the illness. Many significant others said that they lived a normal life and had come to accept diabetes as a normal part of life. At the same time, the significantothers experienced sorrow when they saw the health of the person with diabetes deteriorate over time.Conclusions. Living near a person with diabetes meant being constantly attentive to how the person was feeling. The significant others wanted to be involved in the illness by the persons with diabetes and healthcare staff. They felt confidenceboth in the way the person with diabetes handled the illness and in the ongoing research about diabetes. The significant others had found ways to handle the illness but lacked support from healthcare staff.Relevance to Clinical Practice. Nurses need to provide support for significant others as well as good caring for the patients and this requires a profound understanding of significant others from their own perspective.
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| 22. |
- Sunvisson, Helena, et al.
(författare)
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Augmenting the Cartesian medical discourse with an understanding of the person's lifeworld, lived body, life story and social identity
- 2009
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Ingår i: Nursing Philosophy. - 1466-7681 .- 1466-769X. ; 10:4, s. 241-252
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Tidskriftsartikel (refereegranskat)abstract
- Using three paradigm cases of persons living with Parkinson's Disease (PD) the authors make a case for augmenting and enriching a Cartesian medical account of the pathophysiology of PD with an enriched understanding of the lived body experience of PD, the lived implications of PD for a particular person's concerns and coping with the illness. Linking and adding a thick description of the lived experience of PD can enrich caregiving imagination and attunement to the patient's possibilities, concerns and constraints. The work of Merleau-Ponty is used to articulate the middle terms of the lived experience of dwelling in a lifeworld. Examining lived experience of embodied intentionality, skilled bodily capacities as highlighted in Merleau-Ponty's non-mechanistic physiology opens new therapeutic, coping and caregiving possibilities. Matching temporal rhythms can decrease the stress of being assisted with activities of daily living. For example, caregivers and patients alike can be taught strategies for extending their lived bodily capacities by altering rhythms, by shifting hyperactivity to different parts of the body and other strategies that change the perceptual experience associated with walking in different environment. A medical account of the pathophysiology of PD is nessessary and useful, but not sufficient for designing caregiving in ways that enrich and extend the existential skills of dwelling of persons with PD. The dominance of mechanistic physiology makes caregivers assume that it is the 'real discourse' about the disease, causing researchers and caregivers alike to overlook the equally real lived experience of the patient which requires different descriptive discourses and different sources of understanding. Lack of dialogue between the two discourses is tragic for patients because caregivers need both in order to provide attuned, effective caregiving.
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| 23. |
- Sunvisson, Helena, et al.
(författare)
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Environmental influences on the experiences of people with Parkinson's disease
- 2000
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Ingår i: Nursing Inquiry. - : Wiley. - 1320-7881 .- 1440-1800. ; 8:1, s. 41-50
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Tidskriftsartikel (refereegranskat)abstract
- This study elucidates environmental influences on lived illness experiences. For two consecutive years, persons with Parkinson's disease (PD) participated in 1 week of daily walking in the Swedish mountains. Daily, low-intensive walking that is free of intense effort or time pressures associated with group interaction characterized the week. Participants were interviewed 3 months after the mountain stay regarding experiences in the mountains, daily living, and how their experience in the mountains influenced their daily living after returning home. A phenomenological method was used for data analysis. Results point to the close connection between mind, body, and environment. The connection becomes highlighted when people are afflicted with sickness, such as PD, which causes impaired control of body language, impaired voluntary mobility, and lowered energy levels. The results also show how a social context in an environment with suitable physical challenges led to a change in individuals' perceptions of the manageability of their experienced sicknesses. These results provide a deepened understanding of how individuals with PD experience illness, its influences on daily life, and how a suitable environment opens opportunities for managing daily issues.
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| 24. |
- Sunvisson, Helena
(författare)
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Research and ontology : neurology and Parkinson's disease sufferers' lived experiences of embodiment and dwelling in lifeworlds
- 2010. - 1
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Ingår i: Interpretive phenomenology in health care research. - Indianapolis : Sigma Theta Tau International. - 9781930538887 ; , s. 59-73
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Bokkapitel (refereegranskat)abstract
- Interpreative phenomenology augments the decontextualized stories told by rational-empirical research studies of human beings. It reveals knowledge embedded in caring, cultural and social practices, engaged skilled actions, embodied know-how, and concrete ways people cope with everyday life events such as health, illness, injury, birth, suffering, and dying. Interpretive Phenomenology in Health Care Research reveals the intimate, descriptive, and interpretive accounts what it means to be human and what is common to human lives. The book will help readers better understand the philosophy and methodology used to study the lived experiences of persons receiving health care.
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| 25. |
- Sunvisson, Helena
(författare)
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Stopped within a track : embodied experiences of late-stage Parkinson's disease
- 2006
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 1:2, s. 91-99
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Tidskriftsartikel (refereegranskat)abstract
- Based on a phenomenological understanding of humans as situated and intentional beings, this study explored experience of late-stage Parkinson's disease. A woman aged 72, in the late stages of Parkinson's disease, was interviewed regarding her experiences over a five-year period. A phenomenological method was used for scrutinizing tape-recorded and verbatim transcribed interviews. Results reveal that late-stage Parkinson's disease is manifested as a sense of lost control over daily life and as a life with unpredictable bodily reactions. There was a demand to live within an increasingly rigid, slow rhythm of time, with continuously decreased embodied skilfulness, which caused fragmented mobility patterns. Movements were no longer intentional, i.e. outward; they demanded inward concentration. The intention to move was no longer primary, e.g. to grab a handle, because space is mentally and physically understood. Instead, intention was secondary because movement became primary. This phenomenon changed embodied understanding of relationships with the room, distances, and things. Understanding of distance, e.g. became unclear, and this affected ways in which place and situation were experienced and lived. The results highlight ways that a Parkinson's sufferer lives and experiences space and time in surroundings and situations; and how the person meets and deals with significant challenges.
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| 26. |
- Sunvisson, Helena
(författare)
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The embodied experience of living with Parkinson’s disease
- 2003
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- People with Parkinson’s disease (PD) face many continuous limitations in daily life because of their illness. To illuminate the lived experience of PD and to evaluate ways to give individuals who suffer from PD comprehensive opportunities to come to terms with the impact that the illness has on daily living, two intervention programs and one longitudinal study were carried out. The overall aims of this thesis were to investigate daily living conditions and the role of environmental and personal strategies for PD-afflicted persons and to illuminate lived illness experience as narrated by persons who suffer from PD - to gain understanding for meeting persons afflicted with PD. The first intervention study (I) was design as a five-week outpatient course with two weekly two-hour sessions; each session consisted of one hour of dialogue and one hour of physical performance. The next intervention (II, III) was carried out for three consecutive years as a week-long stay in a Swedish mountain area. One study (II) evaluated the effect of the intervention on PD-afflicted persons' mobility patterns, and the other study (III) described environmental influences on lived illness experience as narrated by these persons. In the longitudinal study (IV), a woman within the complicated stage of PD was interviewed continuously over a five-year period about her lived illness experiences. In study (I) questionnaires (SIP, UPDRS) and an optoelectronic instrument (PLM) were used to evaluate effects from the intervention. In study (II), the PLM was used to evaluate effects from the intervention on mobility patterns in the participants. In the first intervention, 43 persons with PD participated. The mean age was 75 and mean PD duration was 6 years (I). In the second intervention, 12 persons with PD participated, of which three participated three times and three persons participated two times; the mean age was 68 and mean PD duration was 8.5 years (II, III). When the longitudinal study started, the female participant was 72 and had received the PD diagnosis 15 years earlier (IV). Statistical methods (I, II) and phenomenological methods were used for data analysis (III, IV). In study I improvements in the participants psychosocial dysfunction, sleep patterns, and in daily activities lasted 12 weeks as did improved mobility patterns. In study II, results in mobility patterns showed immediate and long-lasting improvements in movement speed and integration of movements. Study III illuminated the importance of the environment for experiences of involvement, experiences of limitations, and trust in own abilities. Experiences during the intervention had long-lasting influence on daily living. Study IV illuminated the lived experience of the complicated stage of PD as a striving for involvement within experiences of changing habitual skillfulness that was influenced by environmental and emotional experiences. In creating new forms of expression, new worlds were discovered. These experiences changed the lived meaning of time and space.
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