| 1. |
- Ahlberg, Mona, 1966-
(författare)
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Being cared for in an Intensive Care Unit – family functioning and support
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- When COVID-19 came as an uninvited guest into our everyday lives, nursing in intensive care was affected and thus the studies contain data from both before and during the COVID-19 pandemic.Before the pandemic, most intensive care units, which care for patients with critical illness in a technical setting, allowed family members to visit the patient 24 hours a day. The intensive care unit is a stressful and frightening environment for both the patient and their family. They can be affected both mentally and physically, showing symptoms such as difficulty sleeping, stress and depression. The intensive cared patient often does not remember anything from the time they were cared for in the intensive care unit, and the family needs to explain and recount this unconscious time. During the pandemic, this changed, with restrictions and limited opportunities to visit the hospital and patient due to virus outbreaks. Family members received information about the patient's medical condition by phone from a physician. The overall aim of this thesis was to explore and conceptualise the family functioning of families with a family member treated in the intensive care unit. There was also an intention to describe and evaluate how an intervention affects the family and individual family members in families where a family member received intensive care.In these studies, qualitative, quantitative, as well as mixed methods were utilised. Participants were adult intensive cared patients from seven intensive care clinics, and their families. The results examined between families are based on the patient and family characteristics. The results from study I show that families who have experienced COVID-19 and with a family member who was cared for in an intensive care unit, have existential thoughts. Study II shows no major impact on family function between families, but the answers differ within the families who experienced intensive care. In study III, concerning families experiencing intensive care and attending family health conversations, there was an awareness of family function. The conversations brought the family closer together, through improved understanding of each other. In study IV family functioning, hope and sense of coherence were com-pared among the participants in two intervention groups: Family health conversations and support group conversations. Family functioning and hope were higher in the group that participated in the family health conversations and comprehensibility, meaningfulness and vitality were higher among the participants in the support group conversation. By exploring how family function affects the individual family member and the family as a unit during critical illness and intensive care, new ways of working can be strengthened in the care of patients and their families.
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| 2. |
- Hellqvist, Carina, 1976-, et al.
(författare)
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Effects of self-management education for persons with Parkinson's disease and their care partners : A qualitative observational study in clinical care
- 2020
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Ingår i: Nursing and Health Sciences. - : John Wiley & Sons. - 1441-0745 .- 1442-2018. ; 22:3, s. 741-748
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Tidskriftsartikel (refereegranskat)abstract
- Persons with Parkinson's disease and their care partners want support from healthcare to develop the skills to handle everyday life with disease. Earlier findings indicate that participants of the self‐management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self‐monitoring included in the program, and use them to communicate health care status and needs in clinical encounters. Data was collected 3–15 months after participation in the program and analysed using constant comparative analysis. Three categories were evident: “Self‐observation in everyday life”, “Self‐care activities to promote health” and “Managing emotional impact of Parkinson's Disease”. Categories were linked together in a core category that highlight the use of self‐management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self‐observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.This article is protected by copyright. All rights reserved.
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| 3. |
- Hellqvist, Carina, 1976-
(författare)
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Self-management support to handle everyday life with Parkinson´s disease
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Being diagnosed with Parkinson´s disease (PD) is a life-altering experience. The long-term condition requires continuous adjustments to the everyday life not only of the person affected, but also for care partners. There is still insufficient knowledge on how best to support this process of acceptance and adjustment to encourage self-management.Aims: The aim of this thesis is to enhance the knowledge and understanding of self-management for persons with PD (PwPD) and their care partners. Furthermore, to investigate whether the self-management intervention Swedish National Parkinson School can be used as a tool to support self-management, and how nurses specialised in the care of persons with Parkinson´s disease can tailor their support to encourage self-management in everyday life. Method and design: Both qualitative and quantitative designs and methods were used in the three studies included in this thesis. Participants included a total of 209 persons. Of these, 127 were persons with PD and 75 were care partners. Participants with PD were largely in the middle stages of the disease. The time since diagnosis ranged from less than one year to over 20 years, and most participants had lived with the disease for around five years. Participants were cared for at five separate outpatient clinics, both geriatric and neurological, in three county and two university hospitals across Sweden. Data collection included observations, interviews, self-reported questionnaires and audio-recordings of the National Parkinson School in clinical care. The overall results of this thesis were obtained using a qualitative approach, where the results of the three studies were analysed using qualitative thematic analysis as described by Braun and Clarke (2006).Results: In combining the results of the separate studies through thematic analysis three distinct but interrelated themes were evident. These described the processes and efforts of persons to accept, manage and adjust to everyday life with PD. The theme “A changed reality” involves participants´ descriptions of how life changed after the diagnosis of PD. For many this was a shock, and both the person affected and their care partners experienced a variety of emotions such as anger, denial and hopelessness. It changed their personal identities, their perception of themselves as individuals and as a couple. They worried about what the future would hold, and the uncertainty was hard to accept and handle. One strategy for processing and beginning to acknowledge the new situation involved speaking openly about the diagnosis. The second theme “Finding a new path”, involves a description of how, after accepting or at least acknowledging, their new reality, participants started to find ways of managing the impact of PD on everyday life, incorporating it into their current life and identity. Many felt new knowledge was needed and turned to books and websites on PD. An intervention which was appreciated in terms of providing tools for self-observation and self-knowledge was the Swedish National Parkinson School. Participants later used these techniques to communicate and observe symptoms and healthcare needs. Being an active participant in life and performing activities such as physical exercise or other activities they enjoyed were also used as a strategy to feel satisfaction in life. Participants frequently worked out self-care and compensatory strategies to handle everyday tasks. Another strategy they found comforting and helpful involved retaining a positive mind-set and believing that a good future lay ahead. In the third category “The companions”, the participants described self-management in everyday life as a task they performed together. Management of PD was considered the shared responsibility of the person affected and the care partner, but was also influenced by others such as family members and close friends. The Swedish National Parkinson School provided knowledge as a form of common ground for the person affected and the care partner. During the Swedish National Parkinson School, the social interaction involved in exchanging experiences and feeling support from others in the same situation was considered helpful and was much appreciated.Conclusions: Management of PD in everyday life involves both the person affected and the care partner. After the initial emotional reactions, alongside feelings of lost identity and an altered life, persons started to look to the future and were ready to find ways of handling the changed conditions of their everyday lives. Persons with PD and their care partners were now willing to learn more about PD and to find tools and strategies to help them manage its impact on their everyday lives. During this phase, they appreciated the support of the Swedish National Parkinson School intervention. In the intervention, they would meet others in the same situation to find support and exchange experiences. They also turn to healthcare for support in the process of self-management in everyday life. Nurses working specifically to support PwPD and their CP will need to tailor support taking into account the disease trajectory as well as the psychological processes involved in accepting and adjusting to PD to best fit the unique needs and wishes of every person with PD and their care partner.
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| 4. |
- Johansson, Helena, 1980-, et al.
(författare)
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The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease : A qualitative study
- 2023
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Ingår i: Chronic Respiratory Disease. - : Sage Publications. - 1479-9723 .- 1479-9731. ; 20
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an inflammatory and irreversible lung disease. For next of kin caregiver burden can be a consequence of the situation of being close to a person affected by a chronic disease and in need of help. When there is an imbalance between stressors and resources to cope with the situation, caregiver burden emerges. Knowledge is sparse about how the caregiver burden is experienced by the next of kin. Therefore, the aim of this study is to identify and describe the caregiver burden experienced by next of kin of persons with severe COPD.METHOD: Qualitative interviews with 21 next of kin were conducted. Thematic analysis was used in accordance with the six steps of Braun and Clarke.RESULTS: The next of kin experience caregiver burden as 1) changed roles in daily life 2) putting life on hold 3) to stand aside. The next of kin are in need of support to manage daily life.CONCLUSIONS: The caregiver burden affect the next of kin physically and emotionally. To prevent advance consequences, person-centered care can be used to support the next of kin in the situation.
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| 5. |
- Johansson, Helena, 1980-, et al.
(författare)
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To live a life with COPD - the consequences of symptom burden
- 2019
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Ingår i: International Journal of COPD. - Auckland, New Zealand : Dovepress. - 1176-9106 .- 1178-2005. ; 14, s. 905-909-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Chronic obstructive pulmonary disease (COPD) is a prevalent disease as with its symptom and treatment gives a burden for the affected person, family, health care and finances. Today the knowledge and understanding are sparse regarding COPD affected person´s own lived experiences about the symptom burden and its effect on their daily life. Due to this knowledge gap the aim of this study was to identify and describe the symptom burden and its effect on daily life in people with COPD based on their own lived experiences.Subject and Method: Eleven males and fourteen females in GOLD stage III and IV within an age of 58-82 years were interviewed. An interview guide guided the face-to-face interviews. Data was analyzed with Thematic Analysis following the six steps according to Braun and Clarke.Results: The result show one theme; An altered everyday life. The altered everyday life lead to a need of support to handle the everyday life and different strategies to live as desired. Persons with COPD need to take the day as it comes dependent on the status of the day. The life is not easy to plan, and the day must be taken as it comes. The life is handled with strategies in breathing techniques, take care of the home and garden as well as the emotions. Support from the next of kin, society and the health care is important.Conclusion: This study provides insight in that persons with COPD in stage III and IV have an altered life caused by the symptom burden. They must struggle with strategies to handle everyday life. There is a need of support from next of kin and society to facilitate life, but this support needs to be well-balanced.
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| 6. |
- Kiwi, Mahin, 1954-
(författare)
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Dementia across cultural borders : Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Today’s multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with “cultural” backgrounds other than their own. The world’s population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual’s lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the “old” to the “new” way of life and from a life without dementia to a life with dementia involve making sense of life’s changes.Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives’ decisions to end caregiving at home, and Iranian families’ and relatives’ attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of “home”.Method: This thesis is based on more than one year’s fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography.Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people.Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home.In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia’s personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in.Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents’ sociocultural background, generational differences and incoherence, aligned with staff members’ different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person’s native language was not enough to claim that they were actually communicating. Family caregivers’ decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person’s autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents’ daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them.The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, “home”, was a place to be and to live.
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| 7. |
- Ahlberg, Mona, 1966-, et al.
(författare)
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Family Health Conversations create awareness of family functioning.
- 2020
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Ingår i: Nursing in Critical Care. - : Wiley. - 1362-1017 .- 1478-5153. ; :2, s. 102-108
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The whole family is affected if one family member is critically ill. The Family Health Conversation Intervention may give the family tools that support healthier family functioning.AIMS AND OBJECTIVES: The aim of this study was to identify which components of family function are affected when families participate in Family Health Conversations.DESIGN: A secondary analysis was performed of existing qualitative interviews. The Family Health Conversation is an intervention where nurses ask the family reflective questions, and reflection is made possible in three conversation sessions.METHODS: This study included transcribed data from 13 follow-up interviews from seven families attending Family Health Conversations after three and 12 months. Data were analysed with narrative analysis, focusing on family function.RESULTS: Three themes were identified. The families' family functioning had been supported with: improved understanding of each other-there was an understanding of being in the same situation but still having totally different experiences; more concern for each other-they talked about their different experiences and felt they had become closer to each other; and a process of working through-they had experienced working through various experiences, standing by and supporting, and then being able to move on.CONCLUSIONS: The Family Health Conversation Intervention is provided to families, accompanied by nurses. The families in this study gained an awareness of their family function that brought the family closer because of improved understanding of each other and the situation. The families experienced openness, and the family members spoke more freely with each other, which facilitated the progress of working through the experience of critical illness and helped to maintain healthy family functioning.RELEVANCE TO CLINICAL PRACTICE: It is important to have an overall perspective and to recognize the patient and the family as equally important within the family for awareness of family function.
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| 8. |
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| 9. |
- Appelin, G, et al.
(författare)
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A comprehensive picture of palliative care at home from the people involved
- 2005
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 9:4, s. 315-324
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is, striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation. © 2004 Elsevier Ltd. All rights reserved.
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| 10. |
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