| 1. |
- Andersson, Birgit, et al.
(författare)
-
Being a hospice volunteer
- 2005
-
Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 19, s. 602-609
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to obtain an understanding of what it means to be a hospice volunteer in a country without a tradition of hospice or palliative volunteer care services. Ten volunteers from three different hospices in Sweden were interviewed. Their narratives were interpreted with a phenomenological hermeneutic method. Three themes were disclosed: motives for becoming involved in hospices, encountering the hospice and encountering the patient. The interpretations disclose a need for the volunteer to be affirmed as a caring person and received in fellowship at the hospice. Positive encounters with a hospice are closely related to personal growth. Volunteers feel rejected if their need for meaning and for belonging to the hospice is not satisfied. This shows that hospices need to set goals in terms of volunteer support, particularly regarding existential issues following the encounter with the hospice and the patient. PMID: 16450877 [PubMed - indexed for MEDLINE]
|
|
| 2. |
- Carlander (Goliath), Ida, 1968-
(författare)
-
Me-ness and we-ness in a modified everyday life close to death at home
- 2011
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person’s need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers’ self-image were connected to intimacy, decreasing personal space and experiences such as “forbidden thoughts”. The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.
|
|
| 3. |
- Carling Elofsson, Linnea, et al.
(författare)
-
Meanings of being old and living with chronic obstructive pulmonary disease
- 2004
-
Ingår i: PALLIATIVE MEDICINE. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 18:7, s. 611-618
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to achieve a deeper understanding of the meaning of the lived experiences of elderly persons who are severely ill with chronic obstructive pulmonary disease (COPD) and in need of everyday care. Narratives from dialogues with six persons were interpreted using phenomenological–hermeneutic methodology. The structural analyses showed severe problems in daily life due to old age with a decaying body and dialectic experiences of resignation–contentedness, loneliness–connectedness, and being homeless–being at home. The interpreted whole reveals that life, suffering and comfort must be understood as an interlaced experience where ageing is just as important as the experience of illness. These elderly people's concerns and problems due to old age, a decaying body and being severely ill with COPD call for palliative and comfort care and thus challenge all professionals involved in their care.
|
|
| 4. |
- Friberg, Febe, 1950, et al.
(författare)
-
Communicating bodily changes : Physicians' ways of enabling patient understanding in gastrointestinal cancer consultations
- 2015
-
Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:03, s. 661-671
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: To explore how physicians communicatively enable patients' understanding of bodily changes in gastrointestinal cancer care consultations.Method: Two datasets were used. The first consisted of transcribed video-recorded palliative care consultations with three oncologists and six patients diagnosed with advanced gastrointestinal cancer, in the context of outpatient palliative care. The second dataset was audio-recorded transcriptions from diagnostic consultations with six surgeons and seven patients diagnosed with colorectal cancer, in the context of cancer surgery. An inductively driven and iterative analysis of interaction was performed, guided by Wetherell et al. (2001).Results: Two overarching communicative strategies were identified: (1) “visualizing strategies,” with the dimensions: visible strategies (visualizing with what you actually or potentially can see), sensory strategies (visualizing with what is possible to feel), and imaginative strategies; and (2) “contrasting strategies,” with the dimensions: contrasting subjective experiences and contrasting between the patient and other people.Significance of results: The visualizing and contrasting communicative strategies form parts of physicians' tacit and experience-based knowledge. The strategies employed by physicians reveal clear potentials to enable patients' understanding and sense making of bodily changes. However, these strategies need to be explicated and problematized as parts of both consultation practice and basic medical education. By means of increased awareness, physicians can more easily identify turning points in patients' levels of understanding, thereby enriching ordinary medical consultations with reflected pedagogical strategies and skills in how to dialogue in a person-centered manner.
|
|
| 5. |
- Frid, Ingvar, 1945, et al.
(författare)
-
Brain death: close relatives' use of imagery as a descriptor of experience.
- 2007
-
Ingår i: Journal of advanced nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 58:1, s. 63-71
-
Tidskriftsartikel (refereegranskat)abstract
- AIM: This paper is a report of a study to explore the use of imagery to describe the experience of confronting brain death in a close relative. BACKGROUND: The brain death of a loved one has been described as an extremely difficult experience for close relatives, evoking feelings of anger, emotional pain, disbelief, guilt and suffering. It can also be difficult for relatives to distinguish brain death from the state of coma and thus difficult to apprehend information about the diagnosis. METHODS: Narrative theory and a hermeneutic phenomenological method guided the interpretation of 17 narratives from close relatives of brain dead patients. All narratives were scrutinized for experiences of brain death. Data were primarily collected in 1999. The primary analysis related to close relatives' experience of brain death in a loved one. A secondary analysis of the imagery they used to describe their experience was carried out in 2003. FINDINGS: Six categories of imagery used to describe the experience of confronting a diagnosis of brain death in a loved one emerged: chaotic unreality; inner collapse; sense of forlornness; clinging to the hope of survival; reconciliation with the reality of death; receiving care which gives comfort. Participants also identified two pairs of dimensions to describe their feelings about the relationship between their brain dead relative's body and personhood: presence-absence and divisibility-indivisibility. Being confronted with brain death meant entering into the anteroom of death, facing a loved one who is 'living-dead', and experiencing a chaotic drama of suffering. CONCLUSION: It is very important for members of the intensive care unit team to recognize, face and respond to these relatives' chaotic experiences, which cause them to need affirmation, comfort and caring. Relatives' use of imagery could be the starting point for a caring conversation about their experiences, either in conversations at the time of the death or when relatives are contacted in a later follow-up.
|
|
| 6. |
- German Millberg, Lena, 1958-, et al.
(författare)
-
Academic learning for specialist nurses: a Grounded Theory study
- 2014
-
Ingår i: Nurse Education in Practice. - Oxford : Elsevier. - 1471-5953 .- 1873-5223. ; 14:6, s. 714-721
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The aim was to explore the major concerns of specialist nurses pertaining to academic learning during their education and initial professional career. Specialist nursing education changed in tandem with the European educational reform in 2007. At the same time, greater demands were made on the healthcare services to provide evidence-based and safe patient-care. These changes have influenced specialist nursing programmes and consequently the profession. Grounded Theory guided the study. Data were collected by means of a questionnaire with open-ended questions distributed at the end of specialist nursing programmes in 2009 and 2010. Five universities were included. Further, individual, pair and group interviews were used to collect data from 12 specialist nurses, 5-14 months after graduation. A major concern for specialist nurses was that academic learning should be "meaningful" for their professional future. The specialist nurses' "meaningful academic learning process" was characterised by an ambivalence of partly believing in and partly being hesitant about the significance of academic learning and partly receiving but also lacking support. Specialist nurses were influenced by factors in two areas: curriculum and healthcare context. They felt that the outcome of contribution to professional confidence was critical in making academic learning meaningful.
|
|
| 7. |
- Hahne, Pia, et al.
(författare)
-
Changes in profesionals’ beliefs following a palliative care implementation programme at a surgical department: a qualitative evaluation
- 2017
-
Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 16:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background One ambition regarding palliative care is that it should be more accessible to patients and families regardless of care setting. Previous studies show many difficulties and shortcomings in the care of patients with palliative care needs in acute care facilities, but also challenges regarding efforts to implement palliative care. The aim of this study is to evaluate how the implementation of palliative care, using a combination of integration and consultation strategies, can change beliefs regarding palliative care among professionals in a surgical department. Method In order to explore professionals’ experiential outcome of an educational implementation strategy, a before-after qualitative design was used. The study was based on three focus group discussions. Two discussions were conducted before introducing the implementation strategy and one was conducted after. The participants consisted of five nurses and two specialist surgeons from a surgical department in Sweden. The focus group discussions revealed a variety of different attitudes and beliefs, which were analysed using qualitative systematic text condensation. Results Beliefs regarding palliative care were identified in seven areas; the importance of palliative care, working methods in palliative care, team collaboration in palliative care, collegial support, discussions about diagnosis, symptoms at the end of life, and families of patients in palliative care. Changes in beliefs were seen in all areas except one: team collaboration in palliative care. Conclusion It is possible to change the beliefs of health care professionals in a surgical department regarding palliative care through the implementation of palliative knowledge. Beliefs were changed from an individual to a collective development where the group initiated a shared palliative working method. The changes observed were palliative care being described as more complex and participants differentiating between surgical care and palliative care.
|
|
| 8. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Palliative Care Research : A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012
- 2016
-
Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 30:1, s. 5-25
-
Forskningsöversikt (refereegranskat)abstract
- Background: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.Methods: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.Results: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.Conclusions: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
|
|
| 9. |
- Holm, Maja, et al.
(författare)
-
Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers
- 2015
-
Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 14
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
|
|
| 10. |
- Holm, Maja, et al.
(författare)
-
Preparing for family caregiving in specialized palliative home care : an ongoing process
- 2015
-
Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:3, s. 767-775
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: Family caregivers have been given increasing importance in palliative home care and face a great responsibility as caregivers for patients suffering from incurable illness. Preparedness for caregiving has been found to moderate negative effects and promote well-being in family caregivers. The aim of our study was to explore family caregivers' own experiences of preparing for caregiving in specialized palliative home care.Method: An interpretive descriptive design was chosen. A strategic sampling method was applied with a focus on participants who rated their preparedness as high and low using a structured instrument. Qualitative interviews were completed with 12 family caregivers. They were analyzed using a constant-comparative technique.Results: Family caregivers described their experience of preparing for caregiving as an ongoing process, rather than something done in advance. The process was illustrated through three subprocesses: "awaring" (realizing the seriousness of the situation), "adjusting" (managing a challenging situation), and "anticipating" (planning for the inevitable loss).Significance of results: Knowledge about the process of preparedness for caregiving and its subprocesses could be valuable to healthcare professionals, given the positive effects shown by preparedness in this context. Being able to recognize the different subprocesses of preparedness for caregiving could provide healthcare professionals with opportunities to support family caregivers in managing them. Preparedness for caregiving should be seen as a process to be supported and promoted continuously in palliative home care, not just at enrollment.
|
|
