| 1. |
- Alvariza, Anette, et al.
(författare)
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A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
- 2018
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
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| 2. |
- Alvariza, Anette, et al.
(författare)
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Carer Support Needs and Quality of Life in Palliative Care: A Methodological and Empiri-cal Study
- 2019
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Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-148..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The Carer Support Needs Assessment Tool (CSNAT) was developed to identify support needs of family carers in the context of palliative care which aims to improve quality of life, not just of patients but also their families. Aims: This study aims to 1) evaluate validity and reliability of the CSNAT in a sample of Swedish family carers and nurses in a specialised palliative care context, 2) investigate associations between carer support needs and quality of life. Methods: The study was conducted in four stages I: translation of CSNAT to Swedish; II: cognitive interviews with 8 family carers and 10 nurses; III: completion of the CSNAT, Preparedness for Caregiving Scale, Caregiver Burden Scale, Quality of Life in Life Threatening Illness- Family Carer Version by 118 family carers (spouses/partners: mean age 68 years; 69 women and 45 men). Evaluation of data quality, construct validity and test-retest reliability; IV: Investigation of associations between carer support needs and qual- ity of life using linear regression analyses. Results: CSNAT items were considered relevant and useful to identify support needs and demonstrated sound psychometric properties with satisfactory data quality and few problems with missing data. All items had satisfactory test-retest reliability. Construct validity was supported, as CSNAT items correlated with caregiver burden and preparedness. Associations were found between CSNAT items and seven different domains that represent carer quality of life; carer state, patient wellbe- ing, quality of care, outlook, environment and finances. Having more support needs was associated with poorer quality of life. Conclusion: This study adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family carers in pal- liative care. Associations between carer support needs and quality of life suggests that carers’ quality of life may be improved by acknowledging and addressing their needs for support.
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| 3. |
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| 4. |
- Backersten, Carl, et al.
(författare)
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"It doesn't Always Have to Be an Expert": Professionals' Perceptions of Practical Aspects of the Existential Dimension of Care for People Approaching Death
- 2024
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Ingår i: OMEGA-JOURNAL OF DEATH AND DYING. - 0030-2228 .- 1541-3764.
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Tidskriftsartikel (refereegranskat)abstract
- 'Existential' can be seen as a broad term for issues surrounding people's experiences and way of thinking about life. This study examined availability of existential care and found that many different staff categories performed existential care. Existential care is associated with conversations and experienced as both easy and difficult; several factors were cited, e.g. insufficient time, stress and the difficulty of addressing existential questions for oneself. Respondents reported need for education, guidance and reflection around existential issues and care. Existential care is described as a natural part of patient care that all professional categories have a responsibility to offer.
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| 5. |
- Backersten, Carl, et al.
(författare)
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To Talk or not to Talk About Existential Questions - An Interview Study With Elderly Persons and Patients With Fatal Disease
- 2024
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Ingår i: AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE. - 1049-9091 .- 1938-2715.
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Tidskriftsartikel (refereegranskat)abstract
- Background: Existential experiences often come to the fore in the case of a severe and/or life-threatening disease and in old age. This can evoke a variety of thoughts and emotions. The existential dimension is a concept that encompasses spiritual, religious and secular perspectives. Objective: The aim of this study was to gain a deeper understanding of how patients describe the existential dimension of life and whether and in what way the existential questions are raised in conversations and other forms of support within care. Methods: A qualitative design, with in-depth semi-structured interviews with patients admitted to an out-clinic oncology department at one hospital and participants living in a nursing home. The interviews were analysed using qualitative content analysis. Results: A total of 15 persons were interviewed. The respondents varied in age from 44 to 96. Two main themes emerged: What are existential questions? and Talk about existential questions. The existential questions refer to life as a whole and death as an end of life. It was summarized into three subcategories: The experience of the life, Existing within context and Spirituality and religion. About half of the participants thought it was important to talk about existential questions. They wanted to choose who to talk to, when and about what. Support was received from loved ones, professionals and experiences beyond conversations. Conclusions: The study provide new knowledge of how patients and elderly experience the existential dimension. The respondents emphasized a desire to be selective with whom they shared these questions and thoughts.
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| 6. |
- Benkel, Inger, et al.
(författare)
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A Qualitative Study of the Experiences of Parents With an Adult Child Who Has a Severe Disease: Existential Questions Will Be Raised
- 2017
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Ingår i: Inquiry-the Journal of Health Care Organization Provision and Financing. - : SAGE Publications. - 0046-9580 .- 1945-7243. ; 54
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Tidskriftsartikel (refereegranskat)abstract
- A prominent existential concept is that elderly parents should naturally become severely ill or die before a younger person does. If the reverse should happen, it may influence the parent's existential view of life. The aim of this study was to investigate the existential issues during illness time. This was a qualitative study with in-depth interviews and was conducted in a University Hospital in western Sweden. Eleven parents agreed to participate in individual interviews at baseline and 1 year later. The total number of interviews completed was 19. The study identified 5 areas according to an existential perspective: life took the wrong path, the age of the child, difficult to see the child as sick, worrying about the child, and the relationship with the adult child. Existential questions are often present in those circumstances and can be raised in conversations with parents. Existential questions began to arise for the parent when the child was diagnosed with the severe illness. The situation of having a severely ill child caused both fear and anxiety that the worst-case scenario they could imagine, that the child will die, might happen. Further research is required on this rarely investigated subject of having an adult child with a severe disease.
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| 7. |
- Benkel, Inger, et al.
(författare)
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Challenging conversations with terminally ill patients and their loved ones: Strategies to improve giving information in palliative care
- 2014
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Ingår i: SAGE Open Medicine. - : SAGE Publications. - 2050-3121. ; 2:2050312114532456
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The aim of the study was to explore the skills and strategies employed by professionals when having difficult conversations to provide information to loved ones as part of palliative care. Method: A qualitative design was chosen with in-depth interviews with nurses, assistant nurses and doctors a Hospital in Sweden and were analysed using content analysis. Results: The interviews produced examples of strategies used by professionals when imparting difficult information to patient and loved ones. The results fell into three areas: ‘Who is giving information’, ‘Structuring the conversation’ and ‘Different ways to convey a difficult message’. Conclusion: Using conversational skills and strategies in combination with a carefully planned structure appeared to facilitate difficult conversations with patients and loved ones. Further research is required, related to the specific circumstances in which the conversation takes place.
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| 8. |
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| 9. |
- Benkel, Inger, et al.
(författare)
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Family and friends provide most social support for the bereaved
- 2009
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Ingår i: PALLIATIVE MEDICINE. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:2, s. 141-149
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Tidskriftsartikel (refereegranskat)abstract
- Social support is important in the bereavement period. In this study, the respondents were family members and friends to a patient who had died at a palliative care unit. The aim was to explore wishes and needs for, access to and effects of social support in the bereaved. We found that the grieving person’s wishes for social support from their network and the network also provided most social support. The network consisted of the close family, the origin family, relatives and friend. Support from the professional staff was required when the network was dysfunctional or when the grieving person did not want to burden members of his/her own network. The need for social support from professional staff was most needed close to the death and some time after.
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| 10. |
- Benkel, Inger, et al.
(författare)
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Hospital staff opinions concerning loved ones' understanding of the patient's life-limiting disease and the loved ones' need for support
- 2012
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 15, s. 51-55
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to investigate the opinions of nurses, assistant nurses, and doctors about whether the patient's loved ones understand that the patient has a life-limiting disease, and if they talk about these matters with the patient or staff. The study was quantitative in design with data collected by means of a semi-structured questionnaire. The study was conducted at geriatric, oncology, and urology wards at a university hospital in western Sweden. Results indicate a perception that loved ones understand the seriousness and consequences of the disease. Professional caregivers perceived an association between the loved ones' understanding of the fatal disease and their ability to cope with the situation. In addition, the study found that follow-up activities after the patient's death are mostly lacking. © 2012, Mary Ann Liebert, Inc.
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| 11. |
- Benkel, Inger, et al.
(författare)
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Living with a chronic disease: A quantitative study of the views of patients with a chronic disease on the change in their life situation
- 2020
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Ingår i: Sage Open Medicine. - : SAGE Publications. - 2050-3121. ; 8, s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: Chronic diseases have an impact on and change patient's lives which means that they need to find ways to cope with the new situation. The aim was to describe how the chronic disease has influenced patients' views of their life situation. Methods: The study was quantitative in design with data collected using a semi-structured questionnaire. Descriptive statistics were used to compare similarities and differences between patients with asthma-allergy, diabetes mellitus, cancer and inflammatory rheumatoid arthritis. Results: Changes in their life were experienced as a negative outcome for the majority of participants. Support can be in the form of interpersonal support from various persons, but also from activities and beliefs/religion. Family and friends as well as healthcare professionals were identified as being most supportive. Sadness and worry were the most common emotions among the participants and their surrounding networks. Conclusion: People with a chronic disease have to live with the consequences the disease has for their life situation. They need to find strategies to cope with the negative outcome in their new life. Support from their own network and healthcare professionals can be helpful in the new life situation.
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| 12. |
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| 13. |
- Benkel, Inger
(författare)
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Loved ones within Palliative Care-understanding, strategies and need for support
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- It is well known that during the palliative process both patient and loved ones have to face, and prepare themselves, for the patient´s approaching death. Their daily life will be marked by the disease, and physical, social, psychological and existential questions will arise. Increased knowledge about being a loved one involved in palliative care could provide important guidance for the professional staff to enabling them to support the loved ones in finding new ways of living after the patient´s death. The aim of the thesis was to increase knowledge of what it can be to be a loved one involved in palliative care from the perspective of understanding what is going on, strategies used and support needed. The studies used both qualitative and quantitative methods, in the form of in-depth interviews and questionnaires with open-ended questions. Descriptive statistics and content analysis were used, in the analysis. The results show that the understanding of loved ones depended on information given in various ways during the disease process. The information could be gained either explicitly from health-care staff or implicitly from everyday conversation between themselves and the patient or throughout the progression of the disease. The loved ones used different types of strategies to cope with the situation and to be able to meet the patient in the current situation. The professional carers opinion was that the more informed and aware the loved ones were about the patient´s disease the more they were able to cope with the situation. Information was helpful both in preparing for and during the bereavement. Need for support after the patient´s death, depended on how they managed the bereavement process, together with the kind of relation they had had with the dead person. The personal network was the most important source of support in contrast to professional support which was mainly needed when the personal network for some reason failed or when the grief became complicated. The professional carers opinion was that they could provide the support the loved ones needed during the patient´s hospital stay but rarely after the patient had died. The healthcare system has to find methods to support the loved ones both during the time of the patient´s illness as well as during the bereavement process, for those who need such support.
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| 14. |
- Benkel, Inger, et al.
(författare)
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Managing Grief and Relationship Roles Influence Which Forms of Social Support the Bereaved Needs
- 2009
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Ingår i: American Journal of Hospice and Palliative Medicine. - : SAGE Publications. - 1049-9091 .- 1938-2715. ; 26:4, s. 241-245
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Tidskriftsartikel (refereegranskat)abstract
- Social support is important during the bereavement period and influences which form of social support the grieving person needs. This study shows 2 different strategies for coping with grief which also revealed which form of social support the grieving persons needed depend on what they found difficult to manage. The coping strategies are called grief management and involve different strategies and the roles in the relationship with the diseased. Systematically monitoring the bereaved makes it possible to understand the strategies they use in the grieving process and to identify when these strategies are insufficient so professional support can be offered.
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| 15. |
- Benkel, Inger, et al.
(författare)
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Palliativ vård
- 2016
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Bok (övrigt vetenskapligt/konstnärligt)
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| 16. |
- Benkel, Inger, et al.
(författare)
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Using coping strategies are not denial: helping the loved ones to adjust living with a patient with a palliative diagnose.
- 2010
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 13:9, s. 1119-1123
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Tidskriftsartikel (refereegranskat)abstract
- Background: When a patient receives the diagnosis of an incurable cancer, their loved ones have to face the fact that life will change. Realizing that the time together is with someone who is going to die, loved ones have to cope with the situation. Objective: The objective of this study was to increase the knowledge concerning what forms of coping strategies loved ones apply when a family member is faced with an incurable cancer. Design: The study had a qualitative approach using in-depth interviews as data from a sample of consecutive loved ones. The interviews were audiotaped, transcribed verbatim, and analyzed using a manifest content analysis. Results: The main findings showed that the strategies used by loved ones could be categorized into four different areas: thinking that the death is far off in the future; hoping for an improvement; living in the present; and utilizing the family and personal network. The loved ones used these strategies in order to learn to live with the fact that their spouse had been diagnosed with an incurable illness. Conclusion: The study shows that the manner in which the coping strategies are used is individual and also depends on how loved ones can cope with the concept of a dying person with whom they are very close. When loved ones have a need for support outside their personal network, it is important to understand that this need is directly related to coping strategies and that it is not a result of denial.
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| 17. |
- Bäckersten, C., et al.
(författare)
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"What it is like to be human": The existential dimension of care as perceived by professionals caring for people approaching death
- 2023
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Ingår i: Palliative & Supportive Care. - 1478-9515.
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Tidskriftsartikel (refereegranskat)abstract
- Objectives. Existential/spiritual questions often arise when a person suffers from a serious and/or life-threatening illness. "Existential" can be seen as a broad inclusive term for issues surrounding people's experience and way of thinking about life. To be able to meet patients' existential needs, knowledge is needed about what the existential dimension includes. The aim of this study was to investigate how professionals caring for people with life-threatening disease perceive the existential dimension of care. Methods. This study is based on a mixed method design utilizing a digital survey with open- and closed-ended questions. Descriptive statistics were applied to closed-ended questions and a qualitative descriptive approach was used for the responses to the open-ended questions. Healthcare professionals at specialized palliative care units, an oncology clinic and municipal healthcare within home care and a nursing home in Sweden answered the survey. Results. Responses from 77 professionals expressed a broad perspective on existential questions such as thoughts about life and death. Identifying existential needs and performing existential care was considered a matter of attitude and responsiveness and thus a possible task for any professional. Existential needs centered around the opportunity to communicate, share thoughts and experiences, and be seen and heard. Existential care was connected to communication, sharing moments in the present without doing anything and was sometimes described as embedded in professionals' ordinary care interventions. The existential dimension was considered important by the majority of respondents. Significance of results. This study indicates that with the right attitude and responsiveness, all professionals can potentially contribute to existential care, and that existential care can be embedded in all care. The existential dimension of care can also be considered very important by health professionals in a country that is considered secular.
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| 18. |
- Henoch, Ingela, 1956, et al.
(författare)
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The Shared Experience Help the Bereavement to Flow: A Family Support Group Evaluation.
- 2016
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Ingår i: The American journal of hospice & palliative care. - : SAGE Publications. - 1938-2715 .- 1049-9091. ; 33:10, s. 959-965
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Tidskriftsartikel (refereegranskat)abstract
- When a family member dies, a bereavement period is taking place for all family members. The death of a parent during childhood is a highly stressful event. This study evaluates families' experiences of family support groups when a parent has died. Families were participate in groups for children, teenagers, young adults, and parents in seven sessions. The same topic which was discussed in all groups. The support groups were evaluated qualitatively and quantitatively. The participants were satisfied with the groups and experienced that the shared experience facilitated bereavement to proceed. The results indicate that families' experiences is being more open about feelings in their own family. A support group can be one possibility to help the whole family in the bereavement.
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| 19. |
- Hård af Segerstad, Ylva, 1969, et al.
(författare)
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Towards a Nuanced Understanding of Grief in Contemporary Sweden
- 2024
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Ingår i: Global Conference on Person-Centred Care. Knowledge(s) and Innovations for Health in Changing Societies. 13-16 May 2024, Gothenburg, Sweden.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The purpose of this study was to examine the individual variations of grief in contemporary Sweden and to identify both existing and sought-after support measures for individuals experiencing grief. A survey was distributed that dealt with feelings, support, experiences of grief. The survey was answered by 255 people (181 = women; 74 = men). Some respondents experienced the loss as expected and some experienced it as unexpected. The results of the survey point to differences as well as similarities in terms of feelings, forms of support, strategies for dealing with grief and need for support, depending on how the death occurred. Research in person-centered care has observed that individual uniqueness and active listening constitute fundamental components. This insight also holds significance within the framework of support interventions for individuals experiencing grief. Despite criticism in academia for the lack of evidence for its effectiveness, normative models for grief stubbornly persist both in popular imagination and among health care professionals. Such assumptions have contributed to medicalizing and pathologizing what research has shown to be natural responses to loss for the vast majority of bereaved individuals. For person-centered care to effectively function as a strategy for promoting human well-being, on both an individual and a societal level, it is imperative that we develop an understanding of well-being in the terms articulated and expressed by individuals. Everyone, sooner or later, encounters losses and lives with grief. However, particularly within the healthcare domain, grief frequently remains concealed and inadequately addressed and may be misconstrued as ill-health and disease, potentially resulting in medical intervention. Therefore, it is of utmost importance that healthcare professionals possess a comprehensive understanding of natural grief.
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| 20. |
- Keegan, O., et al.
(författare)
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Using the Delphi technique to achieve consensus on bereavement care in palliative care in Europe: An EAPC White Paper
- 2021
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 35:10, s. 1908-1922
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Tidskriftsartikel (refereegranskat)abstract
- Background: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. Design: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%–79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. Setting/participants: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. Results: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. Conclusions: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe. © The Author(s) 2021.
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| 21. |
- Norinder, Maria, et al.
(författare)
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Higher levels of unmet support needs in spouses are associated with poorer quality of life - a descriptive cross-sectional study in the context of palliative home care
- 2021
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Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundFamily caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care.MethodsA descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses.ResultsHigher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health.ConclusionWith a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.
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| 22. |
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| 23. |
- Nyblom, Stina, et al.
(författare)
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End-of-life dreams and visions as perceived by palliative care professionals: A qualitative study
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press (CUP). - 1478-9515 .- 1478-9523. ; 20:6, s. 801-806
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Tidskriftsartikel (refereegranskat)abstract
- Objective End-of-life dreams and visions (ELDVs) have been suggested to be prevalent psychic phenomena near death that can provide meaning and comfort for the dying. There is a lack of studies from the secular Nordic countries. The aim of this study was to determine whether palliative care professionals in a Nordic country have experience of patients expressing dreams, visions, and/or inner experiences and, if so, how they are perceived. Method Focus-group interviews with 18 professionals in end-of-life palliative care were subjected to qualitative content analysis. Results Most (15/18) professionals had experience of patients with ELDVs. A dominant content was deceased loved ones. According to most professionals, many patients perceived their ELDVs as real and could report them with clarity. The experience could result in peacefulness for patients, as well as loved ones, and reduce fear of death. Some professionals themselves perceived ELDVs to be real and a normal part of dying while a few found them scary. Most professionals, however, found ELDVs hard to grasp. Many tried to explain the phenomena as the result of medical circumstances and confusion, although reporting that they considered most patients to be normal and of sound mind in connection with their reports on ELDVs. Most patients wanted to talk about their ELDVs, but some could be reluctant due to fear of being considered crazy. The professionals were open-minded and reported having no problem talking about it with the patients and tried to normalize the experience thereby calming the patient and loved ones. Significance of results The results strengthen the suggestion that ELDVs are common phenomena near death, worldwide. Although most professionals in palliative care recognized ELDVs as beneficial to patients, many found the phenomena hard to grasp and sometimes difficult to distinguish from confusion, indicating a continuous need for exploration and education.
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| 24. |
- Nyblom, Stina, et al.
(författare)
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End-of-Life Experiences (ELEs) of Spiritual Nature Are Reported Directly by Patients Receiving Palliative Care in a Highly Secular Country: A Qualitative Study
- 2021
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Ingår i: American Journal of Hospice and Palliative Medicine. - : SAGE Publications. - 1049-9091 .- 1938-2715. ; 38:9, s. 1106-1111
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Patients with life-threatening diseases have reportedly end-of-life experiences that are perceived positively. Loved ones and healthcare personnel may mistakenly interpret the phenomena as confusion and patients can be reluctant to talk about it due to fear of ridicule. Studies addressing patients directly are scarce and there is a lack of studies from highly secular countries. The aim was to establish whether end-of-life experiences are present among patients, oriented in time, place and person and receiving palliative end-of-life care in one of the world's most secular countries. If present, examine the content and patients’ subjective experiences. Design: Qualitative design with semi-structured, in-depth interviews. 25 participants, receiving end-of-life palliative care at home or in a hospice inpatient unit. Results: Patients were interviewed on 1-3 consecutive occasions. 16/25 patients reported end-of-life experiences of which the majority were perceived to be positive. Four themes were identified: vivid dreams while asleep, experiences while awake, references to medical circumstances and communication about end-of-life experiences. Prevalent content was deceased and living loved ones and journeys. Some patients distinguished between hallucinations/nightmares and end-of-life experiences. Conclusions: End-of-life experiences are present among oriented patients in a highly secular country and can have a profound positive impact, which warrants clinical attention. Education for healthcare personnel about end-of-life experiences is needed in order to support patients and loved ones and not mistakenly medicalize. Further directions for research could be to study the experiences of the phenomenon among health care personnel in the same context, which could strengthen the present findings. © The Author(s) 2020.
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| 25. |
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| 26. |
- Nyblom, Stina, et al.
(författare)
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Metaphors in End-of-Life Dreams in Patients Receiving Palliative Care: A Secondary Qualitative Study
- 2023
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Ingår i: American Journal of Hospice & Palliative Medicine. - : SAGE Publications. - 1049-9091 .- 1938-2715. ; 40:1, s. 74-78
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Tidskriftsartikel (refereegranskat)abstract
- Background: Metaphors are used by patients and professionals in the discourse of disease and can facilitate conversations about difficult topics. There is little information about metaphors present in patients' end-of-life dreams. Objective: Identify and interpret metaphors in end-of-life dreams, directly reported by patients in palliative care. Design: A qualitative study with a secondary analysis of transcribed face-to-face interviews with patients. Setting/Participants: The study includes 25 patients with end-stage disease receiving advanced end-of-life palliative care. In total, 41 interviews were performed. Results: Metaphors applicable to 3 themes were found: the journey toward death, the inevitability of death and death itself. The underlying meaning of the metaphors is often related to topics and emotions commonly relevant in dialogue with patients near death. Patients, however, often seemed unaware of the meaning of their dream metaphors. Conclusion: Metaphors pertaining to death are present in end-of-life dreams in patients with end-stage disease. We hypothesize that encouraging patients to talk about their dreams can expose metaphors that could facilitate end-of-life discussions.
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| 27. |
- Nyblom, Stina, et al.
(författare)
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Pandemic impact on patients with advanced non-COVID-19 illness and their family carers receiving specialised palliative home care: a qualitative study.
- 2022
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 12:5
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Tidskriftsartikel (refereegranskat)abstract
- To investigate the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening disease and their family carers.An interpretative qualitative design informed by phenomenological hermeneutics and based on data from in-depth interviews, performed between June and September 2020.Patients receiving specialised palliative home care and their family carers living in Sweden.22 patients (male/female 11/11) and 17 carers (male/female 5/12) aged 50 years and older. All the patients received specialised palliative home care and most were diagnosed with cancer.aged 18 years or older, diagnosed with an incurable life-threatening, non-COVID disease, sufficient strength to participate and capacity to provide informed consent. Participants were selected through a combination of convenient and consecutive sampling.The significance of the pandemic for both patients and carers showed a continuum from being minimally affected in comparison to the severe underlying disease to living in isolation with constant fear of becoming infected and falling ill with COVID-19, which some likened to torture.The imposed restrictions on social contact due to the pandemic were particularly palpable for this group of people with a non-COVID-19, life-limiting condition, as it was said to steal valuable moments of time that had already been measured.Most patients and carers found access to specialised palliative home care was maintained despite the pandemic. This care was of paramount importance for their sense of security and was often their sole visiting social contact.In the pandemic situation, highly accessible support from healthcare and social care at home is particularly important to create security for both patients and carers. Thus, to provide appropriate support, it is important for healthcare and social care personnel to be aware of the great diversity of reactions patients in palliative care and their carers may have to a pandemic threat.
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| 28. |
- Olsson, Annika, et al.
(författare)
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Sorg efter dödsfall
- 2022
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Ingår i: 7:e Nationella konferensen i palliativ vård, 5-7 september 2022, Göteborg.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 29. |
- Pham, Lotta, 1985-, et al.
(författare)
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Early integration of palliative care : translation, cross-cultural adaptation and content validity of the Supportive and Palliative Care Indicators Tool in a Swedish healthcare context
- 2020
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Ingår i: Scandinavian Journal of Caring Sciences. - Chichester : Wiley-Blackwell Publishing Inc.. - 0283-9318 .- 1471-6712. ; 34:3, s. 762-771
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Tidskriftsartikel (refereegranskat)abstract
- Background: Timely identification of patients with palliative care needs is a prerequisite for being able to carry out effective and equal palliative care. The Supportive and Palliative Care Indicators Tool (SPICT) identifies patients likely to benefit from a palliative approach.Aim: The main objective was to describe the translation, cross-cultural adaptation and content validation process of the SPICT-SE. In this process, the prefinal SPICT-SE was tested in focus group interviews to explore how the tool was perceived and interpreted by healthcare professionals in a Swedish healthcare context.Methods: In this qualitative descriptive study, the translation, cross-cultural adaptation and content validation process of the SPICT-SE was based on a recommended method for cross-cultural adaptation of self-report measures. The process included two independent forward translations, a synthesis, and one independent back-translation. An expert committee consolidated all the versions and developed the prefinal version of the SPICT-SE. The prefinal version of the SPICT-SE was tested in four focus group interviews with physicians and nurses engaged in inpatient or outpatient care in south-west Sweden. A thematic analysis of the transcribed interviews was performed. The SPICT-SE was then revised to the final version.Results: In the thematic analysis, four themes were constructed that together described how the SPICT-SE was perceived and interpreted by healthcare professionals: The mindset is familiar and relevant; the tool needs to be adjusted in order to be clearer; the purpose and consequences of the tool are ambiguous; and the tool supports a palliative approach.Conclusion: The SPICT-SE has now been successfully translated, culturally adapted and content validated in a Swedish healthcare context. © 2019 Nordic College of Caring Science
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| 30. |
- Sandman, Lars, et al.
(författare)
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Developing organisational ethics in palliative care: A three-level approach
- 2017
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Ingår i: Nursing Ethics. - : SAGE Publications. - 0969-7330 .- 1477-0989. ; 24:2, s. 138-150
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Tidskriftsartikel (refereegranskat)abstract
- Background: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. Research objective: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Research design: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. Findings: We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. Discussion: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Conclusion: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
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| 31. |
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| 32. |
- Skoglund, Johanna, et al.
(författare)
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On grief in contemporary Sweden
- 2023
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Ingår i: The 16th International Conference of Death, Dying and Disposal (DDD16): Learning from Suffering and Dying. New Languages from Sciences to the Humanities. 7-9 September 2023. Padua, Italy..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 33. |
- Skoglund, Johanna, et al.
(författare)
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Sorgens uttryck i Sverige
- 2023
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Ingår i: Den 8:e nationella konferensen i palliativ vård. Framtidens palliativa vård. 2-4 October 2023. Malmö, Sweden.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 34. |
- Westerlund, Caroline, et al.
(författare)
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Public awareness of palliative care in Sweden
- 2018
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 46:4, s. 478-487
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population.DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis.SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region.RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers.CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.
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| 35. |
- Öhling, Charlotta, et al.
(författare)
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Sharing Bad News: Communication Between Patients and Their Loved Ones in a Palliative Care Context.
- 2023
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Ingår i: American Journal of Hospice and Palliative Medicine. - : SAGE Publications. - 1049-9091 .- 1938-2715. ; 40:10, s. 1141-1146
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Tidskriftsartikel (refereegranskat)abstract
- Although communication is strongly emphasized in palliative care, not much research has focused on communication between patients and their loved ones. The purpose was to increase understanding of communication around severe illness between patients with a life-threatening disease, receiving palliative care, and their loved ones. Secondary intention was to identify strategies making easier for patients to talk about their condition with loved ones. The article is based on in-depth interviews with 15 patients and 8 loved ones. Interviews were analysed using qualitative content analysis. Communication about patient’s illness was often described as balancing between wanting to inform or know and wanting to protect. Both patients and loved ones deliberately talk in a way that reflects their relationship. They act, negotiate and communicate aiming at not wanting to create situations that are perceived as uncomfortable, either for themselves or for others. Patients also take everyday practicalities into account. In these interactions, some people become the patients’ inner circle – people with whom information is shared and co-owned. Other people find themselves outside the circle and patients may use them as test-subjects – speaking to them about things they might not dare reveal to their inner circle. These considerations are reflected in the themes: What is communicated, How communication is performed, and When it takes place. Our findings show that acting on the ideals of an “open and honest” form of communication is not always to be recommended. Professionals must instead strive to understand and respect the intentions of those involved.
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| 36. |
- Öhrling, Charlotta, et al.
(författare)
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“They must have seen it, you know.” Body talk, extension talk, and action talk: A qualitative study on how palliative care patients and their significant others express experiencing these nonverbal cues
- 2024
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Ingår i: PLOS ONE. - 1932-6203.
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Tidskriftsartikel (refereegranskat)abstract
- Communication about life-threatening disease and palliative care is essential but often experienced as difficult by those concerned and has mainly been studied in terms of its verbal components. Despite the fundamentality of nonverbal communication, its dimensions in care, especially in the communication by patients and their significant others, has not been as extensively examined. Drawing on a secondary qualitative content analysis of data from 23 interviews—15 with patients in specialized palliative home care in Sweden and 8 with their significant others—this study aims at understanding and characterizing how patients verbally express experiences of conveying nonverbal cues about life-threatening disease and its consequences and how their significant others express perceiving these cues. Patients expressed experiences of nonverbal communication in the form of cues conveying meaning about their disease and its consequences, often beyond their control. Whether and how the patients reinforced these cues verbally, depended on individual needs, care for others, and evaluations of relationships. Significant others acknowledged the presence of nonverbal cues and tried to interpret their meaning. Both patients and significant others emphasized the importance of nonverbal cues and actively related to how cues in the form of bodily appearance, aids, objects and acts, serve communicative functions about disease and its consequences. These dimensions of nonverbal communication are characterized as: body talk, extension talk and action talk. This study contributes to an international knowledge base on the complexities of nonverbal communicative aspects in these dimensions and how it affects patients and significant others. Professionals should be aware that dimensions of care, such as prescribed aids, from the patients’ perspective can be perceived as nonverbal cues that might “speak of” disease progression.
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| 37. |
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