| 1. |
- Strang, P., et al.
(författare)
-
Existential pain--an entity, a provocation, or a challenge?
- 2004
-
Ingår i: J Pain Symptom Manage. - : Elsevier BV. - 0885-3924. ; 27:3, s. 241-50
-
Tidskriftsartikel (refereegranskat)abstract
- "Existential pain" is a widely used but ill-defined concept. Therefore the aim of this study was to let hospital chaplains (n=173), physicians in palliative care (n=115), and pain specialists (n=113) respond to the question: "How would you define the concept existential pain?" A combined qualitative and quantitative content analysis of the answers was conducted. In many cases, existential pain was described as suffering with no clear connection to physical pain. Chaplains stressed significantly more often the guilt issues, as well as various religious questions (P<0.001). Palliative physicians (actually seeing dying persons) stressed more often existential pain as being related to annihilation and impending separation (P<0.01), while pain specialists (seeing chronic patients) more often emphasized that "living is painful" (P<0.01). Thirty-two percent (32%) of the physicians stated that existential suffering can be expressed as physical pain and provided many case histories. Thus, "existential pain" is mostly used as a metaphor for suffering, but also is seen as a clinically important factor that may reinforce existing physical pain or even be the primary cause of pain, in good agreement with the current definition of pain disorder or somatization disorder.
|
|
| 2. |
- Strang, Susann, 1953, et al.
(författare)
-
Experience of Guilt and Strategies for Coping with Guilt in Patients with Severe COPD: A qualitative interview study
- 2014
-
Ingår i: Journal of Palliative Care. - : SAGE Publications. - 0825-8597 .- 2369-5293. ; 30:2, s. 108-115
-
Tidskriftsartikel (refereegranskat)abstract
- Guilt is associated with an increased level of mood disturbance and a poorer quality of life. The aim of this study was to explore how patients with severe COPD view and experience guilt and the ways in which they cope with this guilt. A total of 31 COPD patients were interviewed about their perceptions and experiences of guilt. Qualitative content analysis was used to examine the interviews. In the descriptive (manifest) analysis, the categories "not feeling personal guilt" and "experiencing guilt" emerged; in the interpretative (latent) analysis, various strategies for dealing with guilt were identified for example, acceptance or blaming others. Relatively few patients reported that they felt guilt on a conscious level, but those who did expressed anguish, and remorse before God; some felt blamed by others. It is important that healthcare providers acknowledge the guilt that their patients express, since guilt may have adverse effects on the patients' overall health.
|
|
| 3. |
- Strang, Susann, 1953, et al.
(författare)
-
Family Caregivers' Heavy and Overloaded Burden in Advanced Chronic Obstructive Pulmonary Disease
- 2018
-
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:12, s. 1768-1772
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. Objective: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness. Design: This is a qualitative interview study using both focus group interviews and individual interviews. Setting/Subjects: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed. Measurements: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. Results: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. Conclusions: Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member.
|
|
| 4. |
- Strang, Susann, 1953, et al.
(författare)
-
Palliative care in COPD-web survey in Sweden highlights the current situation for a vulnerable group of patients.
- 2013
-
Ingår i: Upsala journal of medical sciences. - : Uppsala Medical Society. - 2000-1967 .- 0300-9734. ; 118:3, s. 181-6
-
Tidskriftsartikel (refereegranskat)abstract
- Abstract Background. Chronic obstructive pulmonary disease (COPD) is a common cause of death. Despite the heavy symptom burden in late stages, these patients are relatively seldom referred to specialist palliative care. Methods. A web-based survey concerning medical and organizational aspects of palliative care in COPD was distributed to respiratory physicians in Sweden. There were 93 respondents included in the study. Results. Palliative care issues were regularly discussed with the patients according to a third of the respondents. About half of the respondents worked in settings where established routines for co-operation with palliative units were available at least to some extent. Less than half of the respondents (39%) were aware of current plans to develop palliative care, either as a co-operative effort or within the facility. Palliative care is focused on physical, psychological, social, and existential dimensions, and the proportions of respondents providing support within these dimensions, 'always' or 'often', were 83%, 36%, 32%, and 11%, respectively. Thus, to treat the physical dimensions was perceived as much more obvious than to address the other dimensions. Conclusions. The survey indicates that the priorities and resources for palliative care in COPD are insufficient in Sweden. The data, despite limitations, reveal a lack of established team-work with specialized palliative care units and actual plans for such co-operation.
|
|
| 5. |
|
|
| 6. |
- Strang, Susann, 1953, et al.
(författare)
-
Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: A qualitative study of caregivers' and professionals' experiences in Swedish hospitals
- 2019
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 9
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective. Design A qualitative interview study involving semi-structured interviews and analysed with content analysis. Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3-4) COPD and 17 healthcare staff. Results Two main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself. Conclusions Our findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.
|
|
| 7. |
- Andersson, Klara, et al.
(författare)
-
Multiple stigma among first-generation immigrants with epilepsy in Sweden
- 2021
-
Ingår i: Epilepsy and Behavior. - : Elsevier BV. - 1525-5050. ; 115
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. Methods: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. Results: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme “It is a fight to be appreciated as a person and member of society” illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. Conclusions: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable. © 2020 Elsevier Inc.
|
|
| 8. |
- Andersson, K., et al.
(författare)
-
Trustful communication in the medical encounter: Perspectives of immigrated people with epilepsy
- 2021
-
Ingår i: Chronic Illness. - : SAGE Publications. - 1742-3953 .- 1745-9206. ; 17:3, s. 159-172
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Foreign-born people with epilepsy carry two mutually independent risk factors for poor health. While epilepsy increases the need for trust and clear communication, minority status presents additional barriers in communication, causing misconceptions, inadequate treatment and increased suffering. Objectives: This study aimed to explore experiences of communication in the medical encounter from the perspectives of foreign-born people with epilepsy. Methods: A qualitative approach was applied. Twenty semi-structured in-depth interviews were conducted, recorded, transcribed verbatim and analyzed using manifest and latent content analysis. Results: Within the main theme, “Trustful communication in unpredictable terms of life,” three subthemes appeared: “Social struggle overshadowing the epilepsy condition”; “Reliable health consultations as a key to feeling safe” and “Addressing ‘the real problem’ in the medical encounter.” A reduced social network due to migration, together with fears related to epilepsy, seems to increase the need for immediate access to health consultations and the need to be listened to. Patients’ narratives shed light on multiple social, medical and psychological events that may present reasons for the lack of medical adherence or missed booked appointments. Discussion: A respectful approach, listening and confirming the normalcy of epilepsy events seem fundamental for trustful communication in the context of epilepsy, regardless of a patient’s culture or country of origin. © The Author(s) 2019.
|
|
| 9. |
- Browall, Maria, et al.
(författare)
-
Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care
- 2014
-
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:6, s. 636-644
-
Tidskriftsartikel (refereegranskat)abstract
- Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress. Aim: The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer. Methods and sample: Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured. Results: Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live. Conclusions: This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.
|
|
| 10. |
- Browall, Maria, 1963, et al.
(författare)
-
Health care staff's opinions about existential issues among patients with cancer.
- 2010
-
Ingår i: Palliative & supportive care. - : Cambridge University Press. - 1478-9523 .- 1478-9515. ; 8:1, s. 59-68
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients. METHOD: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were tape-recorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories. RESULTS: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation. SIGNIFICANCE OF RESULTS: The strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.
|
|
| 11. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Development of a training intervention of existential support to patients with cancer.
- 2014
-
Ingår i: Sigma Theta Tau International Honor Society’s 2nd European Regional Conference i Göteborg, Sverige, 2014-06-16 – 06-18..
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Existential issues in patients with cancer need to be highlighted, but a literature review revealed lack of intervention studies suitable for support in existential crisis in daily healthcare. Aim: To develop and evaluate an intervention targeting existential issues in patients with cancer. Method: First, patients’ important existential issues were defined through a literature review and found to be supporting and detrimental existential issues. Secondly, focus group interviews with healthcare staff working with patients with cancer identified their patients’ existential issues as life and death, meaning, freedom, and relationships and solitude. The healthcare staff furthermore recognized their responsibility to achieve an encounter with the patients, but seemed to need more training in delivering existential support. Thereafter, the intervention was designed as training with individual and group reflections to healthcare staff concerning meaning, death, freedom, and loneliness with five sessions held biweekly. Prior to the training, the staff wrote critical incidents in which existential issues were brought up. The main outcome was determined to be the staff’s confidence in communication. Another potential outcome was the staff’s attitude to care for dying patients. The design was pilot-tested in a surgical clinic. Results: The main intervention study was conducted as a randomized controlled trial with 102 registered nurses and enrolled nurses from hospice, oncology clinic and palliative homecare team. The confidence in communication increased significantly in the training group from baseline to both first and the second follow-ups, whereas attitudes to care for dying patients did not change. Conclusion: Although positive outcome, the project needs to be further tested, to establish the stability of the intervention, broadening the subject groups, and exploring possible extension of the training. In the next step patients’ and staff’ perceptions of given support will be explored.
|
|
| 12. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Development of an existential support training program for healthcare professionals
- 2015
-
Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:6, s. 1701-1709
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Our aim was to describe the developmental process of a training program for nurses to communicate existential issues with severely ill patients.METHOD: The Medical Research Council (MRC) framework for the development and evaluation of complex interventions was used to develop a training program for nurses to communicate about existential issues with their patients. The steps in the framework were employed to describe the development of the training intervention, and the development, feasibility and piloting, evaluation, and implementation phases. The development and feasibility phases are described in the Methods section. The evaluation and implementation phases are described in the Results section.RESULTS: In the evaluation phase, the effectiveness of the intervention was shown as nurses' confidence in communication increased after training. The understanding of the change process was considered to be that the nurses could describe their way of communicating in terms of prerequisites, process, and content. Some efforts have been made to implement the training intervention, but these require further elaboration.SIGNIFICANCE OF RESULTS: Existential and spiritual issues are very important to severely ill patients, and healthcare professionals need to be attentive to such questions. It is important that professionals be properly prepared when patients need this communication. An evidence-based training intervention could provide such preparation. Healthcare staff were able to identify situations where existential issues were apparent, and they reported that their confidence in communication about existential issues increased after attending a short-term training program that included reflection. In order to design a program that should be permanently implemented, more knowledge is needed of patients' perceptions of the quality of the healthcare staff's existential support.
|
|
| 13. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Digital health support - a good thing, but not for me. Experiences of family caregivers and healthcare staff
- 2023
-
Ingår i: British Journal of Guidance & Counselling. - : Informa UK Limited. - 0306-9885 .- 1469-3534. ; 51:1, s. 150-161
-
Tidskriftsartikel (refereegranskat)abstract
- There is an increased belief in the benefits of information and communication technologies (ICT) in healthcare, but the perceived benefits of ICT in family caregiver support need to be explored. This qualitative interview study aimed to describe how family caregivers and healthcare staff in COPD care experience ICT. The results showed that both family caregivers and staff had limited interest in ICT and stated that it might be better for a new generation but not for themselves. Both groups preferred face-to-face meetings instead of contact via ICT. Meeting the needs of an ageing population will require that health services adopt new technologies. Still, the importance of eye contact must not be underestimated, particularly when encountering fragile patients and their spouses.
|
|
| 14. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Health-related quality of life in a nationwide cohort of patients with COPD related to other characteristics
- 2016
-
Ingår i: European Clinical Respiratory Journal. - : Informa UK Limited. - 2001-8525. ; 3
-
Tidskriftsartikel (refereegranskat)abstract
- Background: In chronic obstructive pulmonary disease (COPD), various factors, such as dyspnoea, obstruction, exacerbations, smoking, exercise capacity, and body mass index, have been found to influence mortality and health-related quality of life (HRQOL). In order to identify subgroups of patients needing special attention, the aim of the present study was to explore the relationships between disease progression factors and HRQOL across COPD stages. Methods: Baseline registrations from the Swedish COPD register of demographic, clinical, and patient-reported variables of 7,810 patients are presented. Dyspnoea was measured by the modified Medical Research Council (mMRC) dyspnoea scale and HRQOL by the Clinical COPD Questionnaire (CCQ). Results: This study shows as expected that patients with spirometrically more severe COPD had a significantly higher number of exacerbations and hospitalisations, significantly increasing dyspnoea, significantly decreasing body mass index and exercise capacity, and significantly worsening HRQOL. When adjusting for spirometric stage of COPD, deteriorated HRQOL was predicted by increasing dyspnoea, depression/anxiety, increasing number of exacerbations, and decreased exercise capacity. Further, these data show that an mMRC value of 2 corresponds to a CCQ value of 1.9. Conclusion: The COPD patients suffered from a significant symptom burden, influencing HRQOL. A surprisingly great proportion of patients in spirometric stages II-IV showed marked changes of CCQ, indicating a need for an improved collaboration between clinical pulmonary medicine and palliative care.
|
|
| 15. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Management of COPD, equal treatment across age, gender, and social situation? A register study
- 2016
-
Ingår i: International Journal of Chronic Obstructive Pulmonary Disease. - : Informa UK Limited. - 1178-2005. ; 11, s. 2681-2690
-
Tidskriftsartikel (refereegranskat)abstract
- Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease where treatment decisions should be based on disease severity and also should be equally distributed across age, gender, and social situation. The aim of this study was to determine to what extent patients with COPD are offered evidence-based interventions and how the interventions are distributed across demographic and clinical factors in the sample. Baseline registrations of demographic, disease-related, and management-related variables of 7,810 patients in the Swedish National Airway Register are presented. One-third of the patients were current smokers. Patient-reported dyspnea and health-related quality of life were more deteriorated in elderly patients and patients living alone. Only 34% of currently smoking patients participated in the smoking cessation programs, and 22% of all patients were enrolled in any patient education program, with women taking part in them more than men. Less than 20% of the patients had any contact with physiotherapists or dieticians, with women having more contact than men. Men had more comorbidities than women, except for depression and osteoporosis. Women were more often given pharmacological treatments. With increasing severity of dyspnea, participation in patient education programs was more common. Dietician contact was more common in those with lower body mass index and more severe COPD stage. Both dietician contact and physiotherapist contact increased with deteriorated health-related quality of life, dyspnea, and increased exacerbation frequency. The present study showed that COPD management is mostly equally distributed across demographic characteristics. Only a minority of the patients in the present study had interdisciplinary team contacts. Thus, this data shows that the practical implementation of structured guidelines for treatment of COPD varies, to some extent, with regard to age and gender. Also, disease characteristics influence guideline implementation for each individual patient. Quality registers have the strength to follow-up on compliance with guidelines and show whether an intervention needs to be adapted prior to implementation in health care practice.
|
|
| 16. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Nursing Students’ Attitudes toward Caring for Dying Persons - Development during Nurse Education.
- 2016
-
Ingår i: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background and aim: Most nurses will care for dying patients in their work and nursing education need to prepare students for this task. The attitudes toward dying and death, and communication with patients and families are important issues in palliative care education. The aim was to describe nursing students’ attitudes toward caring for dying patients during undergraduate education, factors influencing changes in attitudes, and how prepared students feel to perform end of life care. Design and methods: This is a longitudinal study exploring the development of nursing students’ attitudes to care for dying patients with the questionnaire Frommelt Attitude Toward Care of the Dying Scale (FATCOD) first, at the beginning of their education (T1), second, at the beginning of the second year (T2) and finally, at the end of the third year of education (T3). FATCOD is a 30 item questionnaire exploring attitudes to care for dying patients; items are rated on a five-point Likert scale. Total FATCOD score, all items summated ranging from 30 to 150, for T1, T2 and T3 was analyzed with ANOVA. Length of theoretical and presence of practical palliative care education were hypothesized to influence changes in attitudes. Students also evaluated support and preparation from education. At all three occasions, 117 nursing students from six universities in Sweden participated. Results and interpretation: The total FATCOD increased from 126 to 132 from T1 to T3. Theoretical palliative care education became significant predictor of changes in attitudes towards caring for dying patients in that five weeks education better predicted changes in attitudes than three weeks. Students with five weeks theoretical palliative care education also felt more prepared and supported by the education to take care of a dying patients. Students did not feel prepared to take care of a dead body or meet families. Although nursing students’ attitudes increased, they need more preparation in palliative care.
|
|
| 17. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Patients’, family members’ and healthcare staffs’ opinions about existential issues as a base for an educational intervention
- 2011
-
Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-4368 .- 2045-435X. ; 1:1
-
Tidskriftsartikel (refereegranskat)abstract
- Objective To explore patients', family members' and healthcare staff's opinions about existential issues important to patients with cancer and their relatives. Methods Two integrative literature reviews were conducted about existential issues among cancer patients and relatives, and interventions to meet these issues. Four focus groups were conducted with healthcare staff working with cancer patients at different stages about patients' existential issues, and staff's responsibility when existential issues are raised. Results In the patient review, existential issues were divided into two themes: struggle to maintain self-identity and threats to self-identity. Relatives' existential issues concerned living both in and beyond the presence of death, with reminders of death, compelling them to respond to life close to death and seek support. Few interventions directed to patients or relatives applicable to everyday healthcare practice were found. Focus groups with staff revealed four categories of patients' existential issues, life and death, meaning, freedom of choice, relationships and solitude. According to staff, their responsibility concerned achieving an encounter with the patient. Conclusion Results from three studies are congruent in that, patients, relatives and staff agree, although in different ways, about the importance of existential issues to patients and relatives. Healthcare staff was aware of the importance of existential issues and are to some extent confident about how to act when these issues are raised by the patients. Ongoing studies The project group now continues implementing findings from these studies in an educational intervention to healthcare staff in different settings, and planning interventions to patients and relatives.
|
|
| 18. |
- Henoch, Ingela, 1956, et al.
(författare)
-
The Swedish Version of the Frommelt Attitude Toward Care of the Dying Scale : Aspects of Validity and Factors Influencing Nurses' and Nursing Students' Attitudes.
- 2014
-
Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 37:1, s. E1-E11
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language. OBJECTIVES:: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients. METHODS:: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used. RESULTS:: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients. CONCLUSIONS:: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients. IMPLICATION FOR PRACTICE:: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.
|
|
| 19. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Training Intervention for Health Care Staff in the Provision of Existential Support to Patients With Cancer : A Randomized, Controlled Study
- 2013
-
Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 46:6, s. 785-794
-
Tidskriftsartikel (refereegranskat)abstract
- Context: When a patient receives a cancer diagnosis, existential issues become more compelling. Throughout the illness trajectory, patients with cancer are cared for in oncology wards, by home care teams or in hospices. Nurses working with these patients are sometimes aware of the patients' existential needs but do not feel confident when discussing these issues.Objectives: To determine the effects of a training intervention, where the focus is on existential issues and nurses' perceived confidence in communication and their attitude toward caring for dying patients.Methods: This was a randomized, controlled trial with a training intervention comprising theoretical training in existential issues combined with individual and group reflection. In total, 102 nurses in oncology and hospice wards and in palliative home care teams were randomized to a training or non-training group. Primary outcomes, confidence in communication, and attitude toward the care of dying patients were measured at baseline, immediately after the training, and five to six months later.Results: Confidence in communication improved significantly in the training group from baseline (before the training) to both the first and second follow-up, that is, immediately after the training and five months later. The attitude toward caring for the dying did not improve in the training group.Conclusion: This study shows that short-term training with reflection improves the confidence of health care staff when communicating, which is important for health care managers with limited resources. Further studies are needed to explore how patients experience the communication skills of health care staff after such training.
|
|
| 20. |
- Henoch, Ingela, 1956, et al.
(författare)
-
Undergraduate nursing students' attitudes and preparedness toward caring for dying persons – A longitudinal study
- 2017
-
Ingår i: Nurse Education in Practice. - : Elsevier BV. - 1471-5953 .- 1873-5223. ; 26, s. 12-20
-
Tidskriftsartikel (refereegranskat)abstract
- Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life care. A longitudinal study was performed with 117 nursing students at six universities in Sweden. The students completed the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) questionnaire at the beginning of first and second year, and at the end of third year of education. After education, the students completed questions about how prepared they felt by to perform end-of-life care. The total FATCOD increased from 126 to 132 during education. Five weeks' theoretical palliative care education significantly predicted positive changes in attitudes toward caring for dying patients. Students with five weeks' theoretical palliative care training felt more prepared and supported by the education to care for a dying patient than students with shorter education. A minority felt prepared to take care of a dead body or meet relatives. © 2017 Elsevier Ltd
|
|
| 21. |
- Lundh Hagelin, Carina, et al.
(författare)
-
Factors influencing attitude toward care of dying patients in first-year nursing students.
- 2016
-
Ingår i: International journal of palliative nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 22:1, s. 28-36
-
Tidskriftsartikel (refereegranskat)abstract
- To describe Swedish first-year undergraduate nursing students' attitudes toward care of dying patients. Possible influences such as age, earlier care experiences, care education, experiences of meeting dying patients and place of birth were investigated.
|
|
| 22. |
|
|
| 23. |
- Melin-Johansson, Christina, 1956-, et al.
(författare)
-
Living in the Presence of Death : An Integrative Literature Review of Relatives' Important Existential Concerns when Caring for a Severely Ill Family Member
- 2012
-
Ingår i: Open Nursing Journal. - : Bentham Open. - 1874-4346. ; 6, s. 1-12
-
Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of this study was to explore relatives’ existential concerns when caring for a seriously ill family member as well as to describe interventions that meet these concerns.Methods: In this integrative literature review we assessed and classified 17 papers, 12 qualitative and 5 quantitative. Literature was sought in the databases Cinahl, PubMed, Psykinfo and Web of Science in September 2009 and in March 2010. Search terms used in different combinations were: family, family caregiver, next of kin, relatives, palliative, palliative care, end-of-life care, existential, spirit*. Data were redrawn from the papers results/findings, and synthesized into a new descriptive content.Results: The results were categorized from 13 papers exploring relatives’ important existential concerns and 4 papers describing interventions aimed to support them in the existential area. A majority of the reviewed papers had been written in Sweden and concerned relatives of patients with cancer. One overarching theme, living in the presence of death, and three categories: responses to life close to death; support when death is near; and beyond the presence of death were created.Conclusion: There is an urgent demand for large-scale studies using accurate methodology, as well as a need to design qualified investigations regarding the effects of various interventions, and to determine which interventions are the most effective in supporting relatives who experience existential distress manifested physically and/or psychologically. There is also a considerable demand for educational interventions among professionals in various healthcare settings to increase their knowledge regarding existential concerns among relatives.
|
|
| 24. |
- Olsson, Anneli G, et al.
(författare)
-
Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin.
- 2010
-
Ingår i: Palliative & supportive care. - 1478-9523. ; 8:1, s. 75-82
-
Tidskriftsartikel (refereegranskat)abstract
- Objective:The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.Methods:35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.Results:Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.Significance of results:There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.
|
|
| 25. |
- Olsson, Anneli G, et al.
(författare)
-
Well-being in patients with amyotrophic lateral sclerosis and their next of kin over time.
- 2010
-
Ingår i: Acta neurologica Scandinavica. - : Hindawi Limited. - 1600-0404 .- 0001-6314. ; 121:4, s. 244-50
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives - The well-being and physical function among patients with ALS and their next of kin was studied over time. Materials and methods - Thirty-five patients with ALS and their next of kin were studied with respect to physical, general and psychological well-being by the visual analogue scale (VAS) every 4-6 months. Physical function in patients was rated by the ALSFRS-R and the Norris scale. Patients and next of kin rated the well-being of themselves and their counterpart. Results - The well-being was stable and there was a relation between the well-being of patients and next of kin throughout the time studied. Next of kin rated the well-being of the patients worse than patients rated themselves, while patients rated the well-being of their next of kin at the same level as their counterpart. Conclusions - The basic state of well-being as well as the interaction between patient and next of kin seem to be factors that influence the well-being of both patients and their next of kin.
|
|
