| 1. |
- Strang, Susann, 1953, et al.
(författare)
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Family Caregivers' Heavy and Overloaded Burden in Advanced Chronic Obstructive Pulmonary Disease
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:12, s. 1768-1772
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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.
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| 2. |
- Strang, Susann, 1953, et al.
(författare)
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Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: A qualitative study of caregivers' and professionals' experiences in Swedish hospitals
- 2019
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 9
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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.
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| 3. |
- Henoch, Ingela, 1956, et al.
(författare)
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Development of an existential support training program for healthcare professionals
- 2015
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:6, s. 1701-1709
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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.
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| 4. |
- Henoch, Ingela, 1956, et al.
(författare)
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Health-related quality of life in a nationwide cohort of patients with COPD related to other characteristics
- 2016
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Ingår i: European Clinical Respiratory Journal. - : Informa UK Limited. - 2001-8525. ; 3
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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.
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| 5. |
- Henoch, Ingela, 1956, et al.
(författare)
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Management of COPD, equal treatment across age, gender, and social situation? A register study
- 2016
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Ingår i: International Journal of Chronic Obstructive Pulmonary Disease. - : Informa UK Limited. - 1178-2005. ; 11, s. 2681-2690
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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.
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| 6. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing Students’ Attitudes toward Caring for Dying Persons - Development during Nurse Education.
- 2016
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Ingår i: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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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.
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| 7. |
- Henoch, Ingela, 1956, et al.
(författare)
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Undergraduate nursing students' attitudes and preparedness toward caring for dying persons – A longitudinal study
- 2017
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Ingår i: Nurse Education in Practice. - : Elsevier BV. - 1471-5953 .- 1873-5223. ; 26, s. 12-20
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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
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| 8. |
- Lundh Hagelin, Carina, et al.
(författare)
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Factors influencing attitude toward care of dying patients in first-year nursing students.
- 2016
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Ingår i: International journal of palliative nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 22:1, s. 28-36
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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.
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| 9. |
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| 10. |
- Ozanne, Anneli, 1978, et al.
(författare)
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Is blogging a new form of communication in palliative health care? A qualitative research study
- 2018
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Ingår i: International Journal of Palliative Nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 24:5, s. 238-245
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To illuminate experiences of living with life-threatening diseases as described in blogs and the experience of blogging about these matters. Methods: A secondary analysis of 21 blogs was performed. Results: It was difficult for bloggers to accept what they perceived to be the unacceptable aspects of having an life-threatening disease. They searched for hope and acceptance, and tried to manage their life. They felt strengthened by supportive encounters with health professionals, relatives, friends, and from their blogging. However, they also felt that they were set aside in relation to both health professionals and relatives. Conclusion: These patients appreciated being able to express their feelings and received support from their readers. Even if patient blogs can be used in health care, research and education, there is a lack of research studies that have examined the benefits of using blogging for any of these purposes. © 2018 MA Healthcare Ltd.
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