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Balancing between maintaining and overriding the self: Staff experiences of residents' self-determination in the palliative phases.

https://arctichealth.org/en/permalink/ahliterature309388
Source
Int J Older People Nurs. 2019 Dec; 14(4):e12255
Publication Type
Journal Article
Multicenter Study
Date
Dec-2019
Author
Ramona Schenell
Anneli Ozanne
Susann Strang
Ingela Henoch
Author Affiliation
Institute of Health and Care Sciences, The Sahlgrenska Academy, Gothenburg, Sweden.
Source
Int J Older People Nurs. 2019 Dec; 14(4):e12255
Date
Dec-2019
Language
English
Publication Type
Journal Article
Multicenter Study
Keywords
Adult
Advance Care Planning
Aged
Attitude of Health Personnel
Communication Barriers
Female
Health Services for the Aged
Homes for the Aged
Hospice and Palliative Care Nursing
Humans
Interviews as Topic
Male
Personal Autonomy
Sweden
Abstract
To investigate, from the staff perspective, residents' self-determination during the palliative phase while in residential care.
Residential care facilities have a high prevalence of palliative care needs and dependency. The ability of residents to make and execute decisions may be hindered by their cognitive and physical limitations. There is a need to investigate how residents' self-determination is affected during the palliative phase in residential care.
Twenty individual, semi-structured interviews with Registered Nurses, enrolled nurses and physicians working in residential care facilities were analysed with inductive qualitative content analysis.
The overarching main theme, Balancing between maintaining and overriding the residents' self, illuminated how strengthened self-determination affected the residents' self in a positive way, while undermined self-determination affected the residents' self in a negative way. Factors that strengthened self-determination were facilitating the residents' own decision making, acting in accordance with the residents' wishes and acting as the residents' spokesperson when necessary. Factors that undermined self-determination were residents' dependence, others setting the terms, for example, being controlled by routines, insufficient communication, for example, lacking end-of-life care planning and others crossing the boundaries of one's personal sphere.
There are serious threats to residents' self-determination but also strategies to cope with these threats. Physical and cognitive frailty and other people setting the terms hinder both making and executing decisions. However, staff can strengthen residents' self-determination and assist in the presentation of residents' self by adopting a relational view of autonomy and by taking personal preconditions into account. There is a need to come to terms with the lack of end-of-life care planning and to give residents a voice in these matters. Implementing a palliative approach early in the illness trajectory could facilitate communication about end-of-life care both within the group of staff and among the residents, relatives and staff.
To maintain residents' self-determination and protect their self, staff need knowledge about residents' life stories and personal preconditions. This in turn requires continuity of care and spending time with residents to build relationships. Implementing an early palliative approach with a focus on factors that promote quality of life for each resident might facilitate communication and enhance decision making both in everyday life and in planning for end-of-life care.
PubMed ID
31276307 View in PubMed
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Development of the 6S Dialogue Tool to facilitate person-centred palliative care.

https://arctichealth.org/en/permalink/ahliterature310396
Source
J Adv Nurs. 2019 Nov; 75(11):3138-3146
Publication Type
Journal Article
Date
Nov-2019
Author
Ingela Henoch
Jane Österlind
Author Affiliation
Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Source
J Adv Nurs. 2019 Nov; 75(11):3138-3146
Date
Nov-2019
Language
English
Publication Type
Journal Article
Keywords
Adult
Aged
Aged, 80 and over
Female
Hospice and Palliative Care Nursing - standards
Humans
Male
Middle Aged
Palliative Care - standards
Patient-Centered Care - standards
Practice Guidelines as Topic
Psychometrics
Qualitative Research
Sweden
Abstract
To develop and psychometrically test the 6S Dialogue Tool.
The 6S Dialogue Tool was elaborated to provide knowledge to nurses about patients' preferences in congruence with the 6S person-centred palliative care model, which includes the S-concepts of self-image, symptom relief, self-determination, social relationships, synthesis and strategies. The tool needs to be scrutinized for appropriateness.
A qualitative study investigating construct validity of the 6S Dialogue Tool.
Forty-six patients in palliative care services in Sweden responded to 15 questions from May 2015 - August 2016. Responses were analysed with qualitative content analysis.
Six categories, capturing the meaning of the 6S-concepts, were formulated: Maintaining everyday life; Challenges in everyday life; Maintaining control; Maintaining selected relationships; Appraisal of life; and Appraisal of the future.
The responses to the 6S Dialogue Tool questions reflect the intent of the 6S-concepts. Nurses should integrate the 6S-concepts and the questions in their approach to facilitate to co-create meaningful palliative care in dialogue with the patient.
Patients' preferences must be explored to co-create palliative care in accordance with their own needs and beliefs. The 6S Dialogue Tool questions are suitable for obtaining patients' preferences and could be used as an approach in palliative care. Patients, families and nurses will have the potential to co-create palliative care and to improve possibilities for patients to have an appropriate death.
??: ?????6S????? ??: 6S??????????????6S??????????????????,6S????????????????????????????????????????? ??: 6S??????????????? ??: ?2015?5??2016?8?,??46???????????????15??????????????????????? ??: ???6S???????????:??????;????????;????;??????;????;????? ??: ?6S??????????????6S????????6S?????????????,????????,???????????????? ??: ?????????????,?????????????6S??????????????,??????????????6S???????????????????????????,??????????????.
PubMed ID
31222784 View in PubMed
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Ethical dilemmas around the dying patient with stroke: a qualitative interview study with team members on stroke units in Sweden.

https://arctichealth.org/en/permalink/ahliterature258547
Source
J Neurosci Nurs. 2014 Jun;46(3):162-70
Publication Type
Article
Date
Jun-2014
Author
Helene Eriksson
Gisela Andersson
Louise Olsson
Anna Milberg
Maria Friedrichsen
Source
J Neurosci Nurs. 2014 Jun;46(3):162-70
Date
Jun-2014
Language
English
Publication Type
Article
Keywords
Attitude of Health Personnel
Attitude to Death
Communication Barriers
Female
Hospice and Palliative Care Nursing - ethics
Humans
Male
Neuroscience Nursing - ethics
Nurses' Aides - ethics - psychology
Nursing Staff, Hospital - ethics - psychology
Nursing, Team - ethics
Palliative Care - ethics
Physical Therapists - ethics - psychology
Qualitative Research
Right to Die - ethics
Stroke - nursing - rehabilitation
Sweden
Terminal Care - ethics
Abstract
In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on "nondecisions" about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had "problems holding to the decision." The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was "communication barriers," a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.
PubMed ID
24796473 View in PubMed
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Factors influencing attitude toward care of dying patients in first-year nursing students.

https://arctichealth.org/en/permalink/ahliterature271455
Source
Int J Palliat Nurs. 2016 Jan;22(1):28-36
Publication Type
Article
Date
Jan-2016
Author
Carina Lundh Hagelin
Christina Melin-Johansson
Ingela Henoch
Ingrid Bergh
Kristina Ek
Kina Hammarlund
Charlotte Prahl
Susann Strang
Lars Westin
Jane Österlind
Maria Browall
Source
Int J Palliat Nurs. 2016 Jan;22(1):28-36
Date
Jan-2016
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Age Factors
Attitude of Health Personnel
Attitude to Death
Female
Hospice and Palliative Care Nursing
Humans
Male
Middle Aged
Palliative Care - psychology
Sex Factors
Socioeconomic Factors
Students, Nursing - psychology
Surveys and Questionnaires
Sweden
Terminal Care - psychology
Young Adult
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.
The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) was used in six universities. Descriptive statistics and regression analysis were used.
Some 371 students (67.3%) reported overall positive attitude toward caring for dying patients (total mean FATCOD 119.5, SD 10.6) early in their first semester. Older students, students with both earlier care experience and earlier education, those with experience of meeting a dying person, and students born in Sweden reported the highest scores, a more positive attitude.
Age, earlier care experience and education, experiences of meeting a dying person and place of birth seems to affect students' attitudes toward care of the dying and need to be considered among nursing educators.
PubMed ID
26804954 View in PubMed
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Family caregiver satisfaction with home-based nursing and physician care over the palliative care trajectory: results from a longitudinal survey questionnaire.

https://arctichealth.org/en/permalink/ahliterature116632
Source
Palliat Med. 2013 Jul;27(7):632-8
Publication Type
Article
Date
Jul-2013
Author
Denise N Guerriere
Brandon Zagorski
Peter C Coyte
Author Affiliation
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON M5T 3M6, Canada. denise.guerriere@utoronto.ca
Source
Palliat Med. 2013 Jul;27(7):632-8
Date
Jul-2013
Language
English
Publication Type
Article
Keywords
Canada - epidemiology
Caregivers - psychology
Cohort Studies
Home Nursing - standards
Hospice and Palliative Care Nursing - standards
Humans
Longitudinal Studies
Personal Satisfaction
Physicians - standards
Quality of Life - psychology
Questionnaires
Abstract
A limited understanding of satisfaction with home-based palliative care currently exists.
This study measured family caregivers' satisfaction with home-based physician and nursing palliative care services, and explored predictors of satisfaction, across the palliative care trajectory.
A longitudinal, cohort design was used. Family caregivers were interviewed by telephone by-weekly from palliative care admission until death. Satisfaction was assessed using the Quality of End-of-Life care and Satisfaction with Treatment (QUEST) questionnaire. Multiple logistic regression models were used to determine the extent to which demographic, quality of care, and service related variables predicted satisfaction.
Family caregivers (N=104) of palliative care patients.
Each of the nine quality of care parameters were consistently found to be significant predictors of overall satisfaction with palliative care.
The results may inform key health policy issues. Specifically, knowledge of how quality of care parameters predict family caregivers' satisfaction over the course of the palliative care trajectory may aid managers responsible for resource allocation and the determination of home care standards.
PubMed ID
23376787 View in PubMed
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A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses.

https://arctichealth.org/en/permalink/ahliterature283060
Source
Eur J Oncol Nurs. 2016 Jun;22:23-9
Publication Type
Article
Date
Jun-2016
Author
Hakima Karidar
Helene Åkesson
Stinne Glasdam
Source
Eur J Oncol Nurs. 2016 Jun;22:23-9
Date
Jun-2016
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Attitude of Health Personnel
Child
Child of Impaired Parents - legislation & jurisprudence
Hospice and Palliative Care Nursing
Humans
Intention
Neoplasms - nursing
Oncology Nursing
Parents
Professional-Family Relations
Sweden
Abstract
Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the nurses' perspective.
Semi-structured interviews with nine nurses in palliative oncology in Southern Sweden. Latent content analysis was carried out, inspired by Lundmann and Graneheim.
Parents are gatekeepers to the children's involvement and meetings with the healthcare professionals. Therefore the nurses were dependent on the parents for contact with their children. Additionally, nurses were subject to the structural frame of their working environment in terms of time, economy, resources and the medical logic ruling the priorities for nursing during their daily working day. The opportunities to pay attention to the children of patients were limited, despite good intentions, willingness and a favourable legal framework. Teenagers were regarded as a challenge, and per se they challenged the nurses' opportunities to gain control of the meetings and situations around the families.
Often nurses did not see and acknowledge the children of the palliative patient. They knew that the children were there and that it was important that they were there, but they challenged the order in the working environment in relation to time-allocated tasks and working flow. In the working environment patients were prioritised over relatives. From the perspective of nurses, there is a gap between the intentions of the Swedish law and the interactions between nurses and children.
PubMed ID
27179889 View in PubMed
Less detail

How do nurses in palliative care perceive the concept of self-image?

https://arctichealth.org/en/permalink/ahliterature279267
Source
Scand J Caring Sci. 2015 Sep;29(3):454-61
Publication Type
Article
Date
Sep-2015
Author
Margareth Jeppsson
Bibbi Thomé
Source
Scand J Caring Sci. 2015 Sep;29(3):454-61
Date
Sep-2015
Language
English
Publication Type
Article
Keywords
Adult
Female
Hospice and Palliative Care Nursing
Humans
Interviews as Topic
Male
Middle Aged
Nurse's Role
Nurse-Patient Relations
Nurses - psychology
Nursing Methodology Research
Palliative Care - psychology
Qualitative Research
Self Concept
Sweden
Young Adult
Abstract
Nursing research indicates that serious illness and impending death influence the individual's self-image. Few studies define what self-image means. Thus it seems to be urgent to explore how nurses in palliative care perceive the concept of self-image, to get a deeper insight into the concept's applicability in palliative care.
To explore how nurses in palliative care perceive the concept of self-image.
Qualitative descriptive design.
In-depth interviews with 17 nurses in palliative care were analysed using phenomenography. The study gained ethical approval.
The concept of self-image was perceived as both a familiar and an unfamiliar concept. Four categories of description with a gradually increasing complexity were distinguished: Identity, Self-assessment, Social function and Self-knowledge. They represent the collective understanding of the concept and are illustrated in a 'self-image map'. The identity-category emerged as the most comprehensive one and includes the understanding of 'Who I am' in a multidimensional way.
The collective understanding of the concept of self-image include multi-dimensional aspects which not always were evident for the individual nurse. Thus, the concept of self-image needs to be more verbalised and reflected on if nurses are to be comfortable with it and adopt it in their caring context. The 'self-image map' can be used in this reflection to expand the understanding of the concept. If the multi-dimensional aspects of the concept self-image could be explored there are improved possibilities to make identity-promoting strategies visible and support person-centred care.
PubMed ID
24861770 View in PubMed
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Leading an intervention for family caregivers-a part of nursing in palliative care.

https://arctichealth.org/en/permalink/ahliterature283439
Source
Int J Palliat Nurs. 2017 Apr 02;23(4):166-172
Publication Type
Article
Date
Apr-02-2017
Author
Maja Holm
Ida Goliath
Hanna Södlind
Anette Alvariza
Source
Int J Palliat Nurs. 2017 Apr 02;23(4):166-172
Date
Apr-02-2017
Language
English
Publication Type
Article
Keywords
Adult
Attitude of Health Personnel
Caregivers
Female
Hospice and Palliative Care Nursing
Humans
Leadership
Middle Aged
Narration
Nurse's Role
Nurses
Practice Patterns, Nurses'
Qualitative Research
Sweden
Abstract
Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.
PubMed ID
28486067 View in PubMed
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Nurses' experiences of compassion when giving palliative care at home.

https://arctichealth.org/en/permalink/ahliterature309559
Source
Nurs Ethics. 2020 Feb; 27(1):194-205
Publication Type
Journal Article
Date
Feb-2020
Author
Siri Andreassen Devik
Ingela Enmarker
Ove Hellzen
Author Affiliation
Centre for Care Research Mid-Norway, Norway; Nord University, Norway.
Source
Nurs Ethics. 2020 Feb; 27(1):194-205
Date
Feb-2020
Language
English
Publication Type
Journal Article
Keywords
Adult
Empathy
Female
Home Care Services - standards
Hospice and Palliative Care Nursing - standards
Humans
Male
Middle Aged
Narration
Norway
Nurse-Patient Relations
Nurses - psychology
Palliative Care - standards
Qualitative Research
Abstract
Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised.
This study aimed to explore nurses' experiences of compassion when caring for palliative patients in home nursing care.
A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway.
The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data.
The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient's plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes.
In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content.
The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient - and a nurse perspective.
PubMed ID
31023157 View in PubMed
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Palliative care nursing in the virtual realm.

https://arctichealth.org/en/permalink/ahliterature104416
Source
Int J Palliat Nurs. 2014 Apr;20(4):161-3
Publication Type
Article
Date
Apr-2014

14 records – page 1 of 2.