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Israelsson-Skogsberg, Å., Persson, C., Markström, A. & Hedén, L. (2020). Children with home mechanical ventilation: parents' health-related quality of life, family functioning and sleep. Acta Paediatrica
Open this publication in new window or tab >>Children with home mechanical ventilation: parents' health-related quality of life, family functioning and sleep
2020 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed) Epub ahead of print
Abstract [en]

Aim

Children requiring home mechanical ventilation (HMV) have grown in number and complexity. Parents of children with HMV are often responsible for the advanced homecare. This study explored the health‐related quality of life (HRQoL), family functioning and sleep in parents of children with HMV. A secondary aim was to explore the impact on HRQoL, family functioning and sleep of selected potential determinants.

Methods

Questionnaires were completed by 45 mothers and 40 fathers, to 55 children receiving HMV. Parents were identified via respiratory clinics in the Swedish national quality register for oxygen and home respiratory treatment and invited to participate between December 2016 and December 2018.

Results

There were no differences between mothers and fathers overall HRQoL or family functioning reports, although differences within the physical (P < .043) and cognitive (P < .009) functioning dimensions were found. One of four parents reported moderate or severe insomnia. The variability in HRQoL and family functioning was predicted by HMV mode and sleep quality to an extent of 45% and 21%, respectively.

Conclusion

Sleep quality and the child's HMV mode predicted parental HRQoL and family functioning. The results underscore the importance of evaluating parents' sleep and of being aware that invasive ventilation influences parental HRQoL and family functioning.

Place, publisher, year, edition, pages
John Wiley & Sons, 2020
Keywords
family functioning, health‐related quality of life, home mechanical ventilation, parents, sleep
National Category
Pediatrics
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-93066 (URN)10.1111/apa.15177 (DOI)
Available from: 2020-03-23 Created: 2020-03-23 Last updated: 2020-03-25
Persson, C. & Benzein, E. (2020). Hälsostödjande familjesamtal (2ed.). In: Birgitta Andershed, Britt-Marie Ternestedt & Cecilia Håkanson (Ed.), Palliativ vård: begrepp & perspektiv i teori och praktik. Lund: Studentlitteratur AB
Open this publication in new window or tab >>Hälsostödjande familjesamtal
2020 (Swedish)In: Palliativ vård: begrepp & perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt & Cecilia Håkanson, Lund: Studentlitteratur AB, 2020, 2Chapter in book (Other (popular science, discussion, etc.))
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2020 Edition: 2
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:lnu:diva-93067 (URN)
Available from: 2020-03-23 Created: 2020-03-23 Last updated: 2020-04-02
Axelsson, L., Benzein, E., Lindberg, J. & Persson, C. (2020). Processes toward the end of life and dialysis withdrawal Physicians' and nurses' perspectives. Nursing Ethics, 27(2), 419-432
Open this publication in new window or tab >>Processes toward the end of life and dialysis withdrawal Physicians' and nurses' perspectives
2020 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 27, no 2, p. 419-432Article in journal (Refereed) Published
Abstract [en]

Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

Place, publisher, year, edition, pages
Sage Publications, 2020
Keywords
Areas of practice, empirical approaches, theory, philosophical perspectives, topic areas
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-92997 (URN)10.1177/0969733019848050 (DOI)000514702200009 ()31185802 (PubMedID)
Available from: 2020-03-19 Created: 2020-03-19 Last updated: 2020-03-19Bibliographically approved
Israelsson, J., Persson, C., Bremer, A., Strömberg, A. & Årestedt, K. (2019). Dyadic effects of type D personality and perceived control on health-related quality of life in cardiac arrest survivors and their spouses using the actor–partner interdependence model. European Journal of Cardiovascular Nursing, 1-8
Open this publication in new window or tab >>Dyadic effects of type D personality and perceived control on health-related quality of life in cardiac arrest survivors and their spouses using the actor–partner interdependence model
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2019 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, p. 1-8Article in journal (Refereed) Epub ahead of print
Abstract [en]

Background: There is a lack of knowledge about factors associated with health-related quality of life in cardiac arrest survivors and their spouses. In addition, survivors and spouses are likely to affect each other’s health-related quality of life.

Aims: The aim was to investigate if a distressed personality and perceived control among cardiac arrest survivors and their spouses were associated with their own and their partner’s health-related quality of life.

Methods: This dyadic cross-sectional study used the actor–partner interdependence model to analyse associations between a distressed personality (type D personality), perceived control (control attitudes scale), and health-related quality of life (EQ index and EQ visual analogue scale).

Results: In total, 126 dyads were included in the study. Type D personality and perceived control in cardiac arrest survivors were associated with their own health-related quality of life. In their spouses, a significant association was found for type D personality but not for perceived control. In addition, type D personality and perceived control in survivors were associated with health-related quality of life in their spouses.

Conclusions: Type D personality and perceived control are factors that might be considered during post cardiac arrest, because of the associations with health-related quality of life in survivors and spouses. More research is needed to test psychosocial interventions in the cardiac arrest population in order to improve health-related quality of life.

Place, publisher, year, edition, pages
Sage Publications, 2019
Keywords
Heart arrest, Survivor, Partner, Health, Quality of life, Dyads
National Category
Cardiac and Cardiovascular Systems
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-90228 (URN)10.1177/1474515119890466 (DOI)000498130000001 ()31752502 (PubMedID)
Available from: 2019-11-22 Created: 2019-11-22 Last updated: 2020-03-13
Axelsson, L., Benzein, E., Lindberg, J. & Persson, C. (2019). End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study. BMC Palliative Care, 18(1), 1-10, Article ID 89.
Open this publication in new window or tab >>End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study
2019 (English)In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 18, no 1, p. 1-10, article id 89Article in journal (Refereed) Published
Abstract [en]

Background: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis. Methods: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data. Results: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance. Conclusions: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

Place, publisher, year, edition, pages
BioMed Central, 2019
Keywords
End-of-life care, Palliative care, End-stage kidney disease, Hemodialysis, Physicians, Nurses, Focus group interviews
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-90852 (URN)10.1186/s12904-019-0481-y (DOI)000504919900001 ()31666038 (PubMedID)
Available from: 2020-01-10 Created: 2020-01-10 Last updated: 2020-01-10Bibliographically approved
Årestedt, L., Persson, C., Ramgard, M. & Benzein, E. (2018). Experiences of encounters with healthcare professionals through the lenses of families living with chronic illness. Journal of Clinical Nursing, 27(3-4), 836-847
Open this publication in new window or tab >>Experiences of encounters with healthcare professionals through the lenses of families living with chronic illness
2018 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 3-4, p. 836-847Article in journal (Refereed) Published
Abstract [en]

Aims and objectivesTo describe and explore the experience of healthcare encounters in families living with chronic illness. BackgroundLiving with chronic illness is a family concern and often includes frequent encounters with healthcare professionals. These encounters affect how persons with illness and family members handle everyday life. Disease-related explanations are perceived by healthcare professionals as being of higher importance than the actual experience of illness, even though patients are concerned with issues involving their everyday life. DesignA descriptive design with a qualitative approach. MethodsNarrative family interviews were conducted with twelve families, using a qualitative content analysis. ResultsOne main category was indicated following analysis, specifically The impact of an accompanying family member. Additionally, three subcategories were revealed; The importance of collaboration, Mutual understanding, A desire to be confirmed in one's illness. Conclusions and relevance to clinical practiceHaving a participating family member increased the sense of power in families during encounters with healthcare professionals. This participation constitutes a level of support, making it easier for families to handle everyday life due to illness. Family members are, in most cases, included in discussions and decisions, both before and after encounters, and it should be a natural for healthcare professionals to invite them to the encounter too. This is an offer that may not fit every family, but the person with illness or the family should at least have the opportunity to choose.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2018
Keywords
content analysis, experiences, family, family systems nursing, healthcare encounters, healthcare professionals, Swedish
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-71447 (URN)10.1111/jocn.14126 (DOI)000425733600065 ()29076223 (PubMedID)2-s2.0-85042299413 (Scopus ID)
Available from: 2018-03-09 Created: 2018-03-09 Last updated: 2019-08-29Bibliographically approved
Tryselius, K., Benzein, E. & Persson, C. (2018). Ideas of home in palliative care research: a concept analysis. Nursing Forum, 53(3), 383-391
Open this publication in new window or tab >>Ideas of home in palliative care research: a concept analysis
2018 (English)In: Nursing Forum, ISSN 0029-6473, Vol. 53, no 3, p. 383-391Article in journal (Refereed) Published
Abstract [en]

1 Aim

To explore the concept of home and its' expressed spatialities in current palliative care research.

2 Background

Home is a central environment for living, caring, and dying. However, pure investigations of the sets of ideas linked to the concept seemed missing. Although identified as an important location, spatial perspectives expressed through the concept of home appeared unexplored.

3 Design

Rodgers' evolutionary concept analysis.

4 Data sources

Scientific articles published between January 2009 and September 2015.

5 Review methods

Rodgers' evolutionary concept analysis. Resulting attributes were explored from two geographically informed spatial perspectives.

6 Results

As main results, six attributes were identified and explored: Home as actor—capable of acting; emotional environment—something people have feelings for; place—a part of personal identity and a location; space—complex and relational spatial connections and a site for care; setting—passive background and absolute space; becoming—a fluid spatiality constantly folded. Examples of attributes and suggestions for further concept development were identified.

7 Conclusions

The concept reflects various sets of ideas as well as expressing both relational and absolute perspectives of space. The most challenging for nursing research and practice seems to be investigation, operationalization, and testing the implementation of sets of ideas reflecting a relational thinking of space.

Place, publisher, year, edition, pages
John Wiley & Sons, 2018
Keywords
home, nursing, palliative care research, Rodgers' evolutionary concept analysis, space
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-78775 (URN)10.1111/nuf.12257 (DOI)000445762700015 ()29687445 (PubMedID)2-s2.0-85045846909 (Scopus ID)
Available from: 2018-11-12 Created: 2018-11-12 Last updated: 2019-08-29Bibliographically approved
Persson, C. & Sundin, K. (2017). Fenomenologisk hermeneutisk tolkningsmetod – ett dialektiskt förhållningssätt (2ed.). In: Maria Henricson (Ed.), Vetenskaplig teori och metod: (pp. 325-338). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Fenomenologisk hermeneutisk tolkningsmetod – ett dialektiskt förhållningssätt
2017 (Swedish)In: Vetenskaplig teori och metod / [ed] Maria Henricson, Lund: Studentlitteratur AB, 2017, 2, p. 325-338Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2017 Edition: 2
National Category
Other Medical Sciences not elsewhere specified
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-93068 (URN)9789144113289 (ISBN)
Available from: 2020-03-23 Created: 2020-03-23 Last updated: 2020-04-01Bibliographically approved
Persson, C., Benzein, E., Saveman, B.-I. & Syrén, S. (2017). Forskningsrön kring Hälsostödjande familjesamtal (2ed.). In: E. Benzein, M. Hagberg, B-I. Saveman (Ed.), Att möta familjer inom vård och omsorg: (pp. 87-106). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Forskningsrön kring Hälsostödjande familjesamtal
2017 (Swedish)In: Att möta familjer inom vård och omsorg / [ed] E. Benzein, M. Hagberg, B-I. Saveman, Lund: Studentlitteratur AB, 2017, 2, p. 87-106Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2017 Edition: 2
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-81786 (URN)9789144115870 (ISBN)
Available from: 2019-04-10 Created: 2019-04-10 Last updated: 2019-04-10Bibliographically approved
Benzein, E., Persson, C., Saveman, B.-I. & Syrén, S. (2017). Metoder inom familjecentrerad forskning (2ed.). In: E. Benzein, M. Hagberg, B-I. Saveman (Ed.), Att möta familjer inom vård och omsorg: (pp. 107-122). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Metoder inom familjecentrerad forskning
2017 (Swedish)In: Att möta familjer inom vård och omsorg / [ed] E. Benzein, M. Hagberg, B-I. Saveman, Lund: Studentlitteratur AB, 2017, 2, p. 107-122Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2017 Edition: 2
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-81787 (URN)9789144115870 (ISBN)
Available from: 2019-04-10 Created: 2019-04-10 Last updated: 2019-04-10Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-1876-213X

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